Eosinophilic fasciitis

A very good year!!

2010-06-19T14:50:00.000-07:00

I can't believe I haven't posted for almost a year. This past year I have been pretty healthy. Aside from the common cold I have not been very sick. We have been trying to get arch supports, orthotics, and finally got them this spring. I joined track as a manager and did practice with the team and enjoyed that a lot. However, one day I lost my shoes and decided to wear flip flops all day at a retreat. Later that day my feet became swollen and I could hardly walk. At around the same time it started warming up~Summer!!~and I was feeling pretty tired all the time. My Mom brought me to the doctor and they did some lab work and thankfully it all came back normal. I just need to keep wearing my orthotics. Other than that week I have been feeling very good and am thankful God healed me a year ago.

Clean Bill of Health

2009-07-23T10:56:00.001-07:00

In the beginning of June I went to Mayo for a check-up. I had, a week before, gone of my medication. After 5 years of having Eosinophilic Fasciitis (I was diagnosed when I was eleven) my doctor gave me a clean bill of health.

I have started running and can run up to two miles at a time. I find that if I push the limit I regret it the next day. Last week my knee started hurting so I stopped, went to the doctor and found out that my knee went out of place because of my fallen arch in my left foot(my arches fell about two years ago). I am hoping to get fit with arch supports so I can get back to my running and hopefully run a 5K this fall.

I am not a medical doctor and can not tell you when or if you will be free of Eosinophilic Fasciitis. My case of E.F. was different from any my medical doctor has seen. We had no idea how I got it or when it would go away. I write to tell my story and hope that through my blog you will find comfort and hope.

Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.

Psalms 71:5
For you have been my hope, O Sovereign LORD, my confidence since my youth.

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Spring!!!

2009-04-24T18:16:00.001-07:00

Spring!!! What a wonderful time of year...my favorite... the air is sooo clean...everything smells wonderful...and things are turning from black and white to color!!!! This spring my arthritis has been calm and I am down to 2 pills of methotrexate a week!!! Yippee!!! I will be going to Mayo in June and hope to get a clean bill of health. Exercising has been a huge benefit in staying healthy while going down on the medication. I have been exercising 30 minutes every day! I got sick twice this spring:-( not so nice but am better now and hope to stay this way for a while!!!

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2008-11-12T19:16:00.000-08:00

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

2008-10-17T19:19:00.000-07:00

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

2008-09-16T09:00:00.001-07:00

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.

2008-09-14T15:57:00.001-07:00

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.