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  • snelsen
      Post count: 1909

      Hi Jules
      I don’t disagree with anything you said. Your posts are marvelous of only in content but also style.
      I did want to affirm to all of us that there are times in our graves’ and TED world that feeling discourAged is ok. On plane gotta go

        Post count: 333

        I love this post!!!

        Thank you Jules. I’m so glad you open this discussion.

        You are so right. As we all know, it is easier said than done, especially when we are feeling sick. I recall how I felt at the beginning of GD in early June. I was so scared that I was dying and then when things got worst, (even though I was taking the Rx I was still feeling very very sick) I was worried that I wasn’t dying soon enough. I was anything but positive about the whole thing. I had a flat affect and felt sad all of the time. One day I decided I would start enjoying the few minutes a day I would get when I wasn’t feeling like I was about to pass out. I decided to do something that I liked even if just for a few minutes. I guess I started to have a positive attitude. I would watch a movie or eat something I liked. Then when I started to feel sick again I would just lay on the couch for hours until it passed. It went on like that for several weeks. Finally one day I felt like my energy was coming back. At that point I felt so blessed that I have had a positive attitude ever since. Every time I walk by a mirror I stop and think about how much better I look (got some color back) and I pray and give thanks.

        I think this experience gives us a gift and that is the gift to be thankful for the many blessings that we have, even when sick.

        The other day at my Endo’s office they were showing a documentary about two children who have a disease called progeria. This disease is very rare and not many children have it. I say children because the children that do have it don’t live very long. They become old in a matter of a few years. They suffer the same problems an elderly person does but they are only children. Their bones become brittle and start collapsing in, etc. Watching the documentary while I waited in the waiting room made me sad but also made feel very thankful that GD is something that we can treat and even get to a point when we feel somewhat normal.

        It is a hard road and it gets harder at times but when we look around we can still see that we are blessed.

        Thank you for the post Jules. We needed it :)

        Caro :)

          Post count: 85

          So funny you talked about Progeria Kids. I am a member of the California chapter. My friend Terry lost her daughter to progeria some 20+ years ago.

          These kids are what inspire me to have the positive attitude (when I remember to ) they are the absolute best kids, full of life and laughter. There is one little spunky on Adalia Rose on Facebook that is 5 yr old with the most beautiful eyes. All of the kids are now getting Facebook pages raising money for the drug trials third year.

            Post count: 333

            That is wonderful Jules. Isn’t it amazing? I enjoy learning about these children because when I was 8 years old my parents took me up to Great America in Wisconsin and there I saw one of these little kids with his/her parents. My parents explained to me then what this little child was suffering from. As an adult I came to find out that the disease is very rare. About a year ago I was watching a documentary on YouTube about a little girl who I believe was the 1st one to start the trials or something like that. She is from England? She is beautiful. I love her personality and her positive attitude. They also talked about the oldest of the children and how unfortunately the end of his battle with Progeria came at one of their yearly reunions. It was so sad. I think I cried at that point. It is amazing that there is information out there about these beautiful children. We should all know about it. They too have inspired me. Also little Juliana Wetmore. It is amazing what strength these children have. They are wonderful. God bless them. No child should have to go through anything like that. I’m sorry to hear about your friend’s daughter. She most have been wonderful.


              Post count: 333
              karebear wrote:
              Great attitude!
              While I am newly diagnosed with graves, I am not new to serious health problems. I swear being positive helps me feel better. I am thankful to be alive.

              Hello Karen. Me too.

              I’m also new to GD but I have gone through a lot all of my life. At one point I was even told I had Lupus, which after several visits with Rheumatologists I was told I did not. All of my life as far as I can recall, I have had to visit Dr.’s many multiple times a year. Many times with no explanations as to what was wrong with me. It gets old as they say. Not all Dr’s have the art either to help the sick. When I was told I had GD I was so glad it wasn’t cancer and that I could take Rx for it and that if that didn’t work I had other treatment options. I felt crushed for several weeks b/c I felt like once again I was getting the short end of the stick but then I decided to start moving on with what I had each day that made me feel happy (a few moments here and there of feeling better), just like I had before with my other health (immune) problems. I pray constantly to be able to keep a positive attitude. It is not easy when one knows that one can feel sick or even sicker down the road but I tell myself to take one day at a time. It is very hard but a little positive attitude is an option to help us get through the day, right? … at least it is for me and my loved ones. I also give myself a break to realize that there will be moments that the positive attitude might go out the window and giving myself that break helps me continue having a positive attitude, if that makes sense … b/c we should be able to feel down and cry also during the harder times. We are going through something that takes both body and mind to go through it in life. We are our own cheerleaders so many times. I’m glad that I have been able to cope with my other immune problems b/c the experience is helping me with GD. So glad you have found us.

              Caro :)

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