So, for those of you that wandered by for my post “You’re Going to What in My What?”, here’s an update/recap:
Biopsies from a colostomy and an endoscopy of my stomach came back a bit tetchy, with bile found in unusual amounts in my stomach, just kinda chillin’ out, serving no purpose. Meanwhile, biopsies were taken. Whee!
So, got the call thursday going, “Hey! The biopsies are normal! Ain’t that great? Guess what, your problem is that your stomach just doesn’t empty completely after meals the way other folks’ do. No treatment but some low fat food and eating lots of smaller meals!”
“Oh! Well, that’s all?”
“Yes! It’s called gastroparesis. If you’ve already been improving with smaller meals and lower fat food, you should be fine, just call us if anything gets worse, okay?”
“Sure!” I said. And we hung up. I made a mental note to eventually look up what this funny “gastroparesis” thing was later, because I like to be educated on what’s going on with my body.
I want to punch that nurse. It’s not her fault, she was probably trying to keep me calm, but I want to punch her. You want to know what gastroparesis is? It’s partial paralysis of the stomach. My stomach is a cripple. Yes, that’s not a PC word. FOCUS. Focus on the fact my stomach is, apparently, partially PARALYZED, and they just went “LOL, no worries!”
Of course, they can’t exactly be blamed. The cause is idiopathic, since I don’t have Type I diabetes, and they can’t say for absolute 1000% sure because it takes another, much more expensive test to confirm, but they’re pretty sure that’s what it is. And, furthermore, there’s no real treatment– some drugs that kinda work-ish, but mostly just diet/eating adjustment. So, hey, no point in panicking the little 22 year old. There ain’t shit she can do!
Well, guys, frankly, I feel a little betrayed. Mostly because I’m deathly afraid that this will get worse at some point, progressing from nausea to vomiting. Progressing from just being able to eat a sandwich to being able to eat a couple chips before feeling full and getting sick. And there’s no cure, according to the boys over at the Mayo Clinic.
FUCKING REREAD THAT. THERE’S NO. FUCKING. CURE.
There’s also things on that page that say “Well, you can cope with some diet adjustment, but it may not be enough. And all the drugs have shitty side effects. Sorry.”
Thus, you get the two titles for this post. One, FUCK the doctors for not telling me EXACTLY what this was and two, I’m panicking. Can you really blame me?
Let’s look at this. I’ve had problems with food all my life. No, not an eating disorder (thank god) but I’ve always been prone to food poisoning. My stomach reacts badly to stress and hurts. I hate throwing up more than any sensation in the world. And now I’m looking at my stomach being broken and possibly having a future of that if this gets worse?
I’ll be honest. For all my ranting and raving, I’m also sobbing. I’m sobbing and scared and I don’t know what to do. I’m scared I somehow did this to myself through too much stress, or that when I was concussed it possibly knocked my stomach wiring loose. Or that for all the times I thought I was fat, that I just wished I didn’t have to fucking eat because it was expensive, that I didn’t want to eat because it was time consuming, because it was not something that particularly got along with me, that my body went “LOL, KAY! See how you like not being able to eat, and guess what? YOU GOT YOUR WISH AND CAN’T REVERSE IT. HAHAHAHAHAHAHAHAHAHHA!”
I know that so many great people had so much shit wrong with them it was ridiculous, usually relating to either severe health problems or being mad as a march hare. It was part of what made them great for one reason or another: by being influenced by it or by battling against it.
I thought being crazy via depression and anxiety was enough. I thought being fucking HATED by people all the time for no apparent reason was enough. I thought having a crazy fucking asshole father was enough. I thought having a mind that will torture and torment me and make even the things I love seem horrible and distort my perception was enough. I thought having mild PTSD was enough. I thought ALL of it was enough to pay my debt, to say “Cursed or damned with ailments, I will keep working. I will keep fighting. I will keep running and trying, no matter how fucking hard it is. If the universe is throwing all this at me, I must be meant for something great.”
I thought all that was enough. Now my body is betraying me too, after years and years and years of my immune system being awful and always being sick and my coping with that, my stomach is trying to go half-ass on things too. I thought my debt was fucking paid, that I had to put up with and work through all this shit. NOW I have to sit here and encourage all the rumors I still hear in my head from kids whispering I was anorexic because I didn’t eat much, and sit here and have people look at me when I say I can’t have high fat foods and go “HMPH, sure you can’t. Look at her, thin as fuck and still dieting.” I have to mess with a special diet and a special way of eating. This was after having to adapt to a special way of thinking so my fucking brain doesn’t eat me, and every day it’s a fucking struggle not to let my brain skip off with my common sense anyway, which will leave me doing things like hitting myself in the head to so my thoughts will stop racing simply from the shock.
I’m pissed. I’m scared. I’m really, really upset, and I know I’m being melodramatic. This just hit me. This is reactionary, just like my blog post for Born This Way. This is off the cuff and I don’t know if it is even coherant. All I know is that this is the only way I know to process this– by writing, and by asking for help and advice from everyone, including the faceless sea of anons and femanons on the internet.
Is anyone else out there living with this? Did it get better? Worse?
Anything is better than staring at the letters emblazoned across the inside of my head:
“There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that’s not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.”