Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hello Zanna and thanks for the welcome. I was dx'd in August but started having burning pain in my legs in January, rash in April; by May I couldn't rise from a seated position or rollover in bed. I ended up in the hospital after seeing a rheumatologist. I kept falling a lot. I even fell a lot while in the hospital. I have been home a month now and only fell once or twice. My original CPK was 20,000 and is now down to 500 or so. The rheumy wants to start me on IVIg but I am having trouble getting the insurance co. to go along with it. We did have some good news yesterday, the doc's office says the insurance co. has agreed to do it. I want something in writing first though because we can't afford to pick up the tab if someone is wrong. I saw your website. It is very informative. I only have one page dedicated to dermatomyositis on my website. I am 42 and married. We have two grown girls, ages 24 and 20. One is expecting a baby this month. I am looking forward to being a grandma but had planned on babysitting before my Dx. Now I will be lucky if I can even hold the child. Hopefully I will continue to improve. Everyone in the group has been very informative and supportive, and each gives me new hope for improvement! Take care! SAB Re: Hello SAB I agree with Teddi. The best part of the conference was meeting everyone and putting names with faces. Teddi, Vicki, Candy and I had a terrific time visiting with each other. I also met some other wonderful people. We met Cheri, whose wedding Vicki and I just traveled to Vegas to see. This is a wonderful support group. I think we should try to have our own conference in Vegas next year as someone suggested if the MAA isn't already doing it!! Anyway, SAB, welcome to the group. I haven't heard your specifics. I am Zanna, 34 years young, dx 4 years ago on New Year's Eve after approx. 4 years or more of misdiagnosis. You can read my story at my website at www.polymyositis.info . This group is the best thing to happen to me since dx (my dx was the first best thing!). Without the guys on this group, I may go crazy (it would be a short trip for sure!).Anyway, welcome!Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hello Zanna and thanks for the welcome. I was dx'd in August but started having burning pain in my legs in January, rash in April; by May I couldn't rise from a seated position or rollover in bed. I ended up in the hospital after seeing a rheumatologist. I kept falling a lot. I even fell a lot while in the hospital. I have been home a month now and only fell once or twice. My original CPK was 20,000 and is now down to 500 or so. The rheumy wants to start me on IVIg but I am having trouble getting the insurance co. to go along with it. We did have some good news yesterday, the doc's office says the insurance co. has agreed to do it. I want something in writing first though because we can't afford to pick up the tab if someone is wrong. I saw your website. It is very informative. I only have one page dedicated to dermatomyositis on my website. I am 42 and married. We have two grown girls, ages 24 and 20. One is expecting a baby this month. I am looking forward to being a grandma but had planned on babysitting before my Dx. Now I will be lucky if I can even hold the child. Hopefully I will continue to improve. Everyone in the group has been very informative and supportive, and each gives me new hope for improvement! Take care! SAB Re: Hello SAB I agree with Teddi. The best part of the conference was meeting everyone and putting names with faces. Teddi, Vicki, Candy and I had a terrific time visiting with each other. I also met some other wonderful people. We met Cheri, whose wedding Vicki and I just traveled to Vegas to see. This is a wonderful support group. I think we should try to have our own conference in Vegas next year as someone suggested if the MAA isn't already doing it!! Anyway, SAB, welcome to the group. I haven't heard your specifics. I am Zanna, 34 years young, dx 4 years ago on New Year's Eve after approx. 4 years or more of misdiagnosis. You can read my story at my website at www.polymyositis.info . This group is the best thing to happen to me since dx (my dx was the first best thing!). Without the guys on this group, I may go crazy (it would be a short trip for sure!).Anyway, welcome!Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hello Zanna and thanks for the welcome. I was dx'd in August but started having burning pain in my legs in January, rash in April; by May I couldn't rise from a seated position or rollover in bed. I ended up in the hospital after seeing a rheumatologist. I kept falling a lot. I even fell a lot while in the hospital. I have been home a month now and only fell once or twice. My original CPK was 20,000 and is now down to 500 or so. The rheumy wants to start me on IVIg but I am having trouble getting the insurance co. to go along with it. We did have some good news yesterday, the doc's office says the insurance co. has agreed to do it. I want something in writing first though because we can't afford to pick up the tab if someone is wrong. I saw your website. It is very informative. I only have one page dedicated to dermatomyositis on my website. I am 42 and married. We have two grown girls, ages 24 and 20. One is expecting a baby this month. I am looking forward to being a grandma but had planned on babysitting before my Dx. Now I will be lucky if I can even hold the child. Hopefully I will continue to improve. Everyone in the group has been very informative and supportive, and each gives me new hope for improvement! Take care! SAB Re: Hello SAB I agree with Teddi. The best part of the conference was meeting everyone and putting names with faces. Teddi, Vicki, Candy and I had a terrific time visiting with each other. I also met some other wonderful people. We met Cheri, whose wedding Vicki and I just traveled to Vegas to see. This is a wonderful support group. I think we should try to have our own conference in Vegas next year as someone suggested if the MAA isn't already doing it!! Anyway, SAB, welcome to the group. I haven't heard your specifics. I am Zanna, 34 years young, dx 4 years ago on New Year's Eve after approx. 4 years or more of misdiagnosis. You can read my story at my website at www.polymyositis.info . This group is the best thing to happen to me since dx (my dx was the first best thing!). Without the guys on this group, I may go crazy (it would be a short trip for sure!).Anyway, welcome!Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Lem! I am just doing physical therapy exercises on my own at home. My insurance copay is 20$ for each homehealth visit and they wanted PT twice a week, OT twice a week, a nurse and aide twice a week each; that comes to 160$ a week! Can't afford that, that's for sure. Sorry to hear that your wife has MS too. My hubby had neck surgery in January and was off work until April recovering. That is one reason I waited so long to go to the doctor with my complaints earlier in the year. I was trying to take care of him and didn't want to incur any more hospital bills at the time. Guess I should have gone to the doc instead. Let me know how things go at the MDA clinic. I have thought about going to ours here at UT Southwestern. I hear you have to have a referral to get in though. My rheumy is just not compassionate enough about my pain, although the treatments he is giving me seem to be working. I am curious to see what they can do for you. Take care! SAB Re: Hello SAB Hi SAB, are you taking any PT? I took some in the hospital and then when I came home. The doctors think it would help me but my ins. co. won't pay for it. They want my wife to learn how to give me the PT. She has MS and has a harder time standing straight and walking a straight line herself. I understand how hard it is to be patient, I think this disease really helps us to learn that, if we want to or not, haha. It felt like to me I was taking baby steps at times, 1 step forward then I would fall 3 backwards but I made it and so will you. I do have muscle damage so I'm not normal but people tell me I never was. I have been able to go back to work which is frustrating. Gosh, I wish I could drive my car. But I will one of these days, baby steps first. It was really hard for me to use a wheelchair and then I would run into people that I knew and didn't know I had been sick so they were very surprised and said stupid things. You just use your equipment and do what you need to do to help yourself. I think I remember the doctors told me it takes 2-3 months to get the metho in your system before it starts helping. I have a apt. with the MDA clinic the 27th Nov. I am curious as to what they can do for me if anything. I have not been to any myositis support groups. Where are they at? Hope you are doing better today, take care, lem> > Hi SAB> > Let me add my "Welcome" to the rest of them.> > I'm Teddi from Oklahoma City. I have had> > DM for almost 7 years. In the process of> > trying to get off the prednisone and am down> > to 4mg.....the lowest I have ever gotten..> > I know you will enjoy this group. Not only> > is it informative.........we have got some> > pretty good researchers in the group......> > but we have fun, a place to moan & whine> > and a lot of love.> > > > > > Teddi> > mailto:teddifromok@w...> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Lem! I am just doing physical therapy exercises on my own at home. My insurance copay is 20$ for each homehealth visit and they wanted PT twice a week, OT twice a week, a nurse and aide twice a week each; that comes to 160$ a week! Can't afford that, that's for sure. Sorry to hear that your wife has MS too. My hubby had neck surgery in January and was off work until April recovering. That is one reason I waited so long to go to the doctor with my complaints earlier in the year. I was trying to take care of him and didn't want to incur any more hospital bills at the time. Guess I should have gone to the doc instead. Let me know how things go at the MDA clinic. I have thought about going to ours here at UT Southwestern. I hear you have to have a referral to get in though. My rheumy is just not compassionate enough about my pain, although the treatments he is giving me seem to be working. I am curious to see what they can do for you. Take care! SAB Re: Hello SAB Hi SAB, are you taking any PT? I took some in the hospital and then when I came home. The doctors think it would help me but my ins. co. won't pay for it. They want my wife to learn how to give me the PT. She has MS and has a harder time standing straight and walking a straight line herself. I understand how hard it is to be patient, I think this disease really helps us to learn that, if we want to or not, haha. It felt like to me I was taking baby steps at times, 1 step forward then I would fall 3 backwards but I made it and so will you. I do have muscle damage so I'm not normal but people tell me I never was. I have been able to go back to work which is frustrating. Gosh, I wish I could drive my car. But I will one of these days, baby steps first. It was really hard for me to use a wheelchair and then I would run into people that I knew and didn't know I had been sick so they were very surprised and said stupid things. You just use your equipment and do what you need to do to help yourself. I think I remember the doctors told me it takes 2-3 months to get the metho in your system before it starts helping. I have a apt. with the MDA clinic the 27th Nov. I am curious as to what they can do for me if anything. I have not been to any myositis support groups. Where are they at? Hope you are doing better today, take care, lem> > Hi SAB> > Let me add my "Welcome" to the rest of them.> > I'm Teddi from Oklahoma City. I have had> > DM for almost 7 years. In the process of> > trying to get off the prednisone and am down> > to 4mg.....the lowest I have ever gotten..> > I know you will enjoy this group. Not only> > is it informative.........we have got some> > pretty good researchers in the group......> > but we have fun, a place to moan & whine> > and a lot of love.> > > > > > Teddi> > mailto:teddifromok@w...> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi SAB, I am hoping the MDA might help with the PT, it will be interesting to see what comes with that, if anything. My primary doctor is very nice about getting me refferals and he also says he will not let me hurt. He understands there is pain with DM, alot of doctors don't. Don't worry about not being able to hold your grandbaby on your own, you WILL get stronger and others can help you lift/hold the baby until your able to do it on your own. My wife, beck just says with her MS a person just has to be creative and figure out new ways of getting things done. Hope your having a good wekend, lem > > > Hi SAB > > > Let me add my " Welcome " to the rest of them. > > > I'm Teddi from Oklahoma City. I have had > > > DM for almost 7 years. In the process of > > > trying to get off the prednisone and am down > > > to 4mg.....the lowest I have ever gotten.. > > > I know you will enjoy this group. Not only > > > is it informative.........we have got some > > > pretty good researchers in the group...... > > > but we have fun, a place to moan & whine > > > and a lot of love. > > > > > > > > > Teddi > > > mailto:teddifromok@w... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hi Zanna, Thanks for the encouragement. The URL is www.memebers.tripod.com/sabyrdie or you can look for the bookmark at the myositis group. SAB Re: Hello SAB SAB,Don't worry, you will be able to hold your grandchildren someday. My son was born 10 weeks early and when we brought him home I was getting very sick. He was only 5 pounds and I couldn't get out of a chair with him in my arms. I had to put him on the floor and use both my arms to get up and then pick him up. I couldn't even carry him to walk very far. I did improve and so will you. He is 4 now and nearly 40 pounds and 46 inches tall. I can carry him about 10 feet but that is only if he stands on the bed and holds me. I cannot pick him up and don't even try. I have learned to do things differently with him that I did with my daughter. He and I do a lot of coloring and computer games. My daughter and I used to walk every where and do gardening. They will still love you just as much. It isn't what you can do with them, it is what you can instill in them that counts.Where is your web page? I would love to read it.Take care,Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hi Zanna, Thanks for the encouragement. The URL is www.memebers.tripod.com/sabyrdie or you can look for the bookmark at the myositis group. SAB Re: Hello SAB SAB,Don't worry, you will be able to hold your grandchildren someday. My son was born 10 weeks early and when we brought him home I was getting very sick. He was only 5 pounds and I couldn't get out of a chair with him in my arms. I had to put him on the floor and use both my arms to get up and then pick him up. I couldn't even carry him to walk very far. I did improve and so will you. He is 4 now and nearly 40 pounds and 46 inches tall. I can carry him about 10 feet but that is only if he stands on the bed and holds me. I cannot pick him up and don't even try. I have learned to do things differently with him that I did with my daughter. He and I do a lot of coloring and computer games. My daughter and I used to walk every where and do gardening. They will still love you just as much. It isn't what you can do with them, it is what you can instill in them that counts.Where is your web page? I would love to read it.Take care,Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hi Zanna, Thanks for the encouragement. The URL is www.memebers.tripod.com/sabyrdie or you can look for the bookmark at the myositis group. SAB Re: Hello SAB SAB,Don't worry, you will be able to hold your grandchildren someday. My son was born 10 weeks early and when we brought him home I was getting very sick. He was only 5 pounds and I couldn't get out of a chair with him in my arms. I had to put him on the floor and use both my arms to get up and then pick him up. I couldn't even carry him to walk very far. I did improve and so will you. He is 4 now and nearly 40 pounds and 46 inches tall. I can carry him about 10 feet but that is only if he stands on the bed and holds me. I cannot pick him up and don't even try. I have learned to do things differently with him that I did with my daughter. He and I do a lot of coloring and computer games. My daughter and I used to walk every where and do gardening. They will still love you just as much. It isn't what you can do with them, it is what you can instill in them that counts.Where is your web page? I would love to read it.Take care,Zanna Quote Link to comment Share on other sites More sharing options...
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