Here We Go

I never considered writing a blog, until about a week ago.

A week ago, nothing happened. Nothing about me changed. Nothing made my husband look at me differently. Nothing surprised me. And yet, everything came to life. A week ago, I received my diagnosis of Ehlers-Danlos Syndrome (EDS). EDS is a group of connective tissue disorders that range in severity, but all are systemic and affect many aspects of health. I am most severely affected by my joint hypermobility (leading to frequent, disproportionate injuries including subluxations), IBS, easy bruising, headaches, chronic pain, and chronic fatigue. In effect, I am fragile.

My diagnosis was not a surprise - in fact, I had put the pieces together for myself a few years back in physical therapy school, and realized that I had EDS. I thought nothing of going to get my official diagnosis. If anything, I was a bit nervous that the doctor would decide I was not disabled enough for this diagnosis, even though I knew I had it. To my relief, she immediately recognized that I am seriously affected by my EDS. She told me, "Consider yourself officially diagnosed," and referred me for routine follow-up testing while prescribing me hand therapy and a prescription anti-inflammatory medication.

So why, when I got home, did I feel an extra weight on my chest? Why did I feel almost demoralized that I now had an official diagnosis for what I already knew I had? Why did I feel scared, and consider quitting aerial silks, which I enjoy so greatly despite the hand pain?

Maybe the reality of my situation, and the debilitation that may follow through the years, felt more acute. Maybe I overreacted. Maybe my feelings didn't change at all, but I felt more legitimized to express what I had already been feeling.

Regardless of the reason, though, I decided to begin chronicling my daily trials and tribulations - the good days, the bad days, the days I can barely get out of bed, the days I feel energized, the days I push myself through the pain, the days I can't push through the pain, and even some of my history and how I got here.

So, here we go. 

Comments

Post a Comment

Popular posts from this blog

Revival - Concussion, not-Hernia, and CSF Leaks

Since I last wrote a blog post, the world feels as though it has gone into a total meltdown. COVID-19 continues to rage around the globe, even as the first batch of vaccines is rolled out to healthcare workers on the front lines. Party tensions run high in the US government and trickle down to the public daily. Global climate change brought another year of extreme storms and draughts across the world. And inequality continues to rage through even the reportedly "civilized" corners of the world. Meanwhile, I have gone into a physical meltdown. Family and my therapist maintain that I have not been the same since I sustained a concussion at work in November 2019. This was my third concussion, and I was out of work recovering for 6 months. I finally returned to work in May 2020 during the chaos of a global pandemic and spent 1 month treating through telehealth followed by another 3 months treating a full caseload primarily in person wearing full personal protective equipment.  Th...
Read more

Grounding myself

I am terrified that I won’t fly again. There. I said it. My neck has been getting worse, as have my headaches, random dizzy spells, and sensations of pressure in my head. I have never had an upright MRI, so I do not know what exactly is going on in my head and neck region. But while I search for a neurologist or neurosurgeon to help me out right now, I DO know that I do not feel safe during sudden movements or certain changes in position. Hitting a pothole while driving can be agony. Tripping over a sidewalk crack while walking can give me a 3-day-long headache increase. Bending down to the bottom shelf of the fridge can send me almost to the floor. So how can I even dream of climbing 20 feet up to the top of silks, hanging upside down while setting up a move, then letting go and completing a drop? And yet I do. I dream. Awake, I dream of aerial. Asleep, my nightmares reflect the stress and fear that my neck may be as bad as it feels. But awake, with my eyes cl...
Read more

Functionally Dysfunctional

Image
“Yo ur autonomic testing was pretty bad. I don’t understand how you’re so functional.” These words were spoken to me by my dysautonomia specialist this week. And they were so validating. Not because I want to have a dysfunctional autonomic system. Believe me, having a “normal” body is what I want most in this world right now. But because I put in so much work to stay this functional. And I couldn’t do it without this wonderful doctor, who truly sees me, understands my suffering, and actively helps me find solutions. But then he pointed out to me, “you must be pushing past your limits.” And that was equally true and validating. People see me push past my limits when I climb mountains, or hang on an aerial hoop, or go to work straight off an international flight spent vomiting from food poisoning. But people don’t see that I constantly exist on the edge of a crash. I pull myself out of bed and drive to work each morning, taking handfuls of prescribed medicatio...
Read more