@cajungirl4life Once you again, you nailed it. It’s wonderful you have such a loving and caring husband who stands beside you. That is so important. Thanks for your honesty in sharing your experiences.

certainly speaks to the strength of those that ARE going this alone.

Hi Kelly, that was beautifully written…. I can totally relate to everything you said. It brought tears to my eyes. I have IBM {Inclusion Body Myositis} And I also have Hashimotos as well. I too feel like a different person today… I cannot do things I used to either. I still cant come to terms with being this way either…. I have a loving, supportive, amazing husband and a very supportive family and extended family. I feel very lucky to have that. Thank you for pouring your heart out to everyone.

This is beautiful – thank you for sharing 🙂

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.

First-I’m so glad you shared and I hope that it helped writing this and sharing; know also that you’ve most definitely helped others ❤️
I’ve been getting rituxan for most of about 3 years. I e tried IVIG, 4 tries and 4 bouts of meningitis so at least for some time, that option is out the window.
I’m assuming you’ve since gotten your rituxan, I hope it went well for you!