When Doctors Give Up

My husband has been working a night shift for a couple of months now. I keep waking up, almost always at 2am. I turn over, see he's not there and get up to go find him. I'm halfway out the bedroom door putting on my bathrobe when I realize he's not in the house. It never ceases to amaze me, how ingrained behavior can be and how quickly habits form. Anyway, went to see the rheumatologist today. She's been my doctor for 10 years, 10 YEARS! It's astonishing. She's still skinny as a rail and looks like she's 20 years old. She one of the few women whose beauty doesn't make me want to run screaming from the room to find a gun. She's on a constant lookout for the newest biologic which is what I think they call drugs designed for a specific illness. After 10 years of battling lupus and RA we've pretty much run through the list. Prednisone continues to be the gold standard for me in terms of controlling the joint pain enough to keep me from screaming out loud and no that's is not an exaggeration. Unfortunately the prednisone has turned me into the African-American equivalent of a fat brown hamster. Remember how Jerry Lewis looked a few years ago when he was taking pred for an illness he had? That's me - moon face and all. So to get me off the pred we're going to try Cytoxan. I hear its a mean drug (i.e. nasty side effects) but I'm willing to give it a try if it gives me even a bit of my life back. Of course finding myself throwing up in a trashcan while losing my hair constitutes truly scary side effects. The trick to new meds is learning how to tolerate them physically until you figure out if they actually work for you. I take over 20 pills a day now so what's 2 more?

I never cease to be amazed at what human beings are willing to put up with in order to stay alive. When I was 20 years old, almost not fat, strong and determined to succeed at all costs I never, in my wildest imagination saw myself wearing adult diapers at night when I went to bed. Initially I was so humiliated I wore everything just short of blue jeans to bed so my husband wouldn't see the diaper. Two horrific didn't make it to the bathroom "accidents" later the secret was out. This extraordinary man saw me wearing a Depends, gave me a wolf whistle and said "I love you in those frilly panties baby." I cried. Now you KNOW there are men that would have run screaming from the house over finding their wife or girlfriend had traded silky negligees for a Depends diaper. But my baby found a way t compliment me. He's not just a keeper, he's an Angel and I'd be lost without him. At the moment I'd also be lost without Ramen noodles and hotdogs which is what I'm fixing to eat. I threw in a couple of eggs in to hard boil. So this constitutes an officially strange middle of the night meal. Since it seems like I may have something called a hiatial hernia I know this meal is a 50/50 shot. It may go down fine and let me sleep or it may do that regurg acid throat burning thing that shoots me straight up out of bed reaching for the nearest liquid, anything anything that I can drink to calm the burning down. This hernia thing may also be why I struggle to breath when I'm lying down. It means see another doctor, more tests, a scope down my throat while I'm awake but "uncomfortable." It really sucks.

OK so about doctors giving up, I've gone from being the patient a doctor can't wait to see (making jokes, high fiving, laughing in the face of pain) to the patient doctors don't want to see (I can't fix her, she's only getting worse and her quality of life is fading) so you begin to get the vibe. You can hear it in his or her voice - that inflection that hints at anything from boredom to pity. My rheumatologist (whose called a rheumie by insiders) said that doctor's are trained practically from day one to heal heal heal. To make the patient better and if they can't they get discouraged like any one else I guess. But when you're the patient looking in to that discouraged face its a whole different thing. It will make you more discouraged than the doctor feels. Anyway, the doctor who was working with me on pain control informed me we've moved to "maintenance." I stared at him and he stared back. Maintenance is a fancy way of saying "there's nothing else I can do for you so move along." Frankly I was kind of stunned but I realize now this kind of doctor behavior is much more common than I previously knew. I felt like I was hanging out there on my own wondering if I could get more pain meds. When you need pain meds you feel like a junkie trying to convince strangers you need a refill. I have no interest in getting high. I just want a break from the pain. Speaking of which, its 4:25am and I guess its time to throw in the towel and call it a night. I can never figure out whether the act of blogging is cathartic or self destructive. Its always a little scarey to put your life out there and risk being judged.