Behind the surface

Imagine...

2011-11-08T14:22:00.000-08:00

(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning.)

Dear Dr Collins,

I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.

Now imagine that flu never goes away.

Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.

Now imagine you have that hangover all the time.

Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.

Now imagine having jet lag every day.

Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.

Now imagine that burning pain for years without end.

Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.

If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.

You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.

You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.

Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.

When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.

When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.

At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).

While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?

$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).

This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...

You would want someone to help you if you had this disease, wouldn’t you?

Thank you for taking a moment to imagine what my life is like.

Sincerely,
Michelle Strausbaugh

(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)

(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)

How sexism gave men a "woman's disease"

2010-10-30T00:48:00.000-07:00

There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In his post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease."

Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.

Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.

So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.

If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.

Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.

__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.

"All you have is CFS"

2010-10-10T19:38:00.000-07:00

When Mary Schweitzer went to her local hospital for an infusion of a drug her doctor had prescribed for her, this is what she was told:

“I’m sorry,” the doctor said, “we can’t give you this. It’s a strong drug, and all you have is CFS.”

But I have cytomegalovirus, and Vistide is approved for cytomegalovirus.

“We know. And if you had something serious, like AIDS, or were on chemo from cancer, we would give it to you. But all you have is CFS.”

But you told my specialist you would administer it to me.

“Yes, but we hadn’t seen your files yet. We didn’t know you have CFS.”

All you have is CFS.

A part of me really wants to punch the guy. But then, how would he know CFS is a potentially fatal, multi-systemic disease that, like AIDS and cancer, damages the immune system? He didn't learn about it at medical school. If he went to the CDC website, it lists "professional counseling" as it's top treatment option. And why would he not believe the CDC?

Head. Table. Bang.

"When the body is rendered useless..."

2010-08-29T00:34:00.000-07:00

From The Sound Of A Wild Snail Eating, as featured on NPR's Weekend Edition. The quote is too long for Twitter or Facebook, but so lovely I just had to post it somewhere. So relate to the mind running "like a bloodhound" or being "flooded with storms of thought, unspeakable sadness, and intolerable loss" as well as the way time is both painstakingly slow and instantaneous at the same time. The discussion at NPR also reminded me of my desire for a terrarium. Some connection to the forest that I miss so much.

When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive. Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness, and intolerable loss.

Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past. Time unused and only endured still vanishes, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.

Did Alter alter much?

2010-08-24T14:25:00.000-07:00

No energy for a thoughtful, analytical post. But here are a few thoughts about yesterday's publication of the long-awaited paper from Harvey Alter and company (the paper that I mentioned had been withheld in my last post), as well as the media coverage which followed:

1. This was a much smaller study than I was expecting. It was only 37 patients and 40 controls. May explain why Big Pharma still sounds so tentative, despite the accompanying commentary [note: PDF] that suggested clinical trials of anti-retrovirals for ME/CFS patients would be appropriate to help answer the question of causation.

2. I was surprised that the angle journalists took (perhaps based on the spin from tele-news conference & CFIDS Association) was "new hope for CFS patients" rather than "11 million people might have a leukemia-causing retrovirus and it's tainted the blood supply!" I would have thought the later would have sold more papers, but that's just me.

3. What I really appreciated about this paper was that it took the whole XMRV discussion beyond "she found it; he didn't" to a whole new level: we might be looking for a family mouse-derived retroviruses. This is what good science does. What has been so frustrating about the research thus far is that because they hadn't been actually replicating the original Lombardi paper in Science, they were simply showing us how NOT to find the virus. It really wasn't moving us forward but it was wasting a lot of time.

4. It sounds like Alter is saying that XMRV is one variant of a family mouse-derived leukemia viruses. Could the DeFreitas virus be among them?

Just a few thoughts after yesterday. Off to rest. Totally crashing after the excitement.

Okay -- just one more question after talking to my boyfriend in the UK, why are papers in the UK not reporting on the Alter paper? Have they all decided that the matter is settled from the earlier negative studies?

Pain and privation

2010-07-21T11:36:00.000-07:00

Being sick sucks because of the usual stuff like pain and weakness. But then there are the bureaucratic aspects of being sick that also suck -- and suck hard.

The clinic director at my doctor’s office has changed the narcotic pain management policy, capping the amount of narcotics each person can take at 180mg of morphine a day or equivalent. Since I take 180mg of morphine a day PLUS 60mg of hydrocodone (Vicodin), this will mean a significant decrease in the amount of pain medication I will be prescribed. Indeed I'm already feeling the affect of this new policy with a 15mg/day reduction in my Vicodin. It's only a small amount so I'm not suffering terribly, but it's enough so that I'm not sleeping as well. Which means that I'm back to sleeping over 12 hours a day but waking up feeling like I haven't slept at all.

I only found out about the new policy when Nurse K., who does my anticoagulation therapy, was reviewing my medications during my last INR check and we discovered a discrepancy between how much Vicodin I was taking (as that’s been the dose I’ve taken for well over a year now) and how much had been prescribed when Dr. H. wrote the refill a few days earlier. After consulting with Dr. H., she told me about the policy change and explained that he is now tapering me off the Vicodin. Of course, my pain level has not changed as a result of the new policy (hell if it worked that way, I’d have them change a few more policies!) and I’m at a loss to understand why they would fuck with an established pain management plan. Hopefully when I see Dr. H. on Friday there will be some way of asking for a review of my case so I can go back to the level of pain meds I was on in June.

A week after learning about the change in pain policy, I got a letter telling me my home care worker benefits are being cut because of the massive hole in the state budget. While I imagine my mom and adopted dad will be able to work out some plan to get the laundry done and clean the house (despite the fact that Mom works three jobs and Dad spends 8 hours a day doing heavy construction work in addition to multiple hours commuting), this does present a significant problem when it comes to eating and bathing. I’ve been getting assistance with meals through either a home care worker or Meals on Wheels (which is also being cut) for over five years and I’m much sicker now than I was five years ago. Considering that it often takes me well over 20 minutes just to make a bowl of cereal when I wake up in the afternoon, cooking on a regular basis is not particularly feasible.

So I've called my state representative and state senator. Talked with my case worker. Started writing an op/ed piece for my local newspaper. Considered seeing if friends in the local area might be willing to participate in a "casserole circle" and commit to providing one casserole a month (because, you know, it's not like they don't have busy lives and struggle to feed themselves healthy food on a regular basis too! ::end sarcasm::). And, of course, worried. About getting sicker. About being in more pain. About being even more isolated than I already am.

And then there was the whole XMRV saga, which has hit surreal levels over the last month. In mid-June there was a leak that Harvey Alter (doesn't he look like a nice man in his Wiki pic?), a scientist at the NIH, had replicated the Lombardi paper, finding XMRV in 80% of CFS patients. But just as CFS patients began to celebrate (yay, we do have a retrovirus!), we suddenly heard that the Department of Health and Human Services was withholding Alter's paper (which was already in galley proofs!), along with a CDC study that didn't find XMRV. When the CDC study was then published two days later, it sent conspiracy theorists into a frenzy. Especially when even the uber-conservative CFIDS Association said the CDC study was "a study designed to not detect XMRV using a hodge-podge sample set." Now the word is that Alter's paper is due to be published in a few weeks and that even after completing the additional testing requested, he found the same results. But until the paper is published, no one is really happy.

Normally the CDC finding wouldn't have bothered me. It was certainly the result we all expected in the ME/CFS community. I mean, one of the main authors said he didn't think they would find anything before they even started their study (scientific detachment at its finest!). And new research is always going to be up and down. Different groups are going to find different results as everyone tries to hammer out the scientific consensus.

But with everything else going on, it was hard. Is this what the rest of my life is going to be like? One bureaucrat deciding how much I will suffer, another dickhead at the CDC deciding how valid my suffering is, and the voters/bureaucrats of my state deciding whether they will provide someone to help me bathe and eat?

oOo

UPDATE: After seeing a few reports on Google News, I called my case worker today who confirmed that yes, it's looking very likely that tomorrow (Thursday) the state Emergency Board will be restoring the home care workers for Medicaid patients like me, along with a few other important programs (Meals on Wheels, Oregon Project Independence - both programs I used to be in) that were on the chopping block. "It sounds like a done deal...but I can't promise anything for sure. You'll probably get the paperwork before I do." So I'm breathing a bit easier tonight.

Other social services, however, were not so fortunate. Oregon Public Broadcasting radio news is reporting that cuts in funding for homeless shelters will continue as planned. My adopted dad spent much of the last six years homeless due to alcoholism (something I didn't blog about as I couldn't bear subjecting him to the moralistic ignorance of strangers) and it gave me a far too personal view of the special hell that is homelessness and addiction in America. While he just celebrated his one year sobriety date on the 11th and has a place to stay along with a job, I always know he's just one drink, injury or other chronic illness from the streets (seriously, I still get a slight nervous feeling when he doesn't call me back right away). Oregon already has the highest rate of homelessness per capita in the country and ranks 45th in funding for drug and alcohol treatment.

I tear up every time I think about. Like a sort of survivors guilt. If you're a single man, there have been almost no shelter options in Portland for years (it's literally a lottery for the few beds available). These new cuts are hitting families. Children. Sigh. Don't even get me started on the class issues going on here...

So, you know, very bittersweet.

Out of sight, out of mind

2010-05-12T03:00:00.000-07:00

ME/CFS Awareness Day: "This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation."

The most depressing moment of my day is when I wake up. I turn over, look at the clock, and see that it’s 1:30 in the afternoon. Despite having been asleep for 12 or more hours, I feel like I’ve barely slept at all. I lay back down for a few more winks like a thirsty man in the desert shaking the last few drops out of his canteen. A half hour to an hour later I finally acknowledge there is no more sleep to be had and drag my weak, achy body out of bed.

After taking my morning meds I head to the bathroom. Once I’ve finished taking a puff of my inhaler, brush my teeth and wash my face, it’s time to lay down again because I’m already starting to feel a bit spent.

By the time I get up to make myself some breakfast, it’s 3:30 pm. I walk into the kitchen, but forget what I’m doing by the time I get there. I pause and within 15 seconds or so, remember I’m supposed to make breakfast. But I’m not sure what needs to be done first to make breakfast. I pause again to ponder the chronology of making breakfast and while doing so I get distracted -- the plants need to be watered, a can on the counter needs to be recycled, [insert other random distraction of your choice]. Once I’m done with that distraction, I’m back to square one, namely, why did I come into the kitchen? Oh right, to make breakfast. So, what do I need to do to make breakfast? Lather, rinse, repeat.

If I’m good, I rest after breakfast. Most of the time I’m not. I push myself through the constant miasma of exhaustion and open my laptop to check my email and the day’s news.

Soon my boyfriend will call -- the highlight of my day. He lives in the UK and since I am too ill to get on a plane and the US government will only allow so many visits a year, this is how we have a relationship. In addition to the tremendous barriers to immigration our government has erected, I -- like millions of others on SSI -- would lose my disability benefits if I married. Using a headset as I cannot hold the receiver for more than a few minutes, we chat for an hour or so. After saying our good-byes, it’s time to rest for an hour - or three.

Dinner is often a repeat of breakfast, except longer. After a hard day of sleeping and disorientation my bewilderment relocates to the bathroom as I get ready for bed. However, even though I’m ready to crash by midnight I won’t be able to sleep for another hour or two -- despite the many narcotics and sleep medicines.

This is the daily life that awaits you should you ever get ME/CFS -- along with the burning pain, constant flu-like state, and never-ending pseudo-hangover. Oh and don’t forget the ridicule, isolation, and constant battles with insurance companies and/or Social Security to prove that you really are sick. Losing your friends and family because they can’t understand why you just don’t get your act together. Having doctors tell you that you just need to exercise and/or see a psychiatrist. Being forgotten about because nobody can see the housebound. Left in bed to rot away the rest of your life because your government can’t be bothered to spend money figuring out what’s wrong with you and the little bit of money they do spend is on studies about how you surely must have been abused as a child, thus developing poor coping skills to deal with stress. Or if you’re in the UK or the Netherlands, they spend it on clinics to brainwash you about your “false illness beliefs”.

And yes, I say you because it could very well be you. There has long been evidence that this is an infectious disease and the recent research linking ME/CFS to the third human retrovirus, XMRV, (the other two are HIV and HTLV) makes this all the more likely. Indeed you might even have it already since as many as 3-4% of the healthy population may be carrying the virus, making you just one flu-bug away from a lifetime of spending a half hour each day trying to figure out how to make breakfast (and a lifetime that might well be cut short by cancer at that). The governments of Canada and New Zealand decided recently to ban anybody who has ever been diagnosed with ME/CFS from donating blood, lest the spread of XMRV continue unchecked (Australia is apparently soon to follow). The US, UK, and other countries have not yet chosen to protect their populations. As a fellow ME/CFS patient asked the other day, “Which country do you want to be in for your next car accident requiring a blood transfusion?”

Today is ME/CFS Awareness Day. It was intended to make people aware of the suffering of those of us who have had the bad luck to get this disease and to ask for your help in getting government attention and research funding. But this day is also to make you aware that you too could get this disease and lose much of the life you hold dear. It’s to make you aware that insurance companies have used a small group of psychiatrists (who have lined their pockets with insurance money) to make sure that if you do get this disease, you will be labeled “depressed” and refused the benefits you need to live on (and which you were paying for while you were working). And it’s to make you aware that for more than 25 years your government has not been particularly interested in protecting you and those you love from this disease.

This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation. Your government needs to know it should be spending your tax dollars to protect you from a cancer-causing neuro-immune disease. Yes, we patients need your help. We are desperately ill and need proper, effective treatment. But please realize that by helping us, you may well be helping yourself.

Behind the Window: A Room with a View

2010-03-22T01:52:00.000-07:00

So now that the stomach flu that had me throwing up so much I broke a bunch of blood vessels in my neck is over, and whooping cough (or mycoplasma pneumonia - my doctor wasn't sure but it responded to the second antibiotic he put me on) is over, and moving into my new ginormous one bedroom, brilliant-view apartment (but not the unpacking) is over, and the crashing from the Prednisone I was on for the chest pain during the whooping cough/mycoplasma pneumonia is over, and the nearly two-month battle with Qwest regarding my transfer of service is (hopefully) over, it's time for me to do some blogging already.

While I hope to start doing some proper writing soon, I thought I'd start off sharing a few pictures of that view from my bed. Yes, you read that right -- my bed. With my new apartment, I've got a comfy new (i.e. pre-owned) adjustable bed, so I can sit/lay in ease and watch the world outside my window. Note, however, that my Canon died several months back and all of the pictures that follow were taken with my cell phone -- with mixed results.

The view at sunset while actually laying down in bed. You can see Mount Saint Helens and the Fremont Bridge (my favorite bridge in Portland!) through the railing of my balcony. Though as I've simply moved to a new, roomier cell, the bars seem appropriate.

The view on a sunny day. The cell phone really can't do it justice as I can actually see the tip of Mt. Rainier just behind Mt. Saint Helens. To the east I also get the tip of Mt. Adams.

A view of Northwest Portland on cloudy day.

I took this one this afternoon. It was the most amazing rainbow I'd ever seen. While this turned into a very nice picture, it just wasn't able to capture how truly stunning this rainbow was. Not only was it so panoramic, but it was so bright. I could actually see every last color in it.

There is definitely far more view for the imagination, as Anne Shirley would put it, in this apartment. Though it can taunt me a bit with all the shops and restaurants below, reminding me of what I cannot still do -- leave the damn apartment. The few times I've given into temptation and ventured forth, I have had to pay the painful, icky price that ME/CFS always demands. So for the time being I'll stick to the patio, like I have the last three mornings during breakfast. The view still takes my breath a bit whenever I see it. And when I get a view like today, with the rainbow and the cloudburst over Gresham that followed, I remember that illness, at least, forces me to simply sit and watch. And because of that, I see a lot that I would have missed otherwise.

I wish it was all in my head

2009-12-17T09:18:00.000-08:00

I wish Simon Wessely was right. I wish this illness really was just psychologically perpetuated. I wish that the more I pushed myself Monday to make cookies and candies for friends and family this Christmas, the more that constant icky, flu-like feeling would have receded into the background and I’d have seen how great it was to enjoy life again instead of making me too sick to make cookies and candies on Tuesday.

I wish Peter White was right and I could let go of my attachment to this bed. Get out of this stifling apartment and roam the streets of downtown like I used to. It’s so pretty this time of year with all the lights and evergreens. I wish that the more I had pushed myself yesterday to get out and do some errands -- go to the store and the post office like a normal person -- the more it would have made me forget I have a debilitating illness instead of leaving me weak, nauseous and listless today.

I wish Trudie Chalder was right. I wish that letting go of my aberrant illness beliefs last winter and taking the baby step of joining a writing class once a week at the church next door would have provided the courage to take even more classes and return to graduate school instead of making me crash so badly that I’m still trying to recover 10 months later.

Every time I have a good day, there’s always that little voice in my head that says maybe they’re right: this illness is just some construct I must break out of. I just need to push myself a bit and eventually I can get the life back that I let slip away with my weak will.

But after 11 years of wishing it was all in my head, of thinking that those silly rules about “energy envelopes” and “aggressive rest therapy” don’t apply to me because they just make me pay too much attention to what are normal somatic sensations. Of using all sorts of tricks to distract myself from that horrible pain and weariness so I can bull my way through using sheer force of will to do what I want. After all the stubborn, wanton disregard for whatever my body tells me (It’s normal to feel tired, right? But everybody else keeps going...), I end every year sicker than I was when I started it. My functional capacity decreases. I spend more time in bed (can that be possible?). I’m on more medication.

It’s just...I just so want them to be right.

Hang on

2009-12-10T15:07:00.000-08:00

A few days ago I was reading the blog of a fellow Portlander with the title "Hanging Blog Syndrome." I immediately recognized the malady. Despite having my shiny new Macbook for almost a month now (thank you again, dear friends who donated it!), you can almost hear the creaking of this poor blog as it hangs forlornly in cyberspace.

My blogging is always rather meager when A. is here -- as is his productivity also. Two people sharing a 400sq foot studio for two and a half months without pause except for my doctors appointments or his trips to the store is not particularly conducive to introspective pursuits.

Neither is chronic illness blogging-friendly. Good days have been rare for a few years now, even if I always think they are close at hand. Instead there are horrible days and less horrible days. Most of the time my brain is cream of wheat and I'm too weak to sit up in bed, drag my fingers across a keyboard and input all the thoughts I've had during the hour upon hour of laying in bed. You have no idea how jealous I am of those of you who can blog every day or even every week. And even more jealous of those of you who get to read blogs regularly or interact incessantly on forums like the Phoenix Rising board (which I've grown fond of).

If I could write via mere thought, my hanging blog syndrome would be a thing of the past. The brevity and immediacy of Twitter has made composing my thoughts less onerous than blogging, though admittedly more banal. I suspect you will continue to find me Twittering more than I blog.

But A. is about to return home to the UK. Bad for cuddles and companionship, yet more promising for blogging, as is the recent return of my writing head. Like so many things, it's "use it or lose it" with writing. Blogging is one way I hang on.

A jolly good time

2009-11-11T17:33:00.000-08:00

And here I thought I'd be blogging like crazy over the last month...

My absence has been mostly Microsoft's fault. On October 14th I downloaded the ginormous security updates from Microsoft and haven't been able to open Windows on my laptop since. My adopted dad spent two days last week working on a system restore to no avail. As you can imagine, I've been cursing Microsoft with the crudest expletives I can think of since.

It had to happen just after the most amazing research development in ME/CFS history. Not only have I been wanting to read obsessively about it and can't, but the local ME/CFS group I hand-moderate went crazy. Instead of spending a combined total of 10 minutes a month moderating in the comfort of my bed, I've been sitting up in the kitchen on the broken down Averatec I'm sharing with A. for a half-hour to an hour a day approving posts and trying to keep everyone in line (with mixed results).

Unfortunately I can only handle sitting up in the kitchen for a maximum of a half-hour to an hour most days. So, you know, there wasn't much energy for anything else like, oh say, reading any of my other email. Twittering and/or blogging, of course, came to a screeching halt.

Moreover A. and I have been passing a cold of some sort back and forth. It's meant a stuffy nose and chest for him and vertigo for me as it affected my inner ear. For the last month we've been in a cycle where I'd start to feel better on Friday. We'd fool around on Saturday. I'd crash on Monday and be so sick for the rest of the week that I didn't really care that I was jonesing for Twitter and didn't have a laptop with which to get online.

Last week the vertigo finally settled down, but then I started having problems again with my sacroiliac joint and left hip slipping out of place. Sitting at the computer in the kitchen was excruciating.

Yep. It's been a jolly good time.

But things are starting to look up. I'm sitting and walking fairly comfortably now and the world is no longer spinning, though I think we both still have a bit of stuffiness in our lungs and noses. My moderation duties have quieted back down as our group returns to its usual tepid level of discussion.

Alas, however, blogging will have to wait for a bit. Some incredibly generous friends are donating a used MacBook but it will be another week or two before it will be in bed with me (hehe that sounds so kinky).

Usually such breaks from the computer mean I have a lot to write when I finally come back. And this break, I suspect, will be no exception. So, I'll see you all in a couple of weeks with, hopefully, some thoughtful writing.

"I'd rather have HIV"

2009-10-17T15:47:00.000-07:00

From the Q & A in yesterday's New York Times with immunologist Dr. Nancy Times:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which mpacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

An AIDS specialist at the Oregon Health Sciences University, Dr. Mark Loveless, who also treated ME/CFS patients before retiring told Congress in 1995 that a CFS patient "feels every day significantly the same as an AIDS patient feels two months before death." Indeed on the Karnofsky fatigue scale, which Loveless administered to both AIDS and CFS patients, he noted that many AIDS patients scored higher in their last week of life than CFS patients.*

____________
*Hillary Johnson, Osler's Web, New York: Penguin Books, 1996, p.364-365.

It's the virus, stupid

2009-10-10T01:32:00.000-07:00

Since A. arrived a week and a half ago, I have awakened each morning to his succinct report of the most interesting news story of the day such as the latest creepy cop video on Reddit or the most recent Obama capitulation to the Republicans or the insurance industry.* But Thursday when I woke up he said that there was no news, nothing at all interesting to report.

"So today, October 8, 2009 will be the day forever known as the day of no news," I joked.

But alas, it was a huge news day for ME/CFS patients. As I turned on my laptop and read that Dr. Judy Mikovits, the hero of this post, had found the retrovirus that may well cause ME/CFS, I teared up. From relief that the retrovirus was finally found. From hope that maybe I might soon get my life back. From anger that I might have a virus I could be passing to my boyfriend and the government agency charged with understanding and informing us about communicable diseases -- the Centers for Disease Control -- has spent the last quarter of a century doing little to figure out what exactly has been making us so sick.

For the last few weeks I've been plodding through Hillary Johnson's tome, Osler's Web, which details the history of ME/CFS, what the Whittemore-Peterson Institute is now calling X-Associated Neuro-immune Disease (XAND) or more informally I.T.V.S -- It's The Virus Stupid. From the very beginning of Johnson's narrative an unknown retrovirus plays a prominent role. Indeed two weeks ago I spent my Saturday night reading about retroviruses on Wikipedia and whatever else I could find on Google, so I was actually rather prepared for Thursday's announcement. I already knew that there were only two other known human retroviruses, HIV, which causes AIDS, HTLV, which causes types of leukemia and lymphoma. That retroviruses integrate themselves into the host's genome by inserting itself into DNA, making them impossible for the immune system to clear and wreaking havoc in the process.

True, we can't yet say that XMRV is the cause. A part of me is still afraid to celebrate as there have been so many possible breakthroughs in the past that have turned out to be, at best, anemic. But then, we've never had a study with someone like Frank Ruscetti among the study authors, one of the nation's top cancer researchers who used to work with Robert Gallo, a co-discoverer of HIV. We've never had a journal as prestigious as Science treating ME/CFS like the serious, debilitating illness that it is. We haven't had skeptics like molecular biologist John Coffin go from doubtful to proclaiming “they will be celebrating in the clinics where these people [with CFS] are being treated.” And while the Science study may be small (101 patients), Dr. Judy's group developed even more sensitive tests after submitting that paper that have found XMRV in 95% of 300 ME/CFS patients as well as 500 patients in the UK.

Not that it has impressed the guy at the CDC who should have found this virus, as this paragraph from NatureNews suggests:

William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS".

An illness like CFS? That psychosomatic, "mind-body condition" Reeves has been studying by looking at whether patients were abused as children and were making themselves sick by feeling too much? Yes, I can see how these findings were "unexpected and surprising." I mean, it's not like the man who heads the Chronic Viral Diseases Branch at CDC should have actually thought an illness like CFS would be viral in nature.

But like a cruel, corrupt, and ultimately inept warden who is suddenly caught out by the authorities and the inmates turned over to more competent hands, one can only hope that William Reeves and his pals Peter White and Simon Wessely will fade into the shameful history of ME/CFS/XAND as Dr. Judy and her lab find what patients and a handful of doctors have suspected all along: it's the virus, stupid.

_________________________
*It took me several minutes to believe him when he told me Obama won the Nobel Peace Prize as I was sure it was a joke. But that's a subject for another post.

Hard struck

2009-09-23T21:39:00.000-07:00

I was reading an excellent piece yesterday in Harper's Magazine where the author insisted, despite the assertion of technocrats who worship the bottom-line, the humanities are as indispensable to a free society as the sciences are supposed to be to a strong economy. As someone who has always been a humanities sort of gal, I found it to be an elegant and timely credo. And for a moment it felt like 2001 again.

Though illness was increasingly frustrating my ability to do so, that year found me spending my time reading about pedagogy and interdisciplinarity and the history of liberal education. I was working on a paper about the potential of interdisciplinarity to save liberal education after a conference on higher education accepted my proposal. The acceptance letter even addressed me -- gloriously mistaken -- as "Dr."

And then the flashback ended. I remembered that I was here. In 2009. Listless in my pajamas. Using my bed table to hold the weight of the magazine as I am too weak to do so. Arguments about the value of the humanities and the state of American education were suddenly vague and remote. That's when it struck me and struck me hard: I'm no longer a teacher.

When I was seven and spending a week with my grandparents in their smokey cavern on the Coastal Range while my mother had ear surgery, I can remember asking my grandma under a brilliantly bright sky what a teacher does. I can't quite remember her answer now -- funny that I can remember the smells and sensations but not the substance of the memory -- but I then replied that I wanted to be a teacher. Over the years the type of teacher I wanted to be changed (elementary, secondary, missionary, college), but teaching was the consistent core of my vocational aspirations.

Will I ever see a classroom again?

Friday will mark the eighth anniversary of the day I handed in my resignation as a graduate assistant in our university's general education program, University Studies -- well short of my ultimate career objective of being a tenured professor. To be sure, I did a lot of teaching, if not about my subject of research (but then, who ever really does teach about their research?). Just as my fingers were starting to brush against the prize, the illness swooped in and dragged me away to its hellish lair.

Yes, I know. I am not unique in watching my dream drop off the horizon along with the daylight. And it's not even like I haven't cried over this loss before. Grief is funny that way. Or rather, capricious and arbitrary that way. Smacking you like a two-by-four across the head when you're not expecting it.

The ME/CFS advocacy conundrum

2009-09-04T01:20:00.000-07:00

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.

____________________

*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.

Found

2009-08-30T22:22:00.000-07:00

I woke up Tuesday with a sticky despondency I have not felt in a very long time. It was early -- that is, in Michelle-world, 1 pm -- as I had an appointment with my primary care provider to discuss the lower right abdominal pain I've been having for five years. Except I knew there was little chance of resolution given that my doctor has been chipping away at it all these years with MRIs, CT scans, ultrasounds, physical therapy, a urologist, a gynecologist, and two uro-gynecologists. "That's it. We need to get in there," he declared almost two years ago. "You need a laproscopy." However since I'm on Coumadin, it's not like surgeons are lining up to cut into me. And to be honest, I'm not exactly eager to have them cut into me.

After a few pleasantries where we talked about how he can't remember the last time he actually took a lunch given the workload that twenty-two – "twenty-three, today," he corrected – patients a day creates, we went through the whole thing again. How this pain was left over after a urinary tract infection that presented as pain at the base of my spine traveling down the back of both legs and a fever of 104. Since then a mostly dull, pressure sensation has remained just below and to the right of my belly button that is hot and sharp when pressure is applied. Since starting morphine a year and a half ago (which is why 1 pm is early), the pain is fairly tolerable except the ten days or so leading up to my period when it really interferes with sleep, physical therapy exercises, standing, etc. The unusual and mysterious urinary tract infections I had for a year and a half (summer 2004-winter 2006) are now part of our unspoken collective memory.

"Maybe a hernia. Sometimes there are hernias that aren't very visible," he said with furrowed brows.

"Funny you should say that..." I began. The week before I'd developed pain in my groin/thigh after straining congruent with a hernia and was sent to the ER by his nurse. The ER nurse and doctor both thought it sounded like a straight forward hernia but, alas, the CT scan came back negative. My doctor tempered his frustration by looking for the ER report that had, apparently, not yet arrived.

We moved to a discussion of my unstable sacro-iliac joint and how I seem to be having a similar problem with my hips. He had me do some range-of-motion exercises, which I did with ease.

"The only problem with range-of-motion I ever have," I tried to remind him, "is that I have too much of it." For someone who is used to dealing with a never-ending stream of arthritic people who can barely move, the idea of "too much range-of-motion" is completely lost on him.

"I suppose – theoretically -- if there is some nerve compression in the sacrum then it might refer to that area in the abdomen," he pondered. "Let's do an MRI of the sacrum. If nothing shows up, my instinct is still that it's a genitourinary issue and to send you back to Dr. C." The second uro-gynecologist.

So Tuesday I'm to have the third MRI of my lumbar-sacrum in five years, though I'm sorely tempted to just forgo it and save the taxpayers of the fine State of Oregon the money, not to mention my body the radiation as I'm 99.99999999% sure it will show the exact same thing it did the last two times (2004, 2007): minor arthritis of the spine.

I returned home via the medical transportation cab, gazing out the window to see people living life – life that I miss terribly. Walking in the Park Blocks under the brilliant blue Portland summer sky, sitting in cafes, riding buses, driving, biking, talking to friends, grocery shopping, working, reading books...Returned home to my studio apartment, the cell to which I've been sentenced for the past eight years (well, this particular cell for the last four).

The pain arrived not long after the symptoms of my illness, Chronic Fatigue Syndrome (the most ridiculously name disease ever), began to get markedly worse, and I have been hoping that if we could figure out what was causing that pain maybe I could get better. Sure I wasn't going to get ALL better. But it would be nice to wake up before noon and see the sun again. Be able to read a book again. Be able to write more. Maybe go to Divine Liturgy or Mass again. And maybe, just maybe, get on a plane and visit my boyfriend in the UK.

I woke up Wednesday with the same despair as Tuesday. Brushed it off initially as PMS but wondered if it might be related to the increase in Promethazine a few weeks back and decided to cut it from my bedtime meds. Especially as lately I wake up feeling even more groggy than I usually do. How can one not feel at least a little despair to sleep 12-15 hours a day but never wake feeling refreshed? To wake up everyday feeling like you desperately need more sleep but being so achy from being in bed you just have to get up?

Ted Kennedy had died the night before. Charlie Rose was re-airing two recent interviews with him and I found one of the points he was making about all the doomsayers regarding Social Security and Medicare entitlement spending a very important one.

Kennedy: "If you have a breakthrough in Alzheimer's, you empty 2/3rds of the nursing home beds in my state of Massachusetts...

Rose: "So you're saying, let's fund the NIH, let's fund the research..."

Kennedy: "This idea that it's a zero-sum game is crazy. The Republicans believe it. They think it. They're wrong."

If more ME/CFS research were funded and adequate treatments developed, not only would US taxpayers not be paying to support me on SSI, but I would be paying taxes as a middle-class academic.

Considering the state of NIH or CDC research of ME/CFS is about the last thing a depressed person should ponder. Reading through the most recent threads among the ME/CFS patient community about whether or not the CFIDS Association has or has not been an effective advocate over the last 17 years is also rather bleak, if still somewhat enlightening. I've found myself writing about that too in order to make sense of my thoughts, though I haven't made enough sense of it yet to post anything.

Perhaps it's because I've also been distracted by ongoing thoughts about how being housebound cuts me off from the Church. I have not been able to go to Divine Liturgy for four years now. When Father F. came here two and a half years ago to do a truncated version of the Divine Liturgy for me, I crashed badly and he ended up in the hospital due to a C. difficile infection. He is not the healthiest man, and I hate to bother him because of that, not to mention having the Divine Liturgy here is clearly hard on me (I stood with him last time; I have since moved my icons next to my bed). I never hear from anybody at Saint Irene's. I'm certain I've been long since forgotten by everybody besides Father F. And he only remembers me because I speak Arabic.

I've tried to find some sort of spiritual connection with the Journey-Koinonia community up the street as it's close enough to come home early if I get too ill, not to mention it's not as sensory-intensive as the Divine Liturgy. Theologically and politically there is a lot I have in common with them, even if I dislike their liturgy. But I've only been well enough to celebrate Mass with them once since last November – Palm Sunday – and nobody there has been particularly eager to spend time with a shut-in. I'm on the email list so I get the weekly homily and announcements. But that's not the same as human contact.

Yes I feel abandoned by the Church. Not welcome to participate in the life of the Church because I'm housebound. Most people think installing a wheelchair ramp is about all you need to do to be friendly to the disabled. By the very fact that the housebound are, well, housebound means the community cannot possibly be obligated to include them, despite all that the housebound have to offer. Meals-on-Wheels – that 30-second transaction of handing over a less-than palatable meal – is all they need, right?

I woke up Thursday with less melancholy, though still ruminating about the ME/CFS community and feeling forgotten by the world outside my apartment. Read more in the ongoing thread about the CFIDS Association. Found the litany of people who had been sick for 20 or more years terribly disheartening. Is that what I have to look forward to? Another ten more years staring at the same damn four walls? I really wanted a good cry, but no tears were forthcoming.

There were a few tears during massage therapy on Friday afternoon. Most of the time it's my right hip that hurts, but as my massage therapist began massaging my left hip and buttock, I was reminded that it, too, is also in pain but usually forgotten about amidst the roar of pain on my right side. The gentle rubbing and kneading felt almost sacred.

My mind was scattered Saturday. Not depressed, but not exactly jovial. Mostly just...tired. That word I must use a zillion times a day. Yet a tired I have no idea how to explain to someone who has never felt it before. Like someone slowly sucking all of the very life out of you. I had enough energy to fry up some frozen hash browns, a sausage and a strawberry-ricotta cheese omelet. It was nice but not nice enough to match the amount of energy I used up making it.

After my daily chat with A., I kept trying to decide if I should watch a movie or take a bath or check my email. Eventually "check my email" won out, among which was a link to a post on Hillary Johnson's blog that I thought maybe I'd already read. I never know half the time because my memory is so poor (but it does make re-runs so much more interesting!). She was talking about the Invest in ME conference in London last May and eventually I decided that no, I hadn't read this post, even if much of the material was familiar to me. There was a lot about the new Whittemore-Peterson Institute and Annette Whittemore talking about the backward, apathetic, and slothful pace of research contrasted with Judy Mikovits's exciting research I've been hearing so much about over the last several months. Research about the immune system she's been able to do within a mere year that the CDC and NIH haven't managed to do in the past quarter of a century. I could feel the spark of hope lighting up again. If maybe my doctor could get access to that Virochip...

“It’s a very, very powerful tool to have a research scientist sit in the same room with a patient who is so ill, and listen to their story…" Annette Whittemore told the London crowd.

"In fact, we have to tell our young students to go home, take a break. It’s no wonder they’re so loyal and enthusiastic. Their mentor outworks all of them...”

“...Dr. Judy, as she tells patients to call her, has taken this field by storm…Her expert, broad training in Frank Ruscetti’s (NIH) cancer lab, and drug development in southern California taught her to realize when something is so terribly wrong. She answered a plea to come to Reno.”

I could feel the tears coming from that place in the center of my chest. Somebody has finally found us. Somebody who could actually help us IS actually helping us. Somebody with the knowledge and the technology and the contacts is using all of that to help us. Us. The "chronic fatigue" patients that nobody will touch with a ten-foot pole lest it damage their careers and precious funding.

But it was the postscript that got me. "Dr. Judy Mikovits has asked me to post her cell phone number and e-mail addresses to this blog. 'These patients mean everything to me,' she wrote. 'I have never done anything with my private life but serve patients...we encourage each other.'"

What a sweet but crazy woman, I thought to myself. She's going to be engulfed with thousands of desperate patients like me and worse sucking her dry for help! And indeed in the comments section was an anguished plea from a mother who was sick along with her son and had lost her home and income.

This remarkably reckless act of kindness is what finally produced the cathartic cry I had been needing. In the history of our illness there have been a handful of doctors who too have provided their remarkably reckless acts of kindness, even if all they could really offer was just comfort and symptom management. There have been those like my doctor, who keeps laboring away each day with little to help him find his way. But from far too many we have faced derision, apathy, doubt, rejection, and abandonment. Children have been ripped from their parents. Patients have been committed to mental hospitals against their will. A few have even died – and are dying from the rare lymphomas that first drew Dr. Mikovits to Reno in the first place. Most of us are simply left alone to watch the lives and the people who were in those lives float away never managing to ever quite touch them again.

I woke up today feeling like, if not refreshed, like I'd actually slept for the first time in awhile. No, I still wasn't able to go to Divine Liturgy or Mass. Again. But I had my own solitary liturgy with more faith that someday – perhaps soon – I'll be well enough to sing the Cherubic Hymn with live people and not just a CD. And of course, I said a prayer for Dr. Mikovits, Annette Whittemore, Dr. Peterson, and all the unnamed patients of this insidious disease who are, at last, being found.

Potty mouths for pain

2009-08-26T17:36:00.001-07:00

The word fuck never crossed my lips until I got sick. Until I got vertigo, to be exact. I had just started my first grown-up (i.e. non academic) job. I even had my own cubicle and business cards. Then I woke up one day with everything spinning. When the doctor diagnosed me with labyrinthitis, telling me there was nothing that he could do and I just had to wait up 6 weeks for it to leave on its own, I walked to the bus stop across the street from my clinic and let out a torrent of fuck.

Turns out, it may have been a good coping mechanism. Indeed, this study shows that swearing actually can help reduce the intensity of pain -- something else that increased a great deal once I got sick. And needless to say, I swear like a sailor now. Though, according to the psychologist who did the study, the more you swear, the less effective it may be.

A new, more substantive post is forthcoming. Illness and other events have conspired to limit my blogging of late, but not my thinking. Hopefully I'll be sharing some of those thoughts in the next week or so.

"Will you please call me Cordelia?"

2009-07-22T22:10:00.000-07:00

"Will you please call me Cordelia?" she said eagerly.

"Call you Cordelia! Is that your name?"

"No-o-o, it's not exactly my name, but I would love to be called Cordelia. It's such a perfectly elegant name..."

"...Unromantic fiddlesticks!" said the unsympathetic Marilla.

oOo

"Do you never imagine things different from what they really are? asked Anne wide-eyed.

"No."

"Oh!" Anne drew a long breath. "Oh, Miss -- Marilla, how much you miss!"

"I don't believe in imagining things different from what they really are," retorted Marilla. "When the Lord puts us in certain circumstances He doesn't mean for us to imagine them away."

Anne Shirley has been a kindred spirit ever since I first watched the Kevin Sullivan production of the classic book by L.M. Montgomery. The first time I heard her talk about "so much view for the imagination," I remember thinking, someone else thinks like that too? followed quickly by oh but you're not supposed to say that out loud! Like Anne I spend a lot of time in my imagination. And when you spend the overwhelming majority of your time alone (and in bed to boot) the imagination can become your permanent place of residency.

For the last four years now I have required an in-home caregiver. I don't know why, but I always imagined she'd be a thick Germanic sort of woman. Probably based on a character in a cartoon or TV show that I've long since forgotten. She'd be no nonsense. A bit like Marilla, though more affectionate. Or maybe Thelma Ritter in Rear Window -- a caring but bossy nurse scolding me when I didn't rest enough or spent too much time on the computer. She'd be discerning, dependable, and devoted. A sort of second mother.

The reality, of course, is completely different. It's having a total stranger come into your home when you've just waken up and every dish you own is scattered about the kitchen counters and the laundry is a smelly mound Sir Edmund Hillary would have found a thrilling climb. It's having a total stranger who doesn't understand that while you may look perfectly healthy because you're young, not paralyzed on one side, and still have most of your wits about you, you're not. It's having a total stranger handle your belongings both precious and intimate.

Indeed the very first day with my very first caregiver ended with laundry soap all over the bathroom, the hardwood floor stripped with dark grime after being mopped, and the LCD screen on my laptop sporting a giant crack after she tripped over the cord and sent it flying (to be fair, that last one was mostly my fault for leaving my laptop in a precarious position). I burst into tears upon her departure. The agency actually fired her a couple of months later after she repeatedly failed to show up for work. I felt badly for her because she had no telephone but did have a child with a father who wasn't particularly helpful with childcare. Yet she was obviously in the wrong line of work.

It got better after that. Her replacement, J., was as perfect a caregiver as I could want. Her first day she simply went about tidying up the disarray of my home without needing a great deal of instruction. Over the months I learned about her kids and grandkids. Even about her own childhood. When my building's vacuum cleaner broke, J. picked up a used one for me at a local thrift store and never charged me for it. Indeed when I gave her a Christmas gift, she was visibly uncomfortable being on the receiving end of generosity. I was heartbroken a year and a half later when the agency she worked for dumped all of us county-paid clients. The county then moved us all to the only other agency they were contracted with and J. wouldn't work for them. I didn't blame her. The pay was shit and they effectively didn't provide health insurance. Which meant that her replacement wasn't nearly as good.

This last January I was switched to a different program which doubled my monthly allotment of caregiving hours. But with this new program, I have to hire my caregiver. And I hate calling strangers on the phone. With the old program, the agency just sent me someone. If I didn't like the person, I could ask for a new one but the agency was really the boss. Now I am and it feels...weird.

The first woman I hired, G., had the potential to be another J. But she had to quit after three months when she got a job that provided health insurance. I quickly hired S. as she worked for a woman just across the hall. S. could sense my natural passivity and promptly decided to take charge herself, which, on her second day, included replacing my old laundry baskets and handing me the bill. I hate conflict and since it was only $4.50, decided that was cheaper than mustering the energy to say no. Later that day she decried the clutter in my apartment and, after asking me if it was because of my illness that I'd "let the place go," notified me that she wanted to completely reorganize everything. Yes, there is clutter in my apartment though, while not nice to look at, it is neatly piled on shelves and out of the way.

This was not exactly the sort of bossy I was looking for.

So I mustered the energy to sit her down the next day and explain that I appreciated her ambition but I needed to channel that ambition based on my priorities, not hers. In addition, if she made me feel self-conscious about everything, she was not going to work out. She apologized, acknowledged that I was the boss, and agreed to follow my agenda. I thought it was going to work out after that. But, alas, she switched to a more passive-aggressive approach, telling me how I needed to replace this or that, including my vacuum as it hurt her shoulder. When she emailed me a few days later to tell me she was quitting because her shoulder hurt and her doctor told her to cut back on work, I was relieved. Fake excuses do make the world a happier place, no?

But that left me needing to hire yet another new Home Care Worker. And calling more strangers from among a list of names. It took me almost a week before I even looked at the HCW list and a few more days before I started calling potential caregivers. While my phone phobia could explain some of my procrastination, there was clearly more to my dawdling.

As I sat and thought about my feelings, I realized that, along with my continuing resentment over not being able to do my own cooking and cleaning, was fear and vulnerability. Will the new HCW understand that I really am sick, despite my seemingly healthy exterior? Will I have to prove I'm truly deserving of in-home care? Being fat makes me particularly paranoid about being seen as lazy. And breaking in a new caregiver can be tiresome with having to show where everything is, what needs to be done, and how to do it. I'm tired of putting together task lists and care plans (I haven't ever even bothered with creating a job application or seeking/checking references as apparently I'm supposed to). Being my own HR person is exhausting. I just want someone to simply take care of me already.

In the end, here alone all the time, it's so easy to slip into my imaginary world with my imaginary caregiver who already understands how ME/CFS works and will make me rest. Who doesn't need me to list every last thing that needs to be done but just...knows.

While I don't know if it was God, karma, fate, or whatever that put me in the circumstances that I'm in, Marilla's point that I'm not meant to imagine them away has a great deal of merit. Once I awake from my reverie, the real world is still here requiring my action. I can whine all I want about how hard it is. And like Anne begging to be called Cordelia, I can beg for life to be like it is in my imagination, but at the end of the day she was still Anne -- with an "e" -- and I still need to hire somebody to come do my laundry.

Eventually I got around to hiring another home care worker, P. And she was great. Not very Marilla-like, but she cleaned even better than J. She cooked the unusual Chinese medicinal recipes I gave her with ease. She even agreed to work my dream schedule. However after a wonderful first month, her attendance became erratic. During her first absence I was just so worried about her I didn't think about being upset. Her excuse, that her basement along with her cell phone had flooded, seemed a bit shaky. But I was so relieved she was okay, I let it slide. Then she slept through an alarm one day. Or forgot to show up on another. When she didn't show up last week, with a heavy heart I finally had to let her go.

So tonight I hired my newest HCW, SL. I'm sure she won't be the caregiver of my imagination, even if she does kind of look like her. I don't even know if she'll be as perfect as J. was. But she's had years of experience working with the Department of Human Services Home Care Worker program. And when I explained how ME/CFS works, that even though I can walk around the apartment unaided (though sometimes with a cane...or two) and may not look sick I really am, she immediately responded, "I know you've got to be really sick because they don't just give anybody a Home Care Worker."

But when she starts next Monday, I'll still have to explain where the dumpster room is, how I use vinegar for fabric softener, and that it takes $1 to wash and seventy-five cents to dry. I'll still be the employer who needs to articulate employee responsibilities and evaluate her performance. Ours will be a business relationship with her providing a service that the state pays for on my behalf.

Though I can always imagine it's an all-knowing and kindly if bossy nurse...

Other peoples' revolutions

2009-06-21T23:28:00.000-07:00

For the last week I've watched friends on Facebook decry the brutality of the crackdown on protesters in Iran. "Contact the UN about what's going on in Iran!!! (and it's always with multiple exclamation marks)" Because that will accomplish...what exactly? And on Twitter, half my friends have tinted their avatars green to show support for the Iranian supporters of Mir Hossein Mosavi, whose green face is often seen waving above the heads of fashionably-dressed Iranian youth like a cartoon character about to throw up.

To be honest, the whole thing makes me feel rather nauseous too.

Now I have a great deal of respect for anybody who is willing to stand up and risk being shot for what he or she believes in, regardless of the cause. It takes some balls – or gall, depending on your gender – to brave live ammunition.

What's loathsome is the way Americans respond to other peoples' revolutions. We are (for some reason) shocked and disturbed that they're using live ammunition, not realizing that this is how revolutions work. People march, tear gas is released, some get shot, but hopefully (though unfortunately less often than not) things change for the better.

We tint our Twitter avatars green because the cool kids twittering in Iran are waving green banners, not knowing that green is the color of Islam – the same color that gets waved and worn at Hamas rallies. Nor has anybody bothered to read anything about Mir Hossein Mousavi, assuming he's Nelson Mandela or Robert F. Kennedy, rather than a man who was involved in the Marine barracks bombing in Beirut in 1982, was known for crushing dissent when he was the Iranian prime minister during the 1980s, and ran on a platform of returning to the teachings of Khomeini and catering to business interests in addition to moderating a few of Iran's repressive social rules. Ahmadinejad may crush dissent too, but at least he redistributed oil money to the poor -- the ones cleaning up after the "Gucci crowd" when they've finished protesting for the day.

And, of course, the support provided to the kids in Iran is remarkably selective. There is no twittering about the Palestinian kids in Bil'in who every week utilize the teachings of Ghandi and King and stand up to and get shot by live ammunition because their homes are being stolen, their education is cut off, and their youth is often spent in jail because they had the audacity to be born in a land someone else wants. There is no indignation over the fact that the gas flowing into our cars comes at the expense of some other Shi'ite kids - but in Saudi Arabia - who can't even practice their religion and nor dream of protesting because they would be immediately shot or worse.

But the thing about Americans and other peoples' revolutions that really makes me sick is that it's like we live vicariously through them rather than get off our asses and march in the streets ourselves. At this very moment a handful of rich white guys on the Senate Finance Committee are about to hand the insurance companies – the very entities that keep us from the getting the health care we need – a trillion dollars worth of our taxes without even giving us the choice to buy cheaper, better insurance from the government. And Americans aren't going to do a damn thing about it.

Nor is the "cool" American president young people voted for because all their friends on MySpace said they just had to vote for him. Indeed about the only campaign promise he is keeping is escalating the war next door to Iran in Afghanistan and its neighbor Pakistan. He sat by and let Congress vote down a bill to help people being kicked out of their homes. True, he is closing Guantanamo Bay, but only by indefinitely holding people elsewhere for crimes they might commit. And now with health insurance reform (and that's what it is, not health care reform), the only thing he's told Congress he's firm about is that he wants a bill on his desk by October.

In the meantime, 18,000 people a year are dying for lack of health care. Thousands more are going bankrupt despite having health insurance. Hundreds of thousands of people are losing their homes (not to mention another hundred thousand were homeless before the foreclosure crisis ever started). Millions are out of work. Millions -- who are disproportionately African-American – are in jail in our supposedly free, democratic society (more than China, Russia, and Iran combined). Millions are living in third-world conditions inside our very borders (and again are disproportionately African-American). Over a hundred thousand bridges are "structurally deficient or functionally obsolete." Our educational system is churning out students who cannot write, calculate, or think critically. And, of course, the planet is burning up, the weather is changing, and the one major city already drowned as a possible result has been largely forgotten.

If you're fine with all that, then by all means, keep updating your Facebook page with pics from that party last Saturday. Keep reporting what you had for breakfast on Twitter. Keep watching cat videos on YouTube and noting your occasional outrage on Reddit.

But if you want access to decent, affordable health care, might I suggest you get off your ass and into the streets because Washington is not going to change just because you elected that cool guy you secretly wish was your dad/lover who promised it. Washington is only going to change by the people taking seriously the job that the Founding Fathers gave us in the first place: government. "We the people..." – remember? We are the government, not Pfizer, Lockheed Martin, Citibank, Blue Cross Blue Shield, or Clear Channel. But they are the ones running this country, not you or me. And they aren't going to give up the power they've got until we rip it out of their cold, dead hands.

So quit prattling on about a revolution ten time zones away without doing something here. Quit delegating the job of changing the world to somebody else. The coolest revolution of all is the one you twitter about from the streets, not your living room.

Instability

2009-06-19T22:48:00.000-07:00

My ass has been so sore the last several days that it hurts to sit much, even on my bed (aka The World's Softest Bed), hence the paucity of posting. I've had a couple of posts I've wanted to write for weeks now rattling around in my brain, but between some nasty crashes and the events described below, blogging has dropped way down the priority list.

On May 29th, I woke up feeling as if someone had driven a railroad spike through the base of my spine. I couldn't walk, sit, stand, or turn over in bed without excruciating pain. A week later at 6:30pm, it abruptly stopped, allowing me to sit again and walk a bit (aided by a cane...or two), though it still hurts quite a lot to stand or turn over in bed.

This has happened once before, also right before my period and also during a month when I'd gotten an extra dose of estrogen (that time I had gone off the progesterone-only pill but this time God only knows why I got the extra dose of hormones). However unlike last time, I had a good idea this time around what was causing the pain because my physical therapist had recently identified weakness in my right sacroiliac joint (where the sacrum at the base of the spine attaches to the pelvis) and given me exercises to strengthen the muscles surrounding the area (which I have been doing religiously, especially as I can do them laying in bed). That extra batch of estrogen made my ligaments even more lax than they already are, leaving my sacroiliac joint even more unstable.

In normal human beings, this is a very, very stable joint with super thick, strong ligaments to keep it in place. In me, it slips and slides around like a kid on wet plastic in the hot summer sun. It's not my only joint that does this. I've had two surgeries to correct unstable joints (right ankle and knee). My fingers, elbows, hips -- all pop in and out of place. And since junior high I haven't been able throw a ball over hand using either arm without the shoulder coming completely out of joint and then popping back in.

And yes, it feels just as icky as it sounds.

After talking with my physical therapist, she's recommending I start using a walker until it heals up (though my insurance company at the moment won't approve said walker). I also have a brace to help it stay in place, but the brace presses down on an already pinched lateral femoral cutaneous nerve in my right thigh.

Sigh. I'm a real piece of work alright.

But -- at least today! -- I have a bit more energy. Fingers crossed, I'll get to those posts that have been floating around in my head and bring some stability to my blogging.

Come to bed with ME

2009-05-12T00:37:00.000-07:00

(I love tag line, but I wish the poster were a bit more kinky)

Today is International Neuroendocrineimmune Disorders Awareness Day -- including ME/CFS -- during a week dedicated to ME/CFS Awareness. I've commemorated the day in years past by listing what I've lost due to this illness, as well as what I've gained from the experience of illness. This year I thought I'd describe what it's like to have ME/CFS, in addition to the example of an X-Files phenomena I used a few years back.

Here in bed with ME/CFS, you feel like you have the flu. Your throat hurts. Your joints burn. Your heart beats like mad. You feel chilled, profoundly weak, slightly nauseous, light-headed, mushy-brained, and just...icky. I wish I knew a more specific and/or scientific word to replace icky. It's almost like your blood has been replaced with poison. You feel dreadful. Vile. Horrible. Nasty.

And on top of that...

You've got a hangover. Everything smells so strong. The lights are so bright. Loud noise grates on your last nerve, as well as that throbbing in your head just behind your eyes and at the base of your skull. And you might still be a bit tipsy because your spatial perception is off (if I try to do that test where you close your eyes and touch your finger to your nose, I hit my cheek or my eye), not to mention you can't walk a straight line. Sometimes the room just spins.

And on top of that...

Someone is giving you low-grade electric shock torture and doing voodoo on you with a knitting needle. Most of the time it's a constant burning sensation throughout your whole body punctuated by arbitrary 5-30 second jolts of sharp sharp pain in completely random places -- your ear, your belly, your right arm, your left heel. (The burning sensation and the arbitrary jolts get markedly worse whenever I have an acute infection, especially if I have a fever.) And you have this weird buzzing sensation in random places too. As if a bumblebee or hummingbird were just beneath your skin. It doesn't hurt, but it's...weird.

And on top of that...

If you also have fibromyalgia (which up to 70% of ME/CFS patients do), you feel like you just had your first day on a chain gang breaking rocks in a quarry. Or that you went to the gym yesterday and worked out harder than you ever have in your entire life by far. Every muscle in your body burns and aches and is so stiff you can hardly move. You want to curl up in bed and sleep, but the kicker is you can't. You just lay there, though eventually you get up just to move a bit because your muscles have petrified and the stiffness is agonizing. You wish you could go to bed at a normal time and get up at a normal time, but your body runs on its own clock that, unfortunately, is not during normal business hours.

All of that. All the time. That's what it feels like in this bed. That's what it's like to have ME/CFS.

One million Americans have it -- more than have MS or breast cancer -- but it's among the bottom in diseases funded by the National Institutes for Health. The main reason for that is because most people don't take a disease named "chronic fatigue syndrome" seriously. However, as you can see, it's not just being tired. It's as/or more debilitating than congestive heart disease, multiple sclerosis, lupus, or end-stage renal disease.

So what can you do?

1. Donate money to fund research into what's causing this disease and how to treat it. Organizations include:

CFIDS Association of America - great advocates who have funded great research
Whittemore-Peterson Institute - first clinic devoted exclusively to research and treatment
IASCFSME - the main professional organization of ME/CFS clinicians and researchers
ME Research UK - a UK organization doing superb advocacy and research
CFS Research Foundation - UK group doing cutting-edge genetic research

2. Let your elected officials know you want them to fund more biomedical research into the causes and treatments of ME/CFS. The CFIDS Association has a great "Virtual Lobby Day" page to make this as easy as possible.

CDC has lost its mojo -- if it ever had it

2009-04-30T00:48:00.001-07:00

The swine flu is not the only thing making life uncomfortable for the Centers for Disease Control at the moment. A week ago many of us in the ME/CFS community were abruptly given notice that the CDC wanted "stakeholder" input on their new 5-year strategic research plan per the suggestion of a peer-review study last November.

CDC is seeking input from interested parties on issues that CDC will consider as it develops this research plan...The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.

My first input would be to say that CFS is not merely a "medically unexplained chronically fatiguing illness" and if the CDC was reading current research by anybody but themselves they would know that. But I digress. The catch to this input was that one, "stakeholders" had about a week to prepare their "input" and two, CDC was only asking for input on five specific areas:

1. Studies of Defined Populations
2. Provider-based Patient Registries
3. In-hospital Clinical Studies
4. Laboratory Studies
5. Provider and Public Educational Intervention Research

Among the ways that we "stakeholders" could provide input were the traditional mail and/or email, as well as a fancy, technologically-advanced telephone conference on the afternoon of April 27th in which "stakeholders" could call in and provide comments. And boy oh boy did ME/CFS patients, researchers, and advocates call in!

The CFIDS Association posted remarks from among their comments on their Facebook page (also posted at Co-Cure - hopefully one of those links will work if you're not on FB or CC) and here are some highlights:

Katrina Berne, Board of Directors of The CFIDS Association:

The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, misappropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology. The CDC has not had a meaningful or significant impact on our understanding of the illness or how to treat it...

...It is my understanding that no one in the CDC attended the March, 2009 symposium presented by the International Association for ME/CFS in Reno, Nevada. This is a strong indicator of the CDC’s lack of desire to keep abreast of recent research developments, hardly a good sign of interest in moving forward by building on existing knowledge. (This was a truly appalling lack of professionalism on the part of CDC - M).

...Efforts to date have merely compounded the loud and clear message that the CDC does not take CFS seriously and has no organized approach to investigating this complex and devastating disorder.

From Jennie Spotila, Chairman of the Board of Directors for the CFIDS Association:

...Your "Draft Strategic Research Plan General Outline" was made available for stakeholder review only five days ago. This outline is so devoid of specifics that the only input I can offer is to point out what is missing...

...Your general outline could have been written two years ago, or ten. "Refine understanding of the etiologic pathways," "improve clinical management," "move CFS into the mainstream.”" Yes, yes, of course. There is nothing new in this list of objectives. There is no specificity, no measurable commitments, and no accountability. There is no acknowledgement of the many problems in the CFS program, and no plan to fix them...

Kim McCleary, President and CEO of CFIDS Association:

...But the CFS research group has lost its mojo.The CDC’s CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record...

...Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion.

...This group named the “Chronic Viral Diseases Branch” is currently doing little if any research on viral (or other biological triggers) of CFS...Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study...So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center...

That figure of $71 million dollars blows my mind. They've spent $71 million dollars in the last nine years and we don't even have a fucking biomarker much less decent treatment?! What the hell have they been doing with All. That. Money.?

I did not call in. I've spent the five days from the time I got the email to the day of the teleconference wondering what on earth I could say that would respond specifically to their five criteria. But Jennie Spotilla articulated what I haven't been able to, namely, that the five criteria were irrelevant and what needed to be addressed was what was missing from their list of priorities. Of course, part of the insidiousness of this disease, at least in my case, is that it slows the time it takes for me to process information substantially. The short-term memory problems and inability to concentrate don't help.

But members of the CFIDS Association were not the only "stakeholders" who phoned in, as this wonderful summary from Hillary Johnson, who wrote the book, Osler's Web, chronicling the history of ME/CFS, so poignantly details.

As it turned out, the all-afternoon call-in fest was remarkable in myriad ways. I hadn’t expected to be so profoundly affected by it.

In my long memory, it was the first time I have seen agency staff leave themselves quite so vulnerable. There was no filter between government staff and the public, some members of whom arrived in person to participate in the four hour session in Auditorium B2 of the CDC’s Global Communications Center. One couple flew all the way from Texas to make their brief comments, for instance; the wife, ill, the husband, healthy.

I cannot possibly do justice to her review so just go, go read. And grab a tissue on your way over because you'll need it.

In another plug for Twitter, Marly Silverman of P.A.N.D.O.R.A tweeted the conference so that those of us who were, say, not awake for the conference (like me) or otherwise engaged could read her real-time description of what was going on. You can go to her Twitter profile and read her tweets.

I don't know if the serious verbal lashing the CDC received on Monday will do anything to change its approach to ME/CFS. And the passion unleashed in the teleconference would be great to also unleash upon the National Institute for Health where the big research bucks are but CFS is among in the five least-funded diseases. But just maybe this will be a chance for ME/CFS patients (myself included) to push through the apathy that has befallen our community in recent years and fight for the research and treatment we so desperately need.

Two things you can do with little effort:

Sign Tom Kindlon's petition asking the CDC to dump its ridiculous "Emperical Definition." The only tiny bit of criticism I have with regard to the petition is that I would like such a petition to ask specifically that the Canadian Consensus Document replace the fairly universally despised Emerical Definition. But dumping the ED is imparitive as it's a contagion that could potentially infect more ME/CFS research. Think of it as the research equivelent of the swine flu...

UPDATE: I forgot to add a letter that Craig Maupin sent to the CDC with his assessment of their CFS program, along with detailed suggestions for improvement. And patient and advocate Mary Schweitzer, as always, gave her articulate and candid appraisal of CDC policy on ME/CFS. There are a handful of other reviews and letters floating around the interwebs as well. The listserve at Co-Cure is a great place to read them all.

Online socializing

2009-04-26T16:59:00.000-07:00

The Internet is great for those of us who are housebound and if you're starting to feel like a prisoner about to go crazy from spending months in solitary confinement, here are some options to connect you to other people.

Most of you have probably heard of Facebook or MySpace (I'm on Facebook and have joined a number of great ME/CFS groups there), but what you may not know is that various groups of people have created Facebook-like sites around their specific topic of interest, including ME/CFS. Dan Moricoli created the CFSKnowledgecenter where you can connect with other ME/CFS patients. Since joining back in December, I've been getting to know people not just throughout the world but in my own back yard as well.

ProHealth (formerly known as ImmuneSupport.com) has a super active bulletin board/forum where you can ask questions, connect with other people, and even just vent from time to time. They also have chatrooms, but I've found that nobody really uses them much, except the fibromyalgia chatroom, which tends to be a bit cliquey albeit a very friendly one.

And then there's Twitter. I've already come across a few of you on Twitter, but just wanted to let the rest of you know you can follow me at "behindasurface"not to mention I'd love to follow you. I've been twittering for awhile with a different group of friends and what I've loved about it is that you can hang out with friends throughout the day without really expending a lot of energy. It's sort of like a cross between hanging out in a chatroom and blogging, but without the effort that both of those require.

There are also two "twibes" or groups for ME/CFS on Twitter: one which I founded last week when there were no ME/CFS twibes and one that was founded since then and now has a few more members than mine.

It's not the same as hanging out with people in the flesh, but it's definitely helped me feel far less isolated.

UPDATE 8/4/09: Another great forum is the ME/CFS forum at Phoenix Rising, Cort Johnson's excellent, long-standing website. The people are friendly, generally well-educated about ME/CFS, and Cort does a great job both on the forum and in the Phoenix Rising site to explain complex research to the lay patient. Highly recommended.

No mercy in Sussex

2009-04-16T22:12:00.000-07:00

Very disappointed to see in The Times that Kay Gilderdale has been charged with attempted murder as a result of Lynn's death. Please keep her in your thoughts and prayers.

Update: The night I posted this, I joined a group on Facebook called "Prosecuting Kay Gilderdale is NOT in the PUBLIC interest". I was the 12th person to join. Today there are 267 members, which I think is very cool.

Why we can't exercise

2009-04-12T19:24:00.001-07:00

Best presentation I've ever seen on why we patients with ME/CFS get sick and how to treat it with Energy Conservation Therapy and activity management.

This is from the group at the University of the Pacific that I told you about in this post who found that we have problems with energy metabolism, specifically with how our cells use oxygen. Long story short: aerobic energy use is bad, anaerobic energy use is good. Basically you don't want to do something that exceeds your maximum heart rate for more than 30 seconds. I need to watch the video again to figure out how to figure that out.

I highly recommend spending the 35 minutes it takes to watch this video.

"Revelation in ordinary life"

2009-04-05T22:05:00.000-07:00

The purpose of all rules of piety is to extend revelation into ordinary life. They are survival tactics that help us withstand tedium, our disappointed expectations that something dramatic will happen—the sky open, a pillar of fire light our way—if we do this and that...

From "Cantillations" by Emily Warn

While the quote above is from a prose poem at Narrative magazine, I thought it was a good explanation of why I cherish religious ritual so much. And as it's the beginning of Holy Week, when revelation -- or at least the rules of piety -- are most likely to extend themselves into ordinary life, it seemed like a nice bit to share.

I keep intending to blog once a week but the reality is more like once or twice a month. Thanks for those of you who keep stopping in. I'm still sleeping 12-15 hours a day, which continues to frustrate me as the days whiz by.

Yet this evening during Mass I was thinking about the practice of Heyschasm in the Eastern Church, which, from the Greek word hesychazo, means "to keep still." It's a practice of saying the Jesus Prayer* over and over that, along with various positions and breathing patterns, will bring one to a greater understanding of the Divine. Perhaps even to experience the Light of God.

While I'm not sure I'm cut out to be a true hesychast, there does seem to be a Divine intention that I learn some amount of keeping still. I crashed badly last month after a combination of too many medical appointments and a weekly writing class next door (but it was only next door!). So the last two weeks I've found myself turning inward. Dumping the writing class. Cancelling any non-essential medical appointments. As I so often do in this never ending cycle of frustration, anger, and acceptance at and of the limitations illness imposes, I'm reaching the acceptance phase once again. If I must keep still, perhaps finding value in that is better than constantly trying to figure out how to do all the things I want to do in my sparse days.

In Sayings of the Desert Fathers is the following story: "Abba Arsenios was still living in the city, he prayed to God, asking to be shown the path to salvation, and in response a voice came to him from Heaven and said, “Arsenios, be solitary, be silent, be at rest. These are the roots of a life without sin."**

At the very least, they appear to be the roots of life with ME/CFS.

___________________

*The Jesus Prayer is simply "Lord Jesus Christ, Son of God, have mercy on me, a sinner."

**From "Hesychia: An Orthodox Opening to Esoteric Ecumenism" © 2007 James S. Cutsinger found here (note: PDF).

My chronic fatigue of being sick syndrome

2009-03-05T22:38:00.000-08:00

There are some days that living with the full tragedy of being sick feels far too heavy to bear. Or, to put it more childishly, I hate being sick. I'm so tired of being sick. I'm so tired of this damn apartment. I'm so tired of watching my life pass by and never getting to live it. Yes, I have chronic fatigue alright – I'm chronically tired of having no life.

After I woke up Tuesday morning, for some reason that I can't remember now, I began thinking about my old life studying American Evangelicalism and the Israel/Palestine conflict. How I would have been the one talking about Christian Zionism on Bill Moyers had I not gotten ill. I imagined talking about the lack of political power among Christian Zionists and the history of Evangelicalism and as I did, I was suddenly aware of how much training I have. How much knowledge I have that I never get to use. How it's like fruit rotting on the trees. A whole crop shriveling up in the fields.

Lately I have really resented that I don't get to be apart of the world outside my apartment. I see it through the windows of the medical transportation cab each time I go to the doctor's office, through the windows of my mom's car when she takes me to the grocery store, and through the sliding glass door to the balcony next to my bed. People socializing in delis and coffeehouses. Or pushing their babies in strollers. Or bicycling home from work. Or walking in or out of Powells Books. Or working in their plots in the community garden. Or going to church. Or standing in a line snaking around the block for a concert.

Tuesday I thought about how even if, say, Ampligen were approved and somehow I actually got access to it (fat chance given that I'm on Medicaid) and was made better, I still wouldn't even get to travel much because I'd have to hang around so that once a week I could go to the hospital for an infusion. And, of course, I'll forever be on Coumadin and need to have my INR monitored.

I feel so angry and lately God has received the brunt of it – mostly, I suppose, because I don't know who else to be angry at and since he's omnipotent, at least he could ostensibly do something about this. And yes, I'm angry at the NIH and the CDC and all those assholes trying to say I can somehow gradually exercise my way out of this. I feel angry at the disease itself but it has no will or morality and hell, nobody even knows quite yet what the disease is.

Begrudgingly I said my Lenten prayer. Keep from me the spirit of indifference and discouragement, lust of power and idle chatter...Grant to me...a spirit of wholeness of being, humble-mindedness, patience, and love...

Patience.

Treatments are coming. And not just Ampligen but interferons and antivirals that wouldn't shackle me to a hospital.

Patience.

At least now I can read – not a lot, but more than I could a year and a half ago.

Patience.

There is more work to do. More writing to do. More books to read. More thinking to do.

Patience.

But how much of my life will be left when effective treatments finally do arrive?

Keep from me a spirit of discouragement...

Grant to me patience...

Banishing the stranger with the candy

2009-02-22T21:25:00.000-08:00

Sometimes I get so used to feeling weak and exhausted that I forget it's not normal. Forget what "normal" even feels like. And often in those moments, when I'm getting out of the bathtub or making cookies, I start feeling a sort of pseudo-normal. As if my appearance and ability begin to fool even me. Do sick people make cookies or get in and out of a bathtub on their own? My mind begins to listen to those voices of doubt -- not totally believing, mind you -- just...listening. Like a child being lured away by the stranger with candy.

Maybe it really is all in my head. Maybe I really can get better with graded exercise therapy. I mean, I look so normal...

Of course, the sensible part of my brain quickly swoops in and chases away the strange man with the lollipops. The week before last I found the mere addition of attending to a bit of student loan paperwork almost too much extra to manage. Real normality is nowhere on the horizon.

Reading Cort Johnson's review of the new research out of the sports lab at the University of the Pacific regarding their test-retest protocol to diagnose and delineate the disability in ME/CFS was a profound reminder of how dangerous the stranger with the candy may well be. While I have not had my illness confirmed with this method, I do have plenty of past experience with the post-exertional malaise it analyzes. Including with a stationary bike, with which I used to warm up my arthritic knees. The last time I rode it for three minutes at moderate speed, I spent the rest of the day flat on my back in bed.

The development of the test-retest protocol -- or the Stevens Protocol, as it is officially known -- is exciting stuff. The technology is a staple of cardiology clinics across the world, so there's no long wait for it to trickle down to the average clinical setting like the RNase L enzyme test. And the research has been recreated thousands of times so that it is very unlikely another study will negate its findings. As Johnson states, "the news couldn’t be better for chronic fatigue syndrome (ME/CFS) patients."

The other big research that came out recently -- but which has not been widely reproduced -- is Sarah Myhill et. al.'s paper on ME/CFS and mitochondrial dysfunction in which the authors argue that an "ATP profile test" -- ATP being a coenzyme which is the "energy for all bodily functions," shows "biochemical lesions" which inhibit cellular respiration. There have been studies in the past looking at problems with mitochondria -- the part of the cell which translates chemicals like glucose into energy -- in ME/CFS patients, but this study appears to have the most significant results thus far. It's also promising because it can be diagnosed with a reasonably accessible test, unlike some of the other diagnostic test associated with ME/CFS (i.e. test of Natural Killer cells or T-cells or RNase L enzyme). And if these findings turn out to be true, it is yet more evidence of how dangerous programs like "graded exercise therapy" are.

This was a small study with only 71 patients and 53 healthy controls, so the test will need to be reproduced on a larger scale. And the test doesn't answer the chicken and egg question, namely, is the mitochondrial dysfunction the cause or the result of whatever disease process is playing out in the ME/CFS patient.

But just maybe the Stevens Protocol and/or the ATP profile test will finally banish the stranger with the candy along with his sweet doubts and false hopes.

Bullets and blocs

2009-02-11T00:25:00.001-08:00

Some people have asked why the Palestinians in Gaza did not set about developing their own economy when the Israelis withdrew in 2005. Besides the fact that Gazans have had a difficult time being able to import or export anything and the Israel Defense Force has a tendency to bomb city blocks, there have also been problems like this:

Oh and north of the Gazan border, it looks like Tzipi Livni and Kadima -- the center party of the late Ariel Sharon -- is squeaking out a win, but probably not enough of a victory to avoid a coalition government with Likud and its leader Benyamin Netanyahu. Indeed, according to Haaretz,

By law, the president must consult with all the parties as to who they prefer as prime minister, and whoever is recommended by more Knesset members is given the nod. Hence if the religious and rightist parties all recommend Netanyahu, he would get first crack at forming a government.

In terms of blocs, all three TV exit polls predicted a rightist bloc of 63 or 64 seats out in the 120-strong Knesset, compared to 57 or 56 for the leftist bloc.

So does Netanyahu count as a "partner for peace?" Or Avigdor Lieberman, the guy Kadima (and Likud) is courting to help them get a majority of MK votes?

Why are we so different?

2009-01-18T19:34:00.000-08:00

The week before last the Centers for Disease Control -- you know, that organization that's been so efficiently using your hard earned tax dollars for ME/CFS research -- came out with a study that "confirms childhood trauma as an important risk factor of CFS."

Well, okay, ME/CFS research has long recognized that any number of stressors, be it an infection, injury, or psychological trauma, trigger ME/CFS. So why is this study all that significant unless it's to underscore that patients with CFS are a bunch of crazy people?

In addition, the study has a number of methodological problems which Pamela Weintraub lays out rather neatly using quotes from an interview with author Hillary Johnson.

Some of the Weintraub/Johnson highlights include:

The CDC recently watered down the definition of "Chronic Fatigue Syndrome" so that people with psychiatric conditions that cause fatigue are included among those who qualify for a diagnosis of CFS. As Johnson puts it, "they have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease."

The study fails to cite a 2001 study that found the exact opposite of what this study supports. That paper, by noted ME/CFS researcher Lenny Jason, "revealed that significantly fewer individuals with CFS reported abuse as compared with those who did not." The CDC group should have at least said what it thought the Jason et. al. group did wrong and why it discovered such a markedly different result.

It was nice to see someone argue this same point I have, namely, that researchers should not be comparing CFS patients to healthy controls, but rather to MS patients or cancer patients or patients with congestive heart failure or Parkinson's disease. Are child abuse victims more likely to get other diseases such as MS or congestive heart failure? The fact that ME/CFS is singled out as connected to child abuse demonstrates a bias that believes people with CFS specifically are suffering from a form of psychopathology (or neuro-endocrine-immune-psychopathology) while those with other similar conditions are sick simply because they got the wrong genes.

Lastly, the empirical data that the CDC used for this study were questionnaires that individuals filled out themselves and morning salivary cortisol levels. There were no tests of other known ME/CFS physical abnormalities such as low natural killer cell levels or Rnase L enzyme activation. Basically we have "fatigued" and "unwell" people who report being abused as children and have low morning cortisol levels. Big shock there!

Now there were patients in this study who had CFS but who did not report being abused. And apparently they did not have the low morning cortisol levels, leaving the authors to conclude that this "hypocortisolism likely reflects a marker for the risk of developing CFS rather than being a sign of the syndrome itself." So does this mean that perhaps child abuse -- which, to be sure, literally damages the brain -- exacerbates CFS or causes a whole different disease in and of itself? And if it is possible to have CFS but not have been abused as a child and therefore not have the hypocortisolism, how do they conclude that these findings "lend further support for the hypothesis that CFS represents a disorder of adaptation that is promoted by early environmental insults, leading to failure to compensate in response to challenge?" Have they shown that the non-abused CFS patients have had early environmental insults that they have failed to compensate for?

And why child abuse? Why not study childhood infection, especially as ME/CFS patients are far more likely to develop the disease following an infection? Not to belabor the point -- or maybe indeed to belabor the point -- but it does exhibit a distinct psychiatric bias here.

And, of course, the elephant in the room is always always always that the condition is defined so broadly that we don't even know if the abused CFS patients even have the same disease as the non-abused CFS patients.

I will acknowledge that I was abused as a child, and I don't doubt that has had a distinct physiological impact on me. For the longest time after leaving home I struggled with my body going into that dizzying "fight or flight" response every time I had to deal with the least bit of conflict.

After undergoing a form of therapy known as Dilectical Behavioral Therapy in which I learned various mindfulness techniques, as well as developed habits such as daily meditation, I have been able to calm that "fight or flight" response. But I remain bedridden most of the day. At best, it has helped me with pain -- of both body and soul -- as well as cope with and manage this devastating illness.

It may well be that the combination of child abuse and physical injuries and infection was just far too much for my poor body to handle. And perhaps having therapy earlier in life may have saved me from developing ME/CFS later.

(It goes without saying that um, child abuse is bad, mmkay. And does lots of bad things to a developing child, mmkay. So, you know, don't abuse your kids because they will be fucked up in ways you may not even realize, mmkay. [South Park reference for those of you not familiar with Mr Mackey and his infamous "mmkay."])

But I also know that therapy did not make me better now that I am sick. What I need the CDC to do is figure out what is happening in my body now and figure out how to to treat that now. We know that stress can cause heart disease and cancer, but we don't merely give heart disease and cancer patients a therapist. No, we treat the underlying cardiovascular and immune system pathology in addition to any underlying psychopathology. Why should it be any different in ME/CFS?

Needed sympathy

2009-01-05T12:22:00.001-08:00

I keep telling myself to quit reading about what's going on in Gaza. I mean, I'm no longer an Israel/Palestine specialist. My days are so short from sleeping each and every day until the middle of the afternoon (or later) that I've got a backlog of email and phone calls to return, not to mention my blogging and other writing has suffered. With the power cord to my laptop broken, my online time during those precious conscious hours is even shorter while I share a cord with A. Besides, there are massacres going on all over the world such as in the Congo or Darfur, why is this one so special? And Lord knows the killing isn't going to stop based on whether or not I read about it.

I guess I just feel an obligation to make sure that as many of us are reading -- and watching and listening -- as possible to what is happening in Gaza as my country is directly involved in providing the weapons that are killing Palestinians. And while sympathy for the people in Congo or Darfur is a given (not to mention that the Congolese and Darfuris can actually flee to neighboring countries), too many people believe that it is perfectly reasonable to kill Palestinian children. I suppose in some cosmic, mystical way, I feel that my sympathy is needed.

There are, of course, plenty of people who are sympathetic to the plight of those in Gaza, including a large number of Jews. As my last post was from a Palestinian organization, I thought I would list some of the Jewish organizations and bloggers who are also appalled at what is happening to Palestinians in Gaza. Do note that this list is not even close to be exhaustive.

Ampersand (aka Barry) at Alas, A Blog posted Fathima Cader's list here. Others not mentioned in that list include:

Brit Tzedek

Jewschool

ICAHD (Israeli Committee Against Housing Demolitions)

Modern Mitzvot

Haaretz (sort of...the editors are calling for a cease fire) including columnists Gideon Levy, Amira Hass, and Akiva Eldar

JVoices

Tikkun

Tikkun Olam (Richard Silverstein)

Jews Sans Frontieres

Aron's Israel Peace blog

South Jerusalem

Residents in Sderot -- the town that's been bearing the brunt of Hamas rocket attacks.

Refuseniks -- A movement of Israeli youth who refuse to serve their required military service in the Territories. There are also links there to videos of Israelis protesting the Gaza offensive.

And some guy named Jonathan Stuart Leibowitz aka Jon Stewart.

There are plenty more and you can read them by clicking the links sections at the links listed above.

Israel has forbidden journalists from entering the Gaza Strip and bloggers inside are having a hard time detailing what's happening due to lack of electricity and mobile phone service. However there are a handful of places to read first hand what Gazans are going through.

Raising Yousef -- While Laila herself is in the US at the moment, her parents are in Gaza and she's been reporting what they are reporting to her.

Tales to Tell -- A member of the International Solidarity Movement (a good source of info itself) in Gaza who is helping where needed, particularly with the Union of Health Work Committees. Lots of ambulence rides and tales from the hospital.

In Gaza -- More hour by hour accounts.

ei -- The Electronic Intifada is a great resource of news, commentary and background information.

Please do not interpret my support for Palestinians to mean that I support Hamas. I do not support violence done by either side. And Hamas's leadership in Gaza since it took over in 2007 has been appalling and brutal.

However I do believe that Israel has an obligation to negotiate with Hamas as they are the elected leaders of the Palestinian people. If Palestinians had to negotiate with Ariel Sharon, Menachem Begin, and Itzak Shamir (though with Begin there wasn't much direct contact between Palestinians and Israelis), there's no reason why Ehud Olmert cannot sit down with Ismail Haniyeh and Khaled Meshal.

"The narrow gate of justice"

2009-01-01T22:22:00.000-08:00

As I don't think Sabeel -- the Palestinian liberation theology center -- will mind if I post this email I got from them in regards to Gaza in its entirety, here our some thoughts on the situation between Israel and Gaza. My notes are in italics.

SABEEL'S REFLECTION ON GAZA

The Narrow Gate of Justice

"Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." (Matthew 7:13-14)

On Saturday, December 27, 2008, as the children of Gaza were about to leave their schools to return home, the Israeli air force carried out a massive air attack against the people of Gaza. In less than 4 hours, over 150 people were killed and 200 injured - men, women, and children. By the end of the fourth day, over 390 Palestinians were killed and almost 2,000 injured. On the Israeli side, 4 were killed and no statistics are available on the number of injured.

FACTS ABOUT THE GAZA STRIP:

Population: 1.5 million. 75% of them are refugees. 45% of them are under 14 years.

Area: 360 sq km, 139 sq miles.

Population density: 4,167 people/sq mile (The highest in the world.)

80% of Gazan households live below the poverty line, subsisting on less than $3 per person a day.

80% of all Gazan families would literally starve without food aid from international agencies.

The Israeli occupation of the Gaza Strip, similar to that of the West Bank, including East Jerusalem, started with the 1967 June war. In September 2005, the Israeli army pulled out of Gaza and removed its illegal settlements. However, the illegal Israeli occupation of the Gaza Strip did not come to an end. Israel maintained its tight control over Gaza's borders (air, land, and sea). To make things even worse, Israel imposed a siege on Gaza in June 2007, thus tightening its border restrictions and causing the humanitarian conditions to deteriorate further. Under the brutal siege, every aspect of the lives of the people of Gaza was controlled. They were totally dependent on Israel for fuel, electricity, cooking gas, medical supplies, food supplies (even flour), building material, etc. Israel made sure that the Palestinians would remain alive at barely the survival and basic subsistence level (and if someone needed to leave the Gaza Strip for advanced medical treatment, he or she may or may not be able to get it).

On November 14, 2008, UN General Secretary Ban Ki Moon issued a statement that said, "The Secretary-General is concerned that food and other life saving assistance is being denied to hundreds of thousands of people, and emphasizes that measures which increase the hardship and suffering of the civilian population of the Gaza Strip as a whole are unacceptable and should cease immediately."

IMPORTANT POINTS TO REMEMBER:

FIRST: A word about tahdi'a (the period of calm or truce). It is important to note that among the terms of tahdi'a was the understanding that Israel would lift the siege of the Gaza Strip, and gradually extend the truce to the West Bank. This Israel did not do. It only partially lifted the siege and allowed a trickle of vital commodities into Gaza which kept the people at the level of mere survival. Israel's raids into the West Bank continued on a daily basis and scores of Palestinians were arrested or assassinated.

The International Herald Tribune reported on December 19, 2008 that it was Hamas' understanding that after the tahdi'a Israel would open the crossings and allow the transfer of goods that have been banned since the siege was imposed. There was never a return to the 500 - 600 truckloads of goods shipments that used to go into the Gaza Strip before the siege. "The number of trucks increased to around 90 from around 70." The facts and figures tell the real story. Sadly, however, many western leaders have shut their ears, eyes, and mouths against the cry of the oppressed. Most of the world judges Israel by what it says and not by what it does; while they close their ears to the comprehensive and workable 2002 Peace Initiative adopted by all the Arab leaders including the Palestinians. Even Hamas has agreed to a Palestinian State within the 1967 borders as expressed to President Carter on his latest visit to Syria.

SECOND: So long as Israel holds the Palestinians in general and the Gazans in particular under occupation, they (the Palestinians) have the right, according to international law, to resist the "seemingly never ending" belligerent occupation and struggle for their liberation. Israel, therefore, cannot demand from the international community sympathy and political support and from the Palestinians calm and security, while it maintains its inhuman and illegal occupation. It is only when Israel ends its occupation that it can have a legitimate right to defend its borders. Israel stands in violation of international law and is the aggressor due to its belligerent occupation.

(I would also point out that embargoes or sieges are often considered an act of war. In 1967 when Gamal abd-al Nasser closed the Straits of Tiran so that Israelis could not get goods in or out, Israel considered this an act of war and launched air strikes against Egypt, thus beginning the Six Days War. While I believe that non-violent resistence is the proper response to violence -- as does Sabeel -- Hamas technically has just as much right to use force against what it sees as an act of war. The problem, of course, is that neither Hamas nor Israel can avoid civilian casualties in the forms of warfare they have chosen and as such both are engaging in crimes against humanity. )

THIRD: The Arab leaders and governments can do more for peace (like, say, not shoot at Palestinians who were desperately trying to flee Israeli bombs). Many people accuse them of a conspiracy of silence. Most of the Arab people are ashamed of the positions of their governments because they have not used their resources collectively to end the occupation. Sabeel is not talking about the use of force although many of our Arab people do. We believe that the Arab governments could have contributed much more towards a resolution of the Palestine-Israel conflict through nonviolent means. Tragically, this did not happen.

(You may remember that Palestinians had a civil war between Hamas and Fatah that started in December 2006 and led to Hamas gaining control over Gaza leaving Fatah in control of the West Bank. Palestinian President Mahmoud Abbas, who is from Fatah, has been seeking to regain control of Gaza along with his multi-million dollar mansion located there. As Juan Cole pointed out in this article for Salon, militant groups associated with Fatah, as well as dissident Hamas groups, have been the ones lobbing most of the rockets into Sderot until Hamas announced on December 18th it would no longer keep the truce it had with Israel because Israel had not lifted the embargo and had begun violent raids in the preceeding weeks. While Israel is pounding Gaza, Abbas and Fatah are salivating at the prospect that Israel will oust Hamas, and are even quite possibly helping Israel with the current war.)

FOURTH: Although Sabeel wishes that Hamas and other Palestinian factions had chosen a nonviolent way to resist the Israeli siege, we feel that the disproportionate use of military force against the Gaza Strip and the number of casualties that it produced must be strongly condemned. It is a shame that once again many western leaders have failed to see the deeper issues that are involved. They chose to stand with the occupier rather than with the occupied, with the oppressor rather than the oppressed, and with the powerful rather than with the weak. It is important to continue the resistance against the belligerent occupation. But we call on our Palestinian people to abandon the armed struggle and to choose a more potent and effective way - the way of nonviolence. We can do it and we can win. The Palestinians are capable of setting an example for the rest of the world. This is what we must do; and this is what can restore to us our human pride and dignity.

(I would note that Israel could also be an example to the world by renouncing violence as it so frequently demands of Hamas.)

In fact, we must look to a world where wars, and weapons of violence and destruction would be banned and where oppressed nations would choose the higher moral ground and resist the evil of belligerent occupations by nonviolent means. We hope for a world where a reformed United Nations would never be held hostage by powerful nations, but would enjoy the freedom to establish justice for the oppressed of the world.

FIFTH: We believe that the real message of the Palestinians to the world is a genuine cry for freedom and liberation. The Palestinians did not initiate the violence. The prolonged illegal Israeli occupation is the real cause for the violence in our area. Israel has shut the door on justice. The only way that can guarantee a lasting resolution of the conflict is for the United States' new administration to dare and open the door of justice. We believe that it is the narrow gate of which Jesus Christ spoke. It is the gate that leads to a life of peace and security. "Enter through the narrow gate; for the gate is wide and the road is easy that leads to destruction, and there are many who take it. For the gate is narrow and the road is hard that leads to life, and there are few who find it." This is the narrow gate of justice. This is the basis of international law. The way of military domination, occupation, violence, and wars is the wide gate that leads to destruction; while the gate that seems narrow and hard is the one that leads to justice, peace and security for both sides. We have tried the wide gate and it has only brought us destruction. It is high time to try the narrow gate of justice so that we might find life.

The haunting brown eyes of ME/CFS

2008-12-16T20:49:00.000-08:00

Yet another ME/CFS patient has died.

I've been trying all week to think of how to write about Lynn Gilderdale's death and I daresay that during the intervening seven days or so I haven't come up with anything particularly profound. I feel angry and sad. Angry that she had to suffer so much. Sad that she had to suffer so much, as well as heartache for the family. And if I had the energy for it, rage that anyone would dare to insist that her suffering was simply something "behavioral." Or compare it merely to the "flu."

While the main story in the Daily Mail about her death had an absolutely appalling headline (bad bad sub editor!), the accompaning story by journalist Gill Swain was a poignant description of Lynn's life before and during ME/CFS.

Before meeting this remarkable mother and daughter I had seen African children suffering from starvation, met people dying of Aids, patients paralysed from the neck down, others in the last stages of terminal cancer. But I had never seen a living person as desperately ill as Lynn Gilderdale.

Hypersensitive to light and noise, she lay on a sheepskin to prevent bedsores, with her head resting on a towel. There was a tube down her nose delivering liquid food and a Hickman line pumping drugs straight into her chest. Her legs were paralysed and without feeling, she was unable to sit up without passing out and her neck was too weak to support her head.

She had lost more than half the bone density in her spine and had gone through the menopause at the age of 20. She was in constant pain. She was on drugs to prevent sickness and spasms, was unable to swallow and had not spoken since August 1992, three months after she had been diagnosed with ME at the age of 14.

In my 35 years as a journalist, the story of Lynn and Kay Gilderdale was one of the most affecting cases I had come across. I felt shocked, chastened and humbled as I talked to them and the memory of Lynn's haunting brown eyes, set in an exquisitely beautiful face, has stayed with me ever since.

Over the last few months as my days slip by so quickly because 12-13 hours is spent sleeping, I've found myself frustrated that so much of it has to be spent semi-conscious rather than doing things like reading, writing, or talking to friends. Cases like Lynn's remind me that it could be so much worse. That I'm so lucky to be able to sit up and turn a laptop on or have the occasional (and lately it's been very occasional) amourous moment with A.

But, of course, it could also be so much better. How many more ME/CFS patients have to die before it will?

While we wait for better, I hope both Lynn and Kay are getting the peace they so eminently deserve.

"The disgusting machine that is an American political campaign"

2008-11-15T16:44:00.000-08:00

When you think of professors, you often think "pretentious" or "pompous" and every now and then "absent-minded." You know, tweed jackets with leather patches on the elbow and all that.

But I remember this one professor I met my second year of grad school who wasn't exactly like that. He had a new book out, which has become a seminal work in its field, and my academic adviser, my friend B., and I drove down to Eugene to hear him speak. Yes, there was a bit of technical language in his lecture, delivered with a slight Chicago accent. That is, except the part where a community member asked him a somewhat hostile question (I can't remember what specifically but I think it had to do with the professor's criticism of Palestinian leadership) and the two descended into a high speed verbal brawl in Arabic ending with a huffing, sarcastic shukran jazeelan -- thank you very much. He then calmly returned to his academic discussion.

Afterward my adviser talked with him a bit about nineteenth-century Palestine and introduced me to him. The professor asked me what my research field was (at the time it was evangelical missionaries in Palestine during the founding of the state of Israel). Suggested a number of resources for my research. Remembered an article that had come out in a recent academic journal about my topic, but couldn't remember the exact details.

"Here's my card. Go ahead and send me an email and I'll send you the details."

Then someone whisked him away as is apt to happen at events like that. But I did email him later that week and got a prompt reply with the article title, author, and journal information.

The professor's name was Rashid Khalidi (pronounced KHAL-i-dee) and until the last week of the election (it's taken me two weeks to write this post), he was mostly someone known just to those of us studying nationalism in the modern Middle East. Though Khalidi is also a bit of a media tart, as A. would call him, as he's often on NPR, Charlie Rose, The Newshour, Nightline, etc. talking about the contemporary situation in Israel/Palestine. And he would know, not just because he is one of the world's preeminent scholars of Arab nationalism and Palestinian history, (not to mention knows a thing or two about Western imperialism in the Middle East) but also because he was an adviser for the Palestinian delegation to the Madrid Peace Conference in 1991 (but was not a spokesperson for the PLO -- not that the PLO is a bad thing as they are considered the good guys by Washington these days). In addition, he helped found a non-partisan think tank to track Palestinian public opinion and democracy (though it looks like fellow founder Khalil Shikaki is the one doing most of the tracking these days).

Of course, listening to the media, Dr. Khalidi sounded like some crazed, rabid anti-Semite (though note that his parents are from Palestine making him a Semite too). Indeed when A. watched this video of Khalidi on Charlie Rose over at Juan Cole's blog, he was surprised to see a guy who sounded American and looked "Jewish" (my godfather Talal, who is half Jordanian, is often told he looks Jewish, as have a number of Palestinians I know).

McCain's "neo-Nazi" comparison notwithstanding, even when liberals talked about how John McCain was also connected to "this guy," I was disappointed at times when they failed to point out that the issue wasn't that both Obama and McCain were connected to -- and somehow dirtied by -- "this guy" but that neither of them should feel any shame about being connected to Dr. Khalidi. Obama and McCain may disagree with Khalidi regarding the Israel-Palestine conflict, but that does not make Khalidi some "radical" to be denounced and disowned as quickly as possible. As Scott Horton wrote in Harper's regarding McCain's funding of Khalidi's democracy project, "McCain and Khalidi appear to have some joint interests, and that fact speaks very well of both of them." Or as Christopher Hitchens (with whom I'm pleased to actually agree for the first time in awhile) stated, "... if Barack Obama was looking for a Palestinian friend, he could not have chosen any better." Exactly. And it was infuriating to watch a man who is both brilliant and kind dragged through the mud in such a way. "I actually find it demeaning, insulting, and depressing to have to defend Rashid," said Barnett Rubin, an expert on Afghanistan who is himself Jewish and had just had dinner with Khalidi a few weeks earlier.

Many pointed out that the issue wasn't really that Khalidi is some sort of scary radical but that he is Muslim with a distinctly Arabic name. McCain said that race would not play an issue at the polls, but he clearly wanted and encouraged ethnicity to. And in so doing led a number of his strongest supporters to say that "their hero was losing not only an election but his reputation—or, as one prominent backer put it, 'his soul.'"

A year and a half ago, during a brief improvement while taking Lyrica, I was healthy enough to go hear Dr. Khalidi speak again, this time just up the street from me at Portland State University. Most of his lecture was a denunciation of Palestinian leadership -- both Fatah and Hamas -- as well as Israel's total control of Palestinian life, including in Gaza from which the Israelis have ostensibly withdrawn (and into which they are now depriving the UN from bringing food).

At the conclusion of the lecture, Dr. Khalidi took questions from the audience and one man asked him to comment on whether the Israelis control the mass media and hold the American government hostage, with someone like Mort Zuckerman at US News and World Reports being a prime example, or was it just a case of the media being out to lunch on this issue. Dr. Khalidi had little time for this thinly veiled anti-Semitism.

(I taped the lecture to share with Talal at some point...some day...which is why I can provide such a lengthy quote.)

"I don't think the question is about the mass media. I think the question has to be, if you're a politician, what's in it for you?...Where is a body of voters in the hundreds, or thousands, or millions, who's vote will depend on somebody not voting in favor of Israel? Now there is a bloc of voters, people who will give...tens of millions of dollars, and will deliver district after district, and really deliver...There is simply nothing there on our side of the issue, in terms of political weight in this country.

I mean, I feel really sorry for people who believe there's a great conspiracy. There's no conspiracy. There's votes! And there's money! And there's organization! And on the other side, there are no votes, there's no organization, and there's no money! It's a no-brainer. I mean, a politician would be a moron to put her or his head into the meat grinder of opposing people who have money, organization, and votes.

...And what you said about the press, God knows, I live in New York City. I have the New York Daily News. I have the New York Post. And I have the New York Sun, which is the worst of the lot. Not to speak of the New York Times. And that's what people read in New York City. So I know about the media. I deal with it all the time.

But that is not the core of the problem. The core of the problem is...that people like us don't have a lot of votes. People like us cannot deliver the checks that they need to run the disgusting machine that is an American political campaign. And people like us don't have organization. So when or if we had all those things and there were still some sinister, tenebrous conspiracy pervading, then...we might find that not's enough. But in the absence of all those things, which seem to me to be the obvious answer, we shouldn't need to look very much further...What you've gotta do is play the game...You have to play that game one way or another or else you can't talk about it. I mean, you don't have the right to talk about it unless or until there is that kind of level."

Yes, folks, that's the "radical" "Jew-basher" whose relationship with Barack Obama, the Republicans told us, should scare us all (thankfully it didn't scare 53% of the electorate). Another casualty of yet another "disgusting machine that is an American political campaign."

CDC research funding scandal 2.0

2008-11-11T18:30:00.000-08:00

Some of you ME/CFS readers might remember that ten years ago the Centers for Disease Control (CDC) got caught misusing money Congress had appropriated specifically for CFS research by using it for other diseases instead. At the time, CDC employee/CFS researcher Bill Reeves blew the whistle on his colleagues and went on to take the lead in CFS research, including reallocating the misspent money for the research it was intended.

But, alas, it is now Reeves who has been apparently caught misappropriating money. And this time, instead of the money going to other research, it's simply going to a pet contractor.

Kimberly McCleary, president of the CFIDS Association, testified (hat tip: Co-Cure) before the Department of Health Human Services CFS Advisory Committee at the end of last month about her outrage at having to confront serious funding issues at the CDC regarding CFS research yet again.

Based on information we have obtained directly from CDC officials (thank you to Sarah, Mike and Steve for the improved transparency over the past 5 months) and available on public information sites, the “boom” of CFS research that occurred during the “payback” phase from 1999-2005 has eroded to a “bust” of shameful scientific leadership, zero accountability, invisible outcomes and millions and millions of dollars stuck in suspended animation, if not wasted. At least in the 1998 scandal, science was being conducted that would aid discoveries in other diseases. This time, only the government contractors seem to be benefiting from millions spent for which there are no worthwhile outcomes for American taxpayers, or CFS patients.

Infuriating? Yes. I think many of us patients who have been following the current research at the CDC have felt like it was simply stagnating, and now we know why and how.

But I think there are a few hopeful things here. I've been glad to see the CFIDS Association back away from its relationship with the CDC in the last year and now forcefully and publicly confront it.

I also feel hopeful because last time the funding crisis brought an infusion of money into ME/CFS research, as well as a change in personnel. Reeves getting caught being naughty just might be the means of getting rid of him and his view of ME/CFS as a "mind-body condition." Indeed a few months ago at the cfs_research Yahoo group I said something to the effect that Reeves getting caught in a 1998-like scandal would probably be the best thing we could hope for in terms getting new leadership and research at the CDC.

I just didn't think it would actually happen.

Update: This comment from the NIH representative, Dr. Eleanor Hanna, was music to my ears:

NIH does not have confidence in the new definition for CFS being used by CDC and that it had resisted using the higher prevalence figures in its materials for that reason. She conveyed her concern that the use of different definitions made it difficult to compare results from CDC-funded research and NIH-funded research, and that this would present greater problems as treatments are studied.

Drs. Lucinda Bateman's and Nancy Klimas's comments are also spot-on.

Unfortunately, it sounds like the CFS Advisory Committee, and in particular, its research committee, did not share the urgency and dismay of McCleary, Hanna, and various clinicians and patients.

Sigh.

Guess that means we gotta keep pressing the issue. And perhaps the recent election presents us with new opportunities.

My election roundup

2008-11-05T13:51:00.000-08:00

This and this helps to explain why I voted for Cynthia McKinny for president.

This and this and this (though I don't understand some of the fanfic references in that last one) were a bit of an antidote to the saccharine sweetness of the week.

And this has to be my favorite media report about Obama's win:

Obama Win Causes Obsessive Supporters To Realize How Empty Their Lives Are

But I am happy the Republicans had their asses handed to them. So very happy.

New favorite Homer line and Colin Powell redeems himself...sorta

2008-10-19T20:29:00.000-07:00

The Simpsons was actually funny tonight. And I have a new favorite Homer Simpson line:

C'mon, gravity. You use to be so cool.

After all the trouble I've had with that bitch, gravity, I couldn't have said it better myself.

***********

In other news, Colin Powell may have made his future special place in hell a little more comfortable with his comments today on Meet the Press. He took John McCain and the Republicans to task for the nastiness of their rhetoric about Muslims. Saying the things others -- including McCain -- should have said.

I'm also troubled by, not what Sen. McCain says, but what members of the party say, and it is permitted to be said such things as: "Well, you know that Mr. Obama is a Muslim." Well, the correct answer is: he is not a Muslim. He's a Christian. He's always been a Christian.

But the really right answer is: What if he is? Is there something wrong with being a Muslim in this country? The answer is: No, that's not America. Is there something wrong with some 7-year-old Muslim-American kid believing he or she can be President?

Yet I have heard senior members of my own party drop the suggestion: he's a Muslim, and he might be associated with terrorists. This is not the way we should be doing it in America.

(Hat tip to Glenn Greenwald for the text)

Powell then went on to talk about a photo essay that included a picture of the tombstone in Arlington Cemetery of a Muslim soldier. It was a poignant, powerful rebuke that actually made me respect Colin Powell again...at least a little bit.

He'll have to do a lot more to make up for that obscene, deceitful speech at the UN leading us into the Iraq War.

On track

2008-09-21T20:23:00.001-07:00

I never fail to underestimate the depths of humiliation this illness continually takes me.

A few weeks ago I was having what I thought was a Good Walking Day. A day when I didn't hesitantly shuffle along the pavement as if my ankles were attached to two giant filing cabinets. A day when I felt, if not normal, then perhaps passable for normal.

My mom was suppose to pick me up from acupuncture, but after a quick cell-phone call, I discovered I had mixed up the time I gave her (as my damaged brain is apt to do on occasion) and would have to wait an hour and a half for her to pick me up. Not only did I find the sitting on the corner of 33rd and Belmont -- amusing as it can be at times -- wholly unappealing, but it would mean I would miss my daily call from A. on a day when I was more keenly aware of his absence. Since it was a Good Walking Day, I decided I'd hop a bus home. The downside to that is that the closest bus stop to my apartment on the return ride is about four and half blocks away downhill (or uphill from the bus stop). As I began that last, uphill leg of my journey, I thought to myself, yes, indeed, this really was a Good Walking Day. That is, until a tiny white-haired old lady in a light blue dress whizzed past me on my left.

This last Friday afternoon I had acupuncture again and walked to the bus stop departing for my acupuncturist's office just a block and a half away (with the usual plan that my mom would pick me up afterward). Again, as I meandered along, I thought that my walking ability seemed, maybe not quite on the level of a Good Walking Day, but pretty damn decent. Yet before I reached the end of the block, I kid you not, a man with a broken leg on crutches passed me on the left.

Crutches? Are ya fucking kidding me? For the love of God, does the humiliation never end?

Yes, I know. I should shut my mouth now and be grateful I haven't lost my ability to use the toilet on my own.

It's funny, though, just how much my ability to walk is mediated by this illness. While there are the Good Walking Days when my gait is natural, if slightly deliberate (who am I kidding? I make great-grandmas look like Jamaican gold-medalists!), I have other days when I feel almost hemiplegic. I walk with a very distinct, if inexplicable limp on my right side, as if I were dragging it along like a heavy suitcase. And, of course, I always walk with a cane, Good Walking Day or no, though I suspect on those bad days I should probably be using a walker.

A study back in May suggested that perhaps gait characteristics could be used to monitor the disease process of ME/CFS. And when I went to look for that paper, I was surprised to find some studies back in the 1990s also suggesting gait abnormalities. All three studies insisted this suggested central nervous system pathology. But I suppose James Jones at our esteemed CDC would tell me that I just need to see a therapist and Peter White of the UK would tell me I just need work harder at walking.

Yet I couldn't help but think of my walking difficulties while I read this paper this afternoon that insisted ME/CFS was really caused by an enterovirus, the genus that contains the polio virus. While polio itself may have been eradicated, other forms of enterovirus have "filled the vacuum" its absence has created. I was particularly struck when the author, Dr. J. Irving Spur, mentioned labyrinthitis as a trigger, as getting that was the proverbial straw that broke the camel's back for me. Gait abnormalities are mentioned in a symptom catalogue located in the appendix.

He, of course, is not the first to discuss enterovirus. Dr. John Chia began the year with a study finding an enterovirus in stomach biopsies of 83% of 165 ME/CFS patients and 20% of healthy controls. Much more suggestive than some of the early muscle biopsy studies of the 1990s.

Yes, there are all kinds of viruses linked to ME/CFS. And Chia or Spur need a lot more research to verify their work. And even if they are right, we have no way yet to treat an enterovirus. But, damn, I couldn't help but feel that they are on the right track.

You know, so that someday my feet will always stay on track and everyday will be a Good Walking Day. And when that day comes, those great-grandmas and guys on crutches will be eating my dust.

Mike Huckabee is funny

2008-09-11T20:48:00.000-07:00

So, I can't say I would have voted for him as we differ on a number of issues, like, say, healthcare. But after watching this performance last night as a stand-up comic, I do think he may have a new career option in front of him. I laughed myself silly watching this. My favorite line was "Mitt Romney...a man with more position than an underage Chinese gymnast..."

Opportunity knocks -- but can we really answer?

2008-08-25T22:06:00.000-07:00

Over the last month or so, there have been a couple of rebukes of ME/CFS patients for their dearth of contributions to research organizations, as well as an exhortation for funds from the CFIDS Association for their current million dollar campaign to expand their research program.

One patient, Jeremy Bearman, chastized patients for spending thousands of dollars on dubious treatments instead of giving that money to research organizations.

It's fine and understandable to spend some money on experimental treatments but it is short sighted to spend vast amounts of money on these treatments and not support research efforts. I know that this is not a politically fashionable view and in fact one of America's leading ME/CFS doctors has stopped corresponding with me because I criticised doctors who rack up thousands in expenses on a complex regimen of unproven treatments and expensive testing, which is inappropriate outside of a research setting.

I don't view my donations to ME charities as being merely charitable but as being a very important investment in my own future. If we all thought along these lines then, the state of science in the illness would be much more advanced and we would have effective treatments available today.

ME/CFS writer Cort Johnson also had a few harsh words for patients with an essay entitled "Opportunity Knocks."

Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

Strong words yes but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same - a loss of power – and an enfeeblement in an environment which is hostile to our interests.

Ouch. I have to say it made me feel a little defensive. I'm barely able to buy groceries these days with my woefully inadequate amount of food stamps. Is it really fair to ask me to give my widow's mite when the heads of these organizations are making ten times (at least) my well-below-the-poverty-level annual income? (Not that I think they shouldn't be making the salaries they are, just that my ability to give is so limited in comparison.)

But it did bring me back to a question I've asked myself many times, namely, why are we with this disease so remarkably incapable of raising the money that other diseases are? Yes, we're quite debilitated, but so are patients with, say, Alzheimer's Disease. Indeed I daresay care-giving for Alzheimer's patients is far more draining than it is for the vast majority of ME/CFS patients. Yet they have a national fund-raising event each year -- the Memory Walk -- not to mention a variety of local events to raise money. The year before I developed ME/CFS, I spent the summer temping for the local Alzheimer's Association as their "events coordinator," helping out with some of the logistics of putting on both a golf tournament for doctors that included a lecture on emerging research and the local Memory Walk. Why don't we have those sorts of events to raise money for ME/CFS?

My first thought is the name. It's difficult to get people willing to give money to those walking or golfing for a loved one with "Chronic Fatigue Syndrome," a disease that most people think they experience at some level just by living in our fast-past world. Yet one more reason the name must be changed.

I also can't help but wonder if all the effort it takes just for us to get things like disability -- a gauntlet that can last up to four years or more these days -- and other needed social services (not to mention just getting diagnosed!) reduces the amount of time and energy we, as well as family and friends, have to give to fund-raising events, not to mention the amount of money we have free to give to research organizations.

So how do we make a run for it, in Cort's words? I can't say I have an answer on a macro level. On a micro level, I'm considering a recurring monthly donation to the CFIDS Association of $5. It sounds little, but then we all know the deal about how lots of little adds up. I'm also probably going to buy my Christmas cards from ME ResearchUK. It not only helps raise money, but spreads awareness about ME/CFS as well.

Fat and healthy

2008-08-18T15:24:00.000-07:00

I've been meaning to post this for the last week. A study in last Monday's Archives of Internal Medicine shows that you can be healthy and fat. Yep, I know. Shocking!

You can look great in a swimsuit and still be a heart attack waiting to happen. And you can also be overweight and otherwise healthy. A new study suggests that a surprising number of overweight people — about half — have normal blood pressure and cholesterol levels, while an equally startling number of trim people suffer from some of the ills associated with obesity.

It's what a number of us have been noting anecdotally for years and it's nice to see it finally backed up with some research.

For more thoughts on the study, see Big Fat Blog.

The reprieve is over

2008-08-17T21:14:00.000-07:00

My furlough is over. It's back to the soft prison of my bed.

Actually it's been that way for three weeks or so, it just took me until last Saturday to realize it. I was soaking in the bathtub thinking about how I would yet again miss Mass because I was too ill to go. One of the reasons I became Catholic eight years ago was that I believe faith is both an individual and an ecclesial act. Yet faith over the last three years has become a distinctly solitary function where I look to the Desert Fathers and Mothers who lived most of their lives in the wilderness as my models for a spiritual life. At least my wilderness has a comfy bed.

As I look back, I know I overdid it. I should have been far more conservative in increasing the increments of my activity level. But it was summer. The sun was out. The Farmer's Market beckoned. And I longed for some independence. To go to Safeway all on my own. Yeah I would get tired, but even at my most tired I would feel stronger than my very best day during May.

However a colonoscopy in mid July left me sleep deprived between being up all night drinking the prep and going to the bathroom and the early morning time of the procedure. No matter how much I slept after that, I just never got back the energy I had. And that last trip to Safeway a week and a half ago left me in bed all the next day, my limbs searing and compressed with pain. By last Tuesday I had a combination of infections that required two separate antibiotics. The oppressive, pervading weakness is back.

Yet -- and I know this is anathema to think from a ME/CFS treatment perspective -- I can't help but wonder if my month of better health, of shuffling through the Farmer's Market with my niece, of a frenzy of blogging (both here and elsewhere), of cleaning my own house and shopping for myself, of drinking in life with big gulps was worth it. Yes, yes, I know. If I would have sipped, "started low and gone slow" I might have been able to elongate and sustain my health gains. But then again, maybe not. I don't know exactly what the mechanism was that gave me my month. And now I have a month of happy memories to think about during my long days in bed.

Besides, all is not lost. The fog continues to be less dense than before the reprieve. I'm still able to read, which I haven't been able to do for a year or two. Though even the first novel I picked with my enhanced cognitive skills is an example of my impetuousness: A Hundred Years of Solitude. No I couldn't go with a nice novella. I had to pick an epic. The only thing I can think of that would be more difficult would be one of those giant Russian sagas. But I'm trudging along. Even if I'm constantly asking "which Aureliano is this now?"

The most worthless article on Chronic Fatigue Syndrome ever

2008-07-29T14:48:00.000-07:00

I saw this at Co-Cure yesterday. It's a very brief article about Chronic Fatigue Syndrome that defines it as "an illness of unknown cause that can make a person feel excessively tired for prolonged periods."

Sigh. We have so got to change the fucking name of this disease.

And what are the helpful suggestions that the US Department of Health and Human Services apparently offers?

* Keep a log of activities that trigger extreme fatigue, and try to avoid those things.
* Try to get some light exercise. But always talk to your doctor before starting an exercise program.
* Take an over-the-counter pain reliever for the aches, muscle and joint pain, and headaches that can accompany the syndrome.
* Try a non-drowsy antihistamine to help with allergy-like symptoms.
* Talk to your doctor about whether an antidepressant can help you feel and sleep better.
* Join a support group.

I'm not sure which one of them made me laugh more.

"Palestinians shoot back"

2008-07-26T13:05:00.000-07:00

Great story by NBC (lord knows those words do not come from my lips very often) about a clever campaign by B'Tselem, a prominent Israeli human rights organization, to provide Palestinians with video cameras to document human rights abuses. And boy do they!

But what's really interesting, as reporter Martin Fletcher notes towards the end, is that with the camera in hand, Palestinians are able to use this as a remarkable tool of non-violent resistance. While they confront intimidating soldiers and settlers, they remain calm, knowing the camera is filming not just the soldiers and settlers, but them as well.

So I hear yer a racist...

2008-07-25T23:44:00.000-07:00

I knew that, in this election with the first African-American candidate who might actually become president, there was going to be some nasty racism rearing it's ugly head. And so it has. I have always thought that one should be wary of Likudniks with mullets...

Like I said, I was expecting it. But still, it takes the breath away, no?

(Hat tip to Orthodox Anarchist)

Dieting made me fat AND neurotic

2008-07-24T22:47:00.000-07:00

The Indy had a story that got picked up at Alternet about how dieting makes you fat. And if there is anybody who knows just how true that is, it would be me.

My first diet that I can remember would have been when I was five or so. My mom and grandma heard about a fad diet going around at the time that had to do with hard boiled eggs and I remember having to eat a lot of them.

At six years old, my pediatrician got involved. But the diets didn't seem to get any less strange, at least not to my young mind. I remember not being able to eat corn. And the little Valentine candy hearts my Girl Scout leader got each of us. But I did drink a lot of "Sego" diet drinks. I don't recall losing much weight.

We moved when my mom remarried a few years later and the new pediatrician was positively apoplectic that I was so fat. Indeed the nurse checking me in spoke in fearful tones about how upset he was going to be when he saw how much I weighed. And boy was he! He demanded to know what I was eating and how much exercise I was getting. When we told him that I wasn't eating anymore than my skinny siblings and was exercising at least as much, he practically came unglued. "Impossible! She's lying!" he said to my mother. "She has to be secretly eating." I knew that I wasn't, and even if I wanted to, I never had the pocket money to do so. But he was a doctor -- a sort of super adult who dare not be questioned.

But still I tried to lose weight. I followed the diet a friend of my mom's had been on -- a mere 1000 calories a day for a growing ten-year-old. That time I managed to actually gain a half a pound.

The pediatrician sent me to a psychiatrist and a dietician. I don't remember what the psychiatrist said but I only saw him once so I'm assuming he didn't think he'd be much help. The dietician had me counting calories and walking everyday. Unfortunately, this was about the time that I was developing what would later become full blown ME/CFS, and I frequently felt exhausted. Or was in pain due to my right ankle that didn't heal properly after it broke when I was ten. Years later when I came across my chart with the dietician's notes, her disapproval dripped in blue ball-point ink. "Michelle always finds excuses for not exercizing."

Suddenly in eighth grade, when I was 14 years-old, I dropped thirty pounds. I wasn't dieting. Wasn't exercising any more than usual. I tried to tell the school nurse this when she started giving me the paper "kudos" faculty at my junior high gave to students who did something amazing. She would have none of it. She showered me with words of praise and kudos with "behavior modification" written in the "for" line.

That thirty pounds made only a little difference in the hundred pounds I had gained between 10 and 12 years old. And by the end of my freshman year, despite being on a no-sugar diet for five months, I had gained all of those thirty pounds back and then some.

Not that I gave up hope of losing all my excess fat. My mom made a deal with a nutritionist to give her free manicures in exchange for working with me. I met with her a few times. She gave me lots of work sheets and we talked about different foods and calories. At one point during my first visit when she asked me what I'd eaten the day before, I remember being so ashamed to tell her that I'd eaten four Oreos. It seemed like such an excessive amount of sweets. Who eats that much?!

It was only later that it occurred to me that lots of people eat four Oreos at a time. Skinny people eat six and eight Oreos at a time -- and even more. And that's when it began to dawn on me that my relationship with food was so different than it was for most people. Food was all about shame for me.

I wish I could say that stopped my dieting, but, alas, I went on to dabble a bit with anorexia in college (if I just don't eat anything than I would have to lose weight) made all the easier by the fact that the university cafeteria was only open certain hours that were easy to miss. But I also had this nagging built-in common sense that made me stop starving myself as I knew it was just going to make me sick. So long as I ate well and exercised, I had to simply accept the body I had. I can at least say I didn't gain the infamous Freshman Fifteen, at least not until I moved back home to take a work break before going on to my sophomore year at a state university.

When I started at that state university, I moved in with a family from my church. A very typical suburban family with Fudgsicles and ice cream in the freezer and Little Debbie's cookies in the cupboard -- so very unlike my free-school-lunch family. And a funny thing happened a year or so after I moved in with them: I lost thirty-some pounds again. If anything, I was eating more than ever. I was pleasantly baffled.

But it wasn't enough for one of the prominent ladies in my church, who took me under her wing, so long as I went on the same diet as her. I liked the attention from her; she was someone I had admired a great deal. And I figured I'd just do the diet and show her that I don't lose weight from diets. The mother I lived with was diametrically opposed to my dieting. "There's nothing wrong with how you eat. And there's nothing wrong with your body." But I read the "love hunger" book anyway, stunned to read that people actually eat whole cakes at a time. And loaves of bread. I couldn't recognize myself in any of the people featured in the book because, due to Irritable Bowel Syndrome, I was physically incapable of eating like that.

Worse yet, as I began, yet again, the onerous task of counting every little calorie I ate, I found myself sub-consciously thinking "today I only ate 800 calories -- let's see if I can make it 700 tomorrow." As soon as I recognized what I was doing, I realized this was bad. Very bad. I had to stop the "love hunger" diet. But when I explained this to the lady from my church, she accused me of being in denial of my overeating. It was like my pediatrician all over again. I remember wishing I could wear a camera on me 24/7 so they could see every little thing that I ate -- or didn't eat. Once I stopped the diet, my ostensible mentor was no longer interested in mentoring me. Thankfully I had the mother I lived with there to reinforce for me that I did the right thing.

For the next few years I was content with my body, or at least sought to be. But after a summer of great loss (long story -- novel forthcoming), I gained back the thirty pounds with a few more to boot. And then I had surgery on my ankle and knee at the end of 1998, with subsequent complications including a virus that appears to have finally triggered full-blown ME/CFS. And I gained even more weight. And no matter how much I told myself that dieting would be bad, and that I had to accept my body the way it was, I just couldn't tolerate the number on the scales. I sought out a bariatric physician and started the most drastic diet yet: a protein-sparing modified fast. I ate between 600-800 calories a day, mostly protein to keep my body from eating up my organs. And this time I lost weight alright -- 73 pounds.

But you know how this ends. Within five years of ending that diet, I'd gained every single one of those pounds back, plus an extra fifteen. Just like the other 95% of dieters. And the pounds I gained back have settled around my waist (the more dangerous place) where previously I'd been a nice hourglass shape.

Within a year of losing those 73 pounds, I was bedridden with ME/CFS. I can't make a causal link, of course. Yet I can't help but feel it certainly contributed.

I still can't eat chocolate without feeling guilt and shame. Or any food that is "bad." And I still find myself counting calories here and there, knowing I'll have to eat 1100 calories for the rest of my life if I want to make sure I don't gain weight.

So thank you very much, Geoffrey Cannon. I wish somebody would have told me, my mother, and my doctors that dieting makes you fat all those many diets ago.

RESCIND revives

2008-07-22T19:09:00.000-07:00

While I have had ME/CFS for about nine and half years, and a sort of proto-ME/CFS for sixteen years before that, I wasn't diagnosed until 2002. Which means that I missed a lot of the early history of our Damned Disease.

Tom Hennessy, the founder of RESCIND (Repeal Existing Stereotypes for Chronic, Immunological and Neurological Diseases) and the guy who started the May 12th ME Awareness Day, was, however, there from the early days. You can read a lively discussion about his ME activism throughout the 80s and 90s in this recent interview with Cort Johnson.

RESCIND has been rather dormant over the last several years, but according to a post on Co-Cure today, Mr. Hennessy is in the process of reviving the organization and the website. At the moment they've got a "Friend-raiser" going on that includes a song about ME by Susan Wenger, of the band Cinder Bridge (yeah, I hadn't heard of them before now either) that you can download. The song does feel very ME-ish. Very slow and heavy. Indeed as I was listening to the opening verse, I thought, hell, has this woman been spying on me but got the apartment floor wrong? You might also recognize the cover art for the single from fellow ME patient Rachel Groves.

While at the RESCIND website, you can also sign a petition to change the name from the universally despised "Chronic Fatigue Syndrome" to the name more accepted among patients and many researchers, "Myalgic Encephalomeylitis." I'm signature 8293. Hennessey is hoping to have 10,000 signatures to take to Washington by the end of the summer. At the moment he's not quite 1700 short.

"Rewarding greed and stupidity"

2008-07-20T21:57:00.000-07:00

I don't know about you, but I have to admit that every time Jim Lehrer talks about the subprime mortgage financial crisis, my eyes glaze over and I either start blog surfing or nod off.

However, on Friday's Newshour, Paul Solmon used a clip from the British comedy duo, Bird and Fortune, to help describe the crisis. I still got a little groggy even during Paul Solmon. However, when A. and I watched the whole Bird and Fortune skit on YouTube, I stayed awake and laughed my ass off. Those two actually managed to satirize the whole thing.

Bill Moyers also had a look at the crisis on Friday that not only kept me awake but really pissed me off. While losing a house sucks, I assumed that simply meant homeowners will just become renters. What I didn't realize is that renters are losing their homes when the owners of their apartment buildings fail to make the mortgage payments. And, of course, many of those losing their apartments don't have the means to pay for U-Haul trucks, first and last month's rent, etc. and thus, become homeless.

At the moment, the FBI has 1,380 mortgage fraud cases pending. I wonder if each of those represent just one house, or one mortgage seller representing hundreds of homes? Either way, it's a lot of fraud cases.

There, see? You can talk about this without putting everyone to sleep.

I hate Britain Day

2008-07-15T02:28:00.001-07:00

I Hate Britain Day - Watch more at PandaSmash.com

A. and I watched this and laughed our asses off while drinking our Freedom Bag Water.

"Chronic Fatigue Syndrome is a misdiagnosis"

2008-07-10T14:42:00.000-07:00

Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an abnormal immune system and am beset with disabling viruses, and I have the biomarkers to prove it. Other people diagnosed with CFS may have different medical problems - but they are all serious. In bundling them all together into a vague concept of tiredness, the CDC has done us all a great disservice - and in the process, endangered the health of the nation.

Quote from a letter written by Mary Schweitzer to the Frost Illustrated newspaper regarding their story "You ain't crazy, it might be chronic fatigue syndrome."

Buddy, can you spare a paradigm?: Media, paradigm shifts and ME/CFS

2008-07-08T14:58:00.000-07:00

A Tale of Two Conferences

This spring there were two conferences about ME/CFS in the UK. One was hosted by the Royal Society of Medicine and was widely derided by ME/CFS patients because it focused exclusively on this disease being psychiatric in origin. It was closed to both the public and the press.

The second was held in Cambridge a week or so later, was open to patients and the press, and focused on the disease as a biomedical phenomenon.

Which one was later featured in the Economist? Yep, that's right. The Cambridge conference.

It makes sense. I mean, first of all, the Cambridge conference was open to the press. But it makes economic sense for the Economist (as well as all the other papers that covered this conference). People with ME/CFS are not going to buy a magazine with an article telling them their disease is all in their head. A magazine with an article that focuses on what new research is showing about their disease, on the other hand, will be eagerly bought and read.

It made me wonder, will capitalism be what finally saves us patients?

The biggest difficulty patients with ME/CFS face is that despite over twenty years of research showing a multitude of biological abnormalities, the primary scientific organizations that define our disease (CDC, NHS, NIH, etc.) are still stuck in the psychiatric "Yuppie Flu" paradigm.

Philosopher Thomas Kuhn argued that science does not work in a straight line where scientists do a study, collect knowledge, and then do another study, collect knowledge, etc. Rather, science works within a central paradigm (for our disease that's been "it's all in your head") and scientists do research that further enlarges our understanding of that paradigm.

However, there are some scientists who question the central paradigm and do research that looks at other possible paradigms. By doing so, they are being "bad" scientists -- or, at the very least, are considered to be marginal -- because they are not doing research to broaden our understanding of the current central paradigm. But eventually all the research of these "bad" scientists piles up to a point that it seriously questions the current central paradigm and a crisis occurs. Eventually the paradigm of the "bad" scientists takes over in a "paradigm shift" and they become the "good" scientists and the former "good" scientists become the bad ones.

The question I keep pondering is how do we shift the current paradigm from the psychogenic paradigm to the biomedical paradigm when the psychogenic one has all the money and power behind it? Because ME/CFS IS a biomedical disease, I know the shift WILL come. But, well, I'm impatient. Is there anything that can speed the process along?

And that is when the Economist article and my speculation about the role of capitalism in saving us comes in.

Now we do have plenty of "bad" scientists who are questioning the current central paradigm: Jonathan Kerr, Daniel Peterson, Kenny DeMeirlier, Vance Spence, Leonard Jason, Andrew Lloyd, Benjamin Natelson, Nancy Klimas -- to name just a few. But they need money. And they aren't getting it -- at least not in the sums needed -- from government agencies. That's where private foundations become very important as they are the ones providing the capital to fund the research that is making the big breakthroughs. Craig Maupin at the CFS Report has put together a wonderful list of foundations supporting good ME/CFS research (hat tip to Tom Kindlon), including the CFIDS Association, which, as I noted back in May is in the middle of a campaign to raise a million dollars for research.

Another excellent organization would be the IACFS/ME, which announced recently that it too is beginning a capital campaign to raise money for it's outreach programs to physicians, as well as for other programs, particularly a professional journal -- all the more important now that the Journal of Chronic Fatigue Syndrome will soon be defunct due to the sale of its publisher.

Frankly, there are times I actually want to tell my congressman to simply quit funding the CDC and NIH so at least their bad research won't be out there mudding the waters. But then, it's not ALL bad (indeed many of the researchers listed above get funded -- albeit only in tiny bits -- by organizations like the NIH) and I wouldn't want to do anything to cut the good stuff. In the meantime, letting your congressman/woman know that you want to see the federal Chronic Fatigue Syndrome Advisory Committee charter renewed so that the Department of Health and Human Services is kept up to date on research and the needs of patients would be a good thing.

As people like Jonathan Kerr or Nancy Klimas do more and more science that challenges the central paradigm, more magazines, newspapers, and even television news report the breakthroughs they are making. And my experience has been that your average doctor reads and watches these sources of information as much as (and perhaps even more than) medical journals (which a lot of this research is being published in as well -- though generally not in the more prestigious ones).

So, could this be the way forward to our paradigm shift -- the media's hunger for profits that come from selling magazines with articles about ME/CFS research breakthroughs? I dunno. There are also structural and bureaucratic barriers that stand in our way, as Cort Johnson's recent interview with Ken Friedman points out. Yet I can't help but wonder if it might be a step forward and a sign of hope in an otherwise dismally slow process -- though a step that is not without its problems.

The Double-edged sword

While media attention of various research breakthroughs helps to demonstrate that ME/CFS is indeed a biomedical illness, it can also raise false hopes and even scare the bejeezus out of people unnecessarily.

Quite awhile ago on one of the ME/CFS Yahoo groups I used to read frequently, I remember how someone posted links to news stories about how the drug Coumadin was going to be black-boxed by the FDA in an effort to show people how dangerous it is. "Coumadin can cause fatal bleeding!" shouted the headline posted to the group. Now it's quite true that Coumadin can cause fatal bleeding. That's why when you take this medication, you have to go in at least once a month or more to be tested to make sure you're not in too much danger of it causing that fatal bleeding. Indeed, when you first start the medication your doctor or nurse will explain in great detail the dangers associated with this drug and what you should avoid to make sure you don't start bleeding uncontrollably. In other words, we already know the medication causes fatal bleeding. But I tell you the truth, several people on the group became afraid to take the medication after hearing this from a news report even though this should not have come as any sort of surprise to them.

It works the other way too. Two years ago there were reports about a physician down at Stanford who started using a drug for herpes on his ME/CFS patients. "A herpes drug may make energy soar for Chronic Fatigue Syndrome patients," read one headline. It sounded like we were at the entrance of the Promised Land. Nine out of twelve patients reported "great improvement." And a former ice skater who had been bedridden from ME/CFS was practically cured. However, the results after a much larger study were not nearly so promising. According to this summary by Dr. David Bell, while the recent study showed some improvement in cognitive function, levels of fatigue did not improve substantially.

I've seen this happen time and time again in the ME/CFS community. One study comes out showing one thing, but when another study tries to recreate the results, we end up rather disappointed. Now there are a number of reasons for this, the biggest being that ME/CFS is defined so broadly it makes it difficult to know if we're studying the same disease process from one study to the next. But that's not the only reason. As Maggie Mahar pointed out recently at her blog, Health Beat, the media hypes the good news because, well, they know it will sell more papers, magazines, and air time.

What may be a big help in getting the word out about ME/CFS, thus bringing about the paradigm shift we so long for, may also get our hopes up far higher than they ever should.

Reprieve

2008-07-03T17:39:00.000-07:00

Hello, my neglected readers.

For most of the last several months my posting has been erratic, to say the least. My mushy brain and languid limbs made thinking and typing sheer drudgery.

However for the last three weeks or so, my lack of blogging has actually been because I've been busy. Like out of bed doing stuff around the house busy. Or walking to Safeway for the first time in a year busy. Or even going to the Farmer's Market four blocks away for the first time in three years busy. Sure, every bump from one of the legion of bustling shoppers made me feel like I was going to fall and break into a zillion pieces. But thanks to my trusty cane, I remained upright and came home with fresh, deep red, melt-in-your-mouth wild strawberries.

I have no idea how long this furlough from my prison of disease will last. And, indeed, I'm still spending 13-15 hours a day sleeping or resting. But during the 9-11 hours I'm up, I actually feel halfway healthy.

Sure, I don't have a lot of stamina. And having A. here during this reprieve is probably a good thing because he's been good at reminding me not to over do it too much.

So what's changed? Well, a few things. I've increased my dose of acetyl-l-carnitine, as well as added the supplement D-ribose. This, along with starting long-acting morphine back in January has helped me with pain, which means I'm sleeping more.

But the morphine is a bit of a double-edged sword as apparently it can cause an endocrine deficiency. Since March or so, I'd been feeling weaker and weaker (bathing was becoming more and more difficult), not to mention was having other sorts of hormonal problems like hot flashes (I'm only 35!) and scant periods. When I came across the article linked above, it sounded like it may well be the problem. While I haven't had a chance yet to talk with my doctor as he's out of town, the article recommended the supplement DHEA, so I went ahead and picked some up at the grocery store. And that, dear friends, seems to be the magic pill that got me to the Farmer's Market.

Like I said, I don't know how long this will last. It's not uncommon for me to find a supplement, Chinese herbal formula, pharmaceutical drug, or homeopathic remedy that makes me feel better but only for a short time before gradually becoming useless. And I know trying to make up for lost time activity-wise will bring this bit of respite to a close far more rapidly than it might otherwise.

Yet this may be the first time I've hit a good spell where I didn't immediately begin to plan for life returning to pre-illness. Didn't begin demanding my old life back. Didn't feel that unbearable ache to return to...everything.

No. Yesterday as I sat in the Park Blocks for the first time in so very long and looked up to what used to be those oh-so familiar towering Elm trees, I was just happy to have that moment. Without sneaking even one sideways glance to the future -- whether it be the one I still wish for or the one that will actually be.

The illness is not something fluffy

2008-05-31T21:10:00.000-07:00

I'm still doing rather poorly, thus the dearth of blogging lately. But I did want to post a link to a question and answer session with Leonard Jason that was in the New York Times yesterday. Apparently the Times does still do some interesting reporting once in a while.

Jason is a psychiatrist, but had ME/CFS back in the nineties. When he got better, instead of running as far away from this disease as possible, he realized that CFS patients really needed somebody like him to challenge the bullshit coming out of the CDC. As you can see from this list of articles (click "articles" on the left side menu), he's done quite a lot of research showing how stigmatized this disease is, how it differs from depression, and how anybody can get it -- not just white, middle class women. He continues to be a strong critic of current CDC study methods, and I'm thrilled the Paper of Record have brought attention to him and his work.

Yet another ME/CFS Awareness Day post

2008-05-13T15:32:00.000-07:00

Okay, it's about time to pop my head in here after a month and a half of silence, especially as I missed ME/CFS Awareness Day yesterday. Unfortunately I was paying for Mother's Day and a trip to a nursery to buy some shrubbery (insert Monty Python reference here) on Saturday that left me too sick to post anything for our important day. But, you know, it's also supposed to be ME/CFS Awareness Week right?

It's been a rough month and a half ME/CFS-wise. I thought it was just a medication problem, but after discontinuing what I thought was the detrimental medication, I continued to feel very weak, light-headed and nauseous. Throw in another round of horrible -- but still inexplicable -- pelvic pain, as well as dealing with the chemical dependence issues of someone close to me (not A., who arrived two weeks ago today -- yay!) and, well, I've just been in a very introverted mood that didn't really lend itself to blogging. But today, I'm finally starting to feel a bit more like my normal baseline and slightly gregarious self.

I talked about what I've lost because of illness on ME/CFS Awareness Day two years ago. Last year I talked about what I've gained (yep, it's true!). These days I tend to go back and forth between the two, grieving some days while on others appreciating "the horror and wonder" illness brings.

The last twenty-four hours are a good example. Last night PBS had the first part of its series on FDR which looked at length at his struggle with polio. By the end of the program he had pushed himself through his paralysis into the White House. Why can't I push myself through this, I thought for the five millionth time (Cusp has a nice post on the same question). As I took my bath afterwards, my thoughts went back and forth between that same old grief and my valiant hope that this is just my time in the wilderness before conquering illness and going on to the brilliant literary and intellectual life that I was supposed to have. I mean, that's what our society tells us sickies we're supposed to do, right? Triumph over impossible odds so healthy "normal" people can be inspired by us instead of depressed and reminded that they too are one germ or fall away from being sick and obligated themselves to inspire others.

But this morning (er...this afternoon) as I was waking up and this dichotomy of loss and pressure resurfaced, I surprised myself with the thought that the future can take care of itself. Will I get better? Will I overcome it all and not just be able to read books again, but actually write them too? Will Jonathan Kerr's new research find a cure -- or at least an accepted blood test? Will the new Whittemore-Peterson Institute? Or maybe Suzanne Vernon's million dollar campaign will lead us through this newest CDC captivity to the promise land?

I dunno. I hope so. And I write posts on this day (or around this day) with that hope, as well as participate in the CFIDS Association Virtual Lobby Day (which you can too by going here). And in the meantime, I rest. Without guilt or impatience.

Well, okay, maybe a little impatience. But we need a little impatience to make sure we get a cure, right?

A double sort of sting

2008-03-29T00:46:00.000-07:00

One of the things I've been thinking about off and on lately is how illness has sort of left me not fully an adult. I can't have children. I don't go to work and earn an income (a point that the IRS has been driving home to me over and over again with this stimulus rebate that EVERYBODY is getting except us losers on SSI). Somebody has to clean my house for me. And make my dinner for me. And I'm always having to ask my mom for a ride. Lord knows I thought those days were over in 1993 when I finally obtained my Oregon Driver's License.

What sucks is that I never got to be fully a child. As I wrote about in this post, I spent a lot of time being my mother's partner (indeed in high school I used to joke that I was her wife). I started taking care of my infant sister when I was ten and continued to take care of her and my disabled brother until I left to go off to college. In many ways, I looked forward to being an adult because at least I'd get the benefits that came with all the responsibility that I had.

I suppose I should just be grateful I have my own place. And at the end of the day, I don't have to worry about getting laid-off at all in this uncertain economy. Indeed, if I wanted to, I could do nothing but play video games all day and still get a check each month.

But I think I'd rather have the responsibility -- and the compensation that comes with it.

It's just all wrong, ya know? I feel so cheated at both ends. I really miss that I'm not ever going to have children of my own. And I really miss that I didn't get to be a kid. Hell, I didn't even get to be a wild and crazy twenty-something as a good chunk of that was spent being sick.

Sometimes loss just has this double-sort of sting to it.

"Something you do with your isolation"

2008-03-18T22:08:00.000-07:00

One of the reasons I was drawn into poetry was the whole romantic idea of isolation. Poetry seemed -- and still seems -- to be something you do with your isolation and in isolation and solitude.

-- Billy Collins

While I don't know that there's anything romantic about it, maybe the isolation of ME/CFS is really some sort of super-rigorous MFA program in poetry. One of these days I just might write some half-decent poetry. You know, if only I could get this damn brain fog to lift...

This second of experience

2008-03-10T16:25:00.000-07:00

I haven't forgotten about you all, dear friends. In the back of my mind as I've been focusing on other online pursuits the last few weeks has been all the things I've wanted to blog about here. But as my energy is so very finite -- particularly when I go through weeks like last week when all I did was sleep and watch seasons three and four of the Gilmore Girls on DVD -- there just haven't been enough hours in the day to get here and write about ME/CFS or Lent or whatever in addition to self care and living vicariously through Lorelai and Rory.

Though, to be honest, I've been in a rather escapist mood lately. I don't think that's always bad. Contemplating myself as something other than a sick, dependent shut-in is important for my emotional well-being. But every now and then I'm reminded that there is value in...this. In this unpalatable, helpless, lonely, grief-stricken, painful, groggy present. As much as I may try to divert my attention elsewhere, something inevitably brings me back, albeit sometimes kicking and screaming.

My kicking and screaming started a couple of weeks ago when I was reading a conversation between Pema Chodron and bell hooks (I know! Conversationalists don't come much better than that!). Chodron is pretty big on the whole "being in the present" thing, something that I tend to find far more interesting in theory than in practice.

The way I understand it is that we rob ourselves of being in the present by always thinking that the payoff will happen in the future.The only place ever to work is right now. We work with the present situation rather than a hypothetical possibility of what could be...The source of all wakefulness, the source of all kindness and compassion, the source of all wisdom, is in each second of time. Anything that has us looking ahead is missing the point.

In 49 days A. will be here again. Someday we will have the money to live together. In a house or apartment with a separate bedroom. And I'll be able to shop at the Pottery Barn. And cook complicated meals and take long walks on the beach or even to the Farmers Market. And ride a bike...Hell, at this point I'd be happy if I could just develop a daily routine so I could do some more polished, non-blog writing instead of drifting along through a constantly-changing schedule of sleep and energy...

It's funny how now just feels so utterly intolerable.

I give up both the hope that something is going to change and the fear that it isn't.

I think this is really what I was trying to say with that post awhile back about the fine line between hope and despair. But, to be really honest here, it's much easier in theory than in practice. I find myself clutching hope and fear 'til my knuckles turn white. Letting go feels more painful than the loss of circulation in my fingers...

bell hooks: Is it simply a choice of will to have an open heart?

Pema Chödrön: I think it begins with the aspiration to connect with open heart, the knowledge that cultivating openness is how you want to spend the remaining moments of your life.

I found this very helpful...very kind. I focus way too much on what I'm doing wrong. What I'm not doing that I should be. But buried beneath my grasping and fleeing, there is clearly intent to be in the present. Why else would I have gone over to the Shambhala Sun website? Why else would I have clicked on the link to Chodron's articles, knowing full well she was going to encourage me to be in the present, to let go of my tenacious grip on a future I hope will someday come? Yes, the aspiration is there...

bell hooks: The idea in your work I find so moving is the unconditional embrace of one's being, which allows you to embrace others at the same time. But if I unconditionally accept myself, then what's the motivation to practice further?

Pema Chödrön: That willingness to stick with yourself is just another way of saying that you stay awake. It seems what blocks seeing things truly is our tendency to self-denigrate, to disassociate continually, to edit continually. When you don't close down and shut off, then insight begins to come. This insight is the wisdom that completely cuts through the conventional way of seeing.

You are talking to the queen of dissociation here (or reading rather). Indeed, I think sometimes what makes fibromyalgia such a serious condition is that after awhile we stop paying attention to what our body is saying to us because it's like the boy who cried wolf. And when something serious does happen, like a broken foot or a torn tendon, we shrug it off because we are so focused on trying not to feel anything anymore. But there's more to being present with myself than just catching that torn tendon. There is wisdom. "Happy is the man who finds wisdom, the man who gains understanding" (Proverbs 3: 13). Indeed, I think there is a fair case to be made that this is the discipline of the Lord that Solomon is referring to, this ability to be in the present where wisdom resides. Not that Chodron herself is all that into theism...

bell hooks: One of the things I've been thinking about a great deal is poverty. I feel very strongly that in our society people have been made to feel that you can't lead a meaningful life if you are poor. So much of the agitation in the lives of the poor in this society has to do with this disdain.

Pema Chödrön: The question is how to help people, no matter how desperate their lives are, to realize that they are worthy to live on this earth, that they do not have to feel inferior or be ashamed of themselves. And the question is how to help people to get smarter about what causes suffering to increase and what causes it to decrease.

Being ill and disabled comes with a lot of shame at times. And certainly living in the society in which I do, I'm made to feel like a burden. My disability income is based on the fact that I haven't "contributed enough" and therefore do not deserve true Social Security but only Supplemental Security Income. And in just about every election here in Oregon, there's some ballot initiative to decide whether I'm worthy enough for folks to pay the taxes for the kind of health care I get or housekeeping assistance. After awhile it feels like such a radical act to say I'm worthy to live on this earth and I refuse to feel inferior or ashamed of myself for something I cannot change. I am worthy whether I work and "contribute" to society or not. I will value myself simply because I'm a child of God and made in His image and not because of anything I do.

In addition, as I practice radical compassion for myself, radical compassion for the taxpayers who are paying for my income and health care comes as well. I know there are parents working far too many hours and not able to spend time with their kids. Who desperately need rest. I recognize that the anger they may direct at people like me comes from a place of legitimate frustration that they do not get enough rest themselves. Some would call it class warfare. I prefer to dispense with violent metaphors and focus on compassion and empowerment for all.

For me the spiritual path has always been learning how to die. That involves not just death at the end of this particular life, but all the falling apart that happens continually. The fear of death—which is also the fear of groundlessness, of insecurity, of not having it all together—seems to be the most fundamental thing that we have to work with. Because these endings happen all the time! Things are always ending and arising and ending. We have so much fear of not being in control, of not being able to hold on to things. Yet the true nature of things is that you're never in control. You're never in control.

I still live very close to the university I had to drop out of because of illness. Frequently I end up riding through campus on my way home from grocery shopping or visiting my mom's. And every time I do, there is a terrible ache, a profound incompleteness. I was always going to finish my time at university. I was not going to be a student forever, despite the jokes friends and family made. It just didn't end the way I wanted it to.

Even with death I know that my biggest fear is that I will not have accomplished the great things I'm supposed to. That I will not have control over what I think defines me. And that for me is still the biggest thing I wrestle with -- control. Until I became ill, I had no idea what a control freak I am. But now that I have precious little of it, it's like crack. I'm constantly on the look out for my next control fix.

Yet even as I release my death grip on trying to control everything, there are those who try to tell me that I'm giving up too quickly. That I'm not getting better because I don't really, truly want to get well. That if I only believe, or take this supplement, or push myself I could be well again. This shows remarkable hubris. There is so much about the body we don't know. That we don't control. My acceptance of what is is not fatalism or laziness but humility. I'm not in control. I'm not God. I'm learning to embrace my frailty, my sickness, my mortality, along with my strength, my dynamism, my vitality.

That seems to be the essence of the lojong teachings—to stay in the space of uncertainty without trying to reconstruct a reference point.

We can stop looking for some idealized moment when everything is simple and secure. This second of experience, which could be painful or pleasurable, is our working basis. What makes all the difference is how we relate to it.

Or if we relate to it.

I'm kicking and screaming a bit less today. Am a little more willing "to stay in the space of uncertainty without trying to reconstruct a reference point." Even if I am still a bit jittery without that reference point.

Fresh hell from Atlanta

2008-02-18T00:09:00.000-08:00

Recently James Jones, a virologist at the CDC researching ME/CFIDS, published a paper about how people with ME/CFS have developed maladaptive sickness behavior and an "extended altered self state" that appropriate cognitive behavioral therapy should cure. Basically, we are hypersensitive, which makes us think we're working harder than we really are.

Yes, when I read it, I wanted to bang my head against the wall. Except this guy works for the main health policy organization in the US, as well as an influential organization throughout the world. So, aside from mind-numbing frustration, I also felt pretty damn pissed off and, frankly, a bit scared. What fresh hell can we expect from these guys now?

In a recent post at the Co-Cure board, fellow patient Tom Kindlon deconstructs a recent talk Dr. Jones gave online, as well as some of the works of fellow "it's-all-in-your-head" colleague Peter White. And as I read through Jones's and White's comments, a few thoughts came to mind.

First, while I appreciate diseases such as MS or cancer have verifiable laboratory evidence of physical pathology, what influence have child abuse or "abnormal stress responses" had on patients with these diseases? Is the stress response similar to us with ME/CFS (yes, I know they have a "reason" to have a stress response, but even in the absence of laboratory evidence of pathology in ME/CFS, it doesn't prove we aren't sick)? How has disease altered their self state, their interoception (or awareness of their internal physical state)? Good science requires that they answer these questions before stating that this is solely an ME/CFS/FMS thing.

Second, while reading a quote from Peter White where he states that "inactivity increases perception of effort with exercise," I couldn't help but compare it with a quote of Dr. Melvin Ramsey, one of the first physicians and advocates for patients with ME, that Kindlon tacked on to the bottom of a recent article from the CFIDS Association site talking about a new study showing a marked decrease in oxygen intake/output in ME patients during a second day of stress testing.

"After moderate exercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous exercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case."

The thing is, my experience as a patient is far more in keeping with Ramsey than with White. I've just spent the last week doing nothing but sleeping. Seriously. I've slept 12-14 hours a day for the last six days straight and spent my waking hours laying in bed. Yet today, activity – or exercise, if you will – felt easier than it did last Monday, at the beginning of a period of profound inactivity.

I think it's important to note that there is not one doctor who actually has ME/CFS who supports Jones's or White's opinions (and that's what they are). Rather, physicians/researchers such as Vance Spence or Leonard Jason (a psychologist who recovered from ME/CFS) have indeed gone on to find strong laboratory evidence to the contrary of Jones or White (though Jones's paper doesn't really contain much hard evidence anyway but rather the speculation of a virologist in the realm of philosophy-psychology).

Yet Vance Spence and Leonard Jason, researchers doing real science are not getting your tax dollars. Jones, the virologist-cum-philosopher, is. (Okay, to be fair, Vance Spence is British. But I doubt he's getting much UK tax money either.)

Just before posting this I was writing an email reply to my old grad school advisor who came across me on Facebook and sent me a message asking what I was up to. Those emails (or phone calls) are always tough because my answer, of course, is sleeping and going to doctor's appointments. Keeping track of my 20+ medications a day. Doing my physical therapy exercises so that I don't turn into complete Jello. And, occasionally, blogging. It's one of those moments when I end up reflecting on the life I used to have and the life I should be having now.

So, Drs. James Jones and Peter White, I have lost a very promising academic career, a vibrant social life, the ability to go to church or play with my nieces and nephews, and instead live in constant pain and profound weakness because...I feel too much?

It's enough to make me want to cry. For the love of God, when is this bullshit going to end? We are suffering far, far too much while these jackasses intellectually masturbate.

Banal tea bags and the costs of energy

2008-02-12T20:27:00.000-08:00

This was the little word of wisdom on my Yogi green tea bag this morning:

The only tool you need is kindness.

Why does anybody think this is profound or even remotely useful? I dunno. I suppose in a relationship it might be. But ya sure ain't gonna fix a toaster with it.

Maybe I'm just not thinking deeply enough. Maybe I'm supposed to sit in the lotus position and think about it for hours and come to some amazing epiphany.

At any rate, cold and stomach pain aside, I've actually been feeling better the last few weeks. I'm actually caught up on my email inbox for the first time since last summer. And my kitchen is clean, despite not having had a caregiver for a week and a half.

Sure I keep overdoing it. The day before last my mom took me grocery shopping and upon returning home, not only did I put the groceries away, but I also cleaned the kitchen (including the nasty area under sink next the garbage bin after taking the garbage out), did the laundry, organized underneath the bathroom sink, made chicken soup, folded and put away the laundry, made the bed, and took a bath. Any one of those activities is generally a major accomplishment.

"Why did you do all that?" A. asked me yesterday, slightly annoyed, when I told him that I felt like shit from my overactive day.

It was a fair question and I'm not sure why. I mean, after all these years with this illness you'd think I'd know better. And generally I do.

Maybe I feel good but in exchange it affects my judgment?

It wouldn't be the only bad deal I'm getting out of this burst of energy. The immune supplement I'm taking that's been making me feel better appears to be what's eating up my stomach. I've switched to taking it with food (as well as increased my Prilosec dose) but, while that's not quite as hard on my stomach, it's still making it hurt.

Sigh.

Let's see if kindness can fix THAT!

If it can't, well maybe one of these days the forthcoming Whittemore Peterson Institute for Neuro-Immune Diseases will. It'll be the first academic-associated clinic for people with ME/CFS and Fibromyalgia. And being in Reno means it's only a nice roadtrip away.

Kindness probably went into getting the money to build it. But I bet they'll be using a few hammers and saws.

Fellowship amidst perpetual separation

2008-02-10T00:28:00.000-08:00

I have to admit I've been in a bit of a funk since A. left last Tuesday morning. Sure, a lot of that has also been that I've had a nasty chest cold and something eating away at my stomach -- though, in Chinese medicine, the lungs are the organ associated with grief and the large intestine is paired with the lungs so it may be a case of the my grief and my cold feeding off each other.

Nonetheless, I don't think I'd adequately mentally prepared for him to leave this time. Normally I start thinking about it three weeks or so ahead of him leaving. This time it just sort of happened. One day he was here and the next he was gone -- for three whole months.

But tonight...er, this morning, I was reminded of how it could always be worse. First I happened to stop over at Raising Yousef, where Laila is showing off pictures of her adorable baby girl being kissed by her father, who lives in the US while Laila lives in Gaza because he, as a Palestinian, is not allowed to return to his home. Then I visited Jews Sans Frontiers where Levi had a story about a Palestinian who had been living falsely as a Jewish Israeli in order to live with his Israeli wife and four children because Palestinians from the Territories are not allowed to live in Israel proper. Not to mention at any given time there are over 10,000 Palestinians being held in Israeli prisons, many of whom have not been charged and are being held indefinitely.

Of course, it's not just Palestinians who are dealing with perpetual separation from their loved ones. Many U.S. soldiers have been serving in Iraq and Afghanistan for up to five years with very little time home. And there are always political prisoners, or even criminals in prison who are away from their families for years at a time.

A. and I talk on the phone every day. We spend our allocated 90 days (or just shy of that) together every three months or so. And though it may still be a few years -- God forbid! -- until we're able to be together permanently, we know that at some point the constant 90-day mandated separations will end. For a lot of people, there are no daily phone calls. No three month visits. No end in sight.

It doesn't mean my grieving is any less valid. It sucks watching my lover leave, knowing we won't be cuddling again for several months. But I guess knowing that I'm not alone makes my grief just a little easier to bear, as well as allows me to appreciate the pain a lot of people all over this country and planet are feeling at this same moment.

Jon Stewart: spot on once again

2008-02-09T17:48:00.000-08:00

Yup, totally on the money. I particularly liked the line that Romney was a "salt-n-pepper, man-shaped polymer casing for a spiritual vacuum." As did I like Stewart's response to Romney saying that if he continued running he would be helping Clinton and Obama, who are helping the terrorists: "FUCK YOU!" Oh and I can't forget the clip after this where the analyst explains that Romney was missing the "douche bag" vote, something essential for all douche bags running for president.

Lastly, I don't think I'll ever look at being "friended" on Facebook in quite the same way again...

Health and blog update

2008-02-08T23:41:00.000-08:00

I had these plans last week to write a post saying how much better I've been feeling on this new immune supplement I've been taking.

But then my stomach pain started getting worse. And now I've got a nasty chest cold.

I hadn't even had a chance to jinx it yet.

At any rate, you may have noticed that I've been doing a bit of blogkeeping lately (but only a bit). I added the "Recent Comments" widget a week or so ago, making it easier to have conversations in the comments sections, rather than scrolling down and opening old posts to follow the thread.

I've now also added a list of what I've been reading online via Diigo (which, lemme say, is one of the coolest browser add-ons around, with the ability to highlight text online and sticky-note it) . Unfortunately I'm not able to blog about a lot of the stuff I've been reading online, but this way I can still share little snippets with you, dear reader. I've also signed up for Diigo to post highlights of my reading each day. Don't know how much I'll like that and may dump it rather quickly. But then again, it might just make blogging a lot easier.

Lastly, I've added a banner for the Campaign for a Fair Name, which is a grassroots effort to change Chronic Fatigue Syndrome to Myaglic Encephalomeylitis -- what the disease used to be called before some idiots at the CDC and NIH changed it to a name that insurance companies found more palatable. While it's taken our community a lot longer than the AIDS community to rename ourselves, it don't mean this subaltern can't speak.

At any rate, for those of you keeping Lent, I hope this time of fasting, reflection and prayer is meaningful and blessed.

O the times, they are a changin'

2008-02-01T04:54:00.000-08:00

Just a quick post before I head off to bed after a long night in the ER. Every since Wednesday night I'd been having stomach and chest pain that was similar, though not as intense, as last year when I had the PE and I needed to have it checked out. It turned out to be heartburn -- they think -- but as I'm on a high dose of acid reduction medication (or two meds actually), the doctor suggested that my GP have me get an endoscopy. Swell. Another test.

At any rate, my nurse, a nice late twenty-something guy, was having a hard time finding a vein (very, very common for me) and finally my doctor, a sweet Iranian woman, decided to take a chance and go for a vein in my arm. As my doctor was doing the blood draw -- a task nurses normally do -- I lay there thinking about how times have changed. Here my doctor was an Iranian woman and my nurse a white male. And the doctor was helping the nurse out rather than the nurse keeping the doctor in line.

This campaign brought to you by the word "change"

2008-01-23T20:04:00.000-08:00

You knew that David Bowie song was going to show up at some point.

Waiting for The Door

2008-01-19T19:31:00.000-08:00

Yesterday I had to get an X-Ray of my ankle (you know, that one I sprained in freekin' September). I was supposed to get it X-rayed last Friday after I saw my doctor, but it was 10:30 in the morning -- which for me is like what 3:30am is for people with a normal circadian rhythm -- and I forgot once I left the room (to be fair, his assistant didn't say anything about an X-ray either when she said I could go). Since I won't see Dr. H until February 1st, and the X-ray order didn't expire until February 10th, I figured I'd just wait until I got my blood checked the following Friday.

Getting an X-ray at my county health department clinic involves going to a little room off the waiting area and telling them your doctor ordered an X-ray -- if the door to the little room is open, that is. If not, you sit in the waiting area until the door opens. Yesterday when I walked over to the X-ray room, the door was closed. And in case you're not familiar with the whole "wait for the door to open" thing, there is a big sign on the door saying "Do Not Open This Door."

The funny thing is, even with that rather straight forward instruction, you always wonder for a minute if you should open the door. I mean, how is the X-ray technician supposed to know you're there? What if someone accidentally closed the door and the guy is sitting in there playing around with his Facebook page until somebody comes and tells him they need an X-ray? (Speaking of Facebook, I finally joined the twenty-first century and created my own Facebook page a few days ago.)

So I stood there looking for a seat in the waiting area (there were open seats, just not two empty seats together and we all know the rule is to sit with an empty chair between you and a stranger), and wondering if I should at the very least maybe knock on the door.

In the end, I sat down next to a younger woman who seemed least likely to care that I was breaking the sit-one-chair-apart rule (as well as was someone I least minded sitting next to me) and decided against even knocking on the door as it sounded like a couple of other people were waiting for the X-ray door to open as well. Besides, I'm a pussy and dislike even the appearance of questioning the rules.

I opened a back issue of Harpers my sister lent me, propped it up on my cane and started reading. First I was interrupted by an older lady with metallic magenta stars encircling her bleach blonde hair asking what had happened to my ankle. "I sprained it," I replied. "Sprains hurt, don't they?" she said. I nodded. Yes, strange lady interrupting my reading to point out the obvious, they do. Thankfully she got distracted or could read my body language and wandered off.

The woman next to me and her kids got called back to see the doctor and were replaced with a short woman with an orange bandana and a slight New York accent who was unfamiliar with the X-ray room Door. "So do we just wait here for the door to open?" I nodded. The guy across from her with a giant backpack also nodded and went on to say he'd been waiting for an hour. "Oh my god!" Orange Bandana lady cried, while I did the same in my head. But hey, that should mean the X-ray guy should be almost done with whoever he's got back there, right?

So while I tried to read a year-and-a-half-old Harpers, this lady and the people across from her made small talk. "Is it always like this?" Orange Bandana lady asked. We all explained that it was a Friday before a holiday. "What holiday?" Martin Luther King Jr. Day.

"It's so stupid," said a white guy across from Orange Bandana Lady. I expected to hear him continue with some thinly-veiled racism about Martin Luther King Jr. "Black people don't get the day off from work." The lady next to him waiting for a narcotic prescription (they don't just have the scripts waiting for you at the front desk anymore, you have to sit and wait until the doctor has time to write it for you -- our clinic's most convenient innovation EVER) then pointed out that veterans don't get Veterans day off either. Both valid points I thought.

Of course, every time a door opened, we all looked to see if it was The Door. "Do you think anybody is even in there?" asked Orange Bandana Lady. "Yeah, cause my girlfriend is in there" said the Guy with the Giant Backpack who had been waiting over an hour. Though I could tell Orange Bandana Lady had her doubts. And so, increasingly, did I. Could the girlfriend and the X-ray technician have left when he was in the bathroom? It was starting to feel a bit like a Samuel Beckett play. When the Guy with the Giant Backpack said he'd been there since 12:30 (it was almost 3:15pm), Orange Bandana lady jumped up. "That's it, I'm outta here!"

I too decided that maybe I'd wait until next Friday when I have to get my blood checked again and started hunting through my bag for my cell phone to call the cab. Just as I opened my cell phone, The Door opened and sure enough, the girlfriend of the Guy with the Giant Backpack emerged. Except right at that moment another guy who needed an X-ray arrived and, seeing the door opening, walked right in. "No No! I was here first!" the Guy with the Giant Backpack yelled as he leaped into the X-ray room. "Hey I was just told to go in when The Door opened," the New Guy said.

Of course, I can't leap to save my life so by the time I made it to the X-ray room and told the guy I too needed an X-ray, the technician told me to have a seat as there were a few people ahead of me. "But I've been waiting here longer," I said softly. The technician just handed me a card with the number 5 on it and told me to take a seat.

Oh the injustice of it all! I went from feeling like Vladamir and Estragon to Frank Grimes. I couldn't let go of this grave crime done to me. Of my hatred for the New Guy who had not done his time. Of my hatred for the X-ray tech who couldn't be bothered to find out who was there first or even develop an appropriate procedure to serve people in the order they arrived. Besides, I was clearly more ill than the New Guy and needed to get my X-ray over and done with first. I was so weak by that point I couldn't even read my magazine because I couldn't hold the pages despite my cane bearing most of the weight of the magazine. Indeed, it was because I was so weak that I didn't plead my case with the X-ray technician (and, as I already pointed out, I'm a pussy). I wandered back to my seat and tried not to cry. But, alas, dear reader, I confess that a few tears were indeed shed.

If only the Orange Bandana Lady had stayed. She would have set the record straight. Pushy, bitchy New Yorkers are good for that. And when Guy with the Giant Backpack left after his X-ray, the last witness who could vouch for me was gone. New Guy was definitely going first.

Thankfully there was no burnt film and full body X-rays to do, as was the case for girlfriend of Guy with the Giant Backpack. I only had to wait another twenty minutes before it was my turn.

After my ankle had been X-rayed, it was time to call Broadway Cab and wait for my ride home. At almost 4pm on a Friday. Last time I needed a cab at that time I was waiting 2 1/2 hours.

When I told the dispatcher I was calling for my medical transportation pick-up, she said she wasn't familiar with the order and asked where I was being picked up. I gave the address and my name and she told me it'd be 15 to 20 minutes. Not as bad as it could be but longer than I was hoping.

Yet as I waited, I worried about the "I'm not familiar with that order" part. After a few minutes I decided to call back and make sure I was getting a medical transportation cab. But almost as soon as the dispatcher answered, the short bald black lady security guard for our clinic came up and told me my cab had arrived. As I wasn't expecting him so soon, it took me a second to hang up with the cab dispatcher, grab my bag and cane and walk out to the cab just before he was about to drive off.

"You came earlier than I expected," I explained to the driver. "But you do not know how grateful I am that you did!"

Is this newspaper real?

2008-01-19T04:21:00.001-08:00

Drug Approved. Is Disease Real? - New York Times

What a bunch of wankers. What a piece of lazy shit passing as journalism. Yet one more reason to add to my ever growing list of reasons NOT to read the New York Times (indeed I think I read it maybe 2-3 times a year now as opposed to everyday five years ago).

What I'm so so so sick of -- whether it's about fibromyalgia or ME/CFS or even the Israel/Palestine conflict or whatever -- is this obsession with "balance" that causes journalists to quote marginalized idiots with an opposing view that nobody takes seriously anymore simply because they have to show that they are sharing "both sides" regardless of whether there really even are opposing sides.

And this piece wasn't even balanced as he talked to one specialist on fibromyalgia -- Daniel Claw -- and three who are substantially outside mainstream medicine regarding fibromyalgia.

I suspect the NYT and Alex Berenson are going to get an earful as the Co-Cure board has been in a tizzy about this story all week and the American Pain Foundation sent out a mass email urging people to send letters to the editor. And it's not like the American Pain Foundation, which works with war vets, is just a bunch of hysterical middle age women.

And I won't even get into the seriously sexist undercurrent going on in this story, with its focus on middle aged women -- cause you know, it's not like guys get fibro...

My newest web addiction

2008-01-17T01:51:00.001-08:00

I promise that one of these days I'm going to return to my normal gregarious self. Someday. When I don't haven anymore physical therapy (God only knows when that will be). And I'm not adjusting to a new medication (CareOregon finally approved my doctor's prescription for a long-acting narcotic -- yay! -- which means I'm catching up on blissful, pain-free sleep).

In the meantime I thought I would share with you my new web addiction: poets.org. Since novels and book-length non-fiction are out of my reach for the time being, I've turned to articles, short stories and poetry for intellectual and artistic sustenance. And stumbling upon the Academy for American Poets website has been a delight as the poetry in my library is limited, as is my bank account (yes, I know there are these things called "libraries" but that actually requires planning and remembering due dates and just...too much cognitive effort). They have hundreds of poems from hundreds of poets -- both contemporary and traditional -- as well as short articles about famous poets and technical aspects of poetry. Needless to say, I love this place.

Here's a portion from Jany Kenyon's "Having it out with melancholy" which has been resonating with me lately:

You taught me to exist without gratitude.
You ruined my manners toward God:
"We're here simply to wait for death;
the pleasures of earth are overrated."

If Obama were a sitcom...

2008-01-08T19:05:00.000-08:00

Arianna Huffington blogged today about the notoriously introverted Larry David stumping for Barack Obama in New Hampshire. At one point David stated, "Voting for Hillary would be like doing Frasier again on TV. Don't you want something fresh, new and creative?"

A. and I thought the Frasier analogy was a good one, and it made us wonder what sitcoms would describe the other candidates. Here's what we came up with:

Barack Obama -- The Cosby Show. The black guy who's white enough that you actually want him for a neighbor.

John Edwards -- Scrubs. Cleverly highlights the insanity of the health care system. But gets patchy ratings.

Mitt Romney -- Becker. Got the big network syndication deal, but no good lines.

John McCain -- M*A*S*H. A long-running military sitcom that was respected but never really that funny.

Rudy Guiliani -- Joey. Popular womanizer who leaves New York in a bid for national glory. Got some good ratings at first, but then everyone stopped watching.

Mike Huckabee -- My Name is Earl. Likable guy with a crazy past trying to do good. But the potential for disaster is never far away.

Wondering about the Christmas Star and Papal homilies

2007-12-25T01:22:00.000-08:00

Just about to take a bath and go to bed but thought I'd post this article I saw in the Indy last week about what exactly the Christmas star was. The idea that it may have been a rare collusion of Saturn and Jupiter is a fascinating one.

The Midnight Mass is just finishing up on television and while it's quite beautiful, it makes me miss the Divine Liturgy terribly (I've been missing a lot of things lately). Maybe 2008 will be the year I'll be well enough to be able to go.

As I listened to the Holy Father's sermon, I found myself distinctly underwhelmed. I mean, I liked the part about how God hasn't allowed himself to be shut out when people have closed the door to Him, as symbolized by Jesus being born in a stable because there was no room in the inn. There was also something about humility at the end that I can't remember now because my memory sucks, but at the moment I thought it was cool.

Yet the whole thing made me wonder if the Pope writes his own sermons, or if he has someone write them for him -- you know, like the President does. And if he does have someone to write them, well...are they on strike too? Is the homilist union walking the picket lines with Tina Fey and colleagues?

Good chocolate, bad tomatoes

2007-12-21T17:02:00.001-08:00

Chocolate: A cure for cancer? - Independent Online Edition Annotated

Chocolate contains as many as 400 different compounds that promote a better mood and alleviate anxiety, which helps to explain why so many people experience cravings for it.

Yup. Just in time for all that Christmas fudge and other chocolate goodies is even more news about how good chocolate is for you. True, you want dark chocolate with a high cacao content (my favorite is from this local company). But with 400 different compounds, I'd imagine a few of them manage to make it into good ol' milk chocolate.

On another food related story -- also from the Indy -- I was shocked and disappointed to hear that Whole Foods has been stocking tomatoes from a Florida farm notorious for its horrific working conditions. Indeed they apparently "ignored an appeal by the Coalition of Immokalee Workers to pay an extra penny a pound for its tomatoes" -- you know, the Immokalee Workers who got Taco Bell to improve conditions and pay an extra penny. Whole Foods responded by reiterating its commitment to workers rights, but didn't answer this particular charge. Sigh. Very, very disappointing.

Sorry for the lack of posting lately. I felt really, really shitty last week after all the extra doctor's appointments and being on Prednisone and eating a yummy but hard-on-my-tummy birthday cake (bought at...Whole Foods!). This week I've been feeling better and channeling that energy into doing a little bit of Christmas baking each day so that I don't do it all on Christmas Eve and then spend January in bed.

Of floods and birthdays

2007-12-06T21:23:00.000-08:00

The recent near hurricane didn't do much of anything here in downtown Portland. But being the disaster slut that I am, I thought this was a stunning picture when I saw it on the front page of the Oregonian yesterday. Yes, that's an overpass just atop the Chehalis river which is atop Interstate 5. Unfortunately I-5 is the road my godfather would need to take to come visit me for my birthday on Saturday. But as you can see, I-5 isn't exactly usable, so the birthday celebration will have to wait a week or so.

Which might not be such a bad thing. As you may have noticed, I've been a bit quiet lately. Typing with a broken index finger is cumbersome. And all the extra doctors appointments since the fall have been kicking my ass. Normally I manage about two a week with the odd three-appointment week. But this is my second three-appointment week in a row (it was supposed to be four, but I canceled pelvic floor physical therapy for tomorrow as I'm just too wiped out). And next week will most likely be another three-appointment week. And I'm still -- STILL -- wearing the damn cast boot from the sprained ankle in September. The doctor told me on Monday that I need to start wearing it all the time, including in the house (I've just been wearing it when I have to walk much outside, like, say, when I go to the acupuncturist and walk up and down 23 stairs) as my ankle is still so swollen he could barely feel the bone. That and he put me on Prednisone for ten days to help relieve the inflammation. My ankle is still swollen but my shoulder and finger feel better.

So, I think maybe Chinese take-out and a nice day of rest with my honey will be the best way to celebrate turning 35 this weekend.

P.S. A blessed Saint Nicholas Day to you all -- what's left of it!

Gravity still hates me -- though I did taunt it a bit

2007-11-26T22:51:00.000-08:00

Once a week my massage therapist/acupuncturist massages and needles away my pain and makes my life just a little bit better. The only drawback is that her office is up a long flight of 23 hard wooden stairs. So every week I slowly make my way up the stairs with little rest breaks along the way and carefully make my way down after my session.

Except I wasn't very careful last Wednesday. I quite foolishly decided to attempt going down the stairs with my bum right knee, a cast boot on my left foot, a plastic bag of groceries and my cane in my right hand while holding onto the railing in my left hand. It only took one step for me to completely lose my balance and fall head first down each and every one of those 23 hard wooden stairs.

As I was falling -- you know, after the obligatory SHIT! SHIT! SHIT! -- I remember being amazed at what was happening to me. I mean, I never fall down head first. In all my years of bad balance, I've learned to fall backwards onto my butt or against the wall. I also remember thinking while I fell that I had to finally stop falling at some point. And eventually I did. I landed flat on my back on the concrete floor next to the door.

A woman in the shop next door heard me fall, came over and ordered me not to move. My massage therapist came down and (I think she was the one) called the ambulance. Someone got my mother sitting out in the car waiting for me. "Why hasn't the ambulance gotten here?" she demanded and was answered a moment later by the paramedics arriving.

There was a lot of concern about internal bleeding because I'm on Coumadin, but after being examined by a zillion nurses and doctors and various radiological equipment in one of those blindingly bright trauma rooms in the ER, I had only sustained a broken nose (with a tiny bit of bruising under my right eye), a dislocated/broken right index finger (it makes typing LOADS o' fun!), and lingering vertigo (also great fun on the computer). And, of course, lots of beautiful bruises. Oh and a large scrape under my nose that A. says makes me look like Hitler (though it's close to gone thanks to Neosporin). I totally look like I've been fighting with the bruises on the knuckles of both hands and the broken nose. Or like a domestic violence victim (yes, we've been having fun joking about A. slapping me around -- not that domestic violence is anything to joke about!)

Everyone from the doctors to my family were amazed. A. figures I used up one of my nine lives (I think that makes four left). We can't decide if I was unlucky because I fell or lucky because the damage was so minor. I mean, I wasn't even that sore the next day like I expected to be. Though the vertigo has kept me from moving much -- both because moving aggravates it and because the medicine to treat it makes me very sleepy.

In some ways, the fall has actually been a good thing. It's been a reminder that I'm not as fragile as I sometimes feel. I've also stopped getting that sharp, icky feeling in my sternum that I had been getting lately when I thought of pain. And it seems to have actually relieved some of the chronic pain in my tailbone so that I've been able to lay on my back for the first time in awhile. It's all so very yin and yang, ya know?

And to top it all off, my neck and shoulder, which my massage therapist spent a lot of time working on during my session, felt great the next day. Now that's a good session!

So, yeah, gravity still hates me. But I guess I can't completely blame the laws of physics this time. ::grin::

Free Rice

2007-11-15T20:15:00.000-08:00

Saw this on Susan's blog and and now I can't stop playing it.

But it means hungry people are getting food so I'm more than happy to be utterly addicted.

Cross-dressing Gentiles

2007-11-14T22:19:00.000-08:00

We were flipping through the channels tonight and stopped on cable access with a guy dressed in a tallit (prayer shawl) and yarmulke. Within a few seconds I announced, "that guy's a Christian, not Jewish." Sure enough after a minute or so they started quoting Bible verses.

Yep, folks, after $130,000 in student loans I can spot a Christian Zionist on cable access in a few seconds. Totally worth it.

"Christians dress up like Jews?" A. asked. Then said it reminded him of stories about women coming home to find their husbands cross-dressing. "Yes, when I got back from the store he was in a prayer shawl. I should have known something was up when he wouldn't eat his bacon anymore."

Interestingly enough, when I went to look up "jewish prayer shawl" in Yahoo search (I was trying to remember the term "tallit"), the top two pages were by Christian Zionists. The second page listed, "Gentiles in Jewish Prayer Shawls," explained the appeal:

In particular, a shawl in a very real sense is symbolic of us PUTTING on the nature and the character of Jesus ON US when we pray and intercede and speak in His name.

Yep. I bet that's totally the reason Jews wear a tallit. They're putting on the nature and character of Jesus.

A half an hour later we were watching the episode of Seinfeld where Jerry's dentist converts to Judaism so that he can tell Jewish jokes.

Seems everybody wants to be Jewish these days.

The Christian house next to the Muslim house

2007-11-10T23:48:00.000-08:00

Last Monday the New York Times had a nice little article about Emmanuel III Delly, who the Holy Father named cardinal last month -- the first time an Iraqi has ever been made cardinal in the history of the Church. While the article spent a great deal of time talking about the state of Iraqi Christians, Cardinal Delly himself stated,

“I am not happy when people ask, ‘How is the situation for Christians?’ Those who kill don’t kill only Christians. They kill Muslims as well — the situation is the same for both.”

It was nice to hear him say that. I mean, I know I have a tendency to respond the same way as the cardinal. It pains me to know what's happening to Iraqi Christians. But it pains me to see what's happening to ALL Iraqis.

It reminds me of how a year and a half ago Reps. Crowley and McCaul began passing around a resolution in Congress that would address the plight of Palestinian Christians. Except they were suddenly inundated with protests from Palestinian Christians as the resolution blamed the Palestinian Authority for the deterioration of the Christian community in Palestine, when, in fact, according to Churches for Middle East Peace, Palestinian Christians overwhelmingly blamed the occupation, and particularly the Wall that is snaking through areas heavily populated by Christians, for prompting them to move away from their historic homeland. Within a couple of months, Crowley and McCaul withdrew their resolution when it became clear that not even the people who it was supposed to "help" wanted such help.

About the same time that Crowley and McCaul were tabling their motion, Ryan Beiler wrote a post on Jim Wallis's blog stating that "American Christians should listen to Arab Christians." The timing was impeccable, and the statement completely correct. And not just listen to one Arab Christian, but the Arab Church. What are the pastors, priests, nuns, bishops, archbishops, cardinals and patriarchs saying? A great deal if anyone cares to listen.

I think it's normal that we Christians are going to be worried about the people "like us" in the Middle East. But I don't recall where Jesus ever said we should only worry about other Christians. Indeed I recall him saying something about loving our neighbor as ourself and when a snide scribe tried to get our Lord to give him some wiggle room, Jesus promptly found the most unpalatable example of who a neighbor is for the scribe. We must be worried about what happens to Muslims. It should break our hearts just as much that more than 4 million Iraqis -- Christians, Shia and Sunnis -- have lost their homes and possibly as many as 2 million have lost their lives.

Because at the end of the day, Iraqi Christians are worried about people like them -- their Muslim neighbors who celebrated Christmas and Easter with them just as they celebrated Muslim feast days. As Cardinal Delly says:

“Christians and Muslims have lived together here for 1,400 years. We have much in common; in Iraq, the Christian house is next to the Muslim house.”

Pascha in the autumn

2007-11-04T16:40:00.000-08:00

I think I finally figured out what was making me so sleepy: Vitamin B complex. So, I've started taking it at night and this morning I woke up actually feeling better than I did when I went to sleep.

Indeed, it's been one of those glorious fall days where there's not a cloud in the azure sky and the sun shining through the yellow leaves makes them glow like gold. Makes the whole world glow like gold. When I pulled up the blinds in the kitchen, I actually found myself wanting to say my morning prayers for the first time in a long time. And I did.

Then I decided to listen to a CD of the Divine Liturgy. So I turned the stereo on, which was still set to the radio, which, on cue, was playing "Beautiful day" by U2. And, you know, I had to listen to it and sing along.

Touch me
Take me to that other place
Reach me
I know I'm not a hopeless case

Suddenly I burst into tears. It's been so long since I've felt halfway human! It felt so good to feel good again! Like resurrection, except in the wrong season.

After listening to the Divine Liturgy (and it was listening as the CD is set to a different tune than the two I'm familiar with), I listened and chanted along to the Paraklesis, a hymn the Orthodox chant during times of illness and suffering, as well as during the two weeks leading up to the Feast of the Dormition. The priest's wife at the Orthodox parish I used to attend many years ago taped it for me, little knowing how much it would become a soundtrack for my life. Eventually I bought the CD, and one of these days I'll have the whole thing memorized. My dream is to be well enough some day to chant the service at my parish on the Feast of the Dormition.

At any rate, there's a line in the Paraklesis that goes "ill am I in body, ill am I also in my soul," and the last few years it's certainly felt like that. I don't know if it's never being able to go to Divine Liturgy (since two years ago in July) or only rarely (since August) to the Catholic community up the street that probably reflects better my political and theologically leanings if not my liturgical needs. Or maybe my godfather Talal is correct when he half-jokingly states that my life is like perpetual Lent as I rarely get to eat anything good anymore (what I wouldn't give for some cheese and ice cream right now!). Maybe it's perpetual Lent in a spiritual sense as well.

But today was a moment of Grace. Just like during Lent a few years back, I found myself again longing for the Divine. Longing to remove whatever has been blocking my connection to the Heavens. And relieved to finally be feeling that oh so familiar hunger again.

It was a beautiful day
Don't let it get away

Just as the Paschal season gives way to Ordinary Time in the Catholic calendar, so the feeling of physical resurrection gave way to illness again. At first I started thinking up stuff to do with my extra strength. Go for a walk? Go to the Mass up the street? All the years of having this illness have taught me well, and I took it easy. The outdoors will still be there if I continue to feel well (and my ankle/foot heal). Mass will still be there next Sunday.

But I hope Grace remains.

An alien alien

2007-10-29T23:11:00.000-07:00

I've been a big fan of Everybody Hates Chris since it started and as the television is already on the CW at 8:30 on Monday nights when EHC is over, I've gone ahead and watched the show that follows it, the new Aliens in America. Having spent a fair amount of time around Muslims (though, to be honest, mostly Arab-Muslims) trying to figure out American culture, the premise of a Pakistani exchange student trying to fit into small-town Wisconsin seemed promising.

However, the show always reminds me of hearing Azmi Bishara say once that a person who makes Arabs into people who can do no wrong is just as bad as those who say Arabs can do no right. Raja, the Muslim in AinA is perfect. He is always honest. He is always kind. He closes his eyes when someone kisses on television and scolds his friends about objectifying women. He always does his homework. He always helps with the housework. In short, he's completely fictitious.

Now, again, my experience with Muslim adolescents -- or young adults -- has been primarily with Arabs. My experience with Pakistanis has been limited to the odd one who IMs me because my online ID is Arabic. But like anyone with a penis from any nationality, those online Pakistanis as well as my Arab friends were totally into getting laid. And just as we have stereotypes about them, they had stereotypes about us. Being a woman, the one I was most familiar with was the view that all women from the West were ready to hop into bed at a moment's notice. Some of them learned faster than others that wasn't true, but even the sweetest, kindest, most devout of them believed this to be so when they first stepped off the plane in America.

Coming from countries where sexuality and other vices were so repressed, many (though certainly not all) were interested in drinking, dancing, driving and sex -- stuff most American college guys are into also. Granted, as a Saudi friend of mine pointed out to me, he actually had an easier time getting dates back home where dating was practically illegal than he did in Portland, Oregon. He and his friends' interaction with women was an endless source of entertainment for me. * (Think the Roxbury Guys from Saturday Night Live)

And it could be on AinA too, if they just let their Muslim be, you know, real. Instead it's just a very bland sitcom that tries way too hard to make Americans like Muslims. As we all know, earnest, moralistic storytelling just never ends up being very entertaining.

*I had the good fortune to be this Saudi friend's "sweetie sister." Because this was America, I could actually be friends with the Arab guys (mostly Gulfis or khalijis -- there weren't that many Arab women studying at my university). Because I was not their type, nor were they my type, we were able to just be friends without the sexual tension. So, in essence, I was like the sister they could share the ups and downs of American life with. I learned at least as much about Arab culture from them as I did in my Arabic class.

The isolation of it all

2007-10-28T22:49:00.000-07:00

So, I'm talking to my sister tonight and asking how her day was. She tells me about going to the movies with her friends (sigh...I miss having a social life and find myself getting increasingly jealous when she tells me about hers) and going to my nephew's birthday party at Chuck E. Cheese's.

"He was having a birthday party and nobody told me?" I exclaimed.

"Well, they just figured you weren't going to be able to go," she replied.

True, Chuck E. Cheese's is probably the single worst place on the planet for someone with CFIDS/ME. But they can't invite me anyway? At least let me know what's happening?

There are so many, many reasons that this Damned Disease sucks shit, but the isolation of it all has gotta be in the top five. I feel so left out of everything. Left in my little studio alone in bed.

I use to be the cool auntie who played with them and got them all hyper and then left them with my sister. I hate that now my nieces and nephew only see me a couple of times a year at my mom's house on holidays. And even then, I spend most of the time curled up on the couch.

It's that all too familiar feeling of watching life -- mine and the lives of others I love -- pass by without being able to grab hold of any of it.

Net gains

2007-10-23T23:00:00.000-07:00

I hadn't intended to be so quiet the last week or two. Mostly I've been sleeping -- a lot! Or even just laying in bed for hours enjoying not having to move. Which has left me with a lot of time to think. Indeed it's been an introspective time of mentally and physically climbing up out of the abyss and returning to my baseline level of exhaustion.

Though not without the obligatory one step back for every two steps forward. I'm back in the cast boot as my left ankle started swelling a lot, as well as inexplicable bruising developing up around my toes that's been getting worse with each day. However as long as I brace my normally weaker right ankle, I seem to manage walking in the cast boot using only my cane instead of crutches. So, you know, even if it is one step back for every two steps forward, at the end of the day it's still a net gain of one step.

However that positive attitude was lacking last week after my trip to the gynecologist. I spun it a bit more positively than I actually felt about it. Frankly, I had this lingering despair about not being able to have a laproscopy, and even though I don't feel so depressed now, I still feel unsure about what to do. Everything feels so cranky in my pelvic region that I'm just not too keen on sticking a piece of plastic in my uterus. And even though the hematologist feels that it should be safe to go on the Pill since I'm already on Coumadin, I could tell my GP was a bit nervous with his "the decision is up to you but I think there would be less risk with the Mirena." The one bit of good news is that pelvic floor physical therapy will only cost $10 a session, so I think for the time being I'll do that and see how I feel afterwards.

In the meantime, I have A.'s return to look forward to on November 13th. That will be 229 days we will have been apart. Far far too long. I hope the next three weeks go quickly cause I'm way overdue some cuddling. ::grin::

The hopeful and the disappointing on pain relief

2007-10-14T23:09:00.000-07:00

I've been meaning to post/comment on this article in the Indy about a drug that combines capsaicin and an inactive ingredient in lidocaine to create a powerful analgesic that is as effective as an anesthetic without the paralysis and sedation. Needless to say, I find this quite promising news. Indeed last month when I had that horrific pelvic pain, I almost asked the doctor for an epidural, but didn't want to sound like a complete idiot (I probably did anyway). Plus, the whole not being able to move thing would have sucked. Though, it's not like I was moving much anyway...but I digress.

It's also promising given a study that came out last month suggesting that people with fibromyalgia have fewer opioid receptors than healthy controls, meaning that narcotics are not as effective for us. Which might explain a few things. Though in my case I also suspect I've simply developed an opioid tolerance over the eight years or so I've been using them.

Now, of course, it's one study so it's not going to affect clinical practice overnight. But I will be interested in seeing how this does end up translating on a clinical level. I would imagine it will influence how doctors -- like my friend in the ER -- are trained to treat both chronic and acute pain in patients with fibromyalgia. What I worry about is that doctors will read this (or specifically an article like this) to mean that they shouldn't bother giving us narcotics at all, when, in fact, it's not that narcotics don't work, they just don't work as well. A big difference.

Which makes me hope that capsaicin combo drug turns out to be the miracle it sounds like it could be.

Oh, and speaking of possible miracle drugs (or well, okay, miracle is probably an overstatement), Hemispherx, the makers of Ampligen, finally filed a New Drug application with the FDA. According to the Ampligen Wiki page, Hemispherx has been saying it was going to do this for the last five years, so the fact that it really truly has is promising.

Mary Schweitzer is a ME/CFIDS patient who has been taking Ampligen for some time now and has recorded her experiences with it here. Considering its cost, I doubt Ampligen will be in my future any time soon. But having it available to more patients, meaning more research, can only be a good thing.

Visit with the gynecologist

2007-10-09T22:10:00.000-07:00

So I had my appointment with the gynecologist today. Sigh.

Her first comment was that my chances of finding a surgeon who would be willing to do a laproscopy on a patient taking Coumadin are slim. So, a firm diagnosis of endometriosis -- not to mention any removal of theoretical implants -- is unlikely.

Hormonal treatments like GnRH or danazol are also out as they will make my CFIDS/ME worse (ugh!). Which is fine as I wasn't looking forward to being a bearded lady.

The one hormonal treatment that she does recommend is Mirena, a progestin IUD. That's something the uro-gynecologist recommended but I had been reluctant as the information I read about it stated my cramps might get worse. Eek! But Dr. S relieved my fears on that level, and I'll talk to my doctor about it on my next visit.

The other thing she suggested was talking to my hematologist and see what he would think about me taking the Pill as I'm on Coumadin and shouldn't be getting blood clots while on it. So, I'll be calling the hematologist's office tomorrow as that would be the easiest treatment of all.

Lastly, she really recommended pelvic floor physical therapy as there are some muscular issues (it's like I do the Kegal exercise constantly but unconsciously) that are probably causing a lot of my pain. This was something the uro-gynecologist recommended, as have my massage therapists. Except, my health insurance (CareOregon -- Oregon's Medicaid HMO) won't pay for it. She suggested talking with a well-known local Catholic hospital system to see if they have some sort of program for people who have to pay out of pocket as they have a good pelvic floor PT program and are theoretically non-profit. So, another phone call to make tomorrow.

I was quite disappointed about the laproscopy thing. A friend had a really good experience with hers and though I knew my case is more complex than hers, I didn't think it was *that* complex (damn that PE!). Plus, we're not sure if there's something else going on down there (i.e. infection) and a peek in there would have been handy. On the other hand, any surgery when a person has fibromyalgia can increase the central sensitization that is at the heart of the problem of chronic pain conditions, and avoiding surgery if at all possible is a good idea.

But, fingers crossed, some of today's recommendations will help keep what happened last month from ever happening again. That is, if endometriosis is even what caused what happened last month...

Getting better

2007-10-07T20:09:00.000-07:00

"Wow, you get to make people miserable and there's nothing they can do about. Just like God."

Ah, the witty wisdom of Homer Simpson...well, for the first ten minutes. Then like every week, it goes down hill from there.

Actually, life's gotten a bit better. I can walk without the cast boot and do some yoga, which means my fibro symptoms are going back down to normal levels so I can actually sleep restfully. And this week there's only one medical appointment on the agenda so I'll be able to do nothing but rest blissfully and recuperate.

Hopefully by this time next week I'll be close to my baseline. Who knows? Maybe I'll even finally get to finishing some draft posts. ::grin::

Sisyphus on one weak leg

2007-10-03T17:13:00.000-07:00

Some people have joked that CFIDS/ME should be called Sisyphean Disease because it feels a lot like the myth of Sisyphus, the king of Ephyra who was sentenced to an eternity of pushing a boulder uphill each day. Though I often use the "walking through concrete" simile as well.

Normally I push my boulder uphill with one good leg and one weak leg. For the last two weeks, I've been doing it with one useless leg and one weak leg. Simple tasks like going to the bathroom have become arduous tasks. But, you know, I have Chronic Fatigue Syndrome -- I don't do arduous. Arduous is why I have cried every day for the last three weeks (yes, there was that horrible week before the ankle injury) just from the sheer overwhelming-ness of basic self care.

Actually, yesterday I didn't cry. It was the first day in awhile that I started to feel a bit like my normal self. But then I had to get my blood checked today (I had put it off as long as I could) and there's nothing like stumbling along on crutches to suck the life out of you. When my INR was super high and my nurse wanted me to go back on Friday to get it checked again, I broke down. Thankfully, she and my doctor agreed to let me get my blood checked at the clinic where I'll see the gynocologist on Tuesday.

I also finally relented to having my ankle X-rayed as it's been two weeks and it's still hurting a lot to put weight on my foot. So far my doctor says it looks like it's not broken (thank you Jesus!), though only the radiologist will be able to say for certain that it's not. I probably have torn a ligament, and that takes 4-6 weeks to heal.

If nothing else, I think I may actually be tired enough to fall asleep before 3 am tonight (I've gotten into a bad pattern of sleeping until 2pm and then not falling asleep until 3am or later). And hopefully tonight will be the night I discover the magic cocktail of narcotics and whatnot to keep me asleep through the night instead of waking up every couple of hours (sooo annoying).

My green city

2007-09-24T21:32:00.000-07:00

Not that I'm surprised, but yet another one of those silly top ten lists has Portland as one of the greenest cities in the country. Granted it looks like it's more about selling houses than truly about the environment (I mean, Chicago as a green city? And no Seattle?), but hey, it's yet another thing to make me smile about my beloved city.

They forgot to mention our farmers markets (a couple of them are year-round, with the others getting there) and that we were the first city to use car-sharing. Or that we cut emissions levels back to 1992 levels while our economy expanded (though through some bizarre EPA loophole, we have some of the highest levels of benzene in our air, to which I've discovered I'm terribly allergic).

Though, I will admit we are lacking in city gardens -- at least in downtown. But if I ever get the energy, I'm so going to start a rooftop garden revolution in this city (and if you're reading this and do have the energy, drop me an email) ...

Validation

2007-09-22T22:52:00.001-07:00

Note to self: don't take narcotics with lemon balm tea. And it is a good thing I didn't take one of those left over Valium in addition to the narcotics and tea last night to ensure I really did sleep (I didn't sleep well the night before). I wouldn't have just slept all day today, but probably would have slipped into a coma.

It's true, I have slept all day. I woke up around 10am, took my morning meds and went right back to sleep until a neighbor knocked on the door at 1:30. After a very brief chat, I returned to sleeping until nearly four. Made a bowl of cereal and some lemon-ginger tea, watched The Trouble with Harry, then started nodding off again during Vertigo until A. called around 6pm or so. Even after I got off the phone with him and started watching Psycho (it's been Hitchcock week on AMC) I dozed off again while Norman Bates and Janet Leigh chatted over sandwiches. But I did wake up in time for the infamous shower scene, though I was awfully groggy.

I probably needed the sleep as it's been an exhausting week. Hadn't had a chance to finish recuperating from whatever the hell landed me in the ER the Thursday before last when I went and sprained my ankle -- my good ankle. Hobbling around on crutches and a cast boot this week has knocked out whatever reserve I had left.

But between naps over the last ten days, I have found myself thinking about that ER visit. And the pain that prompted it. How my attempts to explain the pain to a doctor who had never seen me in my life had descended into superlative modifier jibberish (it's so horrific, it's very excruciating). I know patients exaggerate and lie and that ER physicians learn to anesthetize themselves from this early on. Yet, how do I explain that it really was horrific? That I wasn't exaggerating or lying? I'm sure there is a rational way to do it. But one, I don't know what that way is and two, I don't know how to be rational when dear God, make it stop already! is all I can think of.

When I sprained my ankle a few days later, I almost wanted to go back to that doctor just to show him that I'm not some pussy when it comes to pain (especially after basking in the compliment from my nurse who assumed a doctor had wrapped my ankle when in fact I had). The same way I wanted to go back to those doctors last year who sent me home thinking I was merely constipated (and possibly someone "who doesn't handle pain well") when in fact, I had clots in both lungs. You know, vindication for once.

As this pain was a major exacerbation of pain I've been having off and on for three years now, and three years ago I went through a similar level of pain -- but for three weeks (I vowed after that I would NEVER again be that passive about being in that much pain) -- I couldn't help but try to contextualize the experiences, so to speak. Then and now I had a profound sense of victimization afterwards. It was the helplessness of it all mostly. Nobody has been able to make it stop. And since they don't know what is causing it, I have no assurance that it won't come back again. Indeed, I can probably count on its return. And that thought just makes me want to cry from fear and anger -- and has made me cry from fear and anger all this week.

On Tuesday, after the pain had subsided, when I saw my doctor -- my doctor -- I was calm and rational as we talked about my ER visit and the pain in my pelvis for the umpteenth time. He kept flipping through my chart trying to think of what test he hasn't done. MRI? Two on my spine, one on my brain. CT scan? One on my abdomen and kidneys. Cystoscopy? Two. Ultrasound? One of my reproductive organs. X-Rays? Spine, coccyx, hip, pelvis. He looked at me sadly. "I believe you really are having this pain...I just don't know what to do."

My eyes began to tear. And I started telling him about when my knee joint hemorrhaged internally and how the paramedics said it looked like a soccer ball on top of my knee and how they gave me morphine every twenty minutes but it didn't really help all that much and how the pain I had when I went to the ER the Thursday before last was not quite that bad but close and I just can't keep going through that pain. And he nodded.

I composed myself and brought up the endometriosis idea. Spoke confidently about the material I had read about it. He nodded again and said a laproscopy was probably the next step at this point. He didn't even give me that half-roll of the eyes when I pointed out that there have been cases of endometrial implants on the lungs presenting as pulmonary emboli. "Crazier things have happened," he said.

When I left I realized it was the first time I didn't feel intimidated by him. Like I'd finally overcome my fear and natural deference and spoke with him as a partner.

Validation really is an amazing thing.

P.S. The sprained ankle has made me decide that there is one good thing about having an invisible illness: you don't have every other person stopping you to ask "what happened?" So, so, so annoying...

God hates me

2007-09-18T22:17:00.000-07:00

Last week it was some mysterious, exquisite pain in my right pelvis that left me unable to step down on my right leg.

Now that my right leg is good for walking (though weak and sore), I go and sprain my left ankle.

Is it me or is this some sort of divine sign that walking is not in my future for the time being?

::pout::

Yet another viral puzzle piece

2007-09-16T00:49:00.000-07:00

This story (per Sylvia's suggestion, get your shot glasses ready as the article has a number of those annoying cliches) has been all the buzz on the Co-Cure board as it demonstrates yet one more viral link to CFIDS/ME. In this case, the doctor found enteroviruses in the stomach tissue of people with CFS at a much higher level than controls. What was interesting about this study was that the researcher, John Chia, did endoscopies instead of blood draws, which gave him a lot more success in finding what he was looking for.

However, Kristen Loomis, from the HHV-6 Foundation, pointed out in the article that there are over 15 different pathogens linked to CFIDS/ME. And I think Nancy Klimas is correct that "we should look at treatments that make the immune system stronger and less susceptible to viral infection." The way I see it, the problem seems to be with the immune system allowing too many pathogens to hang out in our bodies. That something is innately wrong with the way our immune system works, whether it's the fragmented RNase-L enzyme or lack of Natural Killer Cells or increased neutrophil apoptosis.

But, at least this gives us yet another piece of a very complex puzzle.

Feeling better today. Suddenly about 10pm the pain in my pelvis/back dropped considerably. As if a giant balloon had deflated. It feels so good to move without wanting to scream. And lemme tell ya, NOW I've got some muscle strain...

Update: Was going through my CFIDS/ME bookmarks and came across this study. Apparently this isn't the first time enterovirus has been associated with our Damned Disease.

And the race for most genocidal in Iraq evens?

2007-09-14T21:47:00.000-07:00

A little less than a year ago I asked if Bush would be able to catch up to the level of Iraqi deaths that occurred under the Clinton-Albright Middle East foreign policy. Well, alas, according to this report, 1.2 million Iraqis have died since the invasion in 2003. So, Bush may just be taking the lead -- and in record time!

River over at Baghdad Burning and her family have finally joined the long lines of refugees in Syria. You know, because everything has been so "successful" in Iraq, as our president keeps saying. Over and over and over. Me thinks thou protesteth too much and all that.

What a healthy person doesn't understand

2007-09-14T12:17:00.000-07:00

There's a passage in the novel One Day in the Life of Ivan Denisovich in which the protagonist, a prisoner in a Siberian gulag, feels ill and goes to the dispensary to get out of work for that day. He is greeted by the literature student-cum-medical assistant who tells him that it's too late to try to get out of work. They only have two spots for sick people and those are given away the night before. When Denisovich insists that he really is sick, the medical assistant takes his temperature. But, alas, his temperature is only 99.2. If it had been 100, then he'd be exempt from work. As Denisovich leaves to face hard labor in the subzero weather, says to himself*:

How can you expect a man who's warm to understand a man who's cold?

That line was running through my head yesterday evening as I was dressing myself carefully and with excruciating pain after being discharged from a four hour stint in the emergency room. The back/pelvic pain that I've had for three years now hit an all time level of agony Wednesday night when it hurt to put any weight down on my right leg, much less stand or sit upright. From the base of my spine all the way along the right side to my hip, from my waist to the top of my butt was throbbing with white, burning hot.

My back hurt when I woke up on Wednesday, so I iced it and rested. When it kept getting worse, I tried heat instead. That felt a teeny, tiny bit better, but not enough to where I could walk. When it was still hurting yesterday, I decided that it was time to go to the hospital.

I tried to tell myself that it was probably going to be a pointless visit, though I might at least get some better pain medication. But when I got there and they were initially so nice and thoughtful (they gave me a shot of Dilaudid and a muscle relaxant as soon as possible), I thought maybe they were going to figure it out. Maybe this was something more than just the worst exacerbation of period pain ever.

But, of course, after some X-Rays (which hurt like a mo fo because it meant laying on my back on a hard table) and a urine sample and some blood work all came back normal, the doctor decided my problem was muscle strain, despite the fact that I did not injure myself ("well, you might have in your sleep"). Despite the fact that it was worse after I had done nothing but rest and ice all day the day before. Despite the fact that about the only things more painful than what I've been feeling the last two days has been the time my knee joint hemorrhaged on the anti-coagulants when I was post-operative almost nine years ago (it's like getting shot in the kneecap -- the paramedic said it looked like I had a soccer ball on my knee) and the blood clots in both lungs I had last year that swelled up so much they semi-obstructed my bowels. Hmm...actually, I think my pain the last two days has been pretty damn close to the later.

No, despite all my questioning of his diagnosis, he would have none of it. Muscle strain it was, though he did concede that perhaps my GP should do some further imaging. But not without the "you know, being overweight is hard on the back" talk (Really?? Despite being overweight since I was a toddler, I don't think I've ever heard that before! Why, let me just drop off all these hideous pounds -- I'm mean, I just keep them around for shits and giggles, don't you know?). The bastard did at least give me a prescription for Percocet (though I take oxycodone daily for pain already) and diazapam (Valium) because it's a better muscle relaxant than what I already take.

Muscle strain? I know what muscle strain is! It's what I'm feeling in my left leg and upper back as I've shifted all my weight there for the last two days.

On the actual discharge sheet he wrote that the diagnosis was sciatica. When the nurse was going over the discharge papers, she read the sciatica diagnosis and then added, "even though it doesn't act like normal sciatica." Well, if it doesn't act like normal sciatica, why the fuck call it that? I was crying profusely by this point, not just because of the pain, but because I was fucking pissed. And facing the prospect of my pain not ending anytime soon, except maybe once my period starts (3-4 days -- hopefully!). "I'm sorry you're in so much discomfort," she said.

And that was when I thought of my dear friend Ivan Densiovich. Except my version of his line would go something like, "how can you expect a man who's healthy to understand someone who's in pain?" Though "ill" could just as easily be substituted for "pain."

Once I got home (my mom drove me home and warmed up my Meals on Wheels -- even did the dishes as I lost my caregiver again and it will be another week or two before I get a new one) and had a chance to calm down a bit, I realized I should have never gotten my hopes up. And that technically I did get what I had hoped for: stronger pain meds. They are helping a little bit more, though not nearly as much as I wish they would.

Yet, I guess what annoyed the fuck out of me was the condescension of it all. It's one thing for him to say, "it's clear you're in a hell of a lot of pain, but I'm afraid I don't have a diagnosis at this point and whatever the problem is will be beyond what I can study here in the ER." I understand that. I know that the ER really doesn't figure out what's wrong but only what's not wrong. All they care about is that you're not going to die once you get home.

I'm a grown up, ya know? I just want to be treated like one by my doctor.

______________________________________________

*During this scene between Shukhov (Denisovich) and the medical assistant, Shukhov tells about the camp doctor.

"But, he recalled, now they didn't let you lie in bed even in the camp infirmary. A new doctor had arrived...a fussy, loud-mouthed fellow who gave neither himself nor his patients any peace. He invented jobs in and around the infirmary for all patients who could stand on their feet...Work, he said, was a first-rate medicine for any illness."

Sounds like a few doctors we here in the CFIDS/ME community know too well (omg -- I was totally going to link to Simon Wessely on Wikipedia, but after looking at it, I've decided that somebody's clearly been working at bit too much on his Wiki page).

Update: I saw a doctor in my own clinic this afternoon. Not my doctor, but a female family doctor whose practice includes OB/GYN. And she did treat me like a grown up. While she also thought the pain seemed similar to muscle pain, she at least validated my points about why it might not be. We also talked about the possibility of endometriosis. It's a very common co-morbidity with CFIDS/ME and considering the proximity with my cycle, it merits some further discussion with my doctor. I think they were so worried about the urinary tract infections at the uro-gynocology clinic a year and a half ago that this whole avenue got ignored. Though it's definitely not an easy diagnosis to reach, nor to treat.

Lordy, talk about deja-vu. To the day.

I guess it is a holiday

2007-09-13T14:50:00.000-07:00

So, last year you might remember I shared this on my post about the fifth anniversary of that day:

And bizarre it is. My 12-year-old niece greeted me on the phone this evening with "did you have a good September 11th?" I suppose to school children, for whom this is just a rambling lesson from their language arts or social studies teacher, it does seem like a state holiday of sorts.

And on Tuesday I was amazed to hear on the news that people actually got up extra early on a weekday to go to a September 11th event in Oregon City which involved dumping something with all the names of those who died into the Willamette River as well as hanging a huge-ass American flag from the bridge.

All I could think of was that line from Team America: World Police: America -- fuck yeah!

A. and I were talking about it that night and joked that's it's as if the whole day has become a holiday or something.

Well, apparently it has. It's called Patriot Day and was enacted by Congress on October 25, 2001.

So, when are people going to get off work for it?

So long Lyrica relief

2007-09-10T08:55:00.000-07:00

It's way too early for me to be up. Yes, I know most people have normally been up a few hours by now. But since I usually don't fall asleep until 1 am or later, 10:30 am is the earliest reasonable time for me to greet the day (and usually quite groggily at that). Last night I almost fell asleep around one, but then my lungs started hurting and I remembered that I hadn't taken my Combivent inhaler. That left me -- as it so often does -- all jittery and hyper. I don't think I fell asleep until after 2-2:30am, but woke up before 7am and despite taking two Lortabs (extra-strength Vicodin) and an Oxycodone, I couldn't go back to sleep because I was just so damn achy. And this little pattern has been happening now for a few weeks.

I think I can say with certainty that the Lyrica isn't working any more.

Gosh, I started tearing up when I wrote that last sentence. I might be able to get a few more weeks of relief if my doctor choses to increase my Lyrica dosage. But 450mg/day is the highest dose recommended (I'm at 300mg/day), unlike Neurontin where I was able to keep going up to 3600mg/day allowing me to get a few more months of relief. With Lyrica I had three glorious weeks in July of great sleep and less pain and fatigue, but since August it's been downhill.

Sigh. Hello long-acting narcotic?

Update: As fate would have it, it's apparently Pain Awareness Month, according to the American Pain Foundation. So, consider this post my way of creating pain awareness. ;)

In the email newsletter the APF sent me today, there was a link to this article written by a doctor in Seattle. I particularly liked this quote and it sums up my own feelings about how pain/illness can work for greater good -- you know, if I would just let myself feel my emotions more than in little bursts here and there:

The problem is that many people in the midst of illness ignore their emotional why stories, or they tell themselves they're being stupid for having those feelings. But holistic healing, in the greatest sense of the word, means that we look at all of our parts, not just some. We address not only the physical symptoms, but the intellectual and emotional experience associated with it. There is a reason it is so important to have the courage to ask our feelings, "Why?" when we are sick. That is because it gives us the opportunity to use our physical symptoms to heal our feelings. When we do that, we take a simple bodily concern and bring it to the level of a life-transforming event. We use our illness for its highest purpose — to help change who we are, how we live and what we believe from the inside out.

More eco-friendly trans-Atlantic travel?

2007-09-10T00:02:00.000-07:00

NY welcomes wave adaptive modular vessel - Yahoo! News

Okay, so it kinda looks almost as creepy as Alfred Molina in Spiderman 2. But, you know, with curtains, a jacuzzi, and a hot cabin steward, it could make for a more comfortable trip across the Atlantic than being packed into coach like slaves headed for the New World. And would make me feel less guilty about our carbon footprint with A. flying over all the time.

Hmm...well, I guess that's one thing that can make me feel better about A. not making it over this summer -- one less flight causing global warming!

Craving a headstand

2007-09-09T02:44:00.000-07:00

Every now and then I have days where I just crave doing something physically demanding. Like, say, doing a headstand. Or jumping up and down. Intellectually I know I can't do those things. And thankfully, my rational side is fairly dominant. But it's weird because it will just feel like I could totally do those things. Like I could just get up out of bed and do a headstand like I learned in yoga, even though I never did a headstand in yoga because I didn't have the strength.

I did, however, do handstands when I was in gymnastics back when I was seven. I remember what it was like to push my hands down on the ground and then kick my feet up into the air, bringing my body with them. It felt invigorating.

The last few days have been slightly better than average -- "average" meaning mostly bedridden. I've made one meal and done the dishes each day. Maybe it's the doing the dishes part that feels so remarkable. There's just nothing quite as satisfying as a clean kitchen. Though yesterday I made a fairly involved dinner -- a rosemary pork chop, fennel au gratin and garlic mushrooms -- so doing the dishes that night in addition felt like a real accomplishment. I even took the garbage downstairs to the dumpster room. Can't tell if all the laying in bed lately to rest because of the bursitis made me feel better or the acupuncture.

I did manage to make an omelet this morning and do the dishes tonight, but I've been sore most of the day. Yet right now I still have a hankering to defy gravity and pull my body up so that my toes reach for the sky, even if my brain and sore muscles are rather baffled at the thought.

The Craggy Island of British Politics or Where's Tony Blair?

2007-09-07T20:41:00.000-07:00

A. and I were wondering last week what has happened to Tony Blair. He handed over the keys to 10 Downing Street and hasn't been heard from since. Not that I haven't dreamed of the day when we wouldn't be hearing daily his stuttering of excuses for invading Iraq.

"Maybe he got sent to Craggy Island," I said.

It made us laugh hysterically. And then we decided to figure out what other British political figures had been banished to Craggy Island in the forms of Father Ted, Father Dougal, Father Jack, Mrs. Doyle, and assorted characters.

We figured Tony Blair for Father Ted. The leader of the pack. The only one who seems to have common sense. Sorta. Unless vanity or money or incompetence or revenge or, well, you know, stuff gets in the way. "Careful Now...Down with that sort of thing."

A. thinks Charles Kennedy, the former Lib Dem leader would make a good Dougal, the mushy-peas-for-brains, child-like priest. Though, he really could fill in for all three Fathers.

We switched genders a bit when it came to Father Jack as Margaret Thatcher seems to be filling his drunken, dreaming-of-past-glories shoes these days. "Drink! Feck! Arse!" Or rather "Drink! Feck! Falklands!"

As to Mrs. Doyle, we couldn't think of a worthy British politician to represent her clumsy, hyper hospitality. Though, since we switched genders when it came to Father Jack, we thought John Major in an apron would definitely add comic value.

However, as John Major has to be one of the most boring people on the face of the planet, we figured him for the role of Father Sloane, the excruciatingly dull priest who comes to visit Father Ted every year, turning the parochial house into silent, mind-numbing languor.

As for Bishop Brennan, the perfect person seemed to be someone who was not at all British -- Jacque Chirac. I mean, he is an impatient, intimidating guy. Perhaps it would fit since he's not really from Craggy Island. But then that would make him the boss of increasingly obscure British politicians, so, um, maybe not. Or maybe the whole thing is just "an ecumenical matter."

If you've never heard of Father Ted and company, might I suggest some Netflixing is in order. I suspect there are probably only two or three of you dear regular readers who will get both the Father Ted context and the British politics context. But for you two or three, I hope you had a least a bit of the laugh that A. and I had with this version of Craggy Island.

So, where IS Tony Blair? Well, apparently he's finally surfaced in Jerusalem where he's chatting with UN officials, among others, about the catastrophe going on in Gaza. I suppose you could say it's a Craggy Island of another sort.

Cousins among the medically oppressed

2007-09-06T23:26:00.001-07:00

Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated

Stigma also played a part in denying mental patients treatment for physical illness. An Australian study found mental patients with heart disease were less than half as likely to receive surgery for their condition and were 80 per cent more likely to die from it than unaffected patients.
"We have missed these links [between mental and physical health]. Without them we fail to capture the full impact of mental illness," Professor Prince said.

Um, ya think?

Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people with ME/CFIDS because it will create "dependence." Or that people with ME/CFIDS do not have neuropathic pain, gastrointestinal symptoms, and chemical sensitivities. Because, you know, we're mentally ill, not physiologically. Seriously, I can't believe this is STILL going on but I read the linked article today, which deals with the discussions concerning the recent guidelines the British National Health Service (NHS) put together for physicians regarding ME/CFIDS. Grrr...

In an online group about ME/CFIDS that I read sometimes, someone posted a few months back about how even though our disease is not one of mental illness, the language a lot of us use regarding mental illness is often highly derogatory. Mental illness is very real, even if physicians use psychology to invalidate our suffering. I thought it was an important point. I don't want to be diagnosed with depression because it's incorrect, not because I dislike the diagnosis.

And how many of us have, say, heart disease but it's missed because doctors think we, like patients with mental illness, are just hysterical and need a bottle of Prozac and a shrink? Instead of pushing the mentally ill away as far as possible from us, we should be embracing them as our cousins among the medically oppressed.