Hello everyone,
My Mayo clinic appointment on the 4th went well. My doctor said that I can start going off my medication. Therefore by June (Lord willing) I will be medication free. I had to have blood drawn and get a flu shot so hopefully I won't get sick anytime soon. My doctor also gave me a a really cool eraser in the shape of Japanese food, it actually is kinda cool erasing with food. Hmmm. Well I better get going. Be sure to check out our family website buildingthefamily.com 'cause I have recently updated it. God Bless you all and stay healthy

"How beautiful are the feet of those who bring good news!"
Romans 10:15b

Fall is my favorite season. So why do my hands have to get stiff this time of year of all seasons..
Anywho.. as I mentioned my arthritis in my hands and feet aches in the fall. I guess it's the cold weather. Right now I am laying low and trying to stay off my feet as much as possible. I am also doing my stretches(YES I AM). I am going to see my doctor at Mayo on November 4th-my 16th Birthday-*sigh* hopefully I will have a good checkup and will be able to go off the methotrexate.
Will write about how my checkup goes later.. God Bless

I was told by my doctor that I might gain weight while on prednisone. I personally did not gain weight because I was doing swimming every day for exercise and I also cut down on all sugar.
The disorder did get to my hands. My feet and hands both swelled up. Now I have arthritis in them with limited motion and I cannot make a complete fist.
As far as exercises go my physical therapist gave me some to do, mainly carefully stretching the stiff joints. I do get stiff a lot and am not all that flexible. I get tired out easily and really only ache where I have arthritis.
I had to stay off my feet cause when arches fell. Now I wear arch supports and am actually able to be on my feet more. I even tried running, but I got shinsplints from not running for 4 years. So maybe I'll gradually try running again. Swimming has been a great exercise for me.

Many of you have asked about my disorder. Early summer 2004, I noticed my ankles started swelling and showed my Mom. After praying for healing, we went to our family doctor, who referred us to Mayo Clinic. After 2 ½ long weeks of tons of tests and continued pitted edema spreading past my knees and elbows, they diagnosed me with a very rare disorder called “Eosinophilic fasciitis”. (At the time of my diagnosis, Mayo had only seen six pediatric cases.) After my diagnosis, they put me on prednisone, an anti-inflammatory steroid which served to arrest the disorder. With each of our attempts to wean off that, I had a flare-up. They added another medication, methotrexate, which is often used for cancer patients, and finally Thanksgiving '06 I successfully came off the steroids. I am currently slowly weaning off the methotrexate and hope to be off that by early 2008. I am doing relatively well, though I need to continue to do stretching exercises for range of motion. I have some arthritis in my joints, cannot run any distance and have to stay off my feet as much as possible. Yet through it all, I have learned that God will work even this out for good and that this is an important part of his good plan for my life.