Chronic Illness, Gastroparesis

The Little Joys (It’s Raining Zofran!)

Appointment days can suck the life out of you very quickly. For me, each appointment is mentally and emotionally draining. I am 3 hours out from it and the exhaustion is setting in quickly. Appointments not matter how standard give me massive anxiety. The second I sat down in the waiting room my hands started shaking and my heart started pounding. Later the nurse asked if I was nervous since my heart rate was elevated. After my doctor busted into the room smiling while I was having my BP taken by the nurse she mentioned that while I was nervous my doctor was obviously very excited to see me. Which is true, my GI is a freaking ray of sunshine and I owe so much to her.

Things have been worse symptomatically so I was nervous what my GI would say. I was also nervous about whether she would let me start tapering off my Protonix as she had originally said. There is generally a lot going on and we don’t quite know why everything is going on. PT school makes everything worse. When I told my GI everything came flaring back the first day of the semester she told me that was what we unfortunately expected (which is true). I am also a magnet for neurological side effects so both my GI and I aren’t comfortable with some treatments and others are off the table because they would affect my ability to succeed in grad school. There really aren’t many options left and we generally have to pick and chose what to focus on. I had to make hard decisions about treatment and which I wanted first because we already know I will likely negatively react to both and we need to make sure that we know what is causing the issues. It isn’t easy at all. It’s frustrating to know that options are limited in the first place because of lack of options from lack of research. It gets worse when you know it is because your body can’t handle treatments. Like if a body stops working it should at least tolerate treatments.

I always try to pick out one great thing from the appointment to keep me positive. In this case it was eh tapering off Protonix! I have 28 more days left if things go well (I’m staying optimistic about this). I may finally get a break from the headaches! I also have a treatment lined up for my gastroparesis in case things keep staying flared and terrible. Then I have something to work on to try to improve some other symptoms. It is a bunch of tiny baby steps but at least things are moving forward in the right direction. I have a great team both medically and in terms of family/friends by my side which makes this all a billion times easier. Most notably medically I have my kickass GI who did a great thing when she went it and refilled my Zofran. She tested the limits on how much I could get covered and the result is a lot of Zofran saving me a lot of money!


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