Hello all. Not been in greatest health. Just not up to writing much. Lungs continue to fail and I am extremely tired. Getting closer to the end of their abilities. And no transplants. My polymyositis prevents me from it. Am ok in general just happening faster than I had hoped. I have enjoyed meeting new friends and helping when possible. Be well. I will drift in and out of here as I need to do. Thanks to Kaismama who has helped me educate on prednisone. And all the others out there who continue to help and give the right knowledge to those in need or fear. For right now I am working upon the Next steps of the journey. With palliative care for a year now. Am feeling fine with life. Stay strong. There is much, too much to miss in the world. Don't sit on the couch and moan. Get up and get out. Find the joy in even the smallest act. And for those who have crazy families and friends that disappear, remember that they have their reasons and it is about what they need not you. Memories are of the mind and not the object. Give freely of time and help. Your life will be far better. Until later, Karen
Karen, What a kind and generous posting from you. You are truly a heroic example for all of us. What great words that you had to tell us. But I am so sorry to hear that your health has gone down hill further and faster. I'm sending you my prayers, positive energy and wishing you the best. You take care, dear one. Sara
So sorry to hear about your health Karen! you have done an amazing job on here and you are very knowledgeable about prednisone. That drug is a two headed monster or double edged sword! Short term, it is a great drug but long term, it can be a killer, doing almost as much harm as good. I try to stay away from it as much as I can. I saw my grandmother struggle with end stage lung disease and die from complications due to breathing problems and long term Prednisone use (she started on high doses of it many years ago before it was known about how hard it is on the body long term) She never was able to go completely off of it and she suffered with bone fractures, had the moon face and thin, thin skin to where just a light brush against something could tear big swathes of her skin off. Some people, like her, just have no choice but to be on it. I'm so sorry that you are feeling so poorly and I am glad to have been able to meet you on DDC. You are such a warm and giving person and I hope you find peace, light and love!
So nice to hear from you. I will say a prayer for you!
I have a friend who I am close to that has multiple Myoleoma. Incurable cancer. She just had chemo and a blood marrow transplant. So she will be in remission soon for awhile but the cancer will come back unfortunately.
So I am really appreciating the time we have left with each other. We are both positive people so it's great.
Take care of yourself Karen!
Enjoy all that you can ok.
I'm so very sorry to hear that you are not well. I know we never seem to stop and smell the roses until the fear of it being taken away is near. I am glad to hear you are teaching others what you already know. You are right life is worth getting out there and living. Be well my friend, and thank you for all of your wisdom and knowledge. Hope to hear from you soon.
Aw Karen, I just read your post, I too haven't been on for awhile. I'm so sorry. You have been an angel sent from Heaven for me. You've helped me so much and I want you to know you have a lot to do with my recovery in the last couple of months and I think of you often. I've been off prednisone for quite awhile and my breathing and physical activists have improved. Love you Marti :)
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