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.

the return: an update

Things were going pretty good there for a few weeks, so that was nice. Tonight marks a vivid return to very small meals and mostly pureed/liquids. Does anyone else out there have trouble with Ensure? It's not so much anything in it as the consistency I think. I can't seem to drink a whole one all at once since I just get full and bloated almost immediately. The vitamin issue persists.

And because I thought I was doing ok, I had a multi-vitamin pill. I had eaten (mashed potatoes, pureed peas. woo!) so I figured it wouldn't sit in an almost empty stomach. Within 5-10 mins I was sick. Drinking ginger ale and trying not to move so I can keep it down.

I had surgery last week for what was supposed to be an ovarian cyst removal and turned out to be widespread endometriosis. After the pain went away, and I got a little vacation from work, I was feeling really good, positive, motivated. I thought it was the break that did it, but now I'm thinking it was the fact that I hadn't felt nauseous or incapacitated for a couple weeks. But I remember this, I remember not being able to do what I want to do, the painful manifestations, and trying not to throw up. Yes, I remember this.

Also, it has come to my attention that Idiopathic GP will no longer be acknowledged by Medicare for FY2011. While this doesn't directly affect me, it is indicative to the lack of understanding and care about people who suffer from this. And let's face it, should I ever lose my job and my health insurance and have to be on Medicaid, I would be screwed, pre-existing condition issue notwithstanding. I do plan on writing to Ms. Sebelius (I campaigned for her way back when I was in high school and she was running for Insurance Commissioner AND I've worked for Medicare) and any other representative and urge anyone reading this to do the same. It's bad enough that this is relatively untreatable, but to take away the right to even attempt to make it better is ridiculous.

"a. Unacceptable Principal Diagnosis Edit: Addition of Code for Gastroparesis
It has been brought to our attention that code 536.3 (Gastroparesis) has a “code
first underlying disease” note. This note indicates that code 536.3 should not be used as a
principal diagnosis. Therefore, code 536.3 should have been included on the list of
unacceptable principal diagnoses in the MCE. We agree that code 536.3 should have been included on the list of unacceptable principal diagnoses in the MCE. Therefore, for FY 2011, we intend to add code 536.3 to that list."

Found here: http://www.kslaw.com/Library/publication/HH042610_Rule.pdf

Contact your reps: http://www.usa.gov/Contact/Elected.shtml

the burping....

oh god, the burping.

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.

I apologize if anyone is offended by my language, but last night was goddamned awful. Yesterday I had a little applesauce for breakfast and a hot mocha. Lunch (late) was some pureed peas and curried-carrot-ginger soup. I was fine after all that. Then at about 5pm, I had a handful of Cheez-its and one slice of thin-sliced turkey. Rebel, I know. I felt moderately ok, so about an hour and a half later, I had the rest of the Cheez-its (one of those small, vending-size bags). Yeah, and I did have about 8oz of Pimm's and ginger ale. I was incapacitated for the rest of the night, just lying there trying desperately not to throw up. It also felt like a lot of air is trapped in my stomach. Ended up going to bed early. What else was I supposed to do? More lost time and it seems to be in a bad stage right now. Perfect, since I have company in town and I'll have to explain. She wants to take me out to dinner on Monday, ha.

Right now, I still feel nauseous, but I'm not sure if it's because I'm hungry, it's residual, it's an air pocket, or I'm making myself worry. I'm scared of eating but I'm hungry. Even when I'm nauseous, the hunger is still there. I'll just stick to liquids today and see how it goes. I have too much to do to lose time by being sick.

Liquid Diet Recommendation

So, liquids/pureed food is just how it's going to be for awhile. Luckily, I can have coffee still so all is not lost. I would truly be much more depressed if I had to cut coffee out.

For anyone out there with the same issue, I recommend this: http://www.amazinggrass.com/green-superfood-powder.html mixed with this: http://www.nakedjuice.com/#OurJuices/Background/MainMenu/Families/PureJuice/bottle1

Whole Paycheck (aka Whole Foods) carries both, and they also have a nifty little Blender Bottle for about $6.