The name is Felicia, but I generally go by Sammy. I’m 31 and I have Ehlers Danlos Syndrome, the Hypermobile type. I’m also disabled beyond that, with Post Traumatic Stress Disorder from a violent assault/break-in in 2015, ASD, and Bipolar Disorder. I have worked since I was 19, quite hard honestly, but never have I managed to be able to hold down a full time position due to the level of pain I was in on a daily basis and my inability to sensory process things on a level that wasn’t overwhelming (and depression/mania cycles and anxiety also played a role, too, honestly.) Eventually, I got my mental health under control. Mostly. Things were going good until a break in sometime in mid-August 2015 and nearly being strangled to death by a complete stranger traumatized me to the point of near agoraphobia and constant flashbacks. I have been working with several medical providers to get better and have made strides, but it’s only so far. Pain makes it, as you imagine, more difficult. And when you’re constantly getting sick and dislocating things, getting to appointments is further complicated. I had to drop out of college a few years ago due to this pain and haven’t been able to afford to go back. In the meantime I work as a mentor to at risk and homeless K-4 youths. I love my job and I love my kids, and I’d never change it, but it’s hard to put my game face on a lot of days. And I can’t do any amount of lifting, and need to be in a chair for intensive days. I also, as of six months ago, take care of a 60 year old mother who has serious health ailments and has not been able to work. It is a full time occupation in and of itself, and two months ago a care facility utterly neglected her care to the point that septic shock set in and she nearly died. With an 80% chance of not surviving, a miracle happened, but things are tough. Especially when none of us are working, now, and rent and bills are due. She gets LTD but it’s only 66% of what she earned before. As for me, after ten years of being told I was a hypochondriac or that I have Multiple Sclerosis or other disorders that made no real coherent sense, I saw an amazing pain specialist this year who diagnosed me with Ehlers Danlos Syndrome and it has changed my life. I’m finally getting supports I need in order to flourish and not struggle. The downside is that on state insurance, only a certain number of medical supports can be approved per year. I was furthermore denied a CADI waiver because I ‘dress well’ and am ‘intelligent.’ I don’t feel that if a corpse during an open casket is capable of fulfilling one of these, that it should be used to be denied people services they need, especially if they require complex care. Because they certainly can’t work a full time job, and neither can I, intelligent or not. Yet here we are, and here I am, out of a service that helps pay for bracing for complex and rare conditions like mine.
Which brings me to my point: Custom pieces are expensive. Thumb splints are $200+, easily through SIRIS. I had to order five today (one is a non-SIRIS brace for wrist dislocations), with only four covered, so I’m already $160 in the hole, as a disabled person not working for the rest of the summer. And I need to order more splints. Two for thumbs, and to cover one of my fingers that won’t be paid for by insurance. What about my other two fingers?
I’m using etsy to bridge that gap. I can get cheap splints made of silver until next year here, for $60 total: https://www.etsy.com/listing/264918911/silver-ring-splint-standard-dip-or-pip?ref=hp_rv
As someone who makes like $100-$300/month while waiting for SSI, this is *very* expensive. And I hate begging, I truly do, but anything helps. Especially because these fundamentally change my life by reducing my pain significantly.
I made a plumfund to help with the extraordinarily horrific costs of affording all my braces and care this summer. So uh, if you could chip in even a couple books or share this it would be incredibly fucking appreciated. Like please. I am begging. You can’t see me, but trust me, I am on my knees right now.
