Finally feeling up for an update today, but have no sugar for coating. It’s been hard. I’ve been walking up a very slow, but constant, downward-moving escalator for a year now, and it shows. I have almost no energy most days. My frail but ferocious body is working so hard, it can’t manage to gain weight for energy reserves. As much as I obsess over food, the collection of meds and issues I deal with makes it hard for me to eat enough to make a difference. I have so little body fat that makes it difficult for my CGM to work properly, complicating my blood sugar monitoring (as well as my weight gain…).

The most constant drain on me, though, is sciatica. Though I can’t be sure, I believe that my total lack of fat (more specifically, I have no ass), has exaggerated the constant pressure on the nerve. Further, laying stuck in a dialysis chair for 4 hours straight every other day doesn’t help. It’s fucking miserable. The standard treatments (that has worked beautifully in years past) aren’t options now, as my liver/kidneys aren’t clearing them properly.

Its hard. When the life raft of small positives is just out of reach, but you’ve used all your energy just staying afloat, it feels forever away. It feels unfair. It feels impossible. Though I know it’s always meant well when said, this is not the stuff of inspiration. I literally can’t do anything but keep going. As much as this post may be too much or too dark, it’s real. I’m not always positive or optimistic. I’m not a perfect patient. I can’t always find the humor in the darkness. Sometimes it just sucks, and all I can do is wait for the suck to pass. It always does.

Anyway, I do want to express many thanks to any and all who have sent kind messages and thoughts. It really means a lot- even if I don’t respond directly! I do see them, even if I’m not in a mental place to respond.

I’m still waiting for transplant- currently on pause addressing a potential lung infection. Fingers crossed we kick this bitch quick. Any and all donations to COTA in my honor are wildly appreciated