, , Polymyositis
Tags: invisible Disabilities
, , Polymyositis
, , Polymyositis
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Yes you were Ellen. One of the very first to join the group! I think I made the right call too especially with myositis being so rare. Thanks for taking the time to read stuff; just shows how caring you truly are! I just wish I had named it differently since I had been excluding people with other forms of myositis since they assumed it was for Polymyositis only. But, Facebook won’t let me now.
I am glad you are still a part of the group, whether you have myositis or not. As I said, your expertise in caring is valuable to us and to me as your friend! Much love Ellen!
I was one of the first to join your fb group. Early on you were considering of it being for all with chronic disability. But, I am so glad you kept it for those sufering with myositis. It is very important for you guys not to be lost in a vast group, but to be able to truly understand and help and be there for one another. I know it is invaluable to all in your group to share symptoms and treatments, along your with experiences related to myositis. I read how you are there for one another in the posts. You guys keep each other strong and with a sense of not being alone in your journey. <3
Ellen,
Thank you so much. I appreciate you taking the time to not only read the blog but also participate in our group. You are one of a very, very few that is in the group that does not have myositis but your expertise as a nurse is invaluable to us. I am so sorry you have to endure so much. Chronic pain is very frustrating and can, as you well know, lead to depression if we do not talk about and advocate for ourselves and others. You know I wish you the best and hope that you are on some type of medication that can help reduce the pain level some. It is a tricky mix for sure. I too am proud to be your friend Ellen! With love!
Jerry, This is beautifully written. As you know, I do not have myositis. But, while working as an RN, fell out of an elevator on my way to an inservice one day. I also was misdiagnosed for over a year. All of my Drs dismissed me. During my 3rd!! Lumbar Myelogram, a radiologist noticed narrowing in the Thoracic spine and suggested further “appropriate” studies. A thoracic (after multiple lumbar) MRI showed that a slipped disc had been only a milimeter away from severing my spinal cord completely. All of a sudden, I’m rushed to emergency surgery, because if I “so much as trip on my shoe lace”, I will be paralyzed from my upperchest down for life. Now the scar tissue, after two 8 hr surgeries and sawed ribs, is so proliferative the pain is unbearable. Everyone says I look well. I understand, not specifically about myositis, but how frustrating a chronic debilitating illness can be. I commend you on reaching out, via your facebook page and your blog for reaching out to help others, with all you are going through. I am proud to be your friend.