Sunday, August 30, 2009

Found

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.


12 comments:

Casey Morgan said...

Wow. Among the many things this post makes crystal clear: the font of intelligence and insight that this single patient is, cloistered away from the rest of us...
I don't know how to celebrate Mass as you do, but I sure wish I lived nearby so I could come visit you in the week and celebrate Christian fellowship, at least.
Your courage and sensitivity and patience make me feel somehow less alone in this world.

Kerry said...

I don't have anything particularly useful to say, but your post touched me.

I'm an incredibly lucky CFS patient who has a supportive husband and pretty decent mobility. But it is still hard and must be so much harder for you.

I just wanted to let you know your post has been read and noticed.

Joanne said...

What avery interesting but sad post like so many with ME/CFS diagnosis left isolated from society and help.

I expect you have already considered the possibility of Lyme Disease, but are you aware of the presentation by Steven Phillips to IDSA review hearing showing seronegativity and persistent infection. Something dismissed by main stream medicine.
http://www.idsociety.org/Content.aspx?id=15026
Another interesting article
http://www.publichealthalert.org/Articles/scottforsgren/Dr%20Sam%20Shor.htm

I was diagnosed with ME/CFS until a chance course of Amoxicillin improved my arthritis/muscle weakness and led my GP to consider Lyme Disease as already several patients had been diagnosed in the early stages. I had been ill 4 years and now after her diagnosis was clinically confirmed by a specialist in UK I was treated following ILADS on long term antibiotics. I am now nearly 100% recovered and can enjoy life again.
If you want to read my story it is on the bottom right on my blog and at the top right are links into interesting research and information.
http://joanne-orangecottages.blogspot.com/

On tEurolyme a chat line 75% of people were previously diagnosed with ME/CFS before finding they actually had Lyme Disease.

Good luck in finding something that works for you.

Hege Renate said...

Hi

My name is Hege Renate and I am a ME sufferer from Norway.
I love your blog and are following it with RSS.
My blog is www.TiredofME.com and there you will find articles in both english and norwegian.

I would very much like you to follow my blog.

Hope to see you!

Cuphound said...

Michelle,

A very powerful post. Spectacular control of tone. I loved this:

> 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.

This expresses the nature of chronic fatigue beautifully. The fact that one has to be so tight-fisted with one's energy, that something basic, like a breakfast has to be measured and weighed and evaluated. This kind of poverty is something that healthy people simply cannot understand. The magazine breakfast is nice, but it's just not nice enough.

I recognize this type of thinking in my life.

I do hope that CFS has found its hero.

Michelle said...

Casey -- Thanks. Coming from such an intelligent and brilliant writer as yourself, I blush.

I don't really celebrate Mass as I have no Eucharist. Mostly I listen to the Divine Liturgy and chant a bit as I can with it, as well as chant as much as I can of the Paraklesis service, which is specifically for chanting in time of illness as well as during the first two weeks in August leading up the Feast of the Dormition.

I wish we lived closer too, not just for the spiritual companionship, but I think Casey and Natty would have fun together. :-)

Kerry -- Thanks. I do have a wonderfully supportive boyfriend who provides a lot of comfort on a daily basis, even if he is 8 times zones away, and I'm very grateful for it.

Joanne -- Yep, familiar with ILADS. Glad you found something that worked for you.

Hege -- Thanks. Hope to read your blog more in the future.

Talal -- Yes, I thought you'd pick up on that. I also like how my options on Saturday were among "watch a movie", "take a bath" or "check my email," but I could only do ONE of those, while most people would not only do all three, but about 5-10 other things in addition. Poverty indeed.

Even if Dr. Mikovits does nothing more than what she has already, she will still have moved ME/CFS research down the road by miles compared to the millimeters it's been progressing so far. I think in the next five years she will have completely changed the way this illness is not only viewed, but treated as well.

cinderkeys said...

This really got to me. Thanks for writing it.

Also, I know someone who will be VERY interested in the researcher's contact information.

Tink said...

Thank you Michelle for this excellent posting. You wrote what I so often feel and have no way of expressing. My house is my prison, I hardly ever leave it and like you if I do I watch the people and wonder if they know how lucky they are.
Life seems to pass me by and melancholy seems more and more to be my constant companion. I recognize so much of what you wrote and am grateful that you have shown me that through the melancholy something positive is still to be found. Thank you from a fellow Portland CFIDS/ME'r.

Dorian aka coffeesister _|_) said...

I too live in a world shaped by, if not limited to (tho' it can feel so), a studio apartment. By the grace of God, my significant other shares this wee world w/me thus, as small as it is, tis a full world as well.. ~_~

ME is at least one of the health issues it seems clear I'm dealing with yet I feel displaced from both the functional & the chronically ill as diagnosis, much less treatment, remains out of reach.

Seldom leaving this small space would've crushed my spirit if not for the interwebz. As Tink perfectly expressed, I constantly wonder if others have ANY idea just how lucky they are!? Ahh, the decadence of being able to "watch a movie," "take a bath" AND "check e-mail" as just the start of one's day when any one of those would would not only be the entirety of ours but a successful day to boot. ~_^

Living in financial poverty also, calling out our dearth of energy & options as poverty resonates but I can't help being frustrated by the double whammy. Of course, the riches I do have – of spirit – are by far the most enriching. ^_^

(|_|*cheers*|_|)
"The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind." ~G.K. Chesterton

Michelle said...

cinderkeys -- Thank you. And you're most welcome. Glad it resonated with you.

Tink -- Thanks. You seem to be articulating very well yourself just how hopeless this feels. Indeed I'd just read your comment yesterday before leaving to go get my INR checked. As my cab was stopped at the light, I watched people on Broadway and thought of your comment about do they "know how lucky they are?" No, of course they don't. You only know once it's gone.

Btw, I can't remember, but are you a member of our Portland CFIDS Association? At the moment it's only a Yahoo Group, but we'd love to have you if you're not a member yet. Email me at shadiah_us [at] yahoo [dot] com

Dorian - Great Chesterton quote. And yes, without the Internet, I really don't know how I would have made it this long. Seriously. I don't want to say I'd have slit my wrists, but it may well have come to something quite close.

sagesmoke said...

Hi Michelle: I have just discovered the world of ME/CFIDS/etc. blogs, and it is the best support I have..I'm alone, in Berkeley CA. (where Dorothy Wall lives: "Encounters With the Invisible" As far as I can tell, (I've been here a year) there are no support groups anywhere I could get to; I have no car, and bike when I can. I really thought No. CA. would be a much more supportive environment; but I'm too sick right now to really do any 'exploring', so I'm deeply thankful for the Internet and books. Even the Medical people I have to deal with know NOTHING about this! No more than they did in the early '80s when I first got sick.
Anyway, I was very moved by your blog...and felt a real deja vu...went digging in my old Journaling/writing box, and found a piece I wrote back in '97, titled;
"Dying in the Beautiful Pacific North West" when I was first trying to figure out what had happened to me..(I'm still trying to figure it out!)Some of your blog post really resonates, like this :
"
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)."
Here is what I wrote back then: "Something is preventing me from loving; from living, from 'being with' life...I am, in effect, cut off. I watch others enjoying life...like some voyeur, and am consumed with envy; no matter what they are doing..playing frisbee, riding a bike, walking their dog, laughing, drinking a latte"
Since 1980 I have had spaces of time where I thought I was getting better, and then something, usually a move, triggered a relapse. The move here, one year ago, was the one of the worst of my many-moves life. I am still sick from it.
I accept now that I will always have this; but feel I have a community online at least. I take care of myself the best I can, and am greatly aided by wonderful blogs such as your; We must always "Keep it Real" It's a great Power. Keep blogging and living and helping us all! Sage

Regan said...

Hi Michelle--I'm a 34-year old woman with CFIDS, and like you, I suffered from mysterious bouts of abdominal pain for years. Sometimes it turned out to be a UTI, sometimes an ovarian cyst (I've had 5 ruptured ones), sometimes they diagnosed it as a virus. I was also diagnosed with a tiny implant of endometriosis (on the opposite side of the pain though, and I'm since in remission). But often, they would do an emergency workup (it was right in the spot for appendicitis, and got worse with pressure)-- and come up with nothing.

The reason I'm telling you this is because a little over a year ago, I think I found an answer. I started wondering if it could be muscular, and asked my doctor about it. She said if it was, there was nothing they could do. BUT I used to work for a chiropractor, and I asked her about it. She said that my psoas muscle on the right side seemed to be having problems, and told me to see a therapeutic massage therapist. She said that my right psoas muscle was actually tightened all along it's length, and was so inflamed it was actually puffy and swollen! She massaged it and did some trigger point work--and got it to relax and the pain to go away!! It only took two massages and some at home stretching exercises (like swing your hips a certain way)

I know abdominal pain can have many different causes, and I certainly don't want to contradict your doc. BUT I know they've found that CFIDS women can have problems with the muscles in the pelvic floor, and I wondered if they've considered that as a possibility.

Best wishes and good luck--
Regan