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.

#^$&@*!

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.

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.

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