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. Miss Grumpy is here. I told my coworker today that I was starting the day out grumpy and that isn't a good thing. We work from home so all our conversations are by email. We have a lot in common even though there is a big difference in our ages, with me being the older. I am noticing lately that I am usually the older person in the room and i don't aways like that. I sometimes want to be the youngest.
She is a great coworker, always offering me words of encouragement and today she sent me fairies to make my day better. I have never been into that type of thing, but it feels good regardless.
I was grumpy because I had another doctor appt with my pain specialist just to get my monthly RX. Since it is a class 2 narcotic I have to go in each month and pay my $35 copay and have her give my pill botte a visual count to make sure that I am taking them and not selling them. I have been on opana for the past few months and continue to have none stopping pain. It never stops, I mean never. Last week her nurse practioner changed me to a new drug, Nucyra or something like that. I took it 4 days and I had to go back to the opana. The pain was so severe that I was about to go to the hospital so they could admit me and that is the last straw for me. I spent the entire weekend sitting on the sofa, crying. I had no idea that I could be in that much pain, so it showed me that the opana is working, but can't help my pain 100%. I told my pain specialist today that opana is helping about 50% and she said that is great if i get at least 50% relief because my pain can't be eliminated 100%. Now you know that is bad.
She walked in the treatment room today and told me that when she received the copy of the short term disability denial letter from Prudential she had one thing to tell me, get a lawyer. The same day that I had my daughter fax the denial letter from Prudential to my doctors, I also faxed an appeal letter to Prudential and hired an attorney. I can't continue to deteriorate and not be able to get the treatment that may offer me some relief because Prudential is only interested in their bottom line. I am suffering and not getting better.
Anyway, round 2 of my IVIG starts tomorrow. It is like 5 days of infusion with gold. I will let you all know how I feel at the end of each day. I will be staying in downtown St Pete again and hopefully will feel up to having the hotel shuttle take me to the Pier so that I can see it before they tear it down. I love the Pier just like so many others, but the city council is still tearing it down.
She is a great coworker, always offering me words of encouragement and today she sent me fairies to make my day better. I have never been into that type of thing, but it feels good regardless.
I was grumpy because I had another doctor appt with my pain specialist just to get my monthly RX. Since it is a class 2 narcotic I have to go in each month and pay my $35 copay and have her give my pill botte a visual count to make sure that I am taking them and not selling them. I have been on opana for the past few months and continue to have none stopping pain. It never stops, I mean never. Last week her nurse practioner changed me to a new drug, Nucyra or something like that. I took it 4 days and I had to go back to the opana. The pain was so severe that I was about to go to the hospital so they could admit me and that is the last straw for me. I spent the entire weekend sitting on the sofa, crying. I had no idea that I could be in that much pain, so it showed me that the opana is working, but can't help my pain 100%. I told my pain specialist today that opana is helping about 50% and she said that is great if i get at least 50% relief because my pain can't be eliminated 100%. Now you know that is bad.
She walked in the treatment room today and told me that when she received the copy of the short term disability denial letter from Prudential she had one thing to tell me, get a lawyer. The same day that I had my daughter fax the denial letter from Prudential to my doctors, I also faxed an appeal letter to Prudential and hired an attorney. I can't continue to deteriorate and not be able to get the treatment that may offer me some relief because Prudential is only interested in their bottom line. I am suffering and not getting better.
Anyway, round 2 of my IVIG starts tomorrow. It is like 5 days of infusion with gold. I will let you all know how I feel at the end of each day. I will be staying in downtown St Pete again and hopefully will feel up to having the hotel shuttle take me to the Pier so that I can see it before they tear it down. I love the Pier just like so many others, but the city council is still tearing it down.
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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 have had 3 rounds of IVIG and it works wonders. If you get to go to the pier, I hope it is a peaceful time for you where you can truly reflect and gather your thoughts. Life doesn't stop long enough for me to really wrap my head around this disease or plan my next move. Sometimes we have to make time and dig deep into our emotions. You will be in my prayers.
Pain is difficult to handle and you are in my prayers. Keep us posted.