Swimming Against The Current

  For some reason I don’t remember a lot about my childhood. But, I remember being sick a lot. I remember when my friends were outside playing, I was sometimes laying on the couch with a nauseating headache and a tickle in my throat. I remember even when I felt ok I still had a cough and when my mom would bring me out in public everyone would stare at me and be afraid they would get it. Nothing I had was ever contagious though. I was tested for whooping cough more than once and it was never positive but I still had to be out of school for days to wait for the results. I remember when I was in second grade I had to have an MRI of my brain because my headaches were so bad. I used to tell my mom it felt like there were marbles rolling around in there or someone inside my head with a hammer. My mom and dad tried everything to help me, bringing me to many doctors and even health food stores to find out I had a sensitivity to dairy.    When I was 12 I started having different symptoms, mostl

  February is rare disease month and although dystonia and 22Q are not diseases they are both rare “disorders”. So I figured now would be a good time to update you all on me & Cody (and the rest of my family)! This morning, as I made my way to target, I could feel my head pulling to the left. This hasn’t happened for a long time but as the pain started I knew exactly what was happening. By the time I got to target, my neck was in a complete spasm and I was unable to straighten my head. I sat in the parking lot for about 20 minutes as I waited for it to pass. It brought me back to before I had kids when the same thing happened in a Marshall’s parking lot and I had to call my mom to come help me.  The last year has been pretty tough with my dystonia. My DBS doesn’t really work anymore so I take frequent trips to Albany to get Botox in my hand, foot and neck. It hasn’t been helping with my foot but it definitely relaxes my hand. Unfortunately it also makes my arm extremely weak and pa