Oopsie

I got so distracted by introducing Etiserap and Yipbarri that I forgot to give an update on how I am doing. Several of you asked after me, which made me feel very loved. Thank you for that.

It has been 8 days and 6 feedings since I got my tube. I am now up to 750 calories a day in formula. I am eating even less since the tube, but I would bet that I am still getting 100 additional calories a day or so. Something clicked in Monday afternoon and I have started feeling like a vestige of myself again. And I still have a long way to go before my formula fully titrated up, which means that it should only get better from here.

There is a big caveat though. Increasing my caloric uptake is mostly a wonderful thing (I will explain that qualification in a bit), but we always knew that it would not do anything for my gastroparesis. I have had a couple of bad gastroparesis days this past week. They are much easier to bear knowing that I will not need to force any lead formula bombs into me just to ensure some degree of nutritional intake. I am still having to drink 20 or so ounces of electrolytes a day until I reach a point where I can get my necessary hydration through Etisarap. That makes my bad days just bit worse, although I see a clear light at the end of the tunnel.

The tube feedings have been going very well, even if titration is going a bit slower than we had hoped. Last night we also realized that given the volume of my daily formula intake, in just a few days I will no longer be able to sleep 12 uninterrupted hours without doing a flush and switching feed bags. Long term, I may not end up needing as much sleep. But we are not there yet.

I have encountered some unexpected bumps in the road as I slowly regain my Eva-ness. I still have no resiliency, but I am beginning to feel feelings that my body has just not had the capacity process for almost 2 years. I feel the feelings but without the capacity to process or contextualize them. My therapist has been incredibly helpful with this transition, but they are absolutely exhausting.

Someone in one of my chronic illness groups recently mused on how many other health issues we are forced to deprioritize because our chronic illness takes up so much of our energy. That was a timely observation because I am about to run out of my thyroid meds. My thyroid numbers have been all over the place for the past couple of years. Whether it is because of the serious weight loss or the malnutrition, I don’t know. I had been postponing dealing with the issue until I was fully titrated up and my TSH levels had an opportunity to stabilize. But my hand was forced by my inability to get refills for just a couple of months. I do have an appointment with an endocrinologist next week, so we will see what she has to say on the matter.