Thursday, January 23, 2014
Most of all, I hope you have been well, dear reader. I have missed you and hope I may return soon.
Tuesday, November 08, 2011
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.
(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.)
Saturday, October 30, 2010
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.
Friday, September 04, 2009
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.
Sunday, August 30, 2009
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.
Tuesday, November 11, 2008
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.
Guess that means we gotta keep pressing the issue. And perhaps the recent election presents us with new opportunities.
Sunday, September 21, 2008
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 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 suggesting the same thing. 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 thinking 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 catologue 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.
Thursday, July 10, 2008
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 "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). Any one of them would be a great place to send money. Another excellent organization would be the IACFS/ME, which announced recently that it 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 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. And 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 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 breakthrough's? 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 group 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. So, 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 herpes drug on his ME/CFS patients. "A herpes drug may make energy soar for Chronic Fatigue Syndrome patients," read one headline. It sounded like we 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, may also get our hopes up far higher than they ever should.
Friday, September 14, 2007
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.
Thursday, September 06, 2007
Um, ya think?
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.
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.
Friday, May 11, 2007
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
Friday, December 29, 2006
I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.
So then, why do I feel like crying?
A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.
No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.
Who encouraged Saddam to invade Iran in 1980, which was the greatest war crime he has committed for it led to the deaths of a million and a half souls? And who sold him the components for the chemical weapons with which he drenched Iran and the Kurds? We did. No wonder the Americans, who controlled Saddam's weird trial, forbad any mention of this, his most obscene atrocity, in the charges against him. Could he not have been handed over to the Iranians for sentencing for this massive war crime? Of course not. Because that would also expose our culpability.When Hussein was first found guilty back in November, Fisk asked "Have ever justice and hypocrisy been so obscenely joined?" Now that Saddam Hussein is dead, the justice part feels missing and I think it was the last sentence of his article today that explains why: "But we will have got away with it."
On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.
Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.
Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.
Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.
Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?
Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.
Saturday, May 13, 2006
Singing -- I used to sing all the time. In the shower. In the kitchen. Around the house. I even use to cantor at my parish. Just a couple of weeks ago, a woman from my parish mentioned in an e-mail to me that they miss my sweet singing voice. I miss it too. I still sing a little bit every now and then, but since it's so energy intensive, I don't sing nearly as much.
Dancing -- Sometimes when I'm feeling good I boogie a bit to Shakira or Amr Diab. But boy does it wear me out after a minute or two.
Going to church
Motherhood -- I always used to think that the term "biological clock" was a myth. At 33 years old, I'm appreciating that it's very real. And I'm starting to come to terms with the fact that I may very well never be able to bear children. First of all, there's my history of deep vein thrombosis and pulmonary embolism. And then hemorrhaging on the anti-coagulants. And then having to be hospitalized a second time for the pulmonary embolism. Even if I was healthy these would be serious barriers to safely giving birth to a baby. But add chronic illness to that, as well as the fact that each passing year I'm sick decreases my fertility, it looks very unlikely that I will be a mother.
Playing with my nieces and nephews
Reading and processing complex information (See "career" above.)
Riding a bike -- I have recurring dreams where I'm riding a bike. Symbol of being healthy I presume.
Friends -- It's not like any of my friends have stopped being my friend because of my illness. Indeed, for months after the surgery that ended in the DVT and PE, I had at least one visitor a day -- sometimes two -- for several months. It's just that, they all went on with their lives and I couldn't.
Gardening -- Hopefully at some point I'll get a nice little container garden going on my balcony.
Independence -- I depend on the government for my income. Meals on Wheels to cook for me. My caregiver to clean my apartment. My mom to drive me to the grocery story and anywhere else when I have the strength.
Privacy -- As a recipient of SSI, I had to provide all my bank statements to my case worker when I first signed on (after waiting 20-months to be approved for benefits). I'm required to keep all of my bank statements to provide to my case worker when my case is reviewed sometime this year. So, you know, don't wanna make any kinky purchases with my debit card.
Ability to earn a living
Ability to spend time with my boyfriend -- As a UK citizen, he's only allowed to be here for roughly six months (well, technically there are no specific rules but according to the State Department, you're not supposed to "abuse the rules"). If I were healthy enough to get on a plane, I could go and spend up to six months in the UK (and that is a definitive rule). Though because I'm on SSI, there are also limitations on how long I can be out of the country (no longer than 30 days or one calendar month -- I haven't gotten a definitive answer from Social Security).
Interacting with people I can see -- Yes, I chat with people online and if I had a web cam I suppose I could see them too. But it's not quite the same.
Getting out of the house on a regular basis
There are probably things I'm forgetting (what's new, right?). But it's a pretty sobering list nonetheless.
Sunday, March 19, 2006
Healer of my soul
Heal me at even
Heal me at morning
Heal me at noon
Healer of my soul
Keeper of my soul
On rough course faring
Help and safeguard my means this night
Keeper of my soul
There was an episode of the X-Files -- one of the later ones -- where the villain was this guy who would kill his victim by sucking the life out of them. He'd open his mouth and you could see this gaseous form, the person's spirit I presume, slowly come out through of the mouth of the victim and then suddenly they'd collapse dead.
That's what having CFIDS is like.
Yeah, I never die, though there are days when it feels like I will -- the Dying Days. Like someone is sucking the life out of me just like that guy from the X-Files. Like someone missed something somewhere and now I'm going to slip away.
It has happened. Casey Fero of Wisconsin, who had been diagnosed with CFIDS, died in his sleep last summer. The autopsy showed that he died of heart failure from a long-standing infection of unknown etiology. When I take into account that the high blood-pressure problem I started having last spring disappeared once I started taking doxycycline (an antibiotic), there are moments when I'm good and truly afraid.
The last few days have been the Dying Days. I tell myself I'm being incredibly hypochondriacal, which is the last thing I should be with an illness like this. But what if my fear of seeming hypochondriachal is keeping me from expressing to the doctor just how seriously ill I am?
Nightime feels particularly frightening. Normally when I have the Dying Days, I tell myself that yeah, I've felt it before. And I woke up the next morning. And I'll wake up tomorrow morning. And then I go to sleep. But every since this last fall after the experience with the doxycycline and the story about Casey, that no longer works to allay my fears.
Last night I found myself afraid to close my eyes. Insisting that nothing is going to suck my spirit out of me. Thinking of that old prayer: now I lay me down to sleep, I pray the Lord my soul to keep. And if I die before I wake, I pray the Lord my soul to take. Then I thought about a lot of the Orthodox morning prayers from St. Basil and other early Church Fathers in which there is some sort of thanksgiving for living through the night. Superstition may have played a part in that, but I think it also reflects what living was like before EKGs and MRIs and sophisticated lab tests. You never really knew if you had something that might kill you.
Again, sorta what it's like having CFIDS.
There are no blood tests to tell you if you have it or not. There's not a machine they can hook you up to that says there's something wrong with your heart (or is there?) or your brain (well, fMRIs do show that we process pain differently). We just have all these little signs here and there saying something is not quite right. And, of course, living on the inside of it you sure as hell know something is wrong.
I find that all I can do is simply acknowledge that I have no control over this situation. That worrying will not change whether I'm dying or not. I simply surrender my need to know. Focus on each moment I have right now, though at times even that is frustrating because, well, it's hard to live life to the fullest when you're laying flat in bed. But then, usually the assumption there is in doing stuff and while I suppose I need to work on the being -- whatever that may mean.
And maybe I should make sure my mom has A.'s email and phone number in the U.K.