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Daily Journal

Keeping track of my disease, finding out what works, what doesn’t, what has happened during the course of this illness and tracking my medication episodes is a great help. It has helped me find out when I have relapsed and what has worked and what hasn’t. This is my personal journal of the journey with this uncommon disease. I hope it helps anybody who reads this, understand my personal experience with this uncommon disease. Please review my archives to read my about my journey.

 

4 responses to “Daily Journal

  1. duong thanh Tu

    August 12, 2013 at 1:38 pm

    Thank you so much. You know the mumber of people catching this disease is extremely rare, so they do not know much about it. We had to pass hospital to hospital( 4 hospitals) and finally Doctor Khoa in Cho Ray hospital in HO CHI MINH city diagnosed it . She was taken so much Steroids and now she is going to recover. Her face seems containing water. It looks fatter than usual and she tries to walk as normal as possible. Yesterday we organized a birthday party for my son, she ate much meat and a lot of sugar and as a result of this the rashes appeared. we were so worried. We really need your help because we have little information about this disease as well as how to live well with it. Once more time let me send you and your family,my whole- hearted thanks and wishing you and your family good health and good kuck

     
    • Paula Schaadu

      March 6, 2015 at 7:23 pm

      My heart goes out to you and your wife. I have had stills since I was 7years old but wasn’t diagnosed until I was 34. I was in the hosp and in a skilled nursing home in 1991 as all of my joints were completely frizen at that time. My fevers come and go as does the rash and I am always tired. I work full time as a nurse. I am blessed with a great support system. If I can be of assistance let me know. I have been researching stills since 1991 though the information is quite limited. Hang in there and be I. Touch!

       
  2. duong thanh Tu

    August 11, 2013 at 3:15 pm

    THANKS FOR YOUR JOURNAL. MY WIFE HAS GOT STILL DISEASE AND HAS JUST GOT BACK HOME AFTER 45 DAYS IN HOSPITAL. NOW SHE IS STILL WEAK AND WE DON’T KNOW MUCH ABOUT THE DIET, PLEASE HELP ME. WE ARE IN VIET NAM

     
    • stillsdiseaseblog

      August 12, 2013 at 2:08 am

      Hello Duong, I am glad that my journal can bring some comfort for your wife. I am so sorry that she has suffered so long. It sounds like her hospital stay was very long. I hope that she was finally diagnosed. Has she started on medication? Steroids? I hope that she has a trusted Rheumatologist that can give her the medications that she needs. I have been asked through the years to elaborate on the diet that has helped me tremendously. I will be adding a section to my blog, titled: Anti-Inflammatory Diet. I can only say that it has helped me live a normal life again, along with a very lose dose of Methotrexate. I have an App on my Iphone that I use daily that has helped me. It is called IF Tracker. I do not know who made the app, but it sure has helped me. I don’t know if the app is made for other phones. The app rates every food in a positive or negative and then appropriate food choices can be made.I will provide details about my food intake on the new section I am making today.

       

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