#spousey also has been in a lot of physical pain lately and so we're both just existing i guess

[small-strong-bookish-butch]

Vent, health stuff under the cut, in depth ish

I've been on the CGM (Dexcom G6) since July 4th, and it's.... arguably probably helping my numbers be in range more? But it's also so fucking stressful.

There are alerts on for if my number is dropping, rising, or doing either at a rate of more than 3 numbers per minute.

I've been trying to be a Good Diabetic and give insulin in advance, so that, by the time I actually eat, my insulin is already in my body and counteracting the food.

Somehow this Does Not Work!!!!

It goes like: give a small amount of insulin in advance (say, treating half the food) —> number drops —> I try to eat —> number spikes REALLY FAST —> insulin has worn off and/or just somehow been absorbed unhelpfully by my body?? IDK —> my charts keep saying my number is BAD and HIGH and VERY BAD RIGHT NOW AND IT KEEPS BEEPING AT ME —> I keep giving small doses of insulin to get the number down —> it doesn't work :) —> suddenly all the "oh, it's just a small amount of insulin" I was giving is now STACKED and SNOWBALLING and I'm about to be low —> cycle repeats

I have an endocrine appt (with my old doctor, who's such a kind person and I'm so excited to see her again!) on the 8th, and I need to be like, "hey, what should I be actually doing about this, because it's Not Good"

I also have a lot of littles-shame around feeling "bad at taking care of myself" re: diabetes, in addition to feeling physically ill and uncomfortable for like, hours on end.

I had a follow up endocrine appt where the diabetes educator or whatever was like "yeah, this is basically what your numbers are doing on the steroid you're on, just give a little more insulin in the meantime twice a day", so I guess that's a solution. But it doesn't really feel helpful.

I'm also very stressed about my airway appt coming up, on September 19th.

The steroid is helping, enough, but I'm still having trouble swallowing or feeling like I'm suddenly choking on spit for no reason at all, several times a day.

Viscerally, at least a couple times a day, it feels like I can feel the bones in my throat because it's literally just a clusterfuck of scar tissue. Possibly this is because I'm stressed about it, and therefore hyperaware? And that the helpful doctor who saw me in the ER confirmed that it is "just all scar tissue", (i.e. that there's not any extra tissue in the way or blocking it that we could 'take out' by surgery)...? And also that I'm feeling very Bad Aware of being in my body at most times for one reason or another?

I'm so worried about the appointment, because my mind keeps jumping to the worst case scenario, which is that one doctor I saw— who technically was assisting the doctor I saw, neither of whom does really specialty, complex cases— said he might suggest dilation (IDK what that involves for an airway), and if that doesn't work, he would recommend doing a trache.

I know logically we had a trache when we were little, but I have no idea what it would be/feel like as an adult. I'm sure it would change my life very strongly, for at least a couple months.

Also? It's hot here (80% humidity ish all the time) and I'm generally uncomfortable in at least 1 of these 2 medical ways most of the time.

I was able to basically just rant about all of this stuff to Julia, and she was kind enough to listen and expressed wanting to help.

I guess that's the other thing? I feel very scared and frustrated with my body, let alone all the layers of shame and trauma stuff around it, but it's like.... I don't know how to talk about it? I don't know how to talk to my friends about it, and most of them are Going Through something these last couple days, and.... I just feel like I need to be held for a long time. But it's too fucking hot for that too.

I think I'm not doing well, really.

And! There are pockets of hope sometimes!! Sometimes my blood sugars will get better, or I'll remember that my new doctor is like, one of the best Complex Airway doctors we have currently, or I'll try to stim more than usual, or do things on purpose that generally make me feel better. (Though I can't really tell if they're making me feel better or not? Someone has been thinking lately that maybe we're depressed. "I guess we haven't had therapy in like, a month anyway. Not sure if it would help anything", etc.)

But mostly it feels very bad, often enough that it feels like I'm just in it.