Jessie Doyle Emergency Health Fund
Donation protected
Hi friends!
A while back I posted this GoFundMe as a wheelchair fund. I’m sorry to say things with my health have gotten rapidly worse.
I am effectively confined to bed for the foreseeable future.
More help would be appreciated from anyone who can/didn’t get a chance to donate last time. Please share it around too, post to Twitter, etc, it really helps.
Alright buckle up and CW:
What happened and when:
Sunday 3/20/22 I woke up with 10/10 pain, complete loss of muscle strength, and no coordination.
My spouse, Patrick took the day (now the week+) off work to care for me, take me to a previously scheduled doctor’s appointment (with a pain specialist, so I was hoping they could help).
Monday, 3/21:
The pain specialist, my primary care, and my therapist quickly made it clear to us that we needed to go the the ER.
I do have medical PTSD (therapy helps), so ER was still the last resort for me. We tried to manage at home but it was only getting worse, so on the night of 3/22 we went to the ER.
I received some pain management and that’s helping, but the ER doc essentially said, “That’s all we can do for you here. Keep seeing your specialists and try to sleep.” I said, “Ok I’ll try”, but there aren’t really specialists for Ehlers-Danlos in Alabama, I’ve been looking for years. Plus Insomnia has been another lifelong issue for me.
The days since then have been kind of a blur for me.
3/23 I was re-evaluated by my PT She said, “Omg what happened to you? This is so much worse than when I saw you a few weeks ago.” She helped with documentation for in-home PT and I’m hoping this puts a rush on the custom wheelchair process too. Numotion is doing their best, but our insurance keeps pushing back.
I didn’t really realize how bad things were until it hit the boiling point, y’know? What is it they say about frogs and water?
(I suspect having COVID in December/January sped things up but that’s for the doctors to figure out.)
What happens next:
A lot of waiting.
I can feel my body desperately trying to reach homeostasis, and every day I feel more like myself for longer periods of time, but it’s scary and I am having mood swings/melt downs (I was warned this could happen with a recent medication change - I just had no idea it would be this bad.)
My body just isn’t moving/holding me up the way I want it to anymore. That’s kind of the whole deal with connective tissue disorders. More info on that below.
In January, I had gotten a lead from a sweet local EDS support group member on an Internist (type of doctor) who may be able to help. Like everyone else I think, I’ve been in burnout and just forgot/put it off. New patient paperwork has now been sent as of 3/25.
He refers to specialists though, and we need in-home help now to get me ok to leave the house again.
We’re a looking into what programs Patrick’s work has in place for emergency family medical leave, applying for disability benefits, Numotion is still working to get me my custom chair, we are looking for the fastest option for a home health-aid, case manager, and in-home PT so Patrick can get back to work asap and I don’t fall behind on my appointments again.
We don’t know how long this will all take. We’ve been told to expect weeks to months, at least.
My diagnoses, if you’re curious:
In 2018 I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, a genetic connective tissue disorder that causes “double jointedness”, chronic pain, heart/circulation issues, and a whole slew of other conditions that can be quite debilitating.
Check this out for more info on EDS: https://www.ehlers-danlos.com/what-is-eds/
I also have Dysautonomia (maybe specifically POTS, awaiting testing by UAB). For me this means dizzy spells, tachycardia, and fainting from physical activity.
I just found out on 3/17/22 that I also have Epilepsy. Hence the new medication.
And those are just the diagnoses I consider the most debilitating.
If you’re impressed, imagine how I feel
— Mirabel, Encanto
Mobility aides:
I’ve been using a rollator for about 3 years, but it just doesn’t cut it anymore. My ability to get around on my own has been declining for a while now.
I’ve been evaluated for a manual chair with a Smart Drive through Numotion, but insurance only covers so much. The estimated patient responsibility is $3,780.52. I have to pay that up front before placing the order. And that’s only if insurance agrees to cover it. If insurance refuses to pay, I’ll owe the full price for the custome wheelchair, about $10,000 for custom chair + the drive.
We have other costs too, such as paying for the ER bill when it comes, medical equipment needs, retro-fitting the house to make it accessible, probably a wheelchair lift for our car… so much.
I now have a cane that I use to sort of hobble the 5 ish feet from bed to bathroom then back to bed. Huge improvement from Wednesday, but it comes and goes.
My Dad generously purchased a push wheelchair to make it a little easier to get to any upcoming appointments. That arrives 3/29.
I thanks for reading this far - here’s a cookie
Fundraising team (2)
Jessie Doyle
Organizer
Madison, AL
Greg Walton
Team member