Well hello there!!!
It's been over 5 years since I've posted on here. As expected, a lot has happened, but I will not recap all in this post. I'm coming back as I need a place to type out my thoughts.
On May 13, 2021, I was officially diagnosed with hypermobile Ehlers Danlos Syndrome. I say officially, because I kind of self diagnosed myself based on the 2017 criteria, but I wanted a physician other than myself to diagnosis it.
Since I have last posted, the world has been experiencing a pandemic. I remember sitting in medical school, attending a lecture on avian flu and fearing if it became a pandemic we would run out of ventilators. Well, it's not avian flu, but sars-CoV-2 that is using up our ventilators. I could go on about the pandemic and my thoughts on American society's response to it, but that's for another day.
Ok, so since my last post 5 years ago, I had some significant hip pain. Long story short, I had a right hip labral reconstruction with the IT band of a cadaver and some bones shaved down in my hip. That was December 2019. Then by summer 2020 when I started doing yoga again, I was having thumb pain so badly it was waking me up at night. August 2020 I was diagnosed with thumb joint CMC subluxation. I was told to brace it and it would get better when I hit menopause. I was 36.
Let's fast forward a couple of months. I referred myself to occupational therapy for my thumb, stopped doing yoga, kept trying to focus on my hip PT, and then, thankfully, the scientific community developed a vaccine to help prevent severe infection from sars-CoV-2. After my first dose of my Moderna vaccine I had a horrible headache for a week. I felt like I could hardly hold my head up. I also learned a dear patient tragically passed away at this time. I contributed my headache to my grief and not being able to sleep thinking about losing a child so young. A couple of weeks later I had my second dose of the Moderna vaccine. After my second dose I had the same headache, but this time I also had horrible TMJ spasms that lasted about 6 weeks. I also felt unstable in every joint that ever bothered me. I remember laying in bed, trying to tell my body if I fell asleep my TMJ pain, headache, hip pain, thumb pain, back pain, ankle pain, and calf pain would feel better. It was that night I realized, "this isn't normal, you need to figure it out." I had been toying with the idea I had a hypermobility disorder for a couple of months. My astute physical therapist brought up that I was hypermobile in almost every joint, and then I found a podcast about labral tears in hypermobile individuals and things started falling in place. I am currently still figuring out how EDS and it's comorbidies are affecting me, but I feel like I'm finally in a place (and with a great EDS specialist) to put the pieces to together. I'm also figuring out how to accept I have a chronic illness and to give myself grace that I cannot work as many hours as I expected, be a mom and wife, and take care of myself too.
Looking back, I see multiple times other physicians may have been able to identify signs of my hEDS, but honestly, I think they probably didn't know enough about it. If I knew I had hEDS, the only thing I probably would have changed is my exercise. I wouldn't have done hot yoga after my long runs while training for half-marathons. I can't help but think about all of the micro tears I gave myself during those years. I'm also making it my goal to help identify hypermobility disorders in my patients earlier than identified in me. I also can't help but wonder if the COVID vaccine caused an MCAS flare, would I still think I was just clumsy and prone to injury and joint pain? It's weird how the world works.
Oh, and yes, I'd still get my covid vaccines!
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