I started a website to help other people with my condition, and my condition takes me out of service for months. Go figure.
I have had ZERO energy or patience lately. My body is rapidly declining and no one really understands that. I have the worlds most supportive husband and the best medical team a person could have with EDS, but it’s just not enough.
Sometimes I just cry because I am so damn frustrated with my body.
I had to go into the prosthetic place, (which I actually love, they’ve seen quite a few people with eds and hypermobility disorders so I am in good hands) and get the left side of my hip brace so my other hip stops compensating for the other one being healthy, which I didn’t know was a thing.
I love it, it is a brace from Donjoy and my insurance covered the whole thing (1,000 US Dollars)
It is bulky, but it supports my loose sI joint as well as my very loose hips. When I first put them on I was in tears because it felt so great to be normal.
How did I get them?
I asked my doctor if I could get any braces and she wrote a prescription to the prosthetic place in my town. They do all kinds of bracing, not just for a prosthesis. The brace place called me the first time, as my doctor called them to talk about the options and to verify the prescription. Then I made an appt to get my hip brace, and they customized the fit to the T, and I left that day with my new brace. The second time I had an appt with my doctor and told her I was having issues with my left hip and she wrote an actual script which I took into the prosthetic store and they scheduled a fit for me next day. Ask your providers for this brace if you have issues with dislocations and subluxation sin your hips. You can also ask for braces for any part of your body, I am sure you can find someone to get them for you, you just gotta do some investigating and be forward. Advocate for yourself when you can!
Other news, I randomly developed an allergy to literally all adhesives. I always thought how crappy it is when EDS’ers have this allergy and how lucky I was to not have developed it. I thought too soon. Even my Roc tape gives me bad rashes and hives. I use the tape to stabilize almost every joint, my hips on not bad days, knees most of the time, and wrists a lot of the time. No more of that. COMMENT BELOW to recommend me some hypoallergenic adhesive stability or K-tape!
I am still using kratom to control my pain. It still works great, although my tolerance is a bit high and I have to take a lot more than before. I go through an amazing supplier called Kat’s Botanicals.
You can get 10% off your first order with the code: REFMSTAB7N6HJ
I get 10% off my next order as well!
Kratom is one of the only things that works to control my pain. I do take tramadol, gabapentin, robaxin, and way too much NSAIDS paired with acetaminophen, but the other day I had my first aura seizure from the tramadol because I did not take my gabapentin, which helps to lower the seizure threshold because I do take the maximum dose. I am leary of taking Tramadol now, only on severe pain days paired with my gabapentin. Stupid.
MY T-SHIRT in the above photo: https://www.bonfire.com/cheyenne-alano-club-fundraiser/
You can buy this t-shirt through a Bonfire campaign I started to help support a non-profit my husband and I started to help people addicted or family members of people who are addicted to getting help. We are a registered 501C3, and all the money goes to operation costs, and continued fundraising costs. The website can be found here, and you may also donate to them any time here.
K, that all for now! I promise I am coming back and creating more content and offering more resources. Thanks for sticking by me!