Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 GROUP))))RENEE((((( TAWNY))))))JUDY,DELMAR(((((BONNIE((((DEBS N FLORIDA>>> .........GROUP, I read the posts here and amazed how they sound exactly how I feel. People just don't know unless they actually been there. My husband said so-n-so on disability and he looks fine. Appearances ARE deceiving. I tried to explain the 20 spoon theory, he didnt understand but than again I didnt at one time also. ........Bonnie, I read your post about taking a hammer and hitting their joints, to understand the pain haaaaa. Yes than they would truly know. My hubby said something similar to that. He said, " Tell your family if they want you to take walks with them, let me hit their knees with a sledge hammer and than see if they still want to take walks (haaaaaa). I know when we can, we need to move around. .........DebsNflorida, I love the way you said gentle long distance hugs. It is so precious to care like that. ..........JUDY,DELMAR, I have sleep apnea also. I just wanted to tell you, I know how cumbersom they are. A few years ago my doctor addmitted me in the hospital with what he thought was phneumonia. I quit wearing my c-pap for awhile cause it was awful to wear. When he realesed me from the hosp. he said I had a choice. Either wear the c-pap or I have to put a breathing hole in your neck. (he didnt call it that) I been wearing the c-pap ever since. I still hate it, but I don't want a hole in my neck. So sorry you have to have it. ..........RENEE, Wow, OMG, Five kids. You are amazing. .. I guess when one don't have a choice they do what they have to do regardless. I have 4 kids and didnt have RA than and it was hard enough. I went to school, worked, and took care of the kids. I didn't think I could go on sometimes. With this pain now, I can't imagine doing it myself. God bless you. .........Tawny, I had that happen to me last year from my lyrcia, and plagunil. I itched and burned like fire. I became allergic out of the blue. I know what you went through. Yep, people just don't know till they walk a mile in our shoes. I thing my family is in denial. They want me to exercise and they know I can't do it. I have congestive heart failure, pulmoney arterial hypertention (suppose to be a rare disease). Enlarged right atrium (of the heart), 3 types of arthritis, diabetes and all the little things that go with these. Like fatique, irratable bowel syndrone, High blood pressure, constant head aches, sleep apnea, According to the net, one with PAH has about 5 years before they need a lung transplant unless caught in time, and my family can't understand why I am so sick ALL the time. I live by the spoon theory literally. I know they love me, I think they are in denial. My mom asked my hubby how come he does all the house work. (I wasnt around) he said, " cause she's in freaking pain all the time. I fussed at him for talking like that to her. She is my precious mommy. I do certain chores, like, put my forarms on the sink and I wash the dishes. He has to put them away and do the heavy pots and pans. I can fold clothes on the bed. He has to put them in the washer and take them out. He did none of this when I was well so he knows how hard it is for me. When I get a flare, I become very weak, I take some pain pills, head for my bedroom, lie very still on the bed and make myself comfortable as I can. And pray. I can't walk 10 feet till I am out of breath like a sprinter. I have a wheel chair from my insurance. I use it only when we are away from the house. If I go to the kitchen to get a drink, on the way back to my room I have to stop and sit on the couch cause I am out of breath. It's not my lungs doing it, its the congestive heart failure. My doctor said my heart is to weak to pump for my body. I have Osteo arthritis, bursitis, rheumatoid. fibromyalgia (had fibro before it was even invented. I read that RA is the worst arthritis to have. And my family wants me to do things with them. I can't even leave the house with out my husband. If something happen to him I would have to go into a nursing home. My fingers and toes have no cushion between them. I told my rhuemy to exray them cause they hurt so bad. She made me look at the x-ray. She explained it to me. The bone spurs made me weak and dizzy or the whole thing did, cause I left the room and said I couldnt look at it. She called me back in real sweetly, I didnt tell her I was about to pass out. My toes are growing outward. I can take looking at bones but not mine. Especially when they look so bad. My family thinks there is nothing wrong with me even though I have all this. They love me too. It has confused me by their reactions to it all. I thought it was all fibro till my rhuemy found all this other stuff. You thought it was all RA. I see all the post of others going through the same things. We know what they are going through. It's sad others don't. I am signing up to get my stomache stapled. I signed up last year and was so sick I had to put it off. I see the doctor next week to arrange for me to go to a meeting, to talk about the procedures in getting ones stomache stapled. They said I was to big for the belt. Yep, I am obese too. I think people think I am fat because I am lazy. or I use my sickness not to work. It's just not so. Well Tawny, I am so glad to be texting again. I have about 40 emails left to do. The last flare put me behind. I will do a bunch till I get caught up. Its personal emails not the support group mail. I get the support group mail in one e=mail. Sometimes I get 2 or 3 emails a day from the support group. . I believe one day I will be healed and pain free. I know God hears our prayers. I have missied you and the group emmensely since I quit the qroup, I am so glad to be back. Thanks Tawny. I hope I didnt complain to much. I know it's ok to complain. God bless everyone. gentle kind hugs Clora ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hi Clora, So glad to hear your feeling better. It's hard enough dealing with pain, and then on top of it, psorisis. I know when taking that cholesterol me, my skin itched so bad, and was so hot, it felt like I was being burned with fire. When I'm not feeling so bad, I love to be active on the group. I love my RA family, and if I can help someone, it makes me feel good. I know how it feels to be in pain, or new to RA, and alone. People just don't understand if their not aware about these diseases. The fibro is very painful Clora, you need to find a med that is right for you. I've been on neurontin for a long time for the fibro, but mainly for my neuropathy pain. I'm still on it, but I am on cymbalta, and that drug is so great, in my books. I've had no trouble with it, and all my fibro pain is gone. So, please don't suffer. I also suffer from bursitis, it's awful. Do you get the sacs of fluid? I just thought it was the RA, but no it wasn't. We just need to do the best we can, to have some happy pain free days, or tolerable. I know having NO pain is unlikely to most of us. I'm glad your feeling better, and I pray you continue to get better each day. You know your in my prayes my friend. Take care, and have a peaceful rest tonight, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Clora, You have a LOT to complain about, and you can do it anytime here. You are a trooper! I like your husband's attitude too, he's your cheerleader and hero. He is the man! You do what you can, and with all your health issues, that's amazing. I really think people should mind their own business. Just ignore people that tries to be in your business, and live your life the way you want. I hope your able to get the surgery. I know you have talked about it before, so I know your mind is made up. You take care girl, and know your in my prayers, Tawny > > GROUP))))RENEE((((( TAWNY))))))JUDY,DELMAR(((((BONNIE((((DEBS N FLORIDA>>> > > ........GROUP, I read the posts here and amazed how they sound > exactly how I feel. People just don't know unless they > actually been there. My husband said so-n-so on disability > and he looks fine. Appearances ARE deceiving. I tried to > explain the 20 spoon theory, he didnt understand but than > again I didnt at one time also. > > .......Bonnie, I read your post about taking a hammer and > hitting their joints, to understand the pain haaaaa. Yes > than they would truly know. My hubby said something similar > to that. He said, " Tell your family if they want you to take > walks with them, let me hit their knees with a sledge > hammer and than see if they still want to take walks (haaaaaa). > I know when we can, we need to move around. > > ........DebsNflorida, I love the way you said gentle long > distance hugs. It is so precious to care like that. > > .........JUDY,DELMAR, I have sleep apnea also. I just wanted to > tell you, I know how cumbersom they are. A few years ago my > doctor addmitted me in the hospital with what he thought > was phneumonia. I quit wearing my c-pap for awhile cause > it was awful to wear. When he realesed me from the hosp. he > said I had a choice. Either wear the c-pap or I have to > put a breathing hole in your neck. (he didnt call it that) > I been wearing the c-pap ever since. I still hate it, but > I don't want a hole in my neck. So sorry you have to have it. > > .........RENEE, Wow, OMG, Five kids. You are amazing. > . I guess when one don't have a choice > they do what they have to do regardless. I have 4 kids and > didnt have RA than and it was hard enough. I went to school, > worked, and took care of the kids. I didn't think I could > go on sometimes. With this pain now, I can't imagine doing > it myself. God bless you. > > ........Tawny, I had that happen to me last year from my > lyrcia, and plagunil. I itched and burned like fire. I > became allergic out of the blue. I know what you went through. > Yep, people just don't know till they walk a mile in > our shoes. I thing my family is in denial. They want me > to exercise and they know I can't do it. > > I have congestive heart failure, pulmoney arterial hypertention (suppose to be a rare disease). Enlarged right atrium (of the heart), 3 types of arthritis, > diabetes and all the little things that go with these. Like fatique, > irratable bowel syndrone, High blood pressure, constant head > aches, sleep apnea, > > According to the net, one with PAH has about 5 years before they need a lung transplant unless caught in time, and my family can't > understand why I am so sick ALL the time. I live by the > spoon theory literally. I know they love me, I think they > are in denial. My mom asked my hubby how come he does all > the house work. (I wasnt around) he said, " cause she's in > freaking pain all the time. I fussed at him for talking > like that to her. She is my precious mommy. > > I do certain chores, like, put my forarms on the sink and I wash the dishes. He has to put them away and do the heavy pots and pans. I can fold clothes on the bed. He has to put them in the washer and > take them out. He did none of this when I was well so he knows > how hard it is for me. When I get a flare, I become very weak, I take some pain pills, head for my bedroom, lie very still on the bed > and make myself comfortable as I can. And pray. > > I can't walk 10 feet till I am out of breath like a sprinter. > I have a wheel chair from my insurance. I use it only when > we are away from the house. If I go to the kitchen to get a > drink, on the way back to my room I have to stop and sit on > the couch cause I am out of breath. It's not my lungs doing it, > its the congestive heart failure. My doctor said my heart is > to weak to pump for my body. > > I have Osteo arthritis, bursitis, rheumatoid. fibromyalgia (had fibro before it was even invented. I read that RA is the worst > arthritis to have. And my family wants me to do things with > them. I can't even leave the house with out my husband. If > something happen to him I would have to go into a nursing home. > > My fingers and toes have no cushion between them. I told my > rhuemy to exray them cause they hurt so bad. She made me look > at the x-ray. She explained it to me. The bone spurs made me > weak and dizzy or the whole thing did, cause I left the room and > said I couldnt look at it. She called me back in real sweetly, > I didnt tell her I was about to pass out. > > My toes are growing > outward. I can take looking at bones but not mine. Especially > when they look so bad. My family thinks there is nothing wrong > with me even though I have all this. They love me too. It has > confused me by their reactions to it all. > > I thought it was all fibro till my rhuemy found all this other > stuff. You thought it was all RA. I see all the post of others > going through the same things. We know what they are going > through. It's sad others don't. I am signing up to get my > stomache stapled. I signed up last year and was so sick I had > to put it off. I see the doctor next week to arrange for me > to go to a meeting, to talk about the procedures in getting > ones stomache stapled. They said I was to big for the belt. Yep, > I am obese too. I think people think I am fat because I am lazy. > or I use my sickness not to work. It's just not so. > > Well Tawny, I am so glad to be texting again. I have about 40 > emails left to do. The last flare put me behind. I will do a bunch > till I get caught up. Its personal emails not the support group > mail. I get the support group mail in one e=mail. Sometimes I get 2 or 3 emails a day from the support group. . I believe one day I will be healed and pain free. I know God hears our prayers. > I have missied you and the group emmensely since I quit the qroup, I am so glad to be back. Thanks Tawny. > I hope I didnt complain to much. I know it's ok to complain. > God bless everyone. > > gentle kind hugs > Clora > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Clora: So glad to see your name again here. Sounds like you are having a rough time of it. You are entitled to complain here any time..........as much as you want...........that's what we are for you know. To listen and understand and not judge others.............. I pray that you will be feeling better soon. Gentle long distance hugs from Southern Oregon Pat Bureau Alvarez From: tdianaok <tdianaok@...> Subject: [ ] Re: ~ I DON'T LOOK DISABLED ~ Date: Thursday, August 6, 2009, 7:46 PM Clora, You have a LOT to complain about, and you can do it anytime here. You are a trooper! I like your husband's attitude too, he's your cheerleader and hero. He is the man! You do what you can, and with all your health issues, that's amazing. I really think people should mind their own business. Just ignore people that tries to be in your business, and live your life the way you want. I hope your able to get the surgery. I know you have talked about it before, so I know your mind is made up. You take care girl, and know your in my prayers, Tawny > > GROUP))))RENEE( (((( TAWNY))))))JUDY, DELMAR((( ((BONNIE( (((DEBS N FLORIDA>>> > > ........GROUP, I read the posts here and amazed how they sound > exactly how I feel. People just don't know unless they > actually been there. My husband said so-n-so on disability > and he looks fine. Appearances ARE deceiving. I tried to > explain the 20 spoon theory, he didnt understand but than > again I didnt at one time also. > > .......Bonnie, I read your post about taking a hammer and > hitting their joints, to understand the pain haaaaa. Yes > than they would truly know. My hubby said something similar > to that. He said, " Tell your family if they want you to take > walks with them, let me hit their knees with a sledge > hammer and than see if they still want to take walks (haaaaaa). > I know when we can, we need to move around. > > ........DebsNflorid a, I love the way you said gentle long > distance hugs. It is so precious to care like that. > > .........JUDY, DELMAR, I have sleep apnea also. I just wanted to > tell you, I know how cumbersom they are. A few years ago my > doctor addmitted me in the hospital with what he thought > was phneumonia. I quit wearing my c-pap for awhile cause > it was awful to wear. When he realesed me from the hosp. he > said I had a choice. Either wear the c-pap or I have to > put a breathing hole in your neck. (he didnt call it that) > I been wearing the c-pap ever since. I still hate it, but > I don't want a hole in my neck. So sorry you have to have it. > > .........RENEE, Wow, OMG, Five kids. You are amazing. > . I guess when one don't have a choice > they do what they have to do regardless. I have 4 kids and > didnt have RA than and it was hard enough. I went to school, > worked, and took care of the kids. I didn't think I could > go on sometimes. With this pain now, I can't imagine doing > it myself. God bless you. > > ........Tawny, I had that happen to me last year from my > lyrcia, and plagunil. I itched and burned like fire. I > became allergic out of the blue. I know what you went through. > Yep, people just don't know till they walk a mile in > our shoes. I thing my family is in denial. They want me > to exercise and they know I can't do it. > > I have congestive heart failure, pulmoney arterial hypertention (suppose to be a rare disease). Enlarged right atrium (of the heart), 3 types of arthritis, > diabetes and all the little things that go with these. Like fatique, > irratable bowel syndrone, High blood pressure, constant head > aches, sleep apnea, > > According to the net, one with PAH has about 5 years before they need a lung transplant unless caught in time, and my family can't > understand why I am so sick ALL the time. I live by the > spoon theory literally. I know they love me, I think they > are in denial. My mom asked my hubby how come he does all > the house work. (I wasnt around) he said, " cause she's in > freaking pain all the time. I fussed at him for talking > like that to her. She is my precious mommy. > > I do certain chores, like, put my forarms on the sink and I wash the dishes. He has to put them away and do the heavy pots and pans. I can fold clothes on the bed. He has to put them in the washer and > take them out. He did none of this when I was well so he knows > how hard it is for me. When I get a flare, I become very weak, I take some pain pills, head for my bedroom, lie very still on the bed > and make myself comfortable as I can. And pray. > > I can't walk 10 feet till I am out of breath like a sprinter. > I have a wheel chair from my insurance. I use it only when > we are away from the house. If I go to the kitchen to get a > drink, on the way back to my room I have to stop and sit on > the couch cause I am out of breath. It's not my lungs doing it, > its the congestive heart failure. My doctor said my heart is > to weak to pump for my body. > > I have Osteo arthritis, bursitis, rheumatoid. fibromyalgia (had fibro before it was even invented. I read that RA is the worst > arthritis to have. And my family wants me to do things with > them. I can't even leave the house with out my husband. If > something happen to him I would have to go into a nursing home. > > My fingers and toes have no cushion between them. I told my > rhuemy to exray them cause they hurt so bad. She made me look > at the x-ray. She explained it to me. The bone spurs made me > weak and dizzy or the whole thing did, cause I left the room and > said I couldnt look at it. She called me back in real sweetly, > I didnt tell her I was about to pass out. > > My toes are growing > outward. I can take looking at bones but not mine. Especially > when they look so bad. My family thinks there is nothing wrong > with me even though I have all this. They love me too. It has > confused me by their reactions to it all. > > I thought it was all fibro till my rhuemy found all this other > stuff. You thought it was all RA. I see all the post of others > going through the same things. We know what they are going > through. It's sad others don't. I am signing up to get my > stomache stapled. I signed up last year and was so sick I had > to put it off. I see the doctor next week to arrange for me > to go to a meeting, to talk about the procedures in getting > ones stomache stapled. They said I was to big for the belt. Yep, > I am obese too. I think people think I am fat because I am lazy. > or I use my sickness not to work. It's just not so. > > Well Tawny, I am so glad to be texting again. I have about 40 > emails left to do. The last flare put me behind. I will do a bunch > till I get caught up. Its personal emails not the support group > mail. I get the support group mail in one e=mail. Sometimes I get 2 or 3 emails a day from the support group. . I believe one day I will be healed and pain free. I know God hears our prayers. > I have missied you and the group emmensely since I quit the qroup, I am so glad to be back. Thanks Tawny. > I hope I didnt complain to much. I know it's ok to complain. > God bless everyone. > > gentle kind hugs > Clora > > > > > > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~ Quote Link to comment Share on other sites More sharing options...
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