u/AnxiousGiraffe45

Just here to say: releases and blurbs? I’m not worried! My sweet baby Lulu and his Elain…I still see it. I see nothing in the blurbs or titles or anything like that makes me think “nah, that’s not happening.”

I’ve seen a couple people freaking that’s it’s not happening, but I see nothing to stress about 🌺 ☀️ 🦊

For example, my husband and I would love to buy a house. But every time I turn around I have another medical bill related to my hEDS.

I just got $1600 for an echocardiogram when they had to rule out vEDS. I have two ultrasounds next week to check on reoccurring UTIs and if my adenomyosis is now endometriosis, which I’m concerned to see how much it is.

I am about to begin allergy shots because I’m allergic to everything, but those copays are going to get nuts.

I still haven’t paid off my 12 day long stay and ICU stint with my severe preeclampsia with my daughter. (Thanks for the comorbid dysautonomia with the hEDS).

That doesn’t even begin to account for the regular visits with my pcp for whatever illness or infection I’ve got. Or the dermatologist everytime I get a weird rash or checking on the androgenetic alopecia. Or the psychiatrist because of the ADHD and anxiety. Or the hematologist because of the iron deficiency and low ferritin. Or the OBGYN because of the weird cycle and subsequent pains.

And the prescriptions and supplements just to function partially.

And on paper, of course, they all appear disconnected but we know they are all connected and related.

I spend around $8k-$10k a year in medical bills…and that’s just me. And we have decent insurance because my husband is a teacher.

Is this a normal lived experience?

I just got my formal hEDS diagnosis two weeks ago.

This morning, I woke up and did the automatic morning stretch many of experience? It’s called pandiculation, and technically it is contracting muscles instead of stretch, but either way.

I had both my arms up, stretched down, and something near where my neck meets my spine popped. Now, I’m sitting here on a heating pad, unable to turn my head totally right or left.

Anyone else ever done this before?