My husbands “ah-ha” moment came from watching Ninja Warrior!

Posted June 29, 2020

jennifers story

After 30 years of the unknown, I finally got an answer. One night my husband was watching Ninja Warrior and heard a story of a woman with this rare condition. This was after years of going to doctors and him coming home poking me to see if certain things hurt when he finally got the ‘ah-ha’ moment and called me into the room once again, to be poked at!

He was like, “Jenn listen to this woman’s story, you have this!”

He went online and tried to find a doctor that could help me. Finally, I was able to get a doctor’s appointment. The doctor asked me to do all sorts of things that seemed natural to me. He said I know exactly what you have. Before he could even say it I started to cry along with my husband. It was years and years of doctors and tests and being told I had too much on my plate. My so-called “pizza pie” wasn’t sliced right! Yes, one doctor actually told me this.

I was told I was born with pediatric arthritis. Then I was told I have high arches. Then I was told you have flat feet you need special inserts for your shoes. Then I was told you can’t get contacts because your eyes are too big and the contacts aren’t fitting. 

From making plans with family and friends to having to cancel them because I was too tired, bad menstrual cycles, to almost bleeding to death after my first child. From breaking out in weird hives and rashes to my body temp dropping to 94 degrees, bruising for no reason. Wearing long sleeves and pants to school events so I wouldn’t get weird looks.

I was begging for an answer to know I wasn’t crazy! My brain wasn’t working right and I couldn’t remember things I used to. Trying to explain this to friends, family, co-workers, and them saying but you look fine, you don’t look sick! I wouldn’t wish this pain to my worst enemy. Waking up in the morning and you can look around but you can’t move. This is what I lived with for 38 years.

Today, I was told that my children might not be able to play the sports they love. Ice Hockey! That broke my heart more than any pain I have felt all these years. How do I tell my children? How can I tell them this is something we all have to live with. There is no cure! We don’t know what is going to happen but we just live the best we can.

Maybe my life would have been different if a doctor would have listened to me. Would I change my life- no, never! I have been blessed. I could go on and on, I haven’t even touched on 10 percent of what I go through. Insurance is a whole other battle. It’s been a year of fighting to get the help I need.

One day I hope there is a cure. Maybe one day there will be a cure so that my children don’t need to quit playing a sport they love.

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