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.

overload & maintenance

I think I just OD'd on vitamins.
I was taking 1 tbsp of the Tropical Oasis liquid multi-vitamin, but went through it all. No adverse effects from that. So, I thought I'd try a different, more potent one that I've seen recommended. It was Alive! Whole Food Energizer. It said to take 2 tbsp, preferably with food. Well, I did....it took 30 seconds for me to break out into a sweat, feel like I had knives in my stomach, and to sink to the floor. A minute later, I had diarrhea. Nice, I know, but true. I laid on the floor of the bathroom for some time after before I felt able to move. I still don't feel good. Sick to my stomach, headache. I don't know if it's interacting with the cisapride, or I just can't handle that dosage. I'll try a 1/2 tbsp maybe, mixed in something, tomorrow. Anyone out there have this reaction to that vitamin?

As far as the Cisapride goes though, it seems to be working. I've gained 2 lbs, and need to start working out again. ;} heheh. I know it's ridiculous, but the no drinking thing is bothersome. Not that I need alcohol, but...well, it's the red wine I miss. I enjoy a small glass maybe once a week, and now I can't even do that. Ah well. Food or wine, I suppose. I'm going to inquire about this at my Dr visit on Monday.

Another fun development though. I've been having some pretty grand back/hip pain the past two weeks. The chiropractor tells me it could be coming out in full force due to the recent weight loss. I've always had bad shoulders and a nagging pain in my lower right back that would occasionally show up, but this has been rather constant. Doc also said that sometimes all this body karma catches up with you at once. Yeah, you said it.

As far as the GP goes though, with the Cisapride, I've been much better. I would recommend it to anyone who has a strong heart and low blood pressure. It took awhile to get it, and I have to go back fairly regularly for EKGs and blood work, but it's worth that just to be able to eat solid food on a regular basis and eat (slightly) more than a fist-sized portion of food at a time.

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.

Case of the Mondays

And some severe bloatage. I get so tired and depressed when this happens. How many hours have I lost. I'm sitting here, trying to make myself work, but all I want to do is lie down.

On the fly....

So, not to bring up an un-related issue here, but this past weekend I had another extremely painful ovarian cyst and ended up going to the ER. I hyperventilated too, which I've never done. I was on the floor, no one was home, so I ended up making it worse by freaking out. Hands and legs went numb and stiff, then my mouth. I tried yelling and no one could hear. Finally I just gave up and it started to fade. It was actually rather terrifying. But, I was relieved to find out it wasn't a seizure or anything like that. So, yeah, doc wants to do surgery in May. And of course, I'm worried about the pain meds. I'm guessing there has to be some liquid form.

This week has seen the return of liquids and pureed foods. I try and do some solids at night, but because I've been sick with a head cold, I don't really feel like eating anyway. Whoopee.

Going to the beach this weekend and by god, even if I have to drink Ensure the whole time, I'm going to have a good time.

stop while you're ahead

So, this week has seen improvements in the return of solid food. I recently learned I'm actually NOT lactose-intolerant so that's opened up whole new worlds (hello orange creamsicles!). Good news, good news. But, I find myself hyper-sensitive to every feeling in my stomach and esophagus, a little gun-shy if you will. I think, "Oh no, is this it, the beginning of a Very Bad Evening?" I got so excited about the solid food for dinner tonight I think I overdid it. I forget that just because I can eat solids again, doesn't mean I can eat a "normal" portion. I'm hoping the sickness stays away until bedtime. Or, I could just use it as an excuse to NOT do my taxes. ;)

With all of that, sometimes it's the understanding, or not understanding, of others that gets to me. My co-workers (most of them) know the issue, but don't really get it. I fear they think I'm exaggerating or making it up because they see me eat certain things sometimes. But, I feel like I have to test the waters every so often, even if it means getting sick later. That said, I'm worried that the next meal will be the beginning of another bad spell.

For anyone reading this, do you have these fluctuations? And do you feel stress has greatly contributed to them? I'm finding liquid is now more intolerable (right now) than solid, maybe because I feel that it shouldn't be a problem and I drink too much? The happy medium is constantly in flux.

Weekend, +1

Relatively comfortable weekend (barring the sore throat). I feel like I tolerated more food than I have in the past couple weeks, but I'm not sure any more what is enough. My proportions on portions are skewed. Did have solid food at least twice a day though, so that's definitely good. Still had to buy smaller jeans and size S tops. My rings will NOT stay on my fingers.
Because of this weekend though, I felt like I could eat more today and I fear that may not be the case. It's 4:30 and I feel intensely bloated, very tired. No backing up yet. Will wait a few hours, since it generally takes at least a couple to figure out the real damage done.

alright then

Just shook my hand and my ring flew off.

20 lbs lost. Probably half due to working out before things got worse, 10 to not being able to eat enough. It's just rapid and that is worrisome.

Give me cheese, or give me death.

Amblyopia, Gastroparesis, Costochondritis, mid-cycle ovarian cysts, and mild asthma. But, as of today (test results), not lactose intolerant! Woot!

Sometimes I am weak for the meats.

Wow, this really will be a daily thing. Maybe it will help me, someone, anyone.

Kept it liquids today with mild discomfort. The heart thing seems to be getting slightly worse. I ran through the parking lot in the rain and when I got to the elevator, it felt odd, slightly painful. It passed. Meh.

Caved. Just had couple spoonfuls of mashed potatoes and gravy and a half a turkey burger. I can feel it starting. This is going to hurt, but I really wanted some real food. I think I may go to bed early anyway.

What fresh hell is this

I was fine, more than fine, doing really well today. So well it made me think I was getting better. That is not so. I feel awful. It's starting to be painful and the more I worry, the worse it gets so I'm writing so I don't worry. This morning I had about a 1/4 c. banana (infant) "oatmeal". It was mostly liquid. Feeling great when I woke up. Started drinking soy mocha at around 10am, never finished. Maybe 3/4 of it, 1/2? Still fine. 1/2 c. ginger-carrot soup for lunch at 1:30pm. Felt fine after that too. All was well and I was in a pretty good mood, getting things done for a change. About 4pm I had one of those small snack packs of Cheez-its, was careful to chew up very well and no.....just no. I've been nauseous, doubled-over, feeling of air pocket ever since about 5pm. I've noticed it takes about an hour for it to hit. I so hate this, this utter waste of time. How many hours, days have I lost?

And I feel like I even look sick now. I hate feeling my bones, the paleness has always been there really. It's not summer yet, even here. But it's a different quality, an unhealthy quality.
I can't eat anything else tonight. I'm scared to even drink water. The thought makes me want to throw up.

Someday you'll pick up these little zeroes and ones, these little virtual artifacts, quiet and unassuming, and you'll understand. Why I couldn't say anything. And would you have believed me anyway.

3.14

Today has been a good day so far.
Went to Whole Paycheck and picked up some soy protein/vitamin powder because I think the pill vitamins have been stacking in my stomach and making me feel worse. Also some other baby foods and some banana baby oatmeal. Gotta have variety.

No intense bloating, nausea, or discomfort yet today, making me think things are not so bad. Had applesauce for breakfast, a cookie(!) later, and just had about two small scoops of mashed potatoes and gravy. Have been sipping iced coffee with protein/vitamin powder in it for the last few hours. Dinner will be indulging in half a turkey burger because dammit, I need some meat.

There is definitely something to the stress connection. The worse I feel mentally, the worse I feel physically. I realize this is a "duh" statement, but it makes me think that maybe there's an ulcer making it worse?

Last night, I went to dinner with my friends and watched them eat some ridiculously delicious food. Man I wanted that beef brisket. The garlic soup was good though and I tolerated wine for a good part of the evening. I think there was an air bubble or something in my stomach, or at least that's what it felt like. It felt like air/food was just sitting in my esophagus. I made myself eat more than I thought was wise and that feeling passed, only to be replaced by mild bloating. But at this point, I'd take the bloating over the feeling like I'm going to hurl or constantly feel the need to burp. I will admit, I ate half of a brownie too. And it was totally worth it.

What's up, doc?

So, thanks to the internet, I'm now scared I have this. It's the heart palpitations that worry me, along with the "floaters", the fatigue and loss of focus I could chalk up to not eating enough. I mentioned the eye thing to the doc last week and he said I should see an eye doctor. Well, thanks. I may just call on Monday and mention the FLUTTERING OF A MAJOR ORGAN. Man I wish I trusted doctors more.

By way of introduction...

So, now that the crying jag (and subsequent puking) has passed, would you like some background?

Of course you would. I mean, who DOESN'T want to hear about other people's stomach trouble? I dare say no one, everyone? Wait....what?

A few months ago, I was diagnosed with gastroparesis. The earliest symptom I remember would have been Spring of 2006. At the time, it was simply intense bloating that passed after a few hours. Uncomfortable, but I thought it was either what I was eating, how fast, how much, something. I didn't have health insurance really since I was in college (returning student, I am now 32). It seemed to go away for a few months, and then return without warning. This past year, the symptoms have become worse. The evening bloating so painful and uncomfortable that I felt like I wanted to just unzip my stomach. By morning, it went back down. It got to the point that I just pretended I was pregnant to make myself feel better. But it was also increasingly interfering with my quality of life. When the bloating started, so did the fatigue and the shortness of breath. I felt disgusting.

So, I finally went to the doctor and we did the gastric emptying test. It took 4 1/2 hours for my stomach to empty. This seems to be mild-to-moderate gastroparesis. Some have it much worse. Unfortunately, it is now getting worse for me too.

Currently, I'm not able to tolerate solid food very well at all and even soup, broth, liquid, and baby food is becoming an issue. And honestly, I'm scared, scared and worried that it will just keep getting worse and I will have to have a feeding tube. The thought of anything non-organic in my body makes me sick. Literally. I was just on the verge of throwing up and foolishly looked up j-tube. Yeah, that did the trick.

I don't even want to talk about this. Not many people know how bad this is and I dread sounding like a whiner. So, that's what the internet is for, right? Who knows, maybe some other sufferer will take comfort in what will probably be a near-daily vacillation of highs and lows. This is really testing my resolve to be a more positive person, it really is. I'll admit that I'm kind of a sad sack sometimes. I think too much. But, when it comes down to brass tacks, I'm still siding for hope and idealism. There's a balance there that I'll probably constantly be searching for.

At ANY rate, I'm scheduled to start a clinical study for cisapride (scary drug) on April 20 and it can't come soon enough. Even then, it will probably take a couple months to get the actual medication. I tried Reglan, but it was terrible. Even 5mg doses (3x a day, then 1x) did me more harm than good. I was so tired and loopy that I could not function. I ended up crying in my room more than once during a work day simply because I hated feeling out-of-control. Me and drugs, we don't do well. But I have to hold out hope...even though cisapride has been known to cause death in patients who mix it with a long list of other meds and that scares the shit out of me. Of course, Reglan has its own issues now. Just look at all the lawsuits. And I know I only took it for a week, but I swear I'm seeing shit and my heart has started fluttering. Good god, I haven't told anyone that one. Maybe it's the fact that I'm taking in probably 400-600 calories a day, if I'm lucky. But, hey-hey, at least I'm losing weight.

And yeah, let's talk about that, because this affliction is more than just food and calories. It's fucking with my head. Food is everywhere and is required for most social activities. I feel like such a kill-joy. And yet, some of the people around me just don't get it. Don't bring in your delicious smelling Mexican food and A) ask me if I want some and B) eat it in front of me. And now I'm REALLY noticing just how large our portions are. A small is like an extra-large to me now. I'm supposed to take my friends out to dinner tomorrow night, just to use this gift certificate to a slightly-swank restaurant that I got months ago and I won't be able to enjoy most things on the menu. "Yeah, I'll have the soup....and could you put it in the smallest cup possible?" Dammit I miss food. And I didn't want to lose the weight this way. I was doing well exercising, but now I feel like I'm 17 again, starving myself. And yeah, I have a history of that too. I lost a lot of weight when I was younger by not eating, so yay for revisiting that. I'm scared this is not only going to starve me, but give me even more body issues, as well as the possibility of other afflictions/problems from not getting enough nutrition.