Listening to Kpop Demon Hunters on repeat

Not much has changed since my last update. Well, all of my ginger arrived. Otherwise, it has been over a month since the norovirus infection, but my body stubbornly refuses to tolerate my feed at more than 60% of what had previously been a reasonably comfortable rate. My GI thinks it is post infection dysmotility. So we are once again trying motility agents.

I tried 0.5mg of Motegrity (we started at 2mg) and once again, my stomach immediately filled with air. That wasn’t going to work. So, at the original suggestion of my pain doc, but with the approval of my GI, I increased my naltrexone to 9mg. At that level, naltrexone not only helps with the pain, but increases motility.

The naltrexone is definitely creating motility and I continue to not be a fan of how motility makes me feel. But this is way preferable to the Motegrity and I really would like to get back to full nutrition, so I am sticking with it for as long as I can tolerate it.

The caloric deprivation continues to mess with me. My nutritionist has set a floor of 500 mls/day (750 calories) and I have been struggling to reach that every day. I haven’t been able to spin in over a week now. Reading anything longer than an article is out of the question. And long form articles are a lot for me. My concentration is just shot.

I miss doing things with my hands and I look longingly (and appreciatively) at the crafty creations my friends post online, and my fingers inch to craft. Following a pattern feels like too much right now. Even a simple one. What I really want to do is take some of my homespun and just start crocheting something. Anything. Crochet is easy that way. But I haven’t finished any of my recent handspun plies, and I don’t know if I have the spoons to go through our yarn stash to find something to play with.

That above paragraph is how I spend a lot of time these days. Daydreaming about things I want to do and then being smacked in the face with my reality that I really don’t even have the spoons to do much of anything besides daydream.

Yes, I am in a dark place and I know it. But have you seen the state of the world? I challenge anyone not to be in a dark place right now? Especially now that I have once again lost what brings me joy.

Rest assured, both of my therapists are aware of my state of mind. Erin, my therapist that I have been working with for nigh on 3 years now, has been here with me before. She knows my frustrations and my limitations. She knows that I am a survivor, and that even if when I get cranky and complainy, I will continue to push (probably a bit harder than would be ideal) to do as much as I can. And that, unlike the last time I was in this state, my spinning wheel is already out and accessible, I have a bunch of fiber on hand, and will be able to start right back up once I get my nutrition back up again.

I have tasked my pain therapist with finding more relaxation techniques for me that don’t involve deep breathing. Deep breathing is painful for me. Actually, most breathing is painful for me. My abdomen really doesn’t like moving. So all of those lovely relaxation techniques that involve deep breathing just don’t work well for me. And focusing on my breathing doesn’t calm me, because it is hard to feel calm when one is focusing on what is causing them pain. But there have to be other relaxation techniques out there. Better she do the research than me.

This coming week is a pretty busy one. I finally have an appointment with a psychiatrist this coming week. This is part of the deal with my pain doctor to allow me to get on the notriptyline to help my brain not see gut motility as pain. The goal now is for the psychiatrist to wean me off the duloxetine without me landing back in the hospital with abdominal pain. It doesn’t seem to have much, if any, effect on my mood, but my pain doctor wanted a psychiatrist to monitor the withdrawal process anyway.

Back to the nortiptyline, I have now been at 40mg for almost 2 weeks and I am definitely feeling a difference in how I perceive gut motility. Unfortunately, I am still feeling it, but it is now more of a vibration than pain. It is now simply uncomfortable. I am willing to call that progress. I see my pain doctor in two weeks (right after Rosh Hashanah), so we will see what she has to say then.

I also see my nutritionist next week. I have had a substitute nutritionist for the past few months while mine was on maternity leave. This will be my first appointment with her since her return. When she left, I was basically weaned off the TPN and getting full nutrition through my J tube. Now she comes back to me struggling to get 60% of my nutrition. Kind of a bummer note to start back up on. But apparently her daughter is adorable, so there is that.

My new CPAP finally arrived yesterday. It is all fancy schmancy and has an app to adjust its settings. The important thing is that it actually works. Although the reservoir is worryingly small. When I used to marathon sleep, I would sometimes have to refill the reservoir on my old CPAP before I was ready to get up. I still sleep a lot, but not that much, so hopefully it won’t be a problem. Fingers crossed.