Monday, June 9, 2008

Finding a doctor

When you have a chronic disease, finding a doctor is really like dating.

I'm taking this breakup from my rheumatologist sort of hard. It's an amicable divorce, but there's unfinished business. I'm transferring custody of my damaged joints, my high cholesterol, my medication lists, my lack of hypocretin, my confused immune system to someone I have not met, simply because my husband has a new job in a new state.

I will arrive with notes, records, X rays. Please do good for me, I will say, holding them up to a first year fellow in a teaching hospital.

Where is the or EHarmony for rheumatologists? I want to be matched on 22 levels of compatibility too. I want to know how this person feels about biologics, about prednisone, about whether or not he/she can prescribe provigil or if I have to find a neurologist too.

My relationships with rheumatologists has been a sordid history, full of high hopes and expectations and sometimes tears.

First, there was the internist, not really a rheumatologist, just the best we had nearby. He explained nothing to me, just kept giving me more and more disalcid until I couldn't walk, had an ulcer, and fainted in the shower on mornings. I remember my family doctor, the man who delivered me, seeing me about 3 months after he'd referred me. He was angry at how sick I was. He called a colleague in Kansas City, 2 hours away.

I limped into Dr. Layle's office.
He is the first of two doctors to have saved me. He looked at me, 16, 102 lbs, walking with "a pronounced waddle" according his letter, and started me that day on DMARDs. He also gave me a big ol' steroid shot, warning me that it would make me temporarily feel better, but not to over do it. I awoke the next day without pain, for the first time in months. I thought I was cured.

Every 1 - 6 months, all through college, I went to see Dr. Layle. I didn't drive at the time, so sometimes I went with friends, sometimes with my mom. My mom and I would laugh at the face he'd make when I told him about another crazy plan I had. Was it okay to take martial arts? "Lesleeeeee...." he'd grimace. What about getting my nose pierced? Was there a risk of infection? What about drinking beer on my 21st birthday? Could I do that with methotrexate? "Lesleeeeee....."

I left for AmeriCorps NCCC, 10 months of running, trailbuilding, sleeping in tents.
"Lesleeeeeee....." He retired to fight the managed care system, he said. He saw what was coming.

I saw his colleague through my AmeriCorps year. She returned to her hometown. By that time, there was a rheumatologist closer to home, so when I returned home, I saw him.

He wasn't bad but not great either. We maintained. We dated causally, if you will. Prednisone came into my life then on a regular basis. He did not worry about the side effects, although I should have. My time spent asleep, my weight levels, and other metabolic changes were sneaking up on me, although I wasn't alarmed. Didn't I run a marathon? Didn't I just do AmeriCorps? I was young and healthy.

Time to take on grad school. The first doctor I saw here charged me $800 for the initial visit. I was shocked. He never really talked to me, only got angry when I didn't do my labs. I totally understood that, I needed to do my labs, but I wanted to talk, to help figure out what was going on. He had 15 minutes scheduled per patient and damn if I was going to throw him off. I wanted a relationship, he wanted a hook-up.

To be fair, he was the first to think my sleep was not normal and suggested fibromyalgia. I spent my first years of grad school in a terrible muscle-relaxer induced haze. I thought it was fibro-fog. It was med-fog.

I finally was fed up with $800 for 15 minutes and taking 30 minutes to remember to put on my shoes in the morning.

I found my current rheumatologist, Dr. Sattia. We sometimes do not agree on things, although we both agree that I probably don't have fibromyalgia. When my sleep reached a crisis level and I was sobbing in his office to please help me, he said that my lab work was fine, so I should not be sleepy. He did not want to deal outside of his specialty area, he had told me that from the beginning, but I couldn't figure out what the hell was making me so tired. That was hard to forgive. Also was the two months spent in Europe where I walked all over Galway, upset and in pain, trying to find a strange doctor's office to get the bloodwork I needed so that Sattia would let me have a refill of my prednisone. I swore at him up and down the streets of Galway, and I still swear my synovial cysts developed then. What was three more weeks without bloodwork? What kind of doctor withholds medicine from a patient overseas? But that stubborness also makes him a good doctor, so I grumble and do what I need to do. I know that I am better monitored now that I've been in my whole life. He lets me research and make the decisions.

The refusal to treat the sleepiness drove me to Dr. Brown and the sleep clinic, and the diagnosis of narcolepsy, and most importantly, those beautiful little provigils that give me my life back. Dr. Sattia could have given them to me, but I never would have known what was causing my sleepiness.

And I've had a pretty steady relationship with Sattia. I trust his judgement. He didn't panic at the COX-2 news, just said he'd seen the studies and thought that I would be fine at the dose that I was taking. When I called the on-call doctor at 3 am with vomiting and not being able to stand up, they called him and he called back, saying to go to the emergency room. That was the third middle of the night call and he always calls back.

We're both ready for me to start biologics again, but he doesn't want me to be far away if a reaction happens, so he's holding off on the humira.

So, um, that's my history. I never minded going to the doctor about my RA -- in fact, I've sort of liked those moments where I can sit and talk to someone about all of this that I manage pretty quietly every day.

And now, I start again.
Rheumatologist needed: Must be familiar with RA in young adults, enjoy good conversation, be cautiously aggressive with treatment. Must be willing to listen to consult, provide information, be a good partner but let patient make own decisions. Long walks on the beach are out at this point, unless you want to help me find a scooter.

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