This was a nice, quiet week. I had a bunch of genuine C days in a row, something that hasn’t happened since my nutrition stalled in mid-December. But as of Friday, I am now back to truly increasing my nutrition by 50-100ml every 3 days or so with the higher calorie formula.
I continue to feel the improvements in my brain capacity and overall energy. I am back to being able to read long-form articles, which I am enjoying. Although given the state of the world, those articles tend to be depressing, but that is another issue.
My increased nutrition is also helping me disambiguate which symptoms were from malnutrition and which are from gastroparesis. I was fairly warned that the tube would not alleviate any of my gastroparesis symptoms and that is indeed true. After a spate of C days, I started feeling crappy again. And it turns out that the needing to lay down with minimal external stimulation is a gastroparesis thing. It is like someone turns the nausea setting up to 11 and my body responds by needing to kinda shut down for a bit.
This will obviously make future planning difficult moving forward. I know that I can push through tough days when I need to, albeit at a cost. But as the first ER visit showed, that cost can be mitigated by whatever resilience I have built up with my increased nutrition.
David and I have started discussing the possibility of travel again. We aren’t quite ready to do it yet, but we are ready to start thinking about what ducks would need to be in a row to make travel happen. For example, given the recent airline delay fiascos, what is the minimal amount of formula that I would be comfortable having in my carry on? TSA rules say that I could only bring enough formula for the travel day. But if I got stuck somewhere or my checked luggage got lost, I would need two shipping days to get replacement formula to me.
In addition to travel, there are things that I would like to do once I get to full nutrition and have energy again. Covid-willing, I would love to get to get back to the theater. The challenge is that most theater tickets need to be bought in advance and I can’t predict how I will actually feel the day of the show. This all comes back to my resilience. If I feel like I can push through the crappiness and still enjoy the show, I will do it. But if I know that I will be too sick to appreciate anything besides proximity to a cat, I will just have to reconcile myself to the cost of that ticket being yet another expense related to gastroparesis.
I recently saw a parenting meme recently that really resonated with me about RSVP options. The original 3rd option was a Yes, assuming none of the kids get sick and we have to cancel at the last moment. This is my version:
* Yes
* No
* Hopefully? Assuming that I feel well enough to enjoy whatever the event is.
This coming week, I have an appointment with Dr. Kumta, the doctor who put in my tube. Since I have not seen any more blood since my tube was adjusted at the ER, I am going to assume that issue has been resolved. I do intent to ask him about scheduling replacing my tube with the one he likes better since I am now almost 8 weeks out. Unlike the first time, I am in no rush to get the new tube. Etisarap may have some logistical challenges (nothing that can’t be solved with tape), but I still love her dearly.
The replacement tube will still be Etisarap. I am following the Dr. Who/grandfather’s axe theory of naming. Even if she has been wholly replaced, she will always be Etisarap to me.