Friday Night Outings

Today was a rough day.  I took a mile walk yesterday.   Today my back is hurting so much.  And I had a very emotionally draining day at work.  I came home and laid on the heating pad for a little bit, now I'm here journaling and I'm about to log back into work.  What sucks, is my daughter wants me with her at her school's carnival.  I want to be there and I hate that my body needs to be home.  I hate that I have no energy to do things on Friday nights anymore.  And honestly, if I didn't realize I forgot to send in a prescription, I'd still be in bed on the heating pad right now.

How COVID helped me identify my hEDS.

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!