The last week has mostly been extremely uneventful. I have been slowly trying to increase my feeds daily so that I can get up to the rate of 82ml/hr for 24 hours, I started at 30ml and only 250ml of feed. I’m now at 24 hours, at a rate of 60ml/hr.
I spent most of the week doing school work and just resting while also trying to get a hold of doctors and schedule things. I had my labwork done which came back normal minus low potassium, which means no refeeding syndrome.
I got my 23andMe results, which showed that I am not a carrier for anything like cystic fibrosis, sickle cell, etc.
I did however test positive for a couple of things: Crohns (not shocking), Ehlers Danlos (COL5A2) which also didn’t surprise me, Mastocytosis (which I didn’t even know what it was until I it popped up on the test), and I actually had some genetic markers for Autism. Overall it was super interesting to see what I was at risk of, but also a giant relief to see the hundreds of things that I didn’t have or were at no risk of! Now to get the results to my doctors so they can do their thing!
On top of that I got to discover my genealogy which told me I was 51% Irish, 27% British, and 17% Scandinavian and then a bunch of smaller percentages of Northern European .
I’ve been working on trying to find a tape for my face that is both gentle and strong. I tried Avellyn Thin which was gentle but not sticky enough, a plastic transparent tape that was strong/sticky but caused my skin to get destroyed, now using NG Strips that I just cut up because I didn’t want them on the bridge of my nose cause I think that would drive me insane. Because it’s both sticky but sensitive. The problem is the hospital only gave me like 3 of them.
The funny part is my skin by my tape isn’t super irritated, but I’ve encountered something (most likely a new brand of makeup remover) that has caused a rash on my face with hives and burning sensation. I’ve been putting liquid Benadryl in my NJ to control the burning so I don’t itch at it and irritate it more.
Of course, Benadryl only works because it sends you into a stoned state where your pupils just dilate and you don’t care about anything except sleeping. Which would be fine if I hadn’t had to write a 5 page essay on Plato for English. I sent it to a friend to revise and look over because I can hardly focus on writing let alone making sure I typed everything right. Even now I find myself spacing out or feeling like I am rambling.
Tomorrow I have college again, which luckily I got a Tubie Clip from TickleMeTubies which has things for all sorts of tubes! I definitely recommend them to people. I am hoping this will make sure I don’t end up getting my tube in clay or glaze like last Monday.
This week I also booked a photo shoot with a couple who wants photos before her boyfriend leaves for the military. I also have another counseling appointment in which we have been working on learning social cues since she thinks the root of my anxiety and panic attacks come from just a misunderstanding, as well as working on healthy ways to calm down during a meltdown.
Over all, I think this week is going good so far. I’m hoping to get some crafting done as well since I have a LARP event coming up that I plan on entering in their art contest. If I have the time, that is, with finals and stuff also around the corner.
Overall, this week has been good so far minus a few small issues, and I really like to think things are gonna go up from here out. Even if they can’t be perfect, even if I can’t be cured, good days are good days. Mine may be different than others, but they’re good to me.
I hope this week is a good one for everyone else as well!