This patient story is written by PW Contributor Kim Hartgraves.
I was in the military for nine and a half years, until I had to accept an honorable under medical discharge because of the “episodes” I was having. Since then, I’ve been working with kids and young adults with physical and cognitive disabilities. It’s very rewarding…and very draining. I have coached my stepdaughter’s soccer team, served PTA, and led Girl Scouts. In my free time, I am involved in rescue. I try to stay as active as possible, through power lifting and personal training.
On top of everything, my son had emergency surgery on his stomach at one month. Then, he started having seizures at four months, which was eventually diagnosed as epilepsy. He’s three now and attends occupational therapy and speech therapy for Sensory Processing Disorder (SPD).
This picture sums up my frustration sometimes. I have been nursing a shoulder injury and just had chiropractic work done. I’m not the fastest (although I used to be), I’m not the strongest (although I could handle more before), and I get injured more than I’d like (even though I’m trained and use proper form), but I keep moving forward. For every day I’m stuck on the couch, can’t peel myself out of bed, have strong palpitations, headaches, anxiety, or pass out..there are the days I can take on all these blessings.
Without a doubt, the biggest struggle is the diagnosis, rediagnosis, “trying” medication routes, and just downright asking, “Are you sure you’re not just depressed?”; “Are you sure you’re not just looking for attention?”; or saying, “Quit making excuses”; “Everyone gets tired”; and, “Just drink water.” I pass/failed the tilt test in 2007 and the cardiologist called it Neurocardiogenic Syncope and wanted to put in a pacemaker. Four opinions later, I had old lady stockings, salt pills, beta blockers, and more, but still felt worse than ever.
I decided to get off everything cold turkey and monitor my symptoms. My new neurologist is in disagreement with the cardiologist and swears it’s dysautonomia. They want to try a trial led intended for Parkinson’s patients. And thus the journey continues.
I love (odd choice of words, I know, because no one would ever wish this on anyone else) reading stories about other patients’ journeys, because for a second I don’t feel crazy. And a lot of times I feel blessed because I could have a lot more severe symptoms.
Do you have a rare diagnosis? Share your stories, thoughts, and hopes, with the Patient Worthy community!
If you would like to learn more about dysautonomia, check out our partners the Dysautonomia Advocacy Foundation.