I need a loyal (and portable) steed!

Your resident bed mermaid needs some help. 

Hi! I’m Karissa, Artemille pretty much everywhere. 31, agender, queer, neurodivergent, always tired.

I was recently diagnosed with Hypermobile Ehlers Danlos, Ankylosing Spondylitis, Fibromyalgia, Costochondritis, and a larger leg length difference than I thought I had. 

I’ve suspected I had Ehlers Danlos for a while. I was born with a leg defect caused by dislocating my knee before I was born. It essentially grew in backward. I’ve always had to accommodate for it growing up, but never thought of it as a disability. As I aged, it creeped more into my daily life. I dislocated my knee in high school and damaged the tendons in a way that from then on my knees easily partially and fully dislocated regularly on both sides. I was always told there wasn’t anything to do but brace. Chronic pain became a regular thing and I was even more limited.

Despite my family members showing symptoms when I was a kid, I never heard of Ehlers Danlos until adulthood. There was a big “wait, those are all things my body does too” moment. It was suggested by a few medical professionals, but it could only “officially” be diagnosed with a geneticist. So I finally did that, after a long waiting list, at age 31 (this year!).

2020 is also the year I quit my job right aftergetting a promotion the year before, because Iwas losing my ability to stay standing and walking long enough to perform the job. I had a pain in my hip that wouldn’t go away and near constant exhaustion. I started getting sick just from standing. 

I spent this year seeing 22 doctors and physical therapists, getting almost my entire body imaged by MRI, CT, XRay, Ultrasound, being tossed from urgent care, to Rheumatology, to Orthopedics, to Neurology, to genetics, to Cardio, to ENT, back to Rheumatology. 

Ankylosing Spondylitis and Ehlers Danlos/Hypermobility don’t really mix well. EDS makes myjoints loose and has caused osteoarthritis from rubbing together in most of my joints in my spine, legs, and hands. The physical damage along with other factors causes inflammation, which triggers the AS, an autoimmune disease, to further damage my joints. In the attempt to heal itself, AS causes extra bone growth that can fuse joints together. 

So basically, I’m loosely put together and my joints are floppy...until they’re not.

It causes severe, persistent aches, physical and mental exhaustion, and makes me a big fall risk. After exercise I’m wobbly like a marionette; after rest I am stiff like I was glued in position. AS brings along Costochondritis, which gives me chest pains and can make breathing hard, and Fibromyalgia, which causes nerve issues and trouble with memory and speech. Both EDS and AS upset my digestive system and skin.I lost my gallbladder and my liver is often irritated. Inflammation brings Hidradenitis Suppurativa flares that can limit my arm and leg movement with sores. 

A lot of the progression of this happened in the past year. Before I had a few canes, and a walker I got used at a thrift store. I’ve been home through most of Covid, and since I’m starting immunosuppressants, probably will be doing more of the same until a vaccine. Either way, a wheelchair would greatly increase what I can do, and my endurance for being out. I often find myself unable to finish a grocery shopping trip despite leaning on the cart. I also have to get 1.25” external lifts built into all shoes I want to keep wearing when I walk (also wearing a lift after 3 decades of not knowing you needed one f’ing hurts!).

Because I rent a townhouse with stairs, and drive a tiny car, and want some flexibility, I want to get a folding lightweight electric wheelchairlike this:

They weigh a little bit more than a 5 gallon jug of water and fit in my little hatchback. It’s about what I can haphazardly lug in and out of it. It has just what I need to make more places accessible.

I’m asking for $3,000, which is about enough to buy one of these new, and some needed shoe prosthetic alterations (I’m limited to one pair by insurance, and they’re $100 each after).

So, maybe help a tea chugging, tired creaky dream cryptid out?