If you’re not looking close up, I pass as a skinny chick. If you look, you’ll see the connective tissue under my skin is both too tight and is also hanging off in ropey strands.

The connective tissue that is tight, it’s compressed my skeleton from head to toe. My pain is astronomical sometimes. When I lay straight, the tissue presses my rib cage down making me feel claustrophobic and then I hyperventilate. MRI machines are hell.

The tissue that’s loose has created choking hazards and it cuts my airway off based on my position. When I spent too much time doing myofascial release work, not knowing I had an underlying genetic condition and shouldn’t do that, I started to get extremely sick.

I have had a fever more days this month than not. I have a severe neuropathy from my eye orbits down. My vitals range from 222/166 down to 86/55 and my medications stopped clearing my system correctly.

I now have severe muscle atrophy in my chest and intercostal muscles and am waiting for an answer.

My PCP diagnosed me with Relapsing Polychondritis, but the neurologist I saw last week also ruled in MS, which we feared in 2018. It was ruled out then, but I am struggling now from the face down from the combination.

It feels like more things got ruled in by trying to solve a weird Scooby Doo mystery.

Keep my family in your prayers please. This is the most difficult time in my life and I keep saying that, but it keeps being true. A rumor was started that I’m a scammer because my house was too large or something. 🙃

Quite literally, I am supposed to feel like my support needs are less because the walls in the family room that make me scared in an autistic meltdown, are too tall so I have disposable income for compression gear and pizza after my 9th MRI this month. Noice. The internet keeps life classy, but I digress …

I don’t even know how to address issues about my integrity when I haven’t yet finished finding a CNA who can help remind my insurance company that I am still here.

If you have any resources on how to get rid of pesky head-to-toe connective tissue trying to suffocate you alive, please let me know. I don’t know how to rest with that level of pain for much longer. It’s making my heart break and I’m losing myself in pain and anger.

If you know diagnostic specialists looking for a project, send them to me.

If you have a box full of money and you like sharing with the class, I’m not hard to reach.

If you’re kind and caring and have a heart that is only kind, please reach me. I feel isolated and alone more often than not. I know how to reach out, but sometimes I can’t find it in me to do so. If crying makes you uncomfortable, I’m not the one at the moment.