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  • The woods in any season, in any weather, is the most comforting and peaceful place for me.  I am grateful to be able to get back to hiking and riding in the great outdoors. Of course, with dermatomyositis (DM) I […]

  • Elizabeth Graham became a registered member 1 day, 16 hours ago

  • Chuck Abadie became a registered member 1 week ago

  • I know that I am not the only one that is going through this but at times it sure seems like it. I spend my days at home unless I have a doctor’s appointment or aquatic therapy. I try to stay positive but seeing e […]

    • I’m in tears reading this, especially about the kids, and not being able to be the parent you were (and liked!) before this disease so rudely took hold. I know you’ll not give up and I know you know you’re not a failure but yes those feelings still come on and having this forum and others from MSU are so helpful in letting us just express it! You’re not alone Jason.

  • Jason Hopfauf changed their profile picture 1 week, 3 days ago

  • Rare Disease Patient Advocates
    We thought you would like to see a fun moment from the Global Genes Patient Advocacy Summit.

    Seth Rothberg, co-founder of Our Odyssey and a rare disease advocate and motivational […]

  • Lory G Cully changed their profile picture 1 week, 6 days ago

  • Lory G Cully changed their profile picture 1 week, 6 days ago

  • Lory G Cully changed their profile picture 1 week, 6 days ago

  • Lisa Matthews became a registered member 1 week, 6 days ago

  • It is now October  – four months since I was diagnosed with Dermatomyositis. I’m going into my fifth month off work. October 1st was originally the day I was planning to go back to work.

    Four months have flow […]

    • hi Lizzy that float therapy sounds AWESOME. I have to admit, i have taken a slightly less forgiving path ..lol; i do push my body but that only started once my treatment kicked in (I was diagnosed May 21…and I didnt feel strong again until August 4th) I for sure rest, but within the time frame that I would have rested without this disease. I suppose that sounds like i am in denial of this diagnosis – and maybe i am …lol…but for now, I am eager to see how much i can feel “normal” and do the things when and how I want to; not when and how this disease wants to; I wont lie: it is hard, and i feel the “lessening” of my abilities but i keep pushing. If this disease can come upon me out of nowhere, perhaps it can go away just as easily 🙂

  • Kelly Lynes became a registered member 2 weeks, 1 day ago

    • Hi Kelly and welcome to #MyositisLIFE! So glad to see you here. We are working to continue building this site and we thank you for being a part of this growing effort to educate using our experiences.

  • At only 41-years-old, I never thought I’d be stuck in a “defective” body. A body that, thanks to Dermatomyositis, sometimes, doesn’t even allow me to walk my young daughter upstairs to tuck her in at night. […]

    • Thanks for sharing Kelly ! I think you have articulated what most of us have felt and feel dealing with these rare illnesses. Thanks for reminding us that we are not alone in our thoughts and that we are warriors!!

    • hi Kelly..thanks for sharing your struggles and experience; this diagnosis is an astonishing thing to have happen to oneself. My greatest struggle so far is the idea that myositis is, for most of us, an “invisible” disease – that is to say, that it shows no outward signs for the most part, it is not well known and even when you stand before your family, and explain some still wont get it.

      You wrote, “I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.”

      Kelly, some of them…even the ones that love you the most…wont understand. This will hurt and astonish you; but you can not wait around for them to understand. You have more important things to do. Find folks that do understand, or are willing to do the work on their own to understand; because you will EXHAUST yourself trying to get them to a place that they can not or will not go; and you do not have the time or energy to make someone see or understand this disease.

      You will have that one or two..or three (if you are lucky) folks that will get it. that is all you need.

  • Lory G Cully became a registered member 2 weeks, 5 days ago

    • Hi Lory and welcome to #MyositisLIFE. Thank you for joining this new and growing site. My name is Jerry Williams and I was diagnosed with polymyositis 18 years ago after an almost 4-year battle for a diagnosis, which has since been corrected to dermatomyositis by some of my doctors. I am the Founder and President of Myositis Support and…[Read more]

      • Hi jerry,
        Thank you for your reply. It also was a long battle for me. it has taken 5 years and a lot of misdiagnosis. One dermatologist finally did some blood test and refer me to rheumatology. it was nurse who recommended a
        doctor who deals in rare disease. she has a rare disease herself. its has been really hard. I am really sensitive to
        meds.…[Read more]

      • @nicetee So great that you have a friend that is willing to deal with the darkness. Losing friendships is something I know all too well. Over the 18 years I have been living with myositis, I have learned who my true friends are and my Mom always told me growing up that one day I would. Please know you have me, us. We understand.

      • thank you for the welcome. I heard that saying too. how true. it is nice to feel understood. Flare up days.
        they can be so painful. sometimes just have to do nothing and rest. Thanks again.

  • @cajungirl4life Hi Kelley and welcome to #MyositisLIFE. Thank you for joining this new and growing site. My name is Jerry Williams and I was diagnosed with polymyositis 18 years ago after an almost 4-year battle for a diagnosis, which has since been corrected to dermatomyositis by some of my doctors. I am the Founder and President of Myositis…[Read more]

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