Thursday, November 12, 2009

"You know the first thing I'm going to do when the curse is lifted? Eat a whole bushel of apples!" -- Captain Barbossa

True to form, now that the "curse" of UC has been lifted, I am enjoying crisp fall apples... yum (or should I say "Arrrrr!"). I have not yet eaten a whole bushel. But I'm working on it.

Well, I started the higher dose of steroids. So far, I still feel pretty lousy, but it's only been two days. I don't really feel like I'm getting any better from the kidney infection. I'm slightly less dizzy, but I've pretty much been in bed since Monday, so that's probably why. I didn't sleep well last night just from being uncomfortable and I've been having bad headaches, too. I'm getting a little stir-crazy, so I'm trying to do some homework, but I am too lightheaded and tired to work for long. The good thing is, I've still been able to eat well most days, which is still very exciting for me.

Other good thing: the doctor emailed me, and the plan is for more like nine weeks of steroids, not 13. That's a month less - yay! I will also follow up with my GI right before Thanksgiving, so he can tweak that plan as needed. On Tuesday, I follow up with my surgeon. Right now it seems I have more doctor's appointments than social engagements, which is so lame. Hopefully quite soon that ratio shall reverse. I do appreciate my doctors, but it has been complicated to be sick. I need a secretary. Or a case manager. Each doctor oversees something different, so none of them can look at the big picture.

Case in point - the story of this infection: I have an infection, so last Tuesday, I went to the doctor. Since I'm on steroids, which my GI doctor oversees, and the infection affects how those need to be dosed, he also needs to know. So I call the GI doctor, too, who ended up being out of the country, so I talk to another GI doctor. I got my lab results for the infection last Friday, so the Health Center told me to come in, but by this time my regular doctor was out of town, too, so I have to talk to ANOTHER doctor, who tells me to follow up with my regular doctor on Monday. But he tells me that I also have to contact my surgeon to let him know that I have an infection. On Monday, I go back to see my normal doctor, and he says, "You know, Hannah, you need to just pick one doctor and stick with them. Otherwise, it's dangerous - you get people prescribing you all kinds of stuff or you fall through the cracks."

Um, I know. You are preaching to the choir. What else am I supposed to do, though? I need a secretary, like I said. Sadly, this is far from an isolated incident - I've had to do this for the last few years. If you have a chronic illness or multi-system disease or problems, you understand how this goes. The PCP sends you to a specialist, who sends you to another specialist, and if you get the flu, you see the PCP, but he is afraid to treat you, because you're on all these meds he's never heard of. But your specialist doesn't treat the flu, and even if he did, you couldn't get in to see him for a month. Or if you have side effects from meds that the specialist prescribes that affect other body systems outside his specialty, he has no idea what to do, but your PCP won't touch you with a ten foot pole. Thankfully, I'm almost done with this! ;)

I'm having trouble today believing I'm going to be better. I am having so much less stomach pain than before surgery (although I'm starting to have a little - hopefully just from antibiotics) and eating is no longer associated with pain, which is fantastic. But my energy level is very low, I am having headaches every day, my body is hurting (hopefully just kidney infection and/or steroid stuff) and I just feel lousy. I know I'm just a few weeks out of surgery, fighting adrenal insufficiency and a bad infection, but I was hoping I'd be feeling like superwoman - running laps and saving the world and stuff - by now. And I'm not. Today I started to think about the last conversation I had with my GI doctor before surgery - about how this surgery was the right choice, but it might not fix everything. Maybe I'm just making this stuff up or exaggerating... maybe I'm just a bit of a paranoid hypochondriac. I don't know. But I know I don't feel quite right. So tomorrow, I'm going to pay a visit to the doctor just to make sure everything is okay. Hopefully I just need to give the steroids and antibiotics a little longer to kick in, but I'd rather get it checked out to be on the safe side.

In the meantime, I'll continue to crunch and munch on that bushel of apples.

Hannah ;)

No comments:

Post a Comment