When last heard from, I had essentially flipped the bird at the new GI I saw on Tuesday by upping my feed to 27ml/hour. TL;DR: that was a bad call.
Friday was A Very Awful Day. I could not stop crying. In general, I am not much of a cryer. Before gastroparesis, I would go months without crying. I really only cry when I am frustrated or when I am in pain. And on Friday, I was both.
Seeing how miserable I was, David suggested that perhaps I might want to switch my feed back to 25 and see if I was more comfortable. To say I was resistant would be an understatement. He pulled out the big guns and reminded me that we were going into the weekend and the next step for me was to go to the emergency room. There is nothing more horrifying to me than the prospect of having to go to the ER on the weekend! I switched my feed back down to 25. And I got better.
Not big B better. But I stopped crying and was able to think again. As well as a malnourished Eva can think. Which also meant that we were able to go to the Astoria Pride celebration yesterday. It was a completely exhausting endeavor, and totally worth it.
One of the reasons I selected Astoria as our landing place was because it has a real community feel. People here identify strongly with Astoria and are proud to be raised here. That sense of community was strong at the Pride celebration yesterday.
There was a real small town event, with local performers raised in Astoria and training at the local dance studio. A dance studio right by our apartment where you can peer through the velvet ropes (I kid you not) put out during lessons and you can see young women and men learning traditional dances including how to dance with a wine bottle on your head!
To round out the small town feel, the festivities included a tug of war and pride bag races (rainbow potato sacks). It was absolutely the low key, fun, enjoying laying in the sun kind of day I think we both desperately needed.
But it wiped us both out. I only stayed awake until my normal bed time because I needed to disconnect and reconnect to my feed, take my meds and do all of those other responsible things. Otherwise I would have crashed for the night the minute we got home at about 5pm.
Today is a rest day for me. At least I hope it will be. Xena Malka woke me up early this morning because she is the most neglected cat ever and we dared to leave her alone for 3 hours yesterday. I definitely see at least one nap in my future.
David has big plans today. He will venture to Brooklyn for the first time since we arrived in NYC for a Brooklyn Cyclones game. My father would be so proud. He is going with a group from the local Reed alumni group. We missed reunions, but at least he will get to hang with some Reedies and enjoy an afternoon of sportsball.
David has been seriously craving ocean, beach and palm trees for YEARS. I told him that he could go for a walk on the beach after the game. But sadly, I couldn’t offer him any palm trees. Apparently, Brighton Beach wasn’t exactly what he had in mind.
Tomorrow, we reach out to my current GI and give him an update on my status. I finished my course of antibiotics. Maybe they helped, but it is hard to say. Only thing we know for sure is that moving up my feed to 27ml/hour is not viable. Then we see if he chooses to respond. But I think it is unlikely.