Well, we finally figured out the cause of all my stomach problems. I have gastroparesis. Gastroparesis basically means that my stomach is partially paralyzed, and food is staying in my stomach rather than digesting. Ehlers-Danlos patients commonly have gastroparesis, so my doctor says that’s the most likely cause. Great. Another incurable illness with crummy treatments.
So, I went in to talk about treatment options and we really aren’t liking any of them truth be told. The first option is a medicine with some serious side effects (some are potentially irreversible), but we have to try it. The second option is another medicine with serious side effects (but at least those are reversible if you stop taking the medicine). Those are the only two medicines he says you can use. I have read about a couple others online, but some are not available in the USA, and some are just not very effective, so he probably doesn’t really bother with those.
I was kind of shocked that there were only two medicines. My doctor immediately piped up with:
“Oh! Don’t worry! There are things we can do! We can put a stomach pacemaker in! Just like you’d have a pacer for your heart, you can have one for your stomach! We can also put in a feeding tube!”
I think I made giant owl eyes at him when he said “feeding tube.” That’s a road I hope I don’t need to go down, ever. Scary shit. I realize it isn’t “end of the world” shit to most people, but surgical options being my only options in the event that the medicines don’t work is.. Well, it’s not too appealing to say the least.
I asked if there were ways to help by changing my diet. He pointed out that I’m probably already restricting a ton of foods (I have been, because eating makes me really nauseous), but he said that eating low fat and low fiber would help. Eating every two hours (small meals) helps too. He said snacking on food throughout the day is the best option. Liquid meals when I am too nauseous to eat solid foods.
So, I go back in six weeks, and in the meantime we’ll hope the meds and diet changes help. Scary stuff. I mean, I know it’ll be okay, but it’s still scary to me. I’ll adapt. I know I’ll adapt. I just wish there were some more treatment options available.
On the job front, we’re both hopeful. Everyone Master Pravus works with was shocked that he was let go. They are all giving him a bunch of leads and leaving awesome reviews on his Linked-In profile. Friends and family are sending us leads to things in his field too. Tomorrow is his last day at work, so after this he’ll be at home more.
It’s really hard thinking about everything going on at once right now. Thankfully, I’ve been pretty busy with the Mewtique so it has been helpful to me to help keep my brain and fingers occupied.
Things are pretty similar to the first time Master Pravus lost his job, last September. I stay awake late at night and sew, because I’m somewhat stressed and having a hard time sleeping. Then I kind of sleep in late, and the cycle goes on. There’s really no reason to bother with sticking to a “normal” schedule right now. Master Pravus says it’s a lot better for me to get out of bed and do something (not that it has to be sewing, but that’s the most productive) rather than to stay up all night in bed not sleeping.
We’re going to make it through all this. I know we will. Fuck though, talk about a rough week.