Friday, September 14, 2007

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.


*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.


Maggie said...

Hello there Michelle, just popped over from Cusp's blog.

You mention having blood clots on your lungs, I wondered if you had been tested for Hughes Syndrome? Also called Antiphospholipid Syndrome. (please note I am not a doctor but a fellow ME/CFS patient)

Here's a link to a recent article in the UK press:

Sorry to hear you had such a hard time at the hospital.

Best wishes from Liverpool

fluttertongue said...

I love that quotation at the beginning there. How many times I've wished to be able to do a body swap so that when an irritated and irritating doctor sighs at you to describe the pain you can just let him have a jolt to wake him up.
Also from Cusp and am an immediate fan.

Michelle said...

Heya Maggie! Welcome!

You know, I have been tested for both of those, along with a zillion other things with the 8 tubes of blood the hematologist took from me after the PE, as did my rhuematologist after the first PE back in 1998. But thanks for the tip!

Sorry to read you've been having a lot of loss to deal with lately. :-(

Hiya Fluttertongue! Welcome as well!

I've thought of that quote so so so many times when I've been with doctors who so clearly don't get it. And last Thursday was clearly one of those nights. Oh and I've so wanted to swap bodies with my doctor too. Just want him to feel it!

And I'm totally a fan of your blog too! Just read through the posts on the front page. What's your dissertation about?

Anonymous said...

when i read posts such as yours i feel shame for being a lucky bastard for whom cfs came (almost) without pain. i am a bad cfs model for the outside world. they think cfs is awful just because i have to spend so much time doing nothing at all, barely able to move. and it is awful, a little bit. but the pain you experience... gosh.

many hugs at this difficult time!

dangergirl said...

I stumbled across your blog and was moved by some of your stories. When I read this I wanted to scream "YES, someone understands." I was DX with chronic , degenerative nerve disease 8 years ago (33 but had symptoms for a few years before then). Needless to say my 30's sucked and were fille up with seeing doctors, physical therapy, meds, yada, yada. I could relate to so much and just wanted you to know that your words helped me feel less of a freak, less alone and brought some comfort. My neurologist is a woman and it is refreshing to be treated like an adult. Thanks for sharing in such an honest and genuine manner. That takes guts.

Michelle said...

Heya ama and dangergirl! Sorry I missed your comments.

Ama -- don't feel ashamed at all! There are a handful of ME/CFSers who don't have the pain and while I would never wish this pain on anyone, it doesn't make what you have live with any less crappy. Hugs. :-)

Dangergirl -- Ick! Nerve disease sounds dreadful (though I suppose on some level similar to ME/CFS -- indeed I think this particular incident in this post was more a nerve problem than a ME/CFS one). Yeah I'm in my 30s doing the PT, Dr. appts., meds, yada yada yada and it sucks shit. But I am glad you got some comfort from this post. I figured there were probably a lot of people living in pain out there who could relate to that feeling of being in horrible pain and the doctor just totally not getting it.

Thanks so much to both of you for stopping by and commenting!

Anonymous said...

I KNOW this pain as I am having it right now. Was up most of the night with massive lower back spasms that started yesterday afternoon and kept on going despite way too much Ultracet and Advil and another muscle drug (can't remember the name). Went on Utube at 3am to see what type of movements would help and then went to bed. Woke up again, did the rol, roll, roll over to get out of the bed with spasming in the back so bad I could vomit. So here I am, out of my mind exhuasted and in pain that hurt to even sit and pee. Nothing to be done about this and no idea why this started up. Just CFIDS and FM. I call this "Broke Back Syndrome". God does my lower back hurt to move, walk, lay, sit...