Diagnostic odyssey. It is exhausting. It is expensive. It is scary. I have dealt with living in the world of the unknown for the last four years with my three children. Now…I am adding me into the mix. I have been to three different hospitals in three different states in the last year with no set diagnoses. Like each of my children, I have seen over 30 specialists. I recently saw a new neurologist at my hospital in the Midwest. He wanted me to see a rheumatologist.  I went to a different hospital that is currently ranked as one of the “top hospitals in the nation” in a different state because I was already scheduled to go there for my pain management. The rheumatologist there did a workup on me. It was an expensive trip for our family. Flights, hotels, rental cars, childcare, etc.

I was diagnosed with “undifferentiated” connective tissue disease,  inflammatory osteoarthritis as well as several other things like dysphagia, abnormal vasoreactivity and livedo reticularis. I was put on a medication that treats malaria, lupus and rheumatoid arthritis. I was sent on my way. I took the information back to my home state and met with another rheumatologist. The two hospitals disagree on what I have as a “root cause” right now.  I am undergoing more of a workup at my home hospital after testing with abnormal cardiolipin antibodies IgG, which means I am suspected of being positive for antiphospholipid syndrome on top of my other issues with my hands and pain. I have appointments every day this week and might have to put off our holiday trip home to our families. The emotional stress is unbearable. The financial stress is draining. And, the “not knowing” what is going on in my body is extremely scary. There is no hiding my fears.

I now realize why I am relentless in this fight for answers for my three undiagnosed children…

I NEVER want them to feel the pain that I feel every second of every day.

I NEVER want them to be as scared as I am right now.

I NEVER want them to worry about dying young.