Frazzled & Gastroparesis

My body is so tired and my vision is blurry, but I’m wired! It’s not Red Bull or anxiety keeping me up. It’s steroids.

I’m on a course of dexamethasone (AKA Decadron) to break up an intractable migraine that I’ve had since January. Decadron sounds like the name of a demon from Supernatural or maybe even a Transformer?

The good news: the steroids are working and the migraine is finally ebbing. Bonus: my neurologist put me on olanzapine to help with the nausea and vomiting, and it’s actually helping with it! I have nausea daily and vomiting all the time because I have this condition called gastroparesis.

A few years ago, I was diagnosed with severe gastroparesis and was told that it was a comorbidity of my Ehlers Danlos syndrome (EDS). I have a hard time digesting food. The food just sits in my stomach because the digestive tract/stomach is paralyzed. This diagnosis was made by having me eat radioactive eggs (gross) and then track their digestion. It’s called a gastric emptying test.

I’ve been on this really boring diet of white rice, baby food, tofu, yogurt, protein smoothies, and protein-enriched cereals. I can’t eat fibrous foods. No raw fruits or vegetables. Really not many fruits or vegetables at all unless they’re puréed or extra soft. It’s like that diet you go on before a colonoscopy. It’s a very limited diet and it’s tough to find food to eat. I’m always excited to find low-fat, non-fibrous, vegan options with extra protein!

It’s also caused me to gain a bunch of weight because my body isn’t absorbing the nutrients it needs. My stomach is bloated from all that food just sitting there. Of course, thanks to the plethora of other EDS-related problems, it’s hard for me to exercise, though I do go to physical therapy twice a week.

For example, when I lie flat on my back, all my body wants to do is vomit. I’m rehabbing from my second kneecap/tendon replacement and the exercises pretty much always make me hurl. And then I get an erratic heartbeat because of dysautonomia. It’ll shoot up to the 130s and then rapidly drop to the 40s.

Now I’m just on a steroid ramble. The point is, I’m frustrated with my body. I miss my old body. I wish I could make plans and not have to worry every time about whether I’ll be healthy enough to follow through. But for now, I am so very happy that the steroids are doing their job and that there’s a cat napping on my lap.

(Apologies for any sloppy writing and grammar. I’m so very tired.)