so you think you can dance bleeding love

Rather, my goal is for mutual understanding and respect. It is NOT my intent to criticize how others feel and choose to address their own health. My hope is that perhaps there is someone else out there in the ITP community that feels like a “misfit” (in whatever way that may be) and my words may help them feel connected and understood. While I certainly understand their fear and appreciate their concern for my well-being, these interactions only served to make me feel hopelessly lost and alone. During the course of my journey I have had many people suggest or tell me that I am “wrong” or “deluded”, express concern and try to convince me to reconsider using drugs or surgery to elevate my platelet count. I’ve been wanting to share my story for some time now but have reservations because my feelings and values do not align with our culture at large. My aide was also responsible for flushing my IVs and handling excessive random nosebleeds. I wore a helmet and knee pads on the playground and bus to prevent injuries as well. I also had a para-aide at school to keep me from getting into harmful and unsafe situations such as crowded hallways and busy classroom activities and recess. It was tough being in a wheelchair at school with an IV in my foot for those longer treatments. This did not raise my counts for long either, but the nice part was that it was a 60-minute IV push instead of a 16-hour hospital stay IVIG treatment. At 11, treatments changed to Anti-RhoGAM slow IV push. I had a treatment every four to five weeks and treatments only raised my counts into the 50s. My treatments were steroids and IVIG from age 16 months to 11 years old. I had a bone marrow biopsy to rule out leukemia, and after my platelets didn’t rise after six months, the diagnosis was later changed to chronic ITP. When I was first diagnosed, I was covered in bruises and petechiae and at the suggestion of a family member, my parents took me to the doctor to see what was going on.

My history with this autoimmune disorder is long. I’m now considered in recovery with counts near 200,000. I am now 33, so going on 31 years of my ITP journey. I was diagnosed with ITP at 16 months old, with a count of 8,000.

So you think you can dance bleeding love