well....

It's been awhile, and that usually means that things are going well. They are, or were, until I started running out of my Cisapride pills. I'm supposed to get more this week, but I've had to cut the dosage in half to make them last this long. I just took my last one tonight and I can only hope that I can get more tomorrow. You really don't notice just how much they help until you don't have them.

I can feel the old feelings and symptoms of a few months ago coming back. It's funny how you forget these things, even think that "well, it wasn't that bad". But it was, is. The shortness of breath, the pain, the constant state of discomfort and feeling like you just want to unzip your belly, the fatigue, god, the fatigue. No vomiting. Hopefully I can put that off and get the pills soon. I barely ate today. Tomorrow I'm aiming for soft/liquid diet, just so I can get through the day and have enough energy to work on things after work.

And then you worry. Because I've had some odd symptoms recently (fairly extreme shortness of breath, twitching in the extremities), I wonder if they'll refill my pills (it's a clinical trial). I need those pills. It makes me want to cry that I need those pills and to be so dependent on them. I don't want to go back to the way it was. All this, with just the remote possibility of not getting them. It's a good thing I have this blog. I really don't want to whine/complain about this anymore out loud.

A quick update....more later

Yesterday, I only took 2 pills. I figured since I'm supposed to avoid red wine, I could have one hard liquor drink. It was mostly ginger ale. About midway through the show I was watching I started feeling that old feeling of painful bloating, wanting to unzip my stomach, and this time, just more pain. I thought maybe I hadn't eaten enough that day and the alcohol and cisapride weren't mixing well. Ah, and I also had one very small glass of white (blech) wine at the show. So, maybe it was the white wine that did it. At any rate, on the way home, we stopped and I got something small to eat (fries, heh). I took two ibuprofen when we got to my friend's house.

Let me just say that last night was the first time I've experienced a solid pain from this and I'm not sure if it was the pills, not enough pills, the wine. But it seemed to radiate through my torso....like when you're on your period and your entire body aches, this was magnified by....hmm, 10? It wasn't unbearable, just hurt. This morning, I still don't feel 100%.

So, yeah, no more alcohol at all. In case that was the problem. I don't think the endometriosis had anything to do with it. My back and shoulders still ache fairly badly. I'm hoping a day in the sun will revive my stupid body.

Cisapride: Day 1

Despite the scary warnings and the hoops you have to jump through to get it, so far this has been promising. I'm supposed to take one 30 mins before meals and then again at bedtime, but knowing how sensitive I am to pills, I've only taken one so far today. I'll take another at bedtime.

Even with one (10mg), I did notice that my heart was beating faster and that caused me some concern. I think it was because I only had a piece of toast and some coffee, but I'm not used to eating normally. I'm not even used to eating a lot of solid food. It may take some adjusting, but I don't think I'm going on a regular diet. I sort of like the small meals more frequently thing. The problem is the frequently part. Today I just kept forgetting to either take the pills with me or plan ahead for taking them. There was a lot of gurgling and hunger pains, so at least the pills seem to be working. By dinner I was famished and didn't want to wait 30 mins to eat.

So, yeah, so far so good. Don't think I can manage 4 pills in a day, so tomorrow we'll shoot for 3. Two during the day and one before bed. EKG on Tuesday to make sure the 'ol ticker is doing ok.

There are a few other side effects, but they seem to be beneficial. Cleared up the constipation, but maybe a little too much. We'll see how well tomorrow goes.

sicky mcsickerson

I'm finding that I'm getting sick a lot more. Usually, I rarely get the common colds and flu that seems to affect many around me. I like to chalk it up to copious amounts of OJ/vitamin C. But, since I'm not able to eat, and the acid in OJ is bad, so are pills, it seems lately it's been an issue. This is the second time in about 4-5 weeks that I've had a head cold. It's annoying, but also very draining. Just can't fight it like I used to.

Went in today for the initial meeting about the cisapride study. I almost didn't sign up. 19 pages of warnings and information, 5 of those pages being drug interaction warnings. It's kind of scary actually. Had an EKG and blood test, so we'll see if I'm ok to proceed. I can tell you right now that my hopes aren't that high simply because I've never, ever been good with medication. But, who knows. Gotta try something. Lost another 2 or 3 lbs.