Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 debQ You are truly blessed!!! Isn't it odd that sometimes we start out trying to up lift someone else and we are encouraged as well? This am I was really upset with my husband for " taking the checkbook " to work. I had planned to go to the chiropractor and get some other things from the health food store. How dare he take " my " check book. Good thing I couldn't reach him at work or I would of filled his ear. haha Then I sat down at the computer and downloard my mail. I had an encouraging e-mail from my sister in Kansas. (She always makes me smile. I'm the only one who gets her corny jokes.....And that's scary.) And then I began reading the e-mails from the different list that I'm on. How can you be mad when you read how some are encouraging others. And I began to count my blessings too! After all, I'm married to the sweetest man there is and he is supportive, even is he is a little forgetful. I should complain,right? I who have bouts of " brain fog " . Just reading about your blessings made me count mine again. [[[[[[[[[[[[[HUGS]]]]]]]]]]]]]] Judi Re: Carol--Family support >From: deb Quaife <totoq@...> > >I can relate - > >My hub is wonderful and supportive, but is just now really grasping the >extent of this. >My grandmother, after 3 years, has finally figured out that there isn't >anything that the doctor can do to magically FIX it. She just started >getting worried this last week. well at 87 she can be forgiven. >My Sister-in-law started looking up fibromyalgia on the web and said I >had no idea and then explained it to my BIL and step-son. > >Sometimes it just takes a while for our loved ones to grasp that we >would give anything to not feel the way we do. That it would be great >to be able to plan to go somewhere and then not have to worry whether we >will actually be able to do it or not. > >I would love to play with the dogs for more than 5 minutes before being >exhausted. >I'd like to take long walks and not have to worry about passing out >somewhere along the way. >I'd like to be able to make a date to go somewhere, rather than just >pass on opportunities. >I'd like to be strong enough to do all the housework, gardening, and >crafts that I used to do while holding a full time job. >I'd like to be able to work at a job, but I wouldn't hire me. > >After a while, those realizations came around to my family and friends. >They see the hope that is on my face when I try a new med, that this one >will work. They see the desperation when it doesn't work, and we move >on to the next one. They laugh with me when I swear that the satellite >dish has turned in the windstorm, and it's actually facing the same way >it has for 5 years. They hold me when I cry and massage me when my back >hurts. They realize that I didn't ask to have this disease. > >In many way, I'm lucky, because even though I have fibromyalgia, I have >support and love. I have not only my friends, family but a wonderful >doctor that listens to me and tries and reads information. She is also >a great strength to me and I am lucky to have her on my side, she can >read on my face as soon as she walks in the room whether the new > " cocktail " is working or not. > >Wow, don't know where all that came from, but I feel lucky to have a >wonderful group of friends on the internet that I can post it too. > >deb Q > > >------------------------------------------------------------------------ >Tired of empty chat rooms and out of date bulletin boards? >http://www.ONElist.com >ONElist: Making the Internet Intimate >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 April, Your daughter will some day look back and be glad that she had a mother that would cuddle. My daughter is married and lives in northern California. She will be 26 next month, she's the apple of my eye. I wish I had taken more time to " cuddle " . Every once in awhile she will call me and tell me that she really NEEDS a MOM HUG. So " cuddle " lots now! Judi Carol--Family support >From: April L Tyree <tyree.pines@...> > >Carol, > >Reading your post about how family and friends aren't very supportive hit >a nerve with me. You see, I'm a healthy person who watched as my then >eight-year-old daughter (she's now 10) struggle with what I later learned >was CFS. I often wondered before her diagnosis whether she were really >sick and was making up symptoms to get attention, get out of school, or, >worst of all, if she was becoming mentally ill. It's hard for someone on >the outside to relate to what you're going through. Yet, those >relationships that were strong before the illness, after a time of >testing, will likely strengthen more, especially as those people learn >more about your illness. Gail has a wealth of material that would >probably help those close to you understand more about it. I would >suggest you share those with your husband and closest friends. Then give >them time. > >Looking back, it just makes my heart ache to think of all the additional >pressure I put on my daughter to just " get past it " . The up and down >nature of the illness, the changing patterns of symptoms, and all the >negative results from the lab tests make it that much harder for a >healthy person to recognize CFS as a genuine, physical disorder. A >little education and patience are needed. Remember, while you're >adjusting to living with this illness, those closest to you are having to >adjust to a new, less " perfect " you, as well. > >Gotta go. My daughter is on one of her down cycles today and is pleading >with me to cuddle her. > >God bless you, > >April > >___________________________________________________________________ >You don't need to buy Internet access to use free Internet e-mail. >Get completely free e-mail from Juno at http://www.juno.com/getjuno.html >or call Juno at (800) 654-JUNO [654-5866] > >------------------------------------------------------------------------ >Share the wealth! >http://www.ONElist.com >Tell a friend about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Carol, Reading your post about how family and friends aren't very supportive hit a nerve with me. You see, I'm a healthy person who watched as my then eight-year-old daughter (she's now 10) struggle with what I later learned was CFS. I often wondered before her diagnosis whether she were really sick and was making up symptoms to get attention, get out of school, or, worst of all, if she was becoming mentally ill. It's hard for someone on the outside to relate to what you're going through. Yet, those relationships that were strong before the illness, after a time of testing, will likely strengthen more, especially as those people learn more about your illness. Gail has a wealth of material that would probably help those close to you understand more about it. I would suggest you share those with your husband and closest friends. Then give them time. Looking back, it just makes my heart ache to think of all the additional pressure I put on my daughter to just " get past it " . The up and down nature of the illness, the changing patterns of symptoms, and all the negative results from the lab tests make it that much harder for a healthy person to recognize CFS as a genuine, physical disorder. A little education and patience are needed. Remember, while you're adjusting to living with this illness, those closest to you are having to adjust to a new, less " perfect " you, as well. Gotta go. My daughter is on one of her down cycles today and is pleading with me to cuddle her. God bless you, April ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Can you imagine how awful this was to have been diagnosed in the early 80,s as I . No one knew anyting about any of these illneses! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 I can relate - My hub is wonderful and supportive, but is just now really grasping the extent of this. My grandmother, after 3 years, has finally figured out that there isn't anything that the doctor can do to magically FIX it. She just started getting worried this last week. well at 87 she can be forgiven. My Sister-in-law started looking up fibromyalgia on the web and said I had no idea and then explained it to my BIL and step-son. Sometimes it just takes a while for our loved ones to grasp that we would give anything to not feel the way we do. That it would be great to be able to plan to go somewhere and then not have to worry whether we will actually be able to do it or not. I would love to play with the dogs for more than 5 minutes before being exhausted. I'd like to take long walks and not have to worry about passing out somewhere along the way. I'd like to be able to make a date to go somewhere, rather than just pass on opportunities. I'd like to be strong enough to do all the housework, gardening, and crafts that I used to do while holding a full time job. I'd like to be able to work at a job, but I wouldn't hire me. After a while, those realizations came around to my family and friends. They see the hope that is on my face when I try a new med, that this one will work. They see the desperation when it doesn't work, and we move on to the next one. They laugh with me when I swear that the satellite dish has turned in the windstorm, and it's actually facing the same way it has for 5 years. They hold me when I cry and massage me when my back hurts. They realize that I didn't ask to have this disease. In many way, I'm lucky, because even though I have fibromyalgia, I have support and love. I have not only my friends, family but a wonderful doctor that listens to me and tries and reads information. She is also a great strength to me and I am lucky to have her on my side, she can read on my face as soon as she walks in the room whether the new " cocktail " is working or not. Wow, don't know where all that came from, but I feel lucky to have a wonderful group of friends on the internet that I can post it too. deb Q Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 In a message dated 4/14/99 5:41:33 PM Eastern Daylight Time, ms-canplat@... writes: << Does anyone have any advice on how to educate people when they ask what this is? >> We have a one page brochure that can explain this illness to any lay person. If you'd like a copy, just send me your snail mail address. You can request any number so you can hand them out to anybody who says to you, " Oh, you're STILL sick? " Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dear April: Thanks for the sage advice. I will try to " put the shoe on the other foot " and understand better where they are coming from. I know they don't want to accept that I am ill, and they just want the best for me. Thanks for reminding me! You seem like a very special person to be so well attuned with your daughters illness. God bless you, too! Your friend, Carol Carol--Family support > From: April L Tyree <tyree.pines@...> > > Carol, > > Reading your post about how family and friends aren't very supportive hit > a nerve with me. You see, I'm a healthy person who watched as my then > eight-year-old daughter (she's now 10) struggle with what I later learned > was CFS. I often wondered before her diagnosis whether she were really > sick and was making up symptoms to get attention, get out of school, or, > worst of all, if she was becoming mentally ill. It's hard for someone on > the outside to relate to what you're going through. Yet, those > relationships that were strong before the illness, after a time of > testing, will likely strengthen more, especially as those people learn > more about your illness. Gail has a wealth of material that would > probably help those close to you understand more about it. I would > suggest you share those with your husband and closest friends. Then give > them time. > > Looking back, it just makes my heart ache to think of all the additional > pressure I put on my daughter to just " get past it " . The up and down > nature of the illness, the changing patterns of symptoms, and all the > negative results from the lab tests make it that much harder for a > healthy person to recognize CFS as a genuine, physical disorder. A > little education and patience are needed. Remember, while you're > adjusting to living with this illness, those closest to you are having to > adjust to a new, less " perfect " you, as well. > > Gotta go. My daughter is on one of her down cycles today and is pleading > with me to cuddle her. > > God bless you, > > April > > ___________________________________________________________________ > You don't need to buy Internet access to use free Internet e-mail. > Get completely free e-mail from Juno at http://www.juno.com/getjuno.html > or call Juno at (800) 654-JUNO [654-5866] > > ------------------------------------------------------------------------ > Share the wealth! > http://www.ONElist.com > Tell a friend about ONElist's 115,000 free e-mail communities! > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dear Deb: I understand just what you are saying. Every time I tried a new antibiotic (before the Fibro was diagnosed) I thought...finally, this will work! Now I'll be normal! (Deep down I knew it wouldn't be that easy, but the hope was there.) Now, I know that my expectations can't be as high as they once were, and I have to be patient. And, everyone at work keeps asking how they cure this! I want to just photocopy a one page explaination, and post it by my office. Any ideas on a website that has an explaination in a nutshell? But, I don't think I'd post it, just give it to people who I really want to share it with. Once the TMJ pain is better, at least I'll only have the fibro to cope with (!), and I know once I start limiting myself and quit trying to do everything, I should improve. Does anyone have any advice on how to educate people when they ask what this is? Thanks in advance. Hugs, Carol Re: Carol--Family support > From: deb Quaife <totoq@...> > > I can relate - > > My hub is wonderful and supportive, but is just now really grasping the > extent of this. > My grandmother, after 3 years, has finally figured out that there isn't > anything that the doctor can do to magically FIX it. She just started > getting worried this last week. well at 87 she can be forgiven. > My Sister-in-law started looking up fibromyalgia on the web and said I > had no idea and then explained it to my BIL and step-son. > > Sometimes it just takes a while for our loved ones to grasp that we > would give anything to not feel the way we do. That it would be great > to be able to plan to go somewhere and then not have to worry whether we > will actually be able to do it or not. > > I would love to play with the dogs for more than 5 minutes before being > exhausted. > I'd like to take long walks and not have to worry about passing out > somewhere along the way. > I'd like to be able to make a date to go somewhere, rather than just > pass on opportunities. > I'd like to be strong enough to do all the housework, gardening, and > crafts that I used to do while holding a full time job. > I'd like to be able to work at a job, but I wouldn't hire me. > > After a while, those realizations came around to my family and friends. > They see the hope that is on my face when I try a new med, that this one > will work. They see the desperation when it doesn't work, and we move > on to the next one. They laugh with me when I swear that the satellite > dish has turned in the windstorm, and it's actually facing the same way > it has for 5 years. They hold me when I cry and massage me when my back > hurts. They realize that I didn't ask to have this disease. > > In many way, I'm lucky, because even though I have fibromyalgia, I have > support and love. I have not only my friends, family but a wonderful > doctor that listens to me and tries and reads information. She is also > a great strength to me and I am lucky to have her on my side, she can > read on my face as soon as she walks in the room whether the new > " cocktail " is working or not. > > Wow, don't know where all that came from, but I feel lucky to have a > wonderful group of friends on the internet that I can post it too. > > deb Q > > > ------------------------------------------------------------------------ > Tired of empty chat rooms and out of date bulletin boards? > http://www.ONElist.com > ONElist: Making the Internet Intimate > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Dear Gail: That would be fabulous! My address is: Carol c/o TPC 1350 Sheeler Rd. Apopka, FL 32703 I'll be looking forward to it! Thanks again. Carol Re: Carol--Family support > From: GAILRONDA@... > > In a message dated 4/14/99 5:41:33 PM Eastern Daylight Time, > ms-canplat@... writes: > > << Does anyone have any advice on how to educate people when they ask what > this > is? > >> > We have a one page brochure that can explain this illness to any lay person. > If you'd like a copy, just send me your snail mail address. You can request > any number so you can hand them out to anybody who says to you, " Oh, you're > STILL sick? " > Gail > > ------------------------------------------------------------------------ > Did you know that knowledge is power? > http://www.ONElist.com > Join a new ONElist e-mail community and strengthen your mind! > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Gail, I'd like a copy of this too. Thanks. I owe you. Judi Hoynacki 16975 Lime Street Hesperia, Ca. 92345 Re: Carol--Family support >From: FDSCAFE@... > > >In a message dated 4/14/99 3:12:30 PM, GAILRONDA@... writes: > ><<We have a one page brochure that can explain this illness to any lay >person. >If you'd like a copy, just send me your snail mail address. >> > >Gail: >I sure would like a copy of this: >Dianne Smalley >1262 DeCunha Ct. >Salinas, CA 93906 > >Thanks! > >------------------------------------------------------------------------ >You can now easily share photos and documents with your fellow list members >http://www.ONElist.com >Check out our homepage for details on how to use our new shared files feature! >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 In a message dated 4/14/99 3:12:30 PM, GAILRONDA@... writes: <<We have a one page brochure that can explain this illness to any lay person. If you'd like a copy, just send me your snail mail address. >> Gail: I sure would like a copy of this: Dianne Smalley 1262 DeCunha Ct. Salinas, CA 93906 Thanks! Quote Link to comment Share on other sites More sharing options...
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