This is Why I Hate Doctors

If hope is a thing with feathers, despair is a thing with teeth. I was gazing at the fall finery one afternoon, when despair got a grip on me.

I am never going to get better. I had actually realized this before, though I'm not sure where. It might have been in the ER during the five hour wait to be seen, or in the small, dark hospital room with the neurology resident.

In any case, surely it is true.

My sister is the best gift giver in the family, partly out of excellent instincts and partly out of wealth, working as an investigator for the federal government. Again, she asked me what sort of gifts I would like for Christmas. And again, I ended up with things like duvet covers, a new alarm clock, luxe pajamas. My life has become so narrow, lopped off and cauterized a dozen times till only a stump remains. Somewhere behind me is the bulk of my life.

Now I'm pretty sure my neck has become unstable, as a result of muscle wasting from my untreated GI issues. I've had a headache for three weeks and episodes of leg weakness so profound I can't stand up. I've also had choking spells where it feels like my windpipe is closing.

What frightens me most is that the sicker I get, the more my doctors edge away from me. None of them seem to feel any sort of "commitment." When my legs were so weak I couldn't walk without falling I went to the ER. They didn't want to admit me because the neurology resident said it was "just your joints." My father had to argue with them that he couldn't take care of me.

Once in, the MRI of my head and neck were okay, so they discharged me with a prescription for muscle relaxants without even waiting to see if they would help. It's not legal to discharge someone who can't take care of themselves properly, so first they gave me a walker.

All the while, they kept implying that there was nothing really wrong with me, asking questions like, "Do you have any hobbies?" and "Why aren't you working?" One resident asked me, "Why don't you want to go home? Are you being abused at home?"

"I can't walk!" I exploded. I must have fallen six times in the hospital, because the doctors were never fast enough to catch me when they asked me to walk for them. I still have the bruise on my hip.

It got so tiring having to stand up for myself in the face of such behavior. Everything was getting to me: the lack of pain management (ice packs and tylenol) the ignorance of EDS and the refusal to take instruction, and worst of all, the attitude of crushing indifference.

Rather than a patient, I felt more like a fly that refused to land so it could be swatted.

The Dilemma

I spent yesterday morning scrubbing tape residue off my body with rubbing alcohol, being tender around the spots where the tape had ripped my skin when it came off.

The area where the central line went in is itching ferociously which is good; it's healing. This is (was) my central line. Her name is Terri. She needed a name because it was like having an alien in my chest. An alien who made me cough whenever I breathed too deeply and who poked me in the lung on the way in.

My hair has to wait to get washed because my shoulders hurt too badly and I'm just too damn tired to go through the ordeal of wash and condition and de-tangle and deep condition and rinse and de-tangle and leave-in condition then twist and pin.

Everything hurts. I lost much of my muscle with that ten pounds and now my joints are all over the place. I even made an appointment with pain management–reluctantly.The last time I went I got a prescription, but as I turned to leave, my doctor said, "remember you can't smoke any weed with this prescription." It was beyond insulting.

As far as my nausea goes, it's still here and Zofran only takes the edge off. The strange thing is that it goes almost totally away when I'm not physically active, and surges back when I am. The more active I am, the worse it is (has anyone dealt with this before? Does anyone know why this is?) This means that the doctors can't observe it while I am in the hospital, which is really, really frustrating.

It's like a part-time gastroparesis or something. When I went Christmas shopping with my mother in Columbus we walked for hours, and I was popping Zofran all the way, even though I hadn't had anything to drink besides coffee. I couldn't eat at all that day and at one point it got so bad I just went to car and lay down in the back seat. Yet the next day, I was able to eat almost normally.

So I need...what? A neurologist specializing in migraine? Or a GI doctor specializing in motility disorder? And do I go with the hospital system that has the better and more experienced doctors, but only so-so hospital care (where they play keep-away with my pain medication every single time.) Do I go with the system where the doctor aren't experts but the hospital care is great and the doctors and nurses are always willing to listen to my explanation of EDS?

I'm tempted to go with the latter. My horrific experiences in bad hospitals in Chicago and Cleveland left me with PTSD, nightmares and flashbacks brought on by something as innocuous as seeing a medical drama on TV. Just being in a hospital is in itself a highly traumatic experience and I don't want to make it worse by adding doctors and nurses who are being sly by keeping my pain medicine away from me while at the same time acting as if they've done nothing wrong.

This sucks. I haven't been this sick in awhile....

"Hope makes torture possible."

"You rely too much on yourself," my father said, in rare moment of emotional frankness. I admit to being very disappointed at the showing 'myself' has made these past six months.

Despite pushing for a diagnosis and throwing myself headlong into the recommended treatment I've just been going downhill. More pain, more subluxations, more fatigue and most recently, the return of my seizures.

'Myself' gets an F for failing to secure a job in a timely fashion. I called my mother crying, saying I felt like a failure, I hated this, bloo-blah, bloo-blah, as my younger sister would say.

I got really sick during the heat wave. I started getting nauseated after every meal. Then I was nauseated constantly...I couldn't eat anything. I was so exhausted I had to force myself to do everything, and the exhaustion was compounded by the fact that I wasn't eating anything!

Along with not eating enough came dehydration and finally the return of my least favorite symptom: the seizures. No one knows why I get them, although every doctor has a pet theory. Thankfully, most of my doctors agree they aren't psychosomatic. But we know they aren't epileptic. Unfortunately, they are indistiguishable from a grand mal seizure.

The night I asked my sister to take me to ER I sat slumped in the waiting seizing and passing out, over and over and over again. My sister was in tears. Even other people in the waiting room went up to the desk and said, "Um...that girl just had another seizure."

Because typically, people attend to people having seizures. At first two nurses came running out. My sister told them the only thing she knew; they weren't epileptic. "If they aren't epileptic, what are they?" one nurse asked. "I don't know," my sister said helplessly.

That was the end of their interest. A half-hour later I got a room. Both my shoulders were subluxed, but I was in no shape to fix them. I was completely out of it.

All I know is the next morning, a doctor informed me that since I wasn't dehydrated, I didn't need to be in the hospital. And since I didn't need to be in the hospital, I had no choice but to walk home in my pajamas. I was sweaty, I was stinky, my hair was mussed and it was hot. My sister had left for Virginia that morning.

I walked straight home and spent the next two days dealing with my nausea and seizures the best way I knew how.

By pulling my trash can close to the side of my bed and crying hysterically.

Things are going to be different now. Really. No amount of wishing is going to change anything. It's not something I can avert just by trying harder.

It's not like piano practice or studying Japanese or squeaking through in trigonometry in high school and macroeconomics in undergrad.

"Shit happens," is what my father usually says. "Shit is what happens to other people," I usually say back.

When the anti-nausea medicine wasn't covered by my insurance, I bought a two liter bottle of ginger ale, just like my mother would get for me when I picked up some bug in elementary school.

I need to make a decision about staying in Philadelphia or not staying.
I need to make it quickly. Quickly, quickly. I really can't think of a job I can do right now.

(Who's running this show?)

At my last appointment, my physiatrist explained that the muscles in my hand are weak because the wrists aren't stable. "Good," I said. 'Good,' as in, 'it's not a nerve damage issue.'

I drop a bottle of soy sauce. Glass goes everywhere. I drop a bottle of vinegar. Glass goes everywhere.

(How do I stop this terrifying slide?)

I take half of a pill and curl up with my heating pad in front of the TV.

Hating 'myself.'

One Small Update

The recent heat wave that rolled over the East Coast was not kind to me. I thought I had gotten away with going out on one of the 100 degree+ days, but the next night I was in ER getting fluids. Suffice it to say it was one of the more unpleasant trips I've had and it culminated with me having to walk home in my pajamas in the same heat that had sickened me in the first place. Boo. I was instructed to follow-up with neurology as a result, but I really don't think anything will come of it.

In the soon to be spring

I feel confident I'll see buds on the trees soon.

Yesterday, I saw crocuses and tulips springing up. It was clear, warm and beautiful...I could see clear out to the lake which spanned the entire north horizon.

Watching the line of water made me feel quiet and a little sad. I'd gone with my apartment back in Chicago in part because of the roof deck which afforded a beautiful view of both Lake Michigan and the skyline of downtown Chicago. At night it was dizzying, a swirl of amber and white lights. It made me feel hopeful and confident.

The water on the other hand, seems to whisper of human limitations. Today, I felt that same feeling watching the distant line of Lake Erie. Poets Matthew Arnold and Lord Tennyson both associate melancholy with the open water. Arnold in Dover Beach and Tennyson in Break, Break, Break.

Before I got diagnosed with Ehlers-Danlos Syndrome, back when I only suspected, I read an excellent blog entry about how the diagnosed patient with EDS wasn't in a terribly different position than the undiagnosed patient. After this latest hospitalization, I can't help but agree. Even with the diagnosis known, they still refused to treat my pain with anything other than over the counter drugs. I was insulted, frustrated and in a lot of pain.

Yesterday I was watching the lake from the top level of the parking garage at my neurologist's appointment. He said, "It seems that they don't understand this disease...I mean, this is what you have."

I said, "They don't understand it. And they don't want to listen to me try to explain it either."

I always thought that if I could figure out the diagnosis, then I wouldn't have to suffer in pain anymore. This was apparently just wishful thinking. Or, I thought it was understood that EDS causes pain, but in the hospital the nurses treated me as if I were faking it.

So watching the impassive blue span of water made me feel more melancholy than usual.

The question is, do I risk offending the one and only rheumatologist who I know is familiar with EDS in pursuit of adequate pain treatment?

I think it's worth it. The entry I read said that patients with EDS who had been diagnosed received better care not because it was offered, but because they now had the confidence to demand it.

Tomorrow, a-demanding I go.

In Search of the New Normal

The new normal hangs above me like a sky threatening rain. If I accept this I ask, what am I accepting? I learned the extent of the damage done to my autonomic nervous system. I learned that I had Ehlers-Danlos Syndrome. I learned it, I believed it. I accept it in a way and in a way, I don't. With every hospitalization I learn more concretely that there's just nothing anyone can really do.

And I know this. But every time I get out of the hospital, I know it that much more.

"Do you know what Ehlers-Danlos is?" I ask the resident. "Yes," she says, but then wonders aloud why I have three pain medications. Then I hear her explain EDS to my nurse as a "connective tissue disease where they can stretch their joints and their skin..." As if it were some kind of joke or game. Perhaps that's why, after this hospitalization, their brilliant plan to put an end to my stomach problems was for me to stop taking my pain medicine.

I can't do that, so I'm back to square one.

At a fairly young age I'm experiencing the kind of infirmity that is usually reserved for people much older. My parents, nearing retirement age, can walk farther and faster than me. I can't run or climb stairs very well. And these things...probably won't change. Unless it's to get worse.

Let the record show that I suck at "getting over it" and hold grudges indefinitely. Which served me fine when the worst thing in my life was Starbucks being out of melon syrup, but this has served me less well when confronted with incurable (and by-and-large untreatable) illness(es).

Truthfully speaking, I'm living in the 'new normal' right now but just haven't processed it yet. I still haven't grasped that if I jump straight out of bed after waking up in the morning, I will pass out. I haven't grasped that if I decide to relive my glory days and go running, I will be in agony that same night. No wait, I take it back, I have grasped that. I just don't care.

I would love if EDS weren't so rare that there were flesh & blood support groups for it. Not to denigrate online ones, but it's online...medium is the message...not the same *cough* When my nutritionist mentioned that she'd just treated a girl with EDS a few weeks ago, I found myself wanting to know who she was.

Because I look young many of my friends are younger than me. Not by much, but enough that I'm sure they get tired of hearing my tales of woe. And to be honest, I feel sad seeing my friends living the life I used to live.

It's as if I fell off the back of a fast-moving train and am still lying in crumpled heap on the ground wondering what the hell happened.