|At the Mayo Clinic in Minnesota, post dx.|
In the fall of 2012, while slowly going back down hill I started seeing Dr. Abdullah at the Children's Heart Institute. He was the first doctor to prescribe me medications to manage my symptoms. He also confirmed my diagnosis of dysautonomia, but also diagnosed me officially with atypical POTS. Dr. Abdullah was able to get my symptoms to a manageable level and keep me in school.
|Just a usual monthly appointment at the |
Children's Heart Institute.
In 2014 my symptoms started declining in the fall, so medications were adjusted and I started seeing a pain management doctor that winter. I resumed the trigger point injections every two weeks, like I was doing in high school on a weekly basis. They started managing my pain with opioid medication, as well.
|The first trail ride out with the baby horse.|
For the first time in my life, I wasn't just cold sensitive but I was also extremely sensitive to the heat. If I did go outside, it was in cooling clothing with a cooling vest. Heat would trigger migraines that lasted for days. My ears would ring and sometimes I even lost hearing in an ear. Something that used to help my pain, now made it 10x worse.
My EDS-y body was popping and hurting more each day. Things that didn't pop before, had started to pop and overextend. I started having neuropathy in August, that went from tingling fingers to my entire arms to sometimes not even being able to feel or have awareness of entire limbs. Bending over caused me to lose vision, get tachycardic and have full body waves of nerve pain. Moving my neck while driving caused excruciating muscle pain and sometimes shooting pain through my arms or legs. I was still in school and making really good grades for once, so I pushed through.
|From being outside for less than 20 minutes, with limited|
|A day in the life of a spoonie service dog.|
On October 1st - I started seeing Dr. Chehrenama, who after reviewing my very long, very detailed history suggested that I may have chiari zero. I was kind of shocked that it wasn't just an unstable vertebrae pushing on a nerve, that there could actually be something wrong with my brain and spinal cord. She agreed with the neck instability and ordered an upright MRI to confirm.
|Waiting to see Dr. C.|
I waited weeks for an appointment at the nearest upright MRI facility, in Maryland. The morning of my appointment, an hour into my drive, they cancelled. I was absolutely devastated. I was counting on this MRI to give me answers so that I could FINALLY get some kind of treatment. My symptoms were worsening to the point of missing classes and barely able to go to work. I was beginning to think I was going to go back to where I was five years ago.
I frantically started looking at MRI facilities that offered this scan out of state. While I was frantically looking for someone or something to help me find the answers, my fairy godmother suggested I look into seeing Dr. Liu at University of Virginia. Within twelve hours his office had emailed me back to schedule an appointment that week. I was shocked, excited, relieved and overwhelmed that I might finally be seeing someone who could do something to help me. This is where I leave you.