Dysautonomia comes with many stories of difficulties and worrying; here's my story and how I decided that I didn't want to miss the good stuff.
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What Happened
Sunday March 11, 2007, I collapsed at the top of the stairs as I headed down for dinner. I was only sixteen and had a stroke. Miraculously my parents were able to transport my completely paralyzed body to the closest hospital. After only a few hours in the emergency room, I was rushed by ambulance to the Medical College of Virginia where they were said to have the premier children's hospital wing.
I will never forget that night. Unable to move or control any bodily function I was completely helpless as I was poked and prodded by doctor after doctor. I was optimistic that I would be back in school in a couple days, although the tests weren't producing any results. Roommate after roommate received diagnosis, prognosis, and were sent on their way. I remained behind struggling to raise my arms above my head.
As I regained movement in my limbs, physical therapists attempted to position me upright. When upright my blood pressure dropped dramatically and my heart rate skyrocketed to compensate. Two weeks in I received the diagnosis of acute autonomic neuropathy. A team of neurologists found the diagnosis on the internet. While not exactly promising, some diagnosis felt better than nothing.
While slowly improving the doctors decided there was nothing they could do for me except treat the symptoms. I was sent home in practically the same state I entered a month earlier. Unable to move I was wheel chair bound and bedridden. Doctors told me that as a healthy teenager I had a good chance of being completely recovered in three months which was reason enough for me to stay positive.
After a year my blood pressure continued to drop when I stood which made me dizzy and light-headed. I walked short distances around my house using a cane for support and continued to battle multiple other symptoms. Low blood pressure causes memory issues and a loss in cognitive abilities. I felt like I wasn't as clever as I once was and was rather slow on the draw in conversations.
As my body recovered my blood pressure fluctuated drastically from too high to too low. This made adjusting medicine extremely difficult as the medication would often make my blood pressure too high giving me migraines. When the medicine was slowed down my blood pressure became too low again. Without my mother as a nurse the medication balance would have felt near impossible.
Whenever I started feeling drastically better my body relapses. I still have minor relapses. Originally they would last months, now they may last a week. This has made going to school difficult as my body can suddenly crash. I decide not to live in worry though. This is my senior year in high school and and I don't want to miss a thing. I want to improve, I want to continue helping people, I want to live my life, I want to beat Dysautonomia.
