Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hello friends. It has been almost two years since I was diagnosed with PM and my life was taken over by this beast. It wasn't long after my 17 day hospital stay that I found this support group online and I am thankful everyday that I did. You all have been my strength in my weakest times. I can chat with you all about any and everything and I have. You all know what it is like to have pain 24 hours of every single day. You know what it is like to spend all your income on medications and doctors visits. You know what it is like to look in the mirror and not recognize the person who looks back at you. You know what it is like as a woman to lose control of your womanly manners.
When all I can do is cry, I can count on you all to pray for me and to encourage me. When I feel like laughing, even at myself, you laugh along with me. You all have given me advice on which medication treatment to try and which to stay away from. I hope that one day, there will be a true treatment and hopefully even a cure for this beast and that one day we will get to meet in person. Until those times, I plan to continue on my quest for better days. I plan to continue praying for and with you. I will hopefully have more up days than down days. Today is an up day. My father's homegoing service is today, but I am not able to be there and it is okay with me, because I really do not want to see him in a casket and I especially do not want to see that casket closed on him. I want to remember him as I last saw him. I am going to make sure to not allow satan to interfer with my joy. I am going to count my Blessings and thank the Lord for allowing me to see another day and to get up and down as many times as I possibly can. The more I move the better I feel. Amen.
When all I can do is cry, I can count on you all to pray for me and to encourage me. When I feel like laughing, even at myself, you laugh along with me. You all have given me advice on which medication treatment to try and which to stay away from. I hope that one day, there will be a true treatment and hopefully even a cure for this beast and that one day we will get to meet in person. Until those times, I plan to continue on my quest for better days. I plan to continue praying for and with you. I will hopefully have more up days than down days. Today is an up day. My father's homegoing service is today, but I am not able to be there and it is okay with me, because I really do not want to see him in a casket and I especially do not want to see that casket closed on him. I want to remember him as I last saw him. I am going to make sure to not allow satan to interfer with my joy. I am going to count my Blessings and thank the Lord for allowing me to see another day and to get up and down as many times as I possibly can. The more I move the better I feel. Amen.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I think it is wise not to remember your dad from a casket. The body in the casket is actually an empty tent because your dad is not there.
Isn't it the greatest joy in knowing that your dad has eternal life and is in the presence of The Lord?!!! I know you will miss him here, but he is in the best place. I know with my dad, I can almost envy the fact he gets to talk to all the people in the bible. I am sure your dad is speechless and thrilled to meet those people too!
I remember when my brother died in an automobile accident. The hospital wanted us to identify the body. My dad went to the identification. I did not want my last memory to be fixed on a tent without a soul. I have some nice pictures where I can remember my brother. I also speak to some of his friends that will share some fun moments. I do know that my brother's last day on earth was at the beach with friends and he had a great time. My brother is with my dad and Our Savior, The Lord Jesus Christ.
Our dreaded beast of DM/PM needs better meds. I am trying to keep my mind off how I feel and onto new things of interest.
I wish you well as your press forward. You continue to be in my prayers.
My life, just like everyone else was cooking along fine until I received the DM surprise three years ago. This disease has caused a great loss in stamina. I also need to lay down several times during the day because I just do not feel well. I get too tired to do anything. I could go on about other body feelings, but the point is that I am not my normal self. I have needed to make decisions that were right for my health, but bad for my pocketbook.
I am at the place where I am considering what to do for a new career. I know that DM with my cardiac, liver, and brain involvement makes it hard to figure out a good direction. I am trying to stay positive and not be negative about what is realistic in this situation. I would love to just pretend I do not have DM, and do what I would like for a job. I get reminded a few minutes later when I feel bad that ignoring DM is not possible. To use an analogy, It is almost like pretending that everything is fine while working in an office filled with killer bees.
Thank you for your kind and supportive words. I always appreciate any suggestions.
Hang in there. There is hope in every day!
Dave - prednisone increases my anxiety and I take an anti anxiety med to offset it. Some of us are more sensitive with pred than others. There is another type of pred named Sudromedrol I believe, that. Makes one less anxious.
To have our lives changed and adjusting to a new normal is depressing. Depression comes with chronic illness. The way I have coped is to focus on my blessings, even writing them down, and listening to KLOVE during the day. I was on an antidepressant before is and continue to be.
Hope that helps -:)