Monday, July 23, 2012

FrannyCakes and RSD

I had the pleasure of meeting Mary Fran Wiley of frannycakes while at the Gluten Free Expo in Chicago. Little did I know that we have more in common than being gluten free. She came out with her dirty secret that she has RSD. If you read my bio you know that I have RSD as well. After reading what frannycakes had to say I wanted to write about my experiences as well.
My series of evens started in Jr. High when I fell over a net in gym class. I was put on crutches and my left knee healed. I had problems on and off with it swelling but never thought much about it. Freshmen year of high school in the fall my knee swelled and the doctor put me on crutches. That was the beginning of the end of normal life. My knee and lower leg got to the point where it was cold, blue and even a sheet touching it would cause pain. The next four months I bounced from doctor to doctor getting no real answers except to tell me to pray that I don't have RSD. I was finally taken to Shriner's Children Hospital in Chicago when I was diagnosed with RSD, what every doctor told me I didn't want to have. At this point I had not walked in almost 6 months and was in extreme pain all the time. I endured extensive physical therapy and started therapeutic horse back ridding. I went into remission eventually and went on with my life living in mild pain.
Fast forward to 2 years ago and I had "Mommy thumb" from picking up my then infant son. We were getting ready to go on vacation and I took the easy way out. Which I knew I was taking a risk because any injury can spread RSD. While we were on vacation the pain started in and has gotten worse since then. I manage my pain with my tens unit, lidocain patches and prescriptions.
When I was in Chicago at the Gluten Free Expo I too was given the advice that a change in my diet or the GAPS diet would cure me. It is not that easy to "cure" RSD. Trust me we all wish it was. I was told when I was 15 that I would be wheelchair bound early in my life. I have fought hard to prevent that and I keep going as long as I can. With having two small boys I take time to make memories with them because I know there will be a point in time where I can't. I did not come here to be a downer but to offer support to a fellow blogger. It is a rough rode that those of us with RSD have but my goal is to live it day by day with the help of the great support system I have.


  1. Thank you so much! I was feeling alone and like I had to keep my pain a secret because I am so much more than the disease. It took me a long time to realize that just because I am more than it didn't mean that I should ignore that it was a part of me.

    I admire your strength and courage - raising two little boys is enough work without the added pressure of suffering from CRPS/RSD!

  2. Some days are worse than others but it also means that I have two very special reasons to get moving every morning!