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Danielle's Mom

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Everything posted by Danielle's Mom

  1. Danielle's Mom

    What Is/was Your Job/career?

    I graduated with a BS in Elementary Education in 1989. But only taught as a sub in Elementary and High School. I hated the High School kids. Actually it was the principal who didn't do his job. I moved to Florida for 3 years and I worked in a maximum security prison. Wasn't bad at all!!! After moving back to Indiana, I became a Child Protection Case Manager. I did this for 13 years. Right now I am off on long term disability to see if I can go back to work after completing my chemotherapy...
  2. Danielle's Mom

    Getting To Know You - Archives

    Hello-My name is Rhonda and I was diagnosed with Scleroderma in March of 2007. I live in Warsaw, Indiana, but after 8 specialists in the years of 2006 and 2007, it wasn't until my father and ex drove me 5 hours to Cleveland Hospital, I was diagnosed. I had been suffering for almost 1 year prior to being diagnosed. I have major skin and kidney involvement, with Raynaud's, GERD, and debilitating hands. I am now 44 years old participating in the SCOT study in Milwaukee. I travel to Milwaukee every 4 weeks to receive the chemo-Cytoxin. The study involves 12 treatments, 1 every 4 weeks, and I just received my 10th treatment. I haven't been sick nor have I lost my hair. My quality of life has improved but I am not working and don't know if I will. My mom moved in with me after living 23 years in Florida. She was diagnosed with CREST approximately 8 years ago. I have 1 daughter, 18 years old that also lives with me. She is expecting my 1st grandchild in August. I have a 6 yr old Brittany Spaniel named Hudson and he is the love of my life.
  3. Danielle's Mom

    IVig -treatments

    I had IVIG treatments in July of 2007. I had 2 treatments, 1 on Thursday and 1 on the next day Friday. These 2 days were very long like 10 hours. I drank lots of water like they wanted you to and my days went well. When I went to bed Friday night I didn't know anything until Monday or Tuesday. The extreme amount of liquid had overloaded my kidneys. BUT I had compromised kidneys already. I was in ICU for a couple of days and in the hospital for a few days but my ulcers began healing and I did feel better for a while. I really feel that if I could have finished this treatment, it would have had some success. I met a lady at Cleveland Clinic who had the treatment and she had experienced much success. Good luck.
  4. Danielle's Mom

    URGENT request for information

    I have Anthem BC/BS and they finally approved the proceedure. BUT I had to hire an attorney and she was in Indianapolis 3 hours south of me. Early on in my insurance journey, I took pictures with the digital camera and had them put on a disc. My parents began making a binder with info, ie. doctor notes, my work duties, my spiraling financial info, a letter from my daughter. The binder was a 3" and was full of info. I spent over $100 at Staples for my final hearing. The picture disc was included in the binder. Binders for my last appeal were sent to the insurance company and my attorney. By hiring an attorney, she was able to get my appeal date extended until she was able to become familiar with my case. If you have other questions, just ask. And, good luck. I'll be sending good thoughts your way.
  5. Danielle's Mom

    Itchiness and Sclero

    If I had a nickle for every bottle of lotion and every prescription that failed for my itching. I am now on 2 or 3 pills for itching. The doctor gave me a steroid lotion to apply to the inside of my elbow. I also have used an over the counter product for 3-1/2 years. I try something new but always go back to the OTC product. You can PM me if you'd like the specific product.
  6. Danielle's Mom

    Scot Trial

    Hudson's mom is now Danielle's mom.
  7. Danielle's Mom

    Scot Trial

    I really think my parents wanted me to be randomized to stem cell. I really didn't care because my quality of life sucked and I just wanted something to happen. I went to Cleveland Clinic and Hospital for 2-1/2 years and my Rheu. there said that I was the worst case that he had ever seen. Finally in Sept of 2007 he called doctor Sullivan, of Duke, while I was there for an appointment because there was nothing else that he could do. Dr Sullivan began the process right there. My insurance at that time was M-Plan and they denied the request for coverage even after an appeal. January of 2008 my insurance changed to Anthem BC/BS. We had to start the process again. I received the denial, then did internal appeal, and then an external appeal and with an attorney Anthem finally agreed to cover the treatment.