Long Time No See
It’s been about a week since I’ve been on Tumblr, but a lot has happened. I remade, so I have a new Tumblr that I have been using to find a community on here to help with what’s been going on.
A lot of you are friends from high school, and so you might not know what I’m talking about.
Hey guys, it’s Rachel. And I’m officially disabled.
Many of you don’t know this, because I never talked about it. But I live with chronic pain in my joints. It started in my feet and knees 10 years ago, and has since spread to my hips, back, ankles, ribs, shoulders, wrists, elbows, hands, basically all my joints. Please before I go on, understand that some days are worse than others. Some days the pain is negligible. But it’s always there.
You may also know that I’m fainting, I’ve been having fainting spells for over a year now. And I’ve found some answers. After a long, long time.
I’ve been essentially diagnosed with a condition called Ehlers Danlos Syndrome, but before I can get any treatment options, I have to see a geneticist to diagnose my subtype (there are 13) and I won’t be seeing a geneticist until April 30th because they only see adult patients twice a month and I did not get lucky with an appointment! But that’s okay, knowing is half the battle.
As for the fainting, people with EDS apparently are also more likely to have a condition called Postural Orthostatic Tachycardia Syndrome (POTS) which basically means that I don’t get enough oxygen to my brain and I pass out when I stand up. This I’m looking into with my cardiologist on Thursday, as I have not been diagnosed yet.
The reason I am making this post is purely selfish. I’ve been struggling in the last year with flare ups, my pain has gotten worse and more frequent, and I’m now in the market to begin using mobility aids to help myself get around. Without trying to scare me, my physiatrist yesterday introduced the idea of braces and splints for my joints, a cane or walker, and in his words “more likely in the near future, a powered mobility aid.” Which I took to mean wheelchair, he said a scooter may help also.
I’m not telling you all this to scare you, I’m really just trying to find a balance in all of this. So that’s why I’ve remade, if you guys want any more updates on my journey becoming a teacher with an invisible illness, message me on this blog and I’ll tell you the URL! All of you are welcome to follow me on the new blog, and I mean all of you. The only reason I haven’t posted the URL straight away on here is because I’m hesitant for future employers to know about my disability straight away. I’m sure that all may change but I’m not here to exclude any of you from my life, and I will follow back all my original mutuals on the new blog. I’ll try and use both, but this one probably will not have any more medical or personal updates from now on.
Thanks for reading! Hope you guys have been well, I’ll see you on my other blog!
