What a healthy person doesn't understand

There's a passage in the novel One Day in the Life of Ivan Denisovich in which the protagonist, a prisoner in a Siberian gulag, feels ill and goes to the dispensary to get out of work for that day. He is greeted by the literature student-cum-medical assistant who tells him that it's too late to try to get out of work. They only have two spots for sick people and those are given away the night before. When Denisovich insists that he really is sick, the medical assistant takes his temperature. But, alas, his temperature is only 99.2. If it had been 100, then he'd be exempt from work. As Denisovich leaves to face hard labor in the subzero weather, says to himself*:

How can you expect a man who's warm to understand a man who's cold?

That line was running through my head yesterday evening as I was dressing myself carefully and with excruciating pain after being discharged from a four hour stint in the emergency room. The back/pelvic pain that I've had for three years now hit an all time level of agony Wednesday night when it hurt to put any weight down on my right leg, much less stand or sit upright. From the base of my spine all the way along the right side to my hip, from my waist to the top of my butt was throbbing with white, burning hot.

My back hurt when I woke up on Wednesday, so I iced it and rested. When it kept getting worse, I tried heat instead. That felt a teeny, tiny bit better, but not enough to where I could walk. When it was still hurting yesterday, I decided that it was time to go to the hospital.

I tried to tell myself that it was probably going to be a pointless visit, though I might at least get some better pain medication. But when I got there and they were initially so nice and thoughtful (they gave me a shot of Dilaudid and a muscle relaxant as soon as possible), I thought maybe they were going to figure it out. Maybe this was something more than just the worst exacerbation of period pain ever.

But, of course, after some X-Rays (which hurt like a mo fo because it meant laying on my back on a hard table) and a urine sample and some blood work all came back normal, the doctor decided my problem was muscle strain, despite the fact that I did not injure myself ("well, you might have in your sleep"). Despite the fact that it was worse after I had done nothing but rest and ice all day the day before. Despite the fact that about the only things more painful than what I've been feeling the last two days has been the time my knee joint hemorrhaged on the anti-coagulants when I was post-operative almost nine years ago (it's like getting shot in the kneecap -- the paramedic said it looked like I had a soccer ball on my knee) and the blood clots in both lungs I had last year that swelled up so much they semi-obstructed my bowels. Hmm...actually, I think my pain the last two days has been pretty damn close to the later.

No, despite all my questioning of his diagnosis, he would have none of it. Muscle strain it was, though he did concede that perhaps my GP should do some further imaging. But not without the "you know, being overweight is hard on the back" talk (Really?? Despite being overweight since I was a toddler, I don't think I've ever heard that before! Why, let me just drop off all these hideous pounds -- I'm mean, I just keep them around for shits and giggles, don't you know?). The bastard did at least give me a prescription for Percocet (though I take oxycodone daily for pain already) and diazapam (Valium) because it's a better muscle relaxant than what I already take.

Muscle strain? I know what muscle strain is! It's what I'm feeling in my left leg and upper back as I've shifted all my weight there for the last two days.

On the actual discharge sheet he wrote that the diagnosis was sciatica. When the nurse was going over the discharge papers, she read the sciatica diagnosis and then added, "even though it doesn't act like normal sciatica." Well, if it doesn't act like normal sciatica, why the fuck call it that? I was crying profusely by this point, not just because of the pain, but because I was fucking pissed. And facing the prospect of my pain not ending anytime soon, except maybe once my period starts (3-4 days -- hopefully!). "I'm sorry you're in so much discomfort," she said.

And that was when I thought of my dear friend Ivan Densiovich. Except my version of his line would go something like, "how can you expect a man who's healthy to understand someone who's in pain?" Though "ill" could just as easily be substituted for "pain."

Once I got home (my mom drove me home and warmed up my Meals on Wheels -- even did the dishes as I lost my caregiver again and it will be another week or two before I get a new one) and had a chance to calm down a bit, I realized I should have never gotten my hopes up. And that technically I did get what I had hoped for: stronger pain meds. They are helping a little bit more, though not nearly as much as I wish they would.

Yet, I guess what annoyed the fuck out of me was the condescension of it all. It's one thing for him to say, "it's clear you're in a hell of a lot of pain, but I'm afraid I don't have a diagnosis at this point and whatever the problem is will be beyond what I can study here in the ER." I understand that. I know that the ER really doesn't figure out what's wrong but only what's not wrong. All they care about is that you're not going to die once you get home.

I'm a grown up, ya know? I just want to be treated like one by my doctor.

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*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.

Cousins among the medically oppressed

Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated

Stigma also played a part in denying mental patients treatment for physical illness. An Australian study found mental patients with heart disease were less than half as likely to receive surgery for their condition and were 80 per cent more likely to die from it than unaffected patients.
"We have missed these links [between mental and physical health]. Without them we fail to capture the full impact of mental illness," Professor Prince said.

Um, ya think?

Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people with ME/CFIDS because it will create "dependence." Or that people with ME/CFIDS do not have neuropathic pain, gastrointestinal symptoms, and chemical sensitivities. Because, you know, we're mentally ill, not physiologically. Seriously, I can't believe this is STILL going on but I read the linked article today, which deals with the discussions concerning the recent guidelines the British National Health Service (NHS) put together for physicians regarding ME/CFIDS. Grrr...

In an online group about ME/CFIDS that I read sometimes, someone posted a few months back about how even though our disease is not one of mental illness, the language a lot of us use regarding mental illness is often highly derogatory. Mental illness is very real, even if physicians use psychology to invalidate our suffering. I thought it was an important point. I don't want to be diagnosed with depression because it's incorrect, not because I dislike the diagnosis.

And how many of us have, say, heart disease but it's missed because doctors think we, like patients with mental illness, are just hysterical and need a bottle of Prozac and a shrink? Instead of pushing the mentally ill away as far as possible from us, we should be embracing them as our cousins among the medically oppressed.

The gifts of illness

It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick.

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.