My life now is very different than it used to be; because of my condition, I can’t do as much as I used to.
As a kid, I was always trying to keep up with everybody; I never felt like I was the healthy one. When someone got bronchitis, I got pneumonia, or if someone got a gastrointestinal bug, I was going to get it. It always seemed like an acute illness would trigger a downfall in my body, but then it would resolve, at least for a while.
As an adult, my dream was to work at a prestigious children’s hospital. I got really lucky at 24, after earning my Master’s degree, I accepted a position in September 2004 as a child life specialist in the leukemia/lymphoma patient unit of the hospital and moved several states away, working there until July 2006.
But I got pneumonia and was out for four weeks. It just threw my body into a complete tailspin. I finally got back to work but I was struggling. I couldn’t breathe and I couldn’t walk very far without having to rest, and I was having multiple fainting spells daily making it difficult to keep up with my patients.
That was when I was sick enough that I needed to leave work.
That also started six months of tests with dozens of doctors. I ended up at the Mayo Clinic where they conducted autonomic nervous system testing. The doctors at Mayo told me I had dysautonomia affecting my nervous system and postural orthostatic tachycardia syndrome (POTS), which causes heart rate increases and dizziness. They said I developed dysautonomia as a post-viral response to pneumonia, and that it might be debilitating for years before I could fully recover.
So, in August of 2006 after leaving the Mayo Clinic, I took long-term disability from my employer and moved home to my parents in New England, thinking that, in a few years, I would get better and return to work. But in October of 2006, I had my first stroke. I lost the use of the right side of my body, my speech was messed up, I was incontinent. It was a terrifying experience.
I had a friend I’d met earlier online through Caring Bridge. She has mitochondrial disease and was convinced I did, too. She connected me with her doctor- a mitochondrial disease specialist in Boston. We sent my records and 24 hours later, her doctor asked me to come to see him. He gave me a clinical diagnosis of mitochondrial disease right away. That was ’08. Finally, I had a name for it.
Unfortunately, my body just isn’t reliable enough to go back to work. I also have dystonia, a movement disorder that I can control with medication. There are probably four days a week that I’m lucky if I can get from my bed to my couch because of the fatigue, muscle issues, gastroparesis, and migraine issues. I have to plan for activities. If I have a doctor’s appointment planned, or if I have something to do that day, I make sure I rest a few days before it and then rest after as well.
My bit of wisdom for new patients is to never be ashamed of listening to your body. If it’s telling you to rest – obey. If it’s saying a mobility device is needed to get a task done – use it. And never be afraid to ask for help.
I live with my boyfriend Kyle now in my hometown. We met in 2013 and I moved in with him soon after. I have a core group of friends [like me] and we support each other. You don’t want to lay everything on your loved ones, so it’s nice to have someone in the same situation that you can do that with; and I can help others, too, through multiple support groups on Facebook, where my child life skills may help.
