Hello all...

I have decided to consolidate my blogging on one service and I have moved this blog to Wordpress.
Please see this link for further updates.

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.

Running on low

So, I'm running out of meds, the ones that work (Cisapride/Propulsid drug study).  I just counted and it's down to 25.  I've cut my dosage in half these past few weeks, which has resulted in me feeling/looking like I'm wearing a tire around my mid-section, (now extreme) nausea, and pain, as well as some depression.  Once again, I'd forgotten how good I'd had it with 20mg.  It seems that even doing the 10mg is like doing nothing at all since I just ate a small croissant and paid for it with a hour and a half of lying perfectly still on the couch, trying to will the pain away and trying not to hoark.  It also appears to have brought on a mild migraine.

Tomorrow I finally go to my appointment, of which my doctor is going to see me for free, since I no longer have health insurance.  I have to pay for the EKG and labs out-of-pocket, but I really don't care right now.  I just want more pills.  I've forgotten how to function without them and I fear I would never get anything done in the evenings (mornings are now rough too), unless I just didn't eat at all.  Of course, this is how most/many GP patients have it, so I should probably count my lucky stars I've found something that works.

The only good thing is that I've started drawing again.  In the evening, when I can't sit at my desk anymore and need to just be still, I sit up and draw a little bit.  I've started drawing still lifes, but still lifes about my still life, drawings that try to convey how my insides feel.

Right now though, right now I need to go lay down again, and just wait for this to pass.
I hope anyone out there who might be reading this is doing well and having a Happy 4th.  Light some fireworks for me.  :}

p.s. Does anyone else feel so much better mentally when not eating?  I get depressed because I can't eat, because I'm thinking and planning and revolving around food, and then when I do eat, it just brings me down anyway.  My mind is so much lighter, not as depressed, when I don't eat.  That's why I (usually) like mornings now, it's like a clean slate.  It's a constant up-and-down struggle, not just with my body, but with my mind.

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!

Stop! Liquid diet time!

I look and feel, oh, about six months pregnant and have gained back a few pounds from trying to get in food consumption at night before I go to bed.  I feel both fat and awful.  Threw up today after eating some pretzels (didn't take pill either, because I'ma dummeh.)

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.

what the crap?

Ok, so maybe I'm an idiot, but I thought Prilosec and Prevacid (hello, it's in the name) did more than alleviate heartburn. I DON'T HAVE HEARTBURN. My fucking mid-section feels like someone is twisting it, HARD. Hence the ibuprofen. How the hell is heartburn medication supposed to help. I don't get it.

Still in flare-up mode. Things seemed to go back to "normal" after last weekend, but went back to crap this weekend. What is it about weekends?! Dammit! So yeah, not able to eat much again and I should be sticking with liquids, but it's very hard. Was taking a lot of ibuprofen to combat the pains, but doc said to cool it with that and try Prilosec or Prevacid (???). We'll see. I'm so glad I made an ENORMOUS amount of baked ziti last night. Thought this would let up soon, but maybe not, so I froze most of it. Food stresses me the FUCK out.

I asked the doc if your woman times could affect the flare-ups and he said he's had a few people who have seemed to have that problem. Since I'm on the 3-month pill (for endometriosis and cysts), I'm thinking that's why it's particularly bad right now. (I'm at the end of the 3rd month). Looking back, all the other more manageable flare-ups have been mid-cycle (or when it would be my time, if I weren't on this wackadoodle pill). So, it seems logical to me. And shitty. Also shitty.

As if dating weren't hard enough.
SWF. 33, never married. (Hmmm.) Has fun, quality-of-life medical issues and is possibly sterile, or will be soon. Also, half blind with an "artistic temperment" (read: moody and sometimes depressive). Make a line, boys!

#^$&@*!

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.