Some people use cyber Monday sales to buy Christmas presents. I took advantage of the cyber Monday sale at @medicalertfoundation to get two Medic Alert bracelets, as even just the highlights wouldn’t fit on one. My #mastcellactivationsyndrome has been bad, and I’ve been having multiple #anaphylaxis episodes a week. It turns out I have become highly sensitive to most scents and perfumes. It’s why you’ll see me wearing a #vogmask all the time. If you can remember not to wear scents around me, I’d really appreciate it! I’ve already been through 15 #epipen so far, and have too many holes in my legs… 😜 Love you all! 💜💜💜
Category Archives: Ehlers Danlos Syndrome
More ER Woes
I don’t get the point of EpiPens. If you use one and it breaks your symptoms, when you get to the ER they call it a minor allergic reaction. It doesn’t matter that my tongue felt like it was swelling and my chest getting tight right before I used the pen. I started becoming out of it and lost my speech again in the ER, and they simultaneously told me a third dose of epinephrine wasn’t indicated, but that I should also have three epipens at home so I can treat it myself there. That wasn’t the only time they contradicted themselves. They tried to get me an ambulance to take me home because I could barely move, but told me I would have to pay as it wasn’t medically necessary. This is how ERs and the American industrial medical establishment is killing us young women with rare chronic illnesses like ehlers danlos and mast cell activation syndrome. At least I’m home now. I’m never going to Denver Health again.
These boots were made for walkin. When you have Ehlers Danlos Syndrome and a partial spinal cord injury from Craniocervical Instability you need all sorts of braces to function better. These are my new AFOs (ankle-foot orthoses). My old ones didn’t support my feet enough, so I had to upgrade. The old ones looked like shin guards, so hopefully with these people won’t ask me if I’m a soccer player…
Official Ehlers Danlos diagnoSis
It’s official! It took five years to get here, but we finally made it. I just heard back from genetics. Genetic testing for Classical Ehlers Danlos was normal, which means I have hypermobile Ehlers Danlos Syndrome by clinical criteria. The zebra is because thats what us EDSers refer to ourselves as. It comes from the med school saying that when you hear hoof beats, you shouldn’t think zebras – meaning common stuff is common. I guess, sometimes you should think zebras…
Shaving my head
I’ve always wanted to shave my head. Between being in a neck brace 24/7 for the next few months, and losing a good chunk of hair with the eventual fusion, I decided it was time. I’m pretty happy with the results.
A smoking gun
This is the smoking gun, so to speak, for what’s going on with me. If you’ve seen me in the last few weeks, you’ll know I’m wearing an impressive neck brace, but it lets me talk. This angle is the angle between my neck and my skull. That should be around 145, and less than 135 needs surgery to fix. The reason being my brainstem (which controls most of the vital functions in my body) is being stretched over that point. This is happening from weak ligaments from the connective tissue disease I have, Ehlers Danlos #ehlersdanlos . The part of my brainstem that’s getting poked let’s me talk, so as soon as I take the neck brace off, the speech problems come back within seconds. The fix is to have my skull fused to the first two vertebrae, and I’m in the process of finding a surgeon. I’m looking into one in Colorado who takes Colorado Medicaid #healthfirstcolorado , but if @sencorygardner and @senbennetco vote to pass a bill that cuts funding to Medicaid, I will lose my insurance and have no way to stabilize my neck. The neck brace isn’t perfect, and despite the improvement I’m still declining slowly. Never mind the fact that Medicaid pays for the IV nutrition that I need to live. Call your senators and urge them to vote no on any bill that cuts funding to Medicaid. The tax cuts will only benefit the uber wealthy too!