According to Schoolhouse Rock, 3 is a magic number. But for my body, 1,000 seems to be a magic number.
If you recall, I had hit the 1K calorie threshold before, but it was only briefly and with a fair amount of misery. I had to drop back to let my jejunum recover. Then came two ER visits. I rebounded from the first one impressively well. The second one, not so much.
I was frustrated because even though my stoma was healing nicely from the adjustment and there was no more blood in my tube, I was stuck with minimal energy and needing lay downs. I knew that I could bounce back if I could up my nutrition. However, I couldn’t comfortably increase the volume in any meaningful way in the short term, so I felt stuck.
The nutritionist at the supply company ordered me a sample case of a higher calorie formula. 1.5 calories per ml as opposed to the 1.0 calorie per ml formula that I was on. I tried substituting 100ml of the higher calorie formula for the lower, keeping the overall volume the same. I knew from experience that I would need 3 days to ascertain whether my body would tolerate the more concentrated formula.
Long story short, it did. I do need the 3 day adjustment time, but I am once again able to slowly ratchet up my nutrition. And just a few days after I hit the magic 1K threshold, something auspicious happened.
I made it out of the apartment, for the first time since mid-October for something not medical! I had accidentally created a tradition of going out on Fridays. The first few Fridays we went to the ER, but since I was feeling well, we decided to switch it up and go to a bakery instead. 😉
And it was a lovely Portland day, albeit in Astoria, Queens. 45 degrees and rainy. Just the way I like it.
Our adventure was tiring, but not so tiring that I needed a nap afterwards. Nor did I need the nap the day after. And yesterday my wonky brain came back and I surprised myself by commenting on public policy while listening to NPR. Both things that were unimaginable just last week. That burst did tire me out, but it is so nice to see sparks of Me begin to emerge. I know that I still have a long way to go, but the slow and steady progress is definitely buoying. Tonight I will continue the march forward by replacing 250ml of the 1.0 with the 1.5.
I had an appointment with my GI this morning, and he is fully behind my plan to slowly transition from the 1.0 to the 1.5. And only go back to futzing with the speed after I am at my nutritional goal. We both have concerns about how to put this into an order that the supplier can comprehend, so I have asked my nutritionist to help the doctor put the order together. He even suggested that she call him directly, something that I am completely behind. Since I can order the formula directly, I even have a backup plan if the order goes awry.
Since I have long hair, I can really see how two years of malnutrition has made my once thick hair very fine. But before I could ask my doctor about doing some nutritional bloodwork on me, he recommended it. I have to go to the lab to get blood drawn for my thyroid test, so I can just get this drawn at the same time.
Right now, we think the nurses at the local hospital are on strike (nurses at Mount Sinai are definitely on strike, we just aren’t sure if the nurses at the local Mount Sinai are part of the same union) and my bloodwork isn’t urgent, so I will not cross the picket line for it. If the strike goes into next week, I will just find another lab to get my blood drawn.
Tears of joy!
Thought of you whyi heard about the strike, hoping it wouldn’t affects you. Bummer.
Yea on nutrition. !!!
I am so pleased that you had a good day!