My World Turned Upside Down

Anyone that knows me knows I hate asking for things for myself. Others? No problem. But myself.... 

TL;DR: My body took a shit, diagnosed with hypermobile Ehlers danlos syndrome, dysautonomia, and general chronic pain. Lost my job, found out I need hearing aids, got a wheelchair of my own but no way to take it anywhere. Looking for work desperately but I don't have enough job background between mental and physical disabilities. Basically I'm out of a job and have been for months without luck. Hubby works his ass off and when he's not working he's doing postmates to help get everything he can, meaning barely any time with our kiddo. I need hearing aids and they average on the cheap end at $3,000 per ear, I need help getting an accessible vehicle so I can get to/from work with my wheelchair so I'm safe. I need help with getting something to track my heart rate 24/7. 
Any little bit will be very appreciated.  

The long story is....
January 2019 I was working at my favorite job I've ever had as a certified automotive technician and was always in pain... my doctor sent me to a geneticist and I found out I have hypermobile ehlers danlos syndrome and dysautonomia. Explanation? My joints fall out of place all the time at random because my collagen mutates to where it's not strong enough and my body and heart don't do things right. 
So, obviously I couldn't  keep doing the work I was doing, but oh did I try. I loved my job and desperately miss it. Of course, my body rebelled. It started actually really falling apart faster and faster. I started fainting, falling, and losing my balance. I can't be in temperatures above 80 degrees- not easy given I live in Southern Arizona... 

I went to a neurologist in June and started getting somewhere with pain management, both are going okay even with the millions of tests and biopsies and bleh. Then in July I went to an ENT to discuss getting my tonsils out as I'd been advised to since I was a child but moved around too much... Well they offered to test my hearing while there and I figured well, why not... BAD NEWS. I need hearing aids desperately. Shit. Now my body is going where I can't afford. My insurance won't cover it. So, I research information about it... No one will help without us paying 500 down minimum. Not something we ca afford given we're living paycheck to paycheck. Alright, I can hear well enough to do some work, I guess... 

And the end of july started... My shoulder I'd previously dislocated starts acting up and I go to PT and find out it's falling out of place over and over every day... because I need more, right?... Fine find an ortho and he wants me to do a total of 6 months of PT because he is scared to do surgery on me because it could make it worse or it could help then happen again immediately after.  Alright, I can understand that. But. That basically means I can't get a job where I lift more than 15-20 lbs. And that's a really big restriction given my lack of job background. Ugh. Okay. Clerical only it is then.

Come October I find out my heart is really having fits and I need to see a cardiologist and my doctor recommended getting something that tracks my heart rate that I can wear 24/7. Fine. I go look... ONE HUNDRED DOLLARS?! Fml. 

Basically I'm out of a job and have been for months without luck. Hubby works his ass off and when he's not working he's doing postmates to help get everything he can, meaning barely any time with our kiddo. I need hearing aids and they average on the cheap end at $3,000 per ear, I need help getting an accessible vehicle so I can get to/from work with my wheelchair so I'm safe. I need help with getting something to track my heart rate 24/7. I need thumb splints for both hands. And on top of it all my kiddo is showing signs of it, too... waking up screaming that her joints hurt... 
Any little bit will be very appreciated.  

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Organizer

Justyne Millward 
Organizer
Tucson, AZ
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