Fifteen Years

I posted this on facebook on the actual day and wanted to post here too.  Fifteen years...quite a landmark!  

15 years ago today I got a chiropractic adjustment on my neck that went very wrong and I see it as the turning point of when I officially became sick. Though I was born with Ehlers Danlos Syndrome, I didn't know it at the time, and still managed a pretty normal life going to school, playing soccer, traveling, and dreaming without many of the limitations I have today. I had a very different life envisioned for myself.

Because of that neck adjustment, I had a stroke and tore some ligaments in my neck. I was lucky that I had a good neuro recovery from the stroke. I learned to walk again pretty quickly and got used to reading at a slower pace. But since that day, I've never been healthy.

I developed POTS and learned to live with a resting heart rate in the 90s-110s. It's exhausting. The chronic pain I'd had since I was 9 years old became a much bigger issue. I've had spinal cord injuries because of the instability in my neck, developed some seriously strange allergies, stopped absorbing many nutrients, had SO many huge surgeries... the list goes on. Literally for pages! More recently I've been struggling with unstable adrenal insufficiency and CSF leaks. It's been extra rough since 2016. Each piece of the puzzle that's figured out takes months or years of doctors appointments, tests, and lots of "are you sure it's not just that you're a weak woman?"

One thing I can say for myself is I never stopped living. Yes, I need to rest a lot, and I have to do things differently, and I'm pretty uncomfortable most of the time. But with lots of hard work, support, and an increasingly amazing healthcare team, I do have a life. While the last 15 years hasn't been what I'd expected, I've done some amazing things, met so many awesome people, and most of the time I'm pretty happy.

I made it through college on the slow path, even studying abroad (after two previous failed attempts). I went to grad school on the other side of the country and became an OT. I lived in NYC, and even though I had to move back home, it was everything I thought it would be while I was there. I got over a needle phobia and faced my fear of public speaking to raise funds and awareness for causes important to me. I've lobbied congress for better healthcare and helped create local support networks for people with chronic illness. When I couldn't find accommodating work, I started my own OT practice so I could continue in the career I loved. I found so many tiny ways to celebrate life and go on little adventures when I can't manage the big ones. I have so much time to devote to hobbies and lifelong learning. I've found over and over again resilience as challenges piled up. I have a closeness with my family and friends that grew from my extraordinary circumstances and my dependency on others. I have a lot of love in my life and truly know how lucky that makes me.

It's not the life I expected or wanted, but I think little me would be proud of what I've done in the past 15 years. I think I've done pretty well with the cards I've been dealt. So many opportunities have come out of adversity and I am very much grateful for that. I wake up each morning happy to be alive and excited about the day. I know that alone makes me one lucky duck.

To everyone who had been here with me, I truly can't thank you enough. It takes a village and I have an exemplary one.

Just like everyone else, I'm not sure what the future holds, but I'm always hopeful and always looking forward to it.

So happy "sickiversary" to me! It's been a crazy 15 years full of the best and worst times of my life, adventure, adversity, joy, and perseverance. Thanks for sharing the journey with me.

I'll be adding some photos with captions in the next couple of days. More good times then bad!