The waiting game
Hi everyone! I’m new here. Not sure what I’m looking for with this post. Advice? Personal experiences? Anything? 😭
To preface, I have hEDS, POTS, and MCAS. I’ve had moderate GI issues for ~5-6 years now (bloating, food sensitivities, nausea). Tons of nutritional deficiencies. But my symptoms have never been this bad. About 2.5 weeks ago, in the middle of an hEDS flare up, I woke up with textbook Gastroparesis symptoms, minus the vomiting. I’m terrified of throwing up so I will mind over matter that s*** every single time. Even if my mouth is actively watering. My care team and I are pretty positive it’s GP.
I’m having a really hard time with intake. I’ve been in the ER twice now for fluids, and have lost 20 pounds so far. I don’t really have extra weight that I can manage to lose and I’m really really struggling. I can’t tolerate pretty much anything and am getting in MAX 3 cups of liquid and maybe 500 calories total every day. I’m barely ingesting anything because the aftermath is so horrible.
My GES is in 2 weeks and the waiting is (quite literally) killing me. How do I do it 😫