active 1 week, 6 days ago Kelly Dennis

@cajungirl4life

Member since September 7, 2019

Total Reads: 850
Total Posts: 1
  • 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.

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