Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Jackie, Of course you are not crazy, any more than the rest of us, honey. We are all disgusted with our bodies' aches and pains, with being tired all the time, and with unfeeling and thoughtless people, especially doctors, who think we can just "overcome it if we exercise some will power". Been there, done that plenty of times with doctors, myself. I have been known to tell them off in front of their staff, other patients, and even in front of the public in a hospital lobby. I used to believe they knew everything about disease, but I have learned so much more with this Lupus thing. My current doctors actually ask my advice on some of their other cases; they encourage their patients to join a support group like this one, and they share news about Lupus with me when there is a breakthrough. Not that there have been that many lately, but still, it is nice to have that cooperation going between doctors and between doctors and patient...me. Took me almost thirty years to find this combination of good people. I pray I never have to hunt for another doctor to replace one who retires, or leaves the state, or whatever. Been there, and done THAT, too. I think you will find that you can tell us almost anything, find acceptance here, good advice, caring support, and even a laugh or two when you most need to lighten up. Yes, this disease can be devastating, and, yes, it can cause sleep deprivation and depression, and yes, it can annoy the hell out of our families and friends, AND us, BUT...we can still laugh, we can still help others who are in worse shape than we are, and we can share our thoughts, feelings, fears, comforts, and loving gifts with others. If there is one thing I have found within myself through this whole process it is that in spite of all I have lost to this disease, I have gained so many other things. I have a deeper and more loving relationship with my children, I have learned patience in places where I used to have zero tolerance, I can still write, drive people around who need a ride, cook when my energy level is up, draw with my computer mouse now that my hands won't let me use a pen as much, sing (my voice has more depth of feeling than ever before) without fear or embarrassment, speak to groups without fear, share with others, and I can still love without reservation. I can teach others to cook, sew, write, draw and paint, and sing. If I can't stand up to teach, I can do it while writing on the net, or while lying down in my bed and talking on the phone, or visiting with a friend who sits in the chair in my room. I don't have to hide myself away, except from sunlight and fluorescent lighting. I can be a part of the life around me; I choose to be all that I am capable of being, and I repudiate those who would have me retire from life. When I have a bad day or even a bad week or month, I still refuse to be less than who I am. I am so stubborn, that when my former (You'll see why she is a former.) Rheumatologist told me that if I didn't lose 100 lbs. I would be in a wheelchair within ten years...I simply refused to believe it, and here I am, thirty years later still on my feet. Wobbly, to be sure, tired and clumsy, but still on my feet. You just have to get stubborn, be assertive, and be YOU. You are precious, and dearly beloved of the Great Spirit, as are we all. What a waste for the world to lose even one minute of your personality to defeatism. Don't give in, honey. We are here to back you up. Loving hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Jackie, Of course you are not crazy, any more than the rest of us, honey. We are all disgusted with our bodies' aches and pains, with being tired all the time, and with unfeeling and thoughtless people, especially doctors, who think we can just "overcome it if we exercise some will power". Been there, done that plenty of times with doctors, myself. I have been known to tell them off in front of their staff, other patients, and even in front of the public in a hospital lobby. I used to believe they knew everything about disease, but I have learned so much more with this Lupus thing. My current doctors actually ask my advice on some of their other cases; they encourage their patients to join a support group like this one, and they share news about Lupus with me when there is a breakthrough. Not that there have been that many lately, but still, it is nice to have that cooperation going between doctors and between doctors and patient...me. Took me almost thirty years to find this combination of good people. I pray I never have to hunt for another doctor to replace one who retires, or leaves the state, or whatever. Been there, and done THAT, too. I think you will find that you can tell us almost anything, find acceptance here, good advice, caring support, and even a laugh or two when you most need to lighten up. Yes, this disease can be devastating, and, yes, it can cause sleep deprivation and depression, and yes, it can annoy the hell out of our families and friends, AND us, BUT...we can still laugh, we can still help others who are in worse shape than we are, and we can share our thoughts, feelings, fears, comforts, and loving gifts with others. If there is one thing I have found within myself through this whole process it is that in spite of all I have lost to this disease, I have gained so many other things. I have a deeper and more loving relationship with my children, I have learned patience in places where I used to have zero tolerance, I can still write, drive people around who need a ride, cook when my energy level is up, draw with my computer mouse now that my hands won't let me use a pen as much, sing (my voice has more depth of feeling than ever before) without fear or embarrassment, speak to groups without fear, share with others, and I can still love without reservation. I can teach others to cook, sew, write, draw and paint, and sing. If I can't stand up to teach, I can do it while writing on the net, or while lying down in my bed and talking on the phone, or visiting with a friend who sits in the chair in my room. I don't have to hide myself away, except from sunlight and fluorescent lighting. I can be a part of the life around me; I choose to be all that I am capable of being, and I repudiate those who would have me retire from life. When I have a bad day or even a bad week or month, I still refuse to be less than who I am. I am so stubborn, that when my former (You'll see why she is a former.) Rheumatologist told me that if I didn't lose 100 lbs. I would be in a wheelchair within ten years...I simply refused to believe it, and here I am, thirty years later still on my feet. Wobbly, to be sure, tired and clumsy, but still on my feet. You just have to get stubborn, be assertive, and be YOU. You are precious, and dearly beloved of the Great Spirit, as are we all. What a waste for the world to lose even one minute of your personality to defeatism. Don't give in, honey. We are here to back you up. Loving hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Jackie, Of course you are not crazy, any more than the rest of us, honey. We are all disgusted with our bodies' aches and pains, with being tired all the time, and with unfeeling and thoughtless people, especially doctors, who think we can just "overcome it if we exercise some will power". Been there, done that plenty of times with doctors, myself. I have been known to tell them off in front of their staff, other patients, and even in front of the public in a hospital lobby. I used to believe they knew everything about disease, but I have learned so much more with this Lupus thing. My current doctors actually ask my advice on some of their other cases; they encourage their patients to join a support group like this one, and they share news about Lupus with me when there is a breakthrough. Not that there have been that many lately, but still, it is nice to have that cooperation going between doctors and between doctors and patient...me. Took me almost thirty years to find this combination of good people. I pray I never have to hunt for another doctor to replace one who retires, or leaves the state, or whatever. Been there, and done THAT, too. I think you will find that you can tell us almost anything, find acceptance here, good advice, caring support, and even a laugh or two when you most need to lighten up. Yes, this disease can be devastating, and, yes, it can cause sleep deprivation and depression, and yes, it can annoy the hell out of our families and friends, AND us, BUT...we can still laugh, we can still help others who are in worse shape than we are, and we can share our thoughts, feelings, fears, comforts, and loving gifts with others. If there is one thing I have found within myself through this whole process it is that in spite of all I have lost to this disease, I have gained so many other things. I have a deeper and more loving relationship with my children, I have learned patience in places where I used to have zero tolerance, I can still write, drive people around who need a ride, cook when my energy level is up, draw with my computer mouse now that my hands won't let me use a pen as much, sing (my voice has more depth of feeling than ever before) without fear or embarrassment, speak to groups without fear, share with others, and I can still love without reservation. I can teach others to cook, sew, write, draw and paint, and sing. If I can't stand up to teach, I can do it while writing on the net, or while lying down in my bed and talking on the phone, or visiting with a friend who sits in the chair in my room. I don't have to hide myself away, except from sunlight and fluorescent lighting. I can be a part of the life around me; I choose to be all that I am capable of being, and I repudiate those who would have me retire from life. When I have a bad day or even a bad week or month, I still refuse to be less than who I am. I am so stubborn, that when my former (You'll see why she is a former.) Rheumatologist told me that if I didn't lose 100 lbs. I would be in a wheelchair within ten years...I simply refused to believe it, and here I am, thirty years later still on my feet. Wobbly, to be sure, tired and clumsy, but still on my feet. You just have to get stubborn, be assertive, and be YOU. You are precious, and dearly beloved of the Great Spirit, as are we all. What a waste for the world to lose even one minute of your personality to defeatism. Don't give in, honey. We are here to back you up. Loving hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, at least. LOL Love, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, at least. LOL Love, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, at least. LOL Love, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Ooooh...be careful what you wish for...you might get it. Hahahahaha. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Ooooh...be careful what you wish for...you might get it. Hahahahaha. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Karol, Ooooh...be careful what you wish for...you might get it. Hahahahaha. MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi MM, Have I ever told you how much I enjoy reading your posts? Well, I do. I just needed to say that. Gosh, I can't sleep tonight. Here it is after 1 o'clock and I'm awake. My darn back won't allow me to sleep tonight. It's one of those nights. I can't complain to much, this hasn't happened to me in a long time. I just hope it not the beginning of something. Gentle hugs..... Karol Re: Support is great Jackie, Of course you are not crazy, any more than the rest of us, honey. We are all disgusted withour bodies' aches and pains, with being tired all the time, and with unfeeling and thoughtless people,especially doctors, who think we can just "overcome it if we exercise some will power". Been there,done that plenty of times with doctors, myself. I have been known to tell them off in front of theirstaff, other patients, and even in front of the public in a hospital lobby. I used to believe they kneweverything about disease, but I have learned so much more with this Lupus thing.My current doctors actually ask my advice on some of their other cases; they encourage theirpatients to join a support group like this one, and they share news about Lupus with me when thereis a breakthrough. Not that there have been that many lately, but still, it is nice to have that cooperation going between doctors and between doctors and patient...me. Took me almost thirtyyears to find this combination of good people. I pray I never have to hunt for another doctor toreplace one who retires, or leaves the state, or whatever. Been there, and done THAT, too.I think you will find that you can tell us almost anything, find acceptance here, good advice, caringsupport, and even a laugh or two when you most need to lighten up. Yes, this disease can be devastating, and, yes, it can cause sleep deprivation and depression, and yes, it can annoy the hellout of our families and friends, AND us, BUT...we can still laugh, we can still help others who are inworse shape than we are, and we can share our thoughts, feelings, fears, comforts, and lovinggifts with others. If there is one thing I have found within myself through this whole process it is thatin spite of all I have lost to this disease, I have gained so many other things. I have a deeper and more loving relationship with my children, I have learned patience in places where I used to have zerotolerance, I can still write, drive people around who need a ride, cook when my energy level is up,draw with my computer mouse now that my hands won't let me use a pen as much, sing (my voicehas more depth of feeling than ever before) without fear or embarrassment, speak to groups withoutfear, share with others, and I can still love without reservation. I can teach others to cook, sew,write, draw and paint, and sing. If I can't stand up to teach, I can do it while writing on the net, orwhile lying down in my bed and talking on the phone, or visiting with a friend who sits in the chair inmy room. I don't have to hide myself away, except from sunlight and fluorescent lighting. I can bea part of the life around me; I choose to be all that I am capable of being, and I repudiate those whowould have me retire from life. When I have a bad day or even a bad week or month, I still refuse to be less than who I am. I amso stubborn, that when my former (You'll see why she is a former.) Rheumatologist told me that ifI didn't lose 100 lbs. I would be in a wheelchair within ten years...I simply refused to believe it, andhere I am, thirty years later still on my feet. Wobbly, to be sure, tired and clumsy, but still on myfeet. You just have to get stubborn, be assertive, and be YOU. You are precious, and dearlybeloved of the Great Spirit, as are we all. What a waste for the world to lose even one minute ofyour personality to defeatism. Don't give in, honey. We are here to back you up. Loving hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 MM, You're so down to earth and so compassionate. We are lucky to have you in the group. I have to say I really admire you. Keep rattling. It's helpful to all of us. Karol Re: Support is great Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, atleast. LOL Love, MM "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 MM, You're so down to earth and so compassionate. We are lucky to have you in the group. I have to say I really admire you. Keep rattling. It's helpful to all of us. Karol Re: Support is great Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, atleast. LOL Love, MM "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 MM, You're so down to earth and so compassionate. We are lucky to have you in the group. I have to say I really admire you. Keep rattling. It's helpful to all of us. Karol Re: Support is great Karol, Thanks, honey. Sometimes I tend to rattle on a bit, so I'm glad I don't bore you to tears, atleast. LOL Love, MM "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 > > MM, You're so down to earth and so compassionate. Another MM fan here 8-) When I read your posts, I always feel like I've been hugged. Sue --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.662 / Virus Database: 425 - Release Date: 4/20/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Ditto here also!!!! > > MM, You're so down to earth and so compassionate. Another MM fan here 8-)When I read your posts, I always feel like I've been hugged.Sue ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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