Well, I'm not sure how it happened, but it's been a little over a year since being diagnosed with Hypermobile Ehlers Danlos Syndrome. I figured I would post a little life update on how things have been going, especially since it's been a hot second since I've posted!
1. I have continued to learn about EDS
Favorite Book about EDS: Understanding Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder by Claire Smith
Favorite Podcast about EDS (especially dancers with EDS!): BendyBodies
2. I have tried new treatments
Most recently I've been doing Acupuncture/Dry Needling
I'm getting a device for my mouth next week
My bruise that lasted 4 weeks from dry needling😂
3. I have re-visited old treatments
I had another Cortisone injection (+ some other fun)
I'm getting Prolo Therapy
4. I started a ZeBrave Instagram
A few of my students convinced me to start an instagram account, and I am thankful I did.
I always have guilt and weird feelings about posting about my chronic illnesses. I don't want it ever to be perceived as "oh poor me." Truly I started this blog as a way for me to record all of my trials/errors and help other people; the instagram has just become an extension of that. EDS is not publicly know, and I am happy to put out my story in hopes of helping others. When I get messages from my blog or instagram saying that I helped someone, it makes my day.
There is a really awesome little EDS community on Instagram. It makes me feel so validated about my experience, and has helped me feel like others are going through similar experiences.
Also it's just fun to be goofy because that's who I am!!
5. I have hope of feeling better
I have come to terms that I will most likely never not have pain. However, I feel like I am on the road to better pain improvement and management.
My hip pain has significantly improved since doing prolo therapy, getting good orthotics, and working with my PT.
I am (sometimes) able to get my shoulder back in if it subluxes. Silly shoulder just really likes to sublux and then get stuck!
I will be honest, I am awful about just pushing myself through pain. I know I can push through, but that really doesn't mean I should. I've been trying my best to figure out how to still teach, but adapt when I know I need to reset.
My PCP (who diagnosed my EDS) started Washington's first EDS Clinic! I'm so excited for her and can't wait to do my first visit.
Okay, I guess a lot has happened recently! Thanks for being a part of this journey with me. 💕🦓
Be Brave. Stay Kind. Much Love.
Sami