I can't do this on my own. Please help.

It turns out no man is an island.

This is really tough. I've been battling what appears to be the onset of a genetic neuromuscular disease that has changed every aspect of my life. It started as gi complications that I wrote off, then cognitive issues I dismissed as CPTSD symptoms and enrolled in 16week IOP program. My hips had been hurting irregularly for a few years but I was training for competitive powerlifting so I assumed my squat form needed adjusted. The joint pain came on in September and thats when I started probing my family for more info re: the dystrophy my mother has. I'd seen my primary for each issue, telling them my thoughts on why but also sure to communicate the MD in my family-- two doctors convinced me I didn't need to be tested because MD is only childhood onset (incorrect). One was convinced my pains were anxiety induced, no referral given. The tension in my joints grew and grew until nerve pain started in my fingers. I immediately went to my primary, reminding them of the dystrophy again, and asking for a way to be tested or way to stop the pain. My anxiety was more concerning to him than the progression of my symptoms as a whole and his one word answer of "no" was super reassuring when asking if theres any way to reduce the pain I'm feeling. I learned the difference between muscle pain, nerve pain, and joint tension in my body after a while but the beginning was terriffying. A cluster of confusing sensations I'd never experienced all at the same time : nerve pain shooting electricity through my forearms, muscles contracting and releasing, my joints stiffening like I need a stretch, muscle fatigue like I just ran a marathon, balance and coordination was off, my fingers and toes dances on their own, and my hand was responding slightly off to the signals my brain sent. It took 3 more visits, lots of complaining, and a doctor change to get a referral to a genetics specialist for dystrophy testing.

The specialist took my dna for testing and physically assessed my symptoms to be consistent with dystrophy.

I lost the ability to do the things i love, my studio apartment w/ the city view, ability to make money, powerlifting future, and my active city girl lifestyle. I feel like I've been screaming down an empty hallway of doctors begging for help while they look at me and tell me it's in my head and that I'm totally fine. Meanwhile I'm in the most physical pain I've experienced and unable to use my hands, knowing minimal people in the city and no Community Resources or assistance on navigating life newly disabled.

I've been really lucky to have a friend allow me to stay with them and help me navigate how to do the basic functions I've done so easily before. But things are progressing so quickly and everything in the medical field moves so slow. The weakness in my hips and thighs is so overwhelming at this point I can't stand for more than a brief period, and I've collapsed going very short distances walking. But everyday is different, somedays I think a cohle get around via a cane, others I'm not leaving the house because the fatigue is astronomical and collapsing in public is embarrassing.

On Monday I switched my insurance in hopes of receiving better care under different doctors. My symptoms began in January of 2021, and I'm losing the ability to stand and walk. My care has been delayed so drastically that I don't have time to wait to get into a new Primary Care in order to receive the referrals I need to begin treatment. I need a wheelchair now, not in 3 months when I can they can squeeze me in. I'm scared, sick, broke, and depressed. I guess this is 30? I feel like everyone's been lying about how dope your 30s are now..

I need help. Financial, resources, physical assistance devices, and care. I've never needed help so badly in my life and it's really scary.

Donations help. One day you'll need help too. Happy to give any resources I have in return!

I also need access to a wheelchair asap and any community resources for newly disabled folks trying to navigate life.