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My girl

#Clubfoot A week ago we took my 5yr Daughter to hospital. She had surgery on both feet and is now in plaster casts and unable to walk for the next 8 weeks. The surgeon was already telling me she might need a second round of surgery next year.
I am sad for her that she has to go through this. I am also sad when I think back to the boots and bar she had as a baby and how she used to scream when we put them on.
All I hope is she can run and skip like her friends one day and live her life pain free.


Everything is fine and then it isn't

I'm working. I'm in the groove. I'm feeling ok. My feet and ankles haven't bothered me all day. My knees aren't crackling. My back is strong. Then I stand. My ankle gives out, my knee tweaks, my back clenches. I have to take a breath. I have to collect my body. I have to grab the Advil before I no longer can move. This happens every single day. So now tell me how I'm supposed to judge how I feel from 1 to 10? Starting when? #Clubfoot #InvisibleDisability #1to10


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1 comment

Failing Feet

I have a rare musculoskeletal birth defect which has caused a number of joint surgeries. I thought I was used to my crazy, unique rarely understood limitations.
Suddenly my “good” foot — as opposed to the small, clubfoot other foot— has become numb, pins & needles feelings. I’ve fallen on our concrete porch twice over the last 2 days.
Now I’m afraid to even try to walk. I’m not even sure if continuing to trust my spine surgeon, assuming the epidural he gave will eventually kick in to help., is the right choice. I’m tired of blindly trusting orthopedic surgeons who only want to solve a small, minuscule part of my problems and I’m left to blindly coordinate complex medical conditions & treatments with limited medical information.