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.

@lynnwilson Love your rare disease advocate dance with Seth!

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 🙂

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.