Thursday, June 4, 2009

Why Chronic Illness Sucks

Okay, well, all illness sucks, so we can just get that out of the way. But chronic illness sucks in its own way.

I've been feeling crappy for months. It was a bacterial infection, c-difficile. It was antibiotics making me nauseated and even more tired. The pain was scar tissue. I just tough it out.

I went to the doctor this morning because, although I thought the c-diff was gone, I've never quite gotten back to my pre-c-diff condition. While I was there, I told her about the pain. And she poked and prodded until she found a MUCH worse pain that isn't there unless you poke, but boy oh boy, does it ever hurt. She thinks I may still have c-diff. Or fat in my stool. Or something else. And maybe I have a hernia or some adhesions (scar tissue) or even a partial blockage. And that new pain -- it's right-sided pain, classic Crohn's disease.

So if I didn't already feel like crap, now I've been poked and prodded, had blood drawn after several tries at finding a vein, given stool samples, and been scheduled for a CT scan tomorrow. Of course, nobody has told me how I'm supposed to get and keep down the CT scan contrast despite pretty remarkable nausea, or whether I should drink it earlier because my stomach doesn't empty on a normal time frame.

And here I am again, in the grips of the medical vortex that will wear me out and wear me down before allowing me to continue on my way, feeling crappy and in pain because, as generally is the case, there's just not a whole lot anybody can do. Indeed, every time I push my doctors to figure out why I feel like crap, I end up feeling worse, not better. And exhaustion doesn't begin to describe how I feel.

I have done this dance with the medical profession for over thirty years. It's always the same. I live with my symptoms for as long as I can. Then I go to a doctor and it starts. Tests. Medicine. Surgery. More tests. More medicine. Until I give up for awhile and just hide from my doctors until I can't stand it any more, and then it starts all over again.

That is chronic illness. It never ends, and always starts all over again. And it sucks.

Is it my fault for wanting to feel better? I mean, if I'm going to the bathroom 10 times a day, shouldn't I tell some doctor? And if I'm in pain, should I just ignore it? What if it's something important -- g-d forbid a tumor or something that could be treated if caught early?

Still, it seems like, if I never went to the doctor, I might be better off. Because I really don't want to do this dance any more.

I thought about walking out of the doctor's office this morning when she was late and I was afraid of what was going to happen. I've thought about cancelling the CT scan several times today -- after all, I do pretty well know that they're going to see nothing, which means the pain is from scar tissue, which can only be remedied with surgery. I'm sort of surprised and a little concerned about the pain on the right that I didn't know I had until the doctor prodded, but I'm already on every single medication there is for Crohn's disease that I can take safely, so what would we do anyway? In the end, don't I end up having to suck it up?

I honestly don't know. I know I'm the one who's supposed to know -- after all, I talk to patients all day every day and try to help them participate in their own care management. If I talked to a patient who described my symptoms, I'd tell her to go to the doctor and push for answers. But then again, if I talked to a really experienced patient who said she's felt all this before, I'd probably recognize that her experience may be more valid than anything any doctor has to say.

Meanwhile, I'm in the clutches of the medical establishment once again. I will extricate myself as quickly as possible, but with the knowledge that this will not be the last time I do this dance. There will never be a last time until the last dance, and I'm not there yet.

I guess that's good.

But boy oh boy, does chronic illness suck or what? Jennifer


  1. Hey Jennifer, hope it goes well for you. Have you ever heard of LDN--lose dose naltrate?

    I got everything you posted. Feels like a lab rat sometimes and I usually retreat as long as possible and end up in the ER. I've tried to learn what I could so if it happens again, I can do something at home first. Doesn't usually work out though.


    Happy early birthday too!

  2. Hi, Rabbit. Nope, never heard of LDN. I'll look it up.

    Thanks for your kind support -- and the birthday wish! Jennifer

  3. Hi again, neither had the pharmacist! It's called Low Dose Naltrexone (LDN). I've been reading about it but the doctor won't prescribe it. There are options to that though.

    Happy Weekend!