I’ve been under the weather for a couple of days. Just a cold, I think. But no fun. Then today I went to the gastroenterologist for my routine appointment- and have since spent the rest of the day in a weird fog. I ran around trying to get my new medicines and…er…daily procedure equipment? (if you really want to know…ask) and then ended up sitting and cutting squares for something I’m making for Camper’s for Christmas for an hour after dinner because I couldn’t get my body to do anything else. After he went to bed my brain finally turned back on and I managed to clean the floors and continue washing diapers (not before running out) and put away everything from the day.
And now on to posting.
SO, you might or might not know that I’ve been dealing with a whole huge random uncomfortable health concern for over a year now.
(Catch up here, from when I thought I caused my own problem, here when we were told a baby sheep caused my problem, and here when I passed out in the grocery store and we knew that niether I nor the baby sheep had anything to do with the problem. Wait a few months for my baby to be born because no one could figure out what was wrong with me while the baby was inside, get through a cross country move to have a non-helpful general practitioner told me it was emotional, only to be countered by a gastro who actually did a test and diagnosed me. And know we know that it’s indeterminate colitis (is it Chrohns, is it Ulcerative Colitis? We may never know….) that is kicking my butt. Still.)
I was fine for awhile on my whopping 12 pills of Asacol a day, until a few weeks ago. I called and asked (yes REQUESTED) to try Prednisone again before going to what I was told is “the next level of drugs.” But today I went to the doctor again, and even on 12 Asacols and 6 Prednisones a DAY…I’m still not good. Not good at all. So we added a new drug called Mercaptopur. Which I have not Googled at all because I just don’t want to know. I know three things. A) It is used for leukemia patients B) I can’t get pregnant or breastfeed while taking it and C) I have to have my blood tested weekly to make sure my liver doesn’t shut down or some other nonsense.
I can’t even TELL YOU how upset that makes me.
I know, I know. I’m lucky that there are drugs that can help me feel better (hopefully).
But the idea that I am NOT HEALTHY ENOUGH to be without this scary medication (or something bigger and scarier) and that I can’t get pregnant on it means that I can’t get pregnant. Not that we were planning on it, but the freedom was there. I could have. Now that freedom is gone. I need to get better, and in order to get better I have to take this drug. And that is that. Responsibility. No one wants a pregnancy like the last one. Remember when my Mom came to live with us for like… MONTHS because I wasn’t aloud to drive places on my own and didn’t have enough blood and glowed in the dark?
ARG.
And, just for instance, if I were to get on a plane and crash land on a desert island and I didn’t have these meds and these blood tests, I’d be SCREWED. Stupid night time television reminding me of my limits. Moving on.
On TOP of it, I found out why I’m not sleeping. The Prednisone, now nicknamed “pill from hell” has apparently raised my resting heart rate to somewhere around 100-120. The doctor said that I am to avoid exercise and stress, and just try to relax. The nurse said it’s like I’m exercising just sitting here. Writing this blog. No wonder I’ve been SO HUNGRY and SO TIRED and SO NOT SLEEPING. For WEEKS now I’ve slept so crappily, and if I heard even the SMALLEST noise I’d wake up with my heart pumping ready to GO GO GO. My mind has been RACING and my body can’t seem to keep up with it. Now I know why. The drugs have induced some kind of heart situation in which my body is running on overdrive- which obviously needs to stop soon. As soon as we can wean me off the Prednisone we will. But SERIOUSLY. (On the flip side, now I don’t have to worry that it was my OCD going all crazy. Nope, just a panic-causing drug. It’ll calm down when I get off of it.)
So to recap: I’m not better. Not even close. I get to take scary new drugs that mean that I can’t just have a baby an old time we feel like it, and I’ll regain a normal sleep pattern when I get off the juice. Meanwhile I just have to light some candles, endure the sympathy eyes from women at the WalMart pharmacy who were previously uber mean to me, and try to relax while my child is teething.
Check it. I finally broke down and bought a pill organizer for the 20 pills I take daily. Nothing says chronic like M-F AM PM plastic containers. Awesome.
