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  • Writer's pictureSami

LIFE UPDATE - 4/12/23

I'm cured! Hahaha just kidding - but that would be cool though!


I doubt in my lifetime there will ever be a "cure" or streamlined treatment for EDS, but there is a lot of exciting research about which gene causes it. If you fancy a scientific read, you can learn about it here.


Today I went to a new primary care doctor who wasn't fully knowledgable on Ehlers Danlos (I just lucked out with my old primary care doc!). Did she type it in her notes as "Ailers Stanlos" yes. Yes she did. BUT that's okay because she was super nice and I wasn't going to her for EDS things! She said "what are you doing to treat it?" - that seemed like on odd question. I guess I'm treating the symptoms, but I'm not actually treating EDS itself. So what have I been doing? Well here's a little update for you:


1. I scheduled my surgery day (June 12th!)

  • I'm having a hip arthroscopy to repair a labrum tear and a CAM impingement. I learned about this 1.5 years ago, and the ortho told me if I wanted it fixed, I needed surgery. Well, I put it off for some time, but my PT told me last month the time as come. I went all the way to Seattle for a 6 minute appointment to which the ortho doctor said, "well I told you a year and half ago you needed surgery... you still need surgery"

  • Crutches for 2 weeks, 3-4 months to feel recovered

  • I'm not feeling nervous for the surgery itself, just the recovery. I don't think I will be good at not moving my leg very much!

2. I had a sleep study AND a nap study

  • I had two nights of an at home sleep test. It was quite the contraption, but at least I got to sleep in my own bed

  • The nap study was super interesting: first get hooked up to a bunch of wires, 20 minutes to nap (if you can), then 1.5 staying awake - repeat 5 TIMES. I think I'll write a full post about this once I know the results in 2 weeks!

Did you know Nap Studies existed?

  • I had no clue!! (don't worry neither did I😂)

  • I already knew!


3. I got fit for ring splints

  • I had an appointment with a very EDS knowledgable OT who fit my fingers for ring splints. No, not the splint you wear when you break a finger. These are silver ring splints that look like regular rings (sometimes just a little fancier looking).

  • The rings help keep your finger joints from subluxing or dislocating. My left ring finger goes out pretty much everyday, and my right middle finger goes out occasionally. These should help eliminate that!

4. I got more Prolo shots

  • Apparently my ankles are quite unstable... whoops! And my right one has been have a lot of pain. I most likely had a tear of some sort around the subtalar joint. Off to get more shots!

  • I'm so used to these shots now. Supposedly the ankle is a more painful location, but it didn't feel that bad to me. I also have a delayed reaction to numbing medicines (apparently that's an EDS thing!) so I feel the shots most of the time.

  • My ankles were super swollen and it was painful to walk. What did I do? Taught dance for seven hours -DON'T DO AS I DO.


5. I get to go see a cardiologist

  • I went to primary care to hopefully start ADHD meds, but I came out with a referral to a cardiologist

  • Apparently the meds I take for POTS mixed with the ADHD meds I want can possibly cause heart issues (like high blood pressure) , so the doctor had me do an EKG. Well lucky me, it came out with an arrhythmia. Now I need to wait to see a cardiologist so they can sign me off before I can get some ADHD meds!

  • I'm not worried about the arrhythmia. I think it was just a fluke or not significant. I had an echo about two years ago that came back clear, so I'm not concerned!



 

Is that it? I probably missed something, but I thinks that's quite enough!


My saving grace is always physical therapy. Besides shots (that sometimes work), PT has been the only thing that really provides me relief. I'm so incredibly thankful for my PT and all the help she gives me!


I continue to just roll with whatever this EDS body brings me and try to listen and learn from it the best I can. I'd rather have an alphabet of diagnoses attached to myself than go back to being not believed! 💕🦓




Stay Kind. Be Brave. Much Love.


Sami

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