Because I almost posted it on Facebook...

I had a good cry, some dry heaving (after a dinner where I threw caution to the wind, in my efforts to be a social animal), and wised up.  So I post it here, where no one will probably see it.  But it's out there, in the ether, and that's something.  Because besides the pain, nausea, and physical ailments, the psychological strain and loneliness from this is the worst.  But hey, at least it's not cancer, right:

"Feeling like crap 75% of the time will put you in a bad mood, make you depressed.  I feel like I'm constantly trying to explain and yet understanding is never found.  I feel whiny and insufferable, like a goddamn teenager, and I hate it.  I wish a stomach disorder on NO ONE, but I wish to god everyone knew what it feels like.  I am always, AL-WAYS, thinking about food, when to eat, what to eat, how much.  Everything is planned.  So much joy surrounding the breaking of bread, a social endeavor, is virtually gone.  Much more than just a "food coma", thank you.   I feel weak, and so tired. 

Fucking hell, I should probably join a support group."

Hooray!

I find it mildly, sadly, humorous that I feel six months pregnant nearly every day, yet I am now 35, completely single, with dwindling chances of ever actually being pregnant.

The cycle strikes again

So, I've been trying not to eat while I'm at work, because I just feel awful.  It's odd how food is like alcohol sometimes, in that I will PASS THE FUCK OUT after eating.  Seriously.  Just can't help falling asleep.  Not to mention the very uncomfortable bloating, and mild pain.

So, yeah, not eating at work, but then when I come home, I'm starving.  So, last night, knowing that I'm also on my cycle and feel the endometriosis is flaring up, AND I'm running out of medication (that's another story), I ate a small amount of rice and a mild veggie curry.  Most people, who god bless them, don't understand this disease, would say, "ohhh, it was the curry, wasn't it".  NO.  Look, I can eat spicy food, it's not IBS or acid reflux, or Crohn's or whatever.  Sometimes, usually around this time, it just gets really awful.  Right now, is that time.  So much pain last night, couldn't sleep.  Wanted a mid-sectionectomy, just remove my torso please.  Felt like a twisted mess with knives sticking in a few choice places.  Feel it coming on now, even though I've had tea today....ok, and a few pine nuts, but dammit, they're soft!

Also, what's with the back pain?  It's ramped up with my cycle, but lower back gets it bad sometimes.  I was reading about fasting and it seems that lumbago is fairly common when only taking in liquid.

Speaking of, I know I should be on a liquid diet right now, but I also hate wasting food and feel like I need to eat what's in my fridge.  I also know I shouldn't be eating so much, period.  It's time to go back to fist-sized portions, and mostly soft, liquid, or pureed foods.  I don't think I anticipated how hard it would be when working in a restaurant.   I'm just going to suck it up, eat only at home where I can lay very still afterwards, be completely (rather than mostly) anti-social, and bitch on here until it passes.  After that, it's time to be more strict, and hope my friends understand I'm not trying to be difficult or a downer when I have to plan everything out and need more notice before joining them for food, or when I decline to eat.  I hate thinking about food all the time, hate having to plan everything out, but at least I'll feel better physically, then perhaps mentally.
Huzzah!

Missing Mardi Gras

Annnnd, we're back.
Was doing good and then BAM, down for the count.  Monday evening, having not eaten anything all day, I took my pills, then ate a sandwich.  Said sandwich had bacon on it.  Usually, if I have bacon, I'll eat the meaty parts of two strips and then leave the fat.  Since this was most of the sandwich, and I'd taken my pills, I left everything intact.  I'm guessing this was the culprit since I woke up at 3am feeling massive nausea and pain.  I then proceeded to "evacuate" everything in my body, from top to bottom, until about 11am.  I gave up and just laid on the bathroom floor.  The whole time, I had pain contractions, always two in a row.  Usually, the pain is fairly constant and subsides if I lay still.  This time they came on randomly and very intense.

So, here I sit, having missed Mardi Gras (in New Orleans, mind you).  Costume was all ready, plan was set.  There's always next year, but yet again I'm wondering when this will subside.  I still cannot eat, even liquids are a problem.  Why does this happen randomly like this.  I'd thought it was tied to my cycle, but again, since I'm on the three month pill, I don't know if this is when my cycle would really be happening.  I just hope it goes away before my double-shift on Friday.

EDIT:  This was actually food poisoning.  Yay!

Hello again!

Not a very welcome hello, for when I post on here, you know it's back with a vengeance.
The flare-ups have to be tied to my cycle, which came a month early.  This 3-month birth control (on for Endometriosis) has me all out of whack.  I've been in pain and extremely bloated, after eating very little, for about a week now.  I'm hoping that it will go away in the next week.  But until then....

I'd almost forgotten what the bad times are like.  This is awful.  It's such an emotional affliction when it takes away from your ability to get anything done, when you REALLY have to get some things done.  Quality of life is in the toilet right now.  I shouldn't whine.  I know people have it worse.  But right now I'm dreading going home where they will worry, especially since I just quit my job (meaning: quit my health insurance).  Luckily, my gastro doc and the drug study nurse are going to keep seeing me.  Just need to find a way to get EKGs and labs paid for.  But I had to do it, that job was affecting my quality of life more than the GP...'til now.

I feel huge.  I feel pregnant.  It's hard to explain to my new co-workers and hard to hide.  I really hope this subsides soon.

list for doctor

currently, in addition to nausea, inability to eat/drink, and extreme bloating:

increased salivation
hot/cold flashes
extreme lethargy
headaches
mod-extreme shortness of breath in evenings (could be made worse by allergies, def related to bloating)
seeing movement in peripheral vision

slight twitching occasionally
feeling of increased heart rate occasionally

by the way...

This support community has been exactly what I needed on more than one occasion:  https://www.inspire.com/groups/agmd-gi-motility/

The past few days have been abundantly awful.
Actually, the past week had been pretty damn bad, but it's the extreme shortness of breath that really bothers me.  I feel like I could suffocate, but I know panicking will only make it worse.  I think it's a combination of allergies and gas from eating (anything really, these days).  Having a spell.  Good thing I bought all that food!

That's another thing I hate, wasting food.  I have all this good stuff that I want to make, that I could eat when I'm stable, but this comes on so suddenly that I fear it going bad.  Plus, cooking relaxes me.  So, if things don't improve in the next day or so, my co-workers will be getting a treat.

I haven't been able to go out in the evenings at all the past few days.  Went to the Saints game on Friday, but ended up being sick later that night.  Didn't even try last night due to the not being able to breathe.  Figured I just can't eat hardly anything, so today, I had about a half cup of grits in the morning and some chips and salsa in the late afternoon (both times I prepped by taking 1 1/2 pills (Cisapride).  And now, now I feel (and look) pregnant and can't breathe.  I really hate this.  I don't know how many times I can say this.  If I was on a path to becoming a hermit before, this just solidifies it.  I'm only good in the morning.  Basically, my free time away from my consuming job is ruined a lot of the time.  Being on the internet is about all I can do from a horizontal position.  Reading yes, but I tend to fall asleep these days.  The other night I did do some drawing though, so that's something.

That's the other thing though.  I'm so tired, so tired all the time.  Caffeine doesn't even matter anymore.  I can have three shots of espresso and still pass out on the couch after reading a few pages.  It's not lack of sleep either, unless I need more than 9 hours, which is ridiculous.  Today, I got the shakes from carrying a couple grocery bags into the house.   I sat on the balcony and spaced out, let my body sink for a good half hour before feeling "right".  I just feel weak and my body feels old.  I'm sure part of it is nutritional.  I've got to get better about the vitamins.

#^$&@*!

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.

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

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.