Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Glad to hear from you but sorry you are not doing as well as you had hoped. Just hang in there.....it does get better but it takes time .....lots of time. Resting is good. It gives your muscles a chance to heal. Remember we are all going thru the same thing or have been there/done that so feel free to ask questions, gripe, or share good news. It's funny how you don't miss the little things until they are gone. One of my best " steps forward " was when I could take a shower by myself (and of course the walker) For several months my son who was taking care of me had to help me bathe. Very embarressing for the poor guy (age 35) but we both got thru it......LOL Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Hi and Happy Holidays to you, too. I remember being very worried about getting no exercise when I first got sick. (As you know, it's really impossible to exercise...it's almost impossible to get out of a chair!) I was introduced to Tai Chi during my physical therapy sessions, and I really liked it. However, I don't know if it really helped with strength, etc. The prednisone is a big help, but it isn't really a " cure " ...we all just have to hang in there and try our best to keep things going. Improvement takes a while, but it will come, . My legs feel like cement weights by afternoon, so I just stop what I'm doing and give myself some rest. I think the shakes are from the prednisone dosage. I remember it from my time on high doses. Things will get better. Annette Happy Holidays Dear Everyone, First and foremost I want to wish everyone a Happy Hanukkah and Merry Christmas. I hope that we all have a healthier New Year filled with good things to come. I don't write much but I am an avid reader and you guys are truly a stitch. I admire your humor and tenacity. Maybe someday we could organize our own " conference " . Wish I could have joined the lunch bunch. Sounded like lots of fun. I live in Cleveland Ohio, Snowbelt, which of course we have no snow this year, and I am heartbroken. Really love the snow. Very strange weather here. These past two months have been very difficult for me. I still can't believe I have this disease and how badly it has incapacitated me. I am still on 60mg. of prednisone and my CPK has dropped from 20K to 6K, so has my liver gone into the mid 200's and my aldolase has come down. Still not normal so they won't lower the pred.yet. My face is getting round, and I think I have put on some pounds. But what I find most frustrating is my level of fatigue. Why am I so shaky and tired all the time. I would say that 75% of time is spent sleeping/resting. My legs feel like they weigh 200lbs each. I think I should be improving and that really scares me. I used to feel blessed that it was only PM, and not MS or some other diseases, but now I wonder if we aren't as bad as they are? I want to go back to working, back to my old life and perhaps that is not going to happen? It is like a catch-22. I am being told to rest, not move, and I think that is making me weaker. Any suggestions or thoughts? Please bring me up to speed on everyone? Vicki, how are you doing, what are your days like? Ed, when are you going into the hospital? Did anyone have any thoughts about the restless leg syndrome and iron deficiencies? Hope to hear from you guys, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 , So good to hear from you. I grew up in Minnesota so I know all about snow, snow, snow. I always loved the first snow. Come February I was over it but something very magical about the big, first snowfall that left everything in a blanket of white. Perhaps you will have snow for Christmas. I'll cross my fingers for you. 's CPK level was in the normal range for a few months before his muscles caught on. He showed fast improvement with the prednisone but the CPK level was normal long before his muscles were. Hang in there! Hugs, Cari > >Reply-To: OurMyositis >To: ourmyositis >Subject: Happy Holidays >Date: Tue, 11 Dec 2001 23:05:07 -0800 (PST) > >Dear Everyone, > >First and foremost I want to wish everyone a Happy >Hanukkah and Merry Christmas. I hope that we all have >a healthier New Year filled with good things to come. > >I don't write much but I am an avid reader and you >guys are truly a stitch. I admire your humor and >tenacity. Maybe someday we could organize our own > " conference " . Wish I could have joined the lunch >bunch. Sounded like lots of fun. I live in Cleveland >Ohio, Snowbelt, which of course we have no snow this >year, and I am heartbroken. Really love the snow. >Very strange weather here. > >These past two months have been very difficult for me. > I still can't believe I have this disease and how >badly it has incapacitated me. I am still on 60mg. of >prednisone and my CPK has dropped from 20K to 6K, so >has my liver gone into the mid 200's and my aldolase >has come down. Still not normal so they won't lower >the pred.yet. My face is getting round, and I think I >have put on some pounds. But what I find most >frustrating is my level of fatigue. Why am I so shaky >and tired all the time. I would say that 75% of time >is spent sleeping/resting. My legs feel like they >weigh 200lbs each. I think I should be improving and >that really scares me. > >I used to feel blessed that it was only PM, and not MS >or some other diseases, but now I wonder if we aren't >as bad as they are? I want to go back to working, >back to my old life and perhaps that is not going to >happen? > >It is like a catch-22. I am being told to rest, not >move, and I think that is making me weaker. Any >suggestions or thoughts? > >Please bring me up to speed on everyone? Vicki, how >are you doing, what are your days like? Ed, when are >you going into the hospital? Did anyone have any >thoughts about the restless leg syndrome and iron >deficiencies? > >Hope to hear from you guys, > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Ellen, Thanks for the christmas wishes. I don't usually post messages but I have been reading the group for about 2 years. I am in permanent AF but it is not as bad as some people report. I have never been to ER. It is only when I rest that I feel the heart jumping around in my chest. Of course I can't do any vigorous exercise but I do a lot of walking. merry christmas to everyone from sunny Australia. regards Hans Happy Holidays > Happy Holidays everyone! Hope you enjoy the Christmas card. Click below > and be sure to include the sound! > > http://holidays.blastcomm.com > > Ellen > (7 days till Xmas) > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > For more information: http://www.dialsolutions.com/af > Unsubscribe: AFIBsupport-unsubscribe > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 In a message dated 12/19/2003 4:19:02 PM Pacific Standard Time, geottobeilz@... writes: << I am in permanent AF but it is not as bad as some people report. I have never been to ER. It is only when I rest that I feel the heart jumping around in my chest. Of course I can't do any vigorous exercise but I do a lot of walking. >> Hans, My brother, who has been in permanent afib for at least twenty to thirty years, says that he usually is not aware of symptoms. He does not feel the " jumping " sensation in the chest unless he overeats and goes to bed too soon. Unlike me, however, he can eat anything he chooses and has no problems. He reports that the only time he is aware of being in permanent afib is when he does strenuous exercise like chopping wood. He then feels sensations of weakness in his arms and legs but no sensations in his heart. He is always surprised to see how irregular his heart beat is when he is hooked up to a monitor, for example, after surgery. He has no sensation of the irregularity. However, he says that when he was still paroxysmal on the way to permanent afib, he had the continuous " jumping " sensations in the chest that many of us experience. Those sensations would keep him awake for nights at a time, but he didn't know what the problem was. He just went on with his life under great difficulty. He actually feels better now that he is in permanent afib. I'm sure this isn't true of everyone, however; but at least some people may actually feel better in permanent afib than when experiencing paroxysmal afib with its usual symptoms. in sinus in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2003 Report Share Posted December 20, 2003 Subject: Re: Happy Holidays Merry Christmas and Happy New Year to Hans and all Afibbers in sunny Australia from sunny, but cold, Wisconsin. Irene > Ellen, > > Thanks for the christmas wishes. I don't usually post messages but I have > been reading the group for about 2 years. I am in permanent AF but it is > not as bad as some people report. I have never been to ER. > It is only when I rest that I feel the heart jumping around in my chest. Of > course I can't do any vigorous exercise but I do a lot of walking. > > merry christmas to everyone from sunny Australia. > > regards > Hans > Happy Holidays > > > > Happy Holidays everyone! Hope you enjoy the Christmas card. Click below > > and be sure to include the sound! > > > > http://holidays.blastcomm.com > > > > Ellen > > (7 days till Xmas) > > > > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > > FAQ - > http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > > For more information: http://www.dialsolutions.com/af > > Unsubscribe: AFIBsupport-unsubscribe > > List owner: AFIBsupport-owner > > For help on how to use the group, including how to drive it via email, > > send a blank email to AFIBsupport-help > > > > Nothing in this message should be considered as medical advice, or should > be acted upon without consultation with one's physician. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 I'd like to send out a heartfelt Happy Holidays to all! A big Congratulations to all who have had transplants over the past year. A huge Thank You to all your donors for their gift of life. And a Humungous Thank You to everyone here for all the support and help you have all given me as I work my way thru the early stages of diagnosis. You all have been a lifesaver in some very desperate hours, Thank You Pierre for all you have done to bring this group into existence. May you Holidays be Joyous! Blessed Be, Amy Quote Link to comment Share on other sites More sharing options...
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