#^$&@*!

The evening of May 26, 2011 is when it started. Now this is a full-blown flare-up. Not even the usual extreme and uncomfortable bloating, but pain. Not just the mild discomfort pain, but the pain where I can't move around. It feels like my entire mid-section is twisted and stuck with pins. It hurts in my back too and I can hear my stomach gurgling and have the occasional spasms. I didn't eat anything until 4pm today because I was scared. Even then, I had chicken tortilla soup with a very small slice of bread torn up and put in the soup (to make it more easily digestable) and a small amount of chocolate ice cream. I can't believe that did me in. I hate this. I hate going back to how it was before the pills. I wonder if I've built up a tolerance or if this is just a particularly bad Bad Time. I have all this food in the house and I can't eat it. I hate that. I'm hungry, but I'm scared of eating. I HATE LOSING TIME! This would happen on a three-day weekend.

Mark your calendars

May 15, right on schedule. Bad time ramped up. Exasperated, no doubt, by the fact that I ate without taking a pill. Ate at 4:30pm. Took an hour nap after that and from then on 'til early in the morning, my stomach (entire mid-section) hurt so bad I couldn't move. It subsided when I laid still, but getting up and doing things made it feel like someone took me by the shoulders and hips and just twisted with all their might, like a dishcloth being wrung out with force. The timing of these things over the past six months makes me think the flare ups are connected to my cycle.

Entering a Bad Time, as of last night. Don't really want to talk about it, but thought I should log it for future reference. Extremely bloated, nearing painful, nausea, burping. Ginger ale for dinner and even though I have so much to do, reading on the couch is in my future.

Real tired of this. Tired of lost time. Tired of it sneaking up on me, even with the meds. Wish I could make people understand without having to explain it. Feel like a whiner as it is.

Chicken or egg?

Does your stomach ever hurt so much that it radiates to other parts of your body? I can't tell if it started in my shoulder or my stomach, but both hurt so much I want to puke. Having hot cocoa for dinner. And this, on the day I had my 3-month Cisapride check-up (blood, EKG, dr visit) and reported that everything is going well. Yes, even with the "miracle drug", the fluctuations and Bad Times continue.

Update.

It's weird how it fluctuates. Even though the Cisapride makes it better, I still have good times and bad. I'd gained back 5lbs, luring me into a false sense of stability and then BAM. Yesterday marks the start of a Bad Time, just in time for Po-Boy Fest on Sunday. :( Even though I took a pill, after eating a small amount today, I had to fight to keep the food down. Right now I'm opting to lay down for a few hours after dinner in the hopes of being able to go to a concert tonight. I hate the downtime, but I get so tired.

AND....

Dating.
I'm doing more of it now and am finding it hard to figure out when to bring up the eating thing. I'm inclined to just put it out there, but I don't know if I should just see how "normal" I can make it before having to say something. I just don't want guys thinking I'm being "dainty" or that I don't enjoy a good bourbon. I do! I did. I might be able to again, on a good night, when I haven't eaten a lot that day, and I have my meds. Maybe. I hate planning all this out! I hate that when a guy asks me where I want to go, I have to consider it carefully. It's depressing.

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.