Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 , I would print out the following document: Guidelines for the Management of Rheumatoid Arthritis 2002 Update http://www.rheumatology.org/publications/guidelines/raguidelines02.asp These Guidelines by the American College of Rheumatology (ACR) state that minocycline (generic name for brand-name Minocin) has been approved as a DMARD for treatment of RA. Mixed Connective Tissue Disease (MCTD), with which you have been diagnosed, is related to RA, but is not RA. See http://www.emedicine.com/med/topic3417.htm http://www.merck.com/mrkshared/mmanual/section5/chapter50/50o.jsp " Mixed Connective Tissue Disease (MCTD) is very rare. MCTD has symptoms of arthritis as well as features of juvenile rheumatoid arthritis (JRA), scleroderma, dermatomyositis (JDMS), and lupus (SLE) at some time during the illness. It is characterized by the presence of specific autoantibodies to nuclear proteins (RNP). " " Sharp and colleagues (1972) first recognized mixed connective-tissue disease (MCTD) among a group of patients with overlapping clinical features of systemic lupus erythematosus (SLE), scleroderma, and myositis, with the presence of a distinctive antibody against what now is known to be U1-ribonucleoprotein (RNP). This disease has been characterized more completely in recent years and now is recognized to consist of the following core clinical and laboratory features: Raynaud phenomenon, swollen hands, arthritis/arthralgia, acrosclerosis, esophageal dysmotility, myositis, pulmonary hypertension, high level of anti–U1-RNP antibodies, and antibodies against U1-70 kd small nuclear ribonucleoprotein (snRNP). " The presences of an antibody would indicate an invading body (microorganism). Sincerely, Harald At 10:14 AM 3/10/2005 -0800, you wrote: >Hi my name is and I have been diagnosed with MCTD almost two years >now. I was reading Geoff's post about the difference of beliefs with >these diseases and it feels so good to finally have someone believe that >these diseases could be caused by an unseen invader. I feel like I have >been fighting an uphill battle with every doctor I have seen. They >all flat out refuse and renounce antibiotic protocol as not being >medically founded. No matter how much research I bring them. I have been >unable to find any doctor who is willing to try AP on me. I am at my wits >end. I have been on every drug that was supposedly for Auto immune >diseases, well not a single one has done anything to help me even >minutely. I live in the Central Valley of California and I feel that AP >is my only chance to live a productive life. I don't know if I should >just try it myself. I just want to be back to half of what I use to >be. Any help or advice would be greatly appreciated. Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi, : It might be easier to find a doctor already using AP than trying this with someone unfamiliar with antibiotics and side effects, etc. There is one doctor in Riverside who is very familiar with AP; certainly there are some closer to you. I used to make an occasional trip to Mexico for my antibiotics, but I had to go through a period of experimentation before arriving at my own protocol (that also includes provisions for unwanted organism overgrowth resulting from antibiotic usage). There might have been some oversimplification between autoimmune and infective camps, but the mechanism for arthritis is certainly somewhere in the middle. Example: There are at least five different types of collagens attacked by only one product of our immune systems, an immunoglobulin specific to the Klebsiella pneumoniae bacterium (IgA-Kp). It is a classic 'edge effect' or exception to the adage that what does not kill us will make us stronger: Our immune response to a particular germ is the problem; it is autoimmune, but caused by the presence of a germ. This is called 'molecular mimicry,' and how the heart is damaged from certain infections. In a typical 'reactive' form of arthritis, it is expected that the metabolic products from a specific pathogen will be arthritogenic, but even after that pathogen is destroyed, a subsequent reaction could happen, due to a secondary immune mechanism. I hope that you are able to find the answers and regain your health; sooner the better, Re: rheumatic Desperate , I would print out the following document: Guidelines for the Management of Rheumatoid Arthritis 2002 Update http://www.rheumatology.org/publications/guidelines/raguidelines02.asp These Guidelines by the American College of Rheumatology (ACR) state that minocycline (generic name for brand-name Minocin) has been approved as a DMARD for treatment of RA. Mixed Connective Tissue Disease (MCTD), with which you have been diagnosed, is related to RA, but is not RA. See http://www.emedicine.com/med/topic3417.htm http://www.merck.com/mrkshared/mmanual/section5/chapter50/50o.jsp " Mixed Connective Tissue Disease (MCTD) is very rare. MCTD has symptoms of arthritis as well as features of juvenile rheumatoid arthritis (JRA), scleroderma, dermatomyositis (JDMS), and lupus (SLE) at some time during the illness. It is characterized by the presence of specific autoantibodies to nuclear proteins (RNP). " " Sharp and colleagues (1972) first recognized mixed connective-tissue disease (MCTD) among a group of patients with overlapping clinical features of systemic lupus erythematosus (SLE), scleroderma, and myositis, with the presence of a distinctive antibody against what now is known to be U1-ribonucleoprotein (RNP). This disease has been characterized more completely in recent years and now is recognized to consist of the following core clinical and laboratory features: Raynaud phenomenon, swollen hands, arthritis/arthralgia, acrosclerosis, esophageal dysmotility, myositis, pulmonary hypertension, high level of anti-U1-RNP antibodies, and antibodies against U1-70 kd small nuclear ribonucleoprotein (snRNP). " The presences of an antibody would indicate an invading body (microorganism). Sincerely, Harald At 10:14 AM 3/10/2005 -0800, you wrote: >Hi my name is and I have been diagnosed with MCTD almost two years >now. I was reading Geoff's post about the difference of beliefs with >these diseases and it feels so good to finally have someone believe that >these diseases could be caused by an unseen invader. I feel like I have >been fighting an uphill battle with every doctor I have seen. They >all flat out refuse and renounce antibiotic protocol as not being >medically founded. No matter how much research I bring them. I have been >unable to find any doctor who is willing to try AP on me. I am at my wits >end. I have been on every drug that was supposedly for Auto immune >diseases, well not a single one has done anything to help me even >minutely. I live in the Central Valley of California and I feel that AP >is my only chance to live a productive life. I don't know if I should >just try it myself. I just want to be back to half of what I use to >be. Any help or advice would be greatly appreciated. Thank you > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 Dear Desperate: Don't give up. I know how you feel. I have RA a long time now and I will not give up the thought that a cure will come someday soon. You have keep yourself strong so when that cure comes you will be able to get it. I believe this, and I am not giving up. Colletti Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 Dear Desperate: Don't give up. I know how you feel. I have RA a long time now and I will not give up the thought that a cure will come someday soon. You have keep yourself strong so when that cure comes you will be able to get it. I believe this, and I am not giving up. Colletti Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 Hi, Im , Im 23 years old, and just joined the group today. I dont even know where to start, I've had RA since I was 14, I'm currently on the Remicade and Methotrexate combo. 8 weeks ago I went through total knee replacement surgery on my left knee, which was a real success. The surgeon, and physical theripists even called me a miracle patient because of my determination, and ability to get back a 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I guess I should feel lucky, and be happy, but Im not. I still have severe RA everywhere else, and just brushing my hair leaves me in agony. I feel as thought Ive lost myself. Everyday I wake up wanting to put a bullet in my head, the only thing stopping me, is the thought of not being able to hold my boyfriend again, who is honestly the only joy in my life, and is the type of man a woman dreams of, so caring and supportive, but I feel like he deserves more than a woman like me who doesnt know from one day to the next if she'll be in agony or just severe pain. All I do lately is cry, I feel like I cant talk to anyone, because after all, unless you have what we have, how the heck can you even begin to understand. Im tired of being tired,and crying, and the thought that I would even think of taking my own life scares me, and I wonder what kind of person have I've become. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 christina, im am 24 and i also have RA. it really struck a cord when i read your email, i know there arent many young people with RA and it would be nice to talk to someone who you can relate to sometimes. i know all to well the feeling being alone, like no one understands, and missing the life i used to have. but you cannot give up, you have to have faith, that everything will be ok. you are not RA, you and your life, are so much more than RA. never compare yourself to others. and never judge yourself based on RA. just wanted to let you know i am here, if you ever want to vent, talk, or if you had any questions. hope to hear from you sometime. jessi --- woohoospunky <csidoti@...> wrote: > Hi, Im , Im 23 years old, and just joined > the group today. > I dont even know where to start, I've had RA since I > was 14, I'm > currently on the Remicade and Methotrexate combo. 8 > weeks ago I went > through total knee replacement surgery on my left > knee, which was a > real success. The surgeon, and physical theripists > even called me a > miracle patient because of my determination, and > ability to get back a > 125 degree bend in my knee, just 3 weeks out of > surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. > I still have > severe RA everywhere else, and just brushing my hair > leaves me in > agony. I feel as thought Ive lost myself. Everyday > I wake up wanting > to put a bullet in my head, the only thing stopping > me, is the thought > of not being able to hold my boyfriend again, who is > honestly the only > joy in my life, and is the type of man a woman > dreams of, so caring > and supportive, but I feel like he deserves more > than a woman like me > who doesnt know from one day to the next if she'll > be in agony or just > severe pain. All I do lately is cry, I feel like I > cant talk to > anyone, because after all, unless you have what we > have, how the heck > can you even begin to understand. Im tired of being > tired,and crying, > and the thought that I would even think of taking my > own life scares > me, and I wonder what kind of person have I've > become. > > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 christina, im am 24 and i also have RA. it really struck a cord when i read your email, i know there arent many young people with RA and it would be nice to talk to someone who you can relate to sometimes. i know all to well the feeling being alone, like no one understands, and missing the life i used to have. but you cannot give up, you have to have faith, that everything will be ok. you are not RA, you and your life, are so much more than RA. never compare yourself to others. and never judge yourself based on RA. just wanted to let you know i am here, if you ever want to vent, talk, or if you had any questions. hope to hear from you sometime. jessi --- woohoospunky <csidoti@...> wrote: > Hi, Im , Im 23 years old, and just joined > the group today. > I dont even know where to start, I've had RA since I > was 14, I'm > currently on the Remicade and Methotrexate combo. 8 > weeks ago I went > through total knee replacement surgery on my left > knee, which was a > real success. The surgeon, and physical theripists > even called me a > miracle patient because of my determination, and > ability to get back a > 125 degree bend in my knee, just 3 weeks out of > surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. > I still have > severe RA everywhere else, and just brushing my hair > leaves me in > agony. I feel as thought Ive lost myself. Everyday > I wake up wanting > to put a bullet in my head, the only thing stopping > me, is the thought > of not being able to hold my boyfriend again, who is > honestly the only > joy in my life, and is the type of man a woman > dreams of, so caring > and supportive, but I feel like he deserves more > than a woman like me > who doesnt know from one day to the next if she'll > be in agony or just > severe pain. All I do lately is cry, I feel like I > cant talk to > anyone, because after all, unless you have what we > have, how the heck > can you even begin to understand. Im tired of being > tired,and crying, > and the thought that I would even think of taking my > own life scares > me, and I wonder what kind of person have I've > become. > > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 , Hey, I'm 23 too. I just got diagnosed with RA about a month ago though. I have the same thoughts about my boyfriend deserving better. I mean, he had a girlfriend, just 6 months ago, that would go out and do anything. Now he has a girlfriend that doesn't want to leave the house most days. We've even talked about marriage and starting a family, but I feel like it would be selfish of me. He says he'll be there for me through this and anything else no matter what, but who knows! It's only been a couple of months since the pain got so bad! I seriously understand everything you're saying about that. Just know that there are nights where I'm sure we all just cry about this...non-stop, and that's ok. I've been told I cry too much, but TOO BAD! I like it! I'm happy to hear your surgery went so well though! Way to be a trooper! ---i haven't brushed my hair in 4 days...I'm pretty sure that some birds are going to move in for the winter soon. On 10/26/05, woohoospunky <csidoti@...> wrote: > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 : You've come to the right place. I think you'd be hard pressed to find a single member of this group that hasn't felt as you do right now. We all go through it, and it's a normal part of the grieving process. You need to grieve for they way your life was pre-RA, and grieve for the life you feel you didn't have because of RA. Depression is the silent symptom of RA, and so many of us suffer needlessly. Please, talk with you doc, as you may need to take an anti- depressant. The only thing that keeps me going most days is my two boys and the hope that there will one day be a cure for this dreaded disease. If not a cure, then a med combo that works for each and every one of us that suffers with it. Why is it that so many of us suffer in silence? The only time we talk of our pain is here online with people who live all over the world? I really wish that Kathleen and Camryn Manheim would speak publicly and advocate for awareness about RA. Hang in there girl, there are ups and there are downs. You've got a great man, and you're so lucky to have him. Hold him close and let him know how you feel. Best of luck, > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 : You've come to the right place. I think you'd be hard pressed to find a single member of this group that hasn't felt as you do right now. We all go through it, and it's a normal part of the grieving process. You need to grieve for they way your life was pre-RA, and grieve for the life you feel you didn't have because of RA. Depression is the silent symptom of RA, and so many of us suffer needlessly. Please, talk with you doc, as you may need to take an anti- depressant. The only thing that keeps me going most days is my two boys and the hope that there will one day be a cure for this dreaded disease. If not a cure, then a med combo that works for each and every one of us that suffers with it. Why is it that so many of us suffer in silence? The only time we talk of our pain is here online with people who live all over the world? I really wish that Kathleen and Camryn Manheim would speak publicly and advocate for awareness about RA. Hang in there girl, there are ups and there are downs. You've got a great man, and you're so lucky to have him. Hold him close and let him know how you feel. Best of luck, > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Dear , Welcome! I hope you will find as much comfort and support from this group as I have. These are beautiful people. I can't imagine what it's been like for you to have been coping with this since you were 14. Your boyfriend is blessed to have you. Because of your struggles you no doubt have a level of maturity and compassion that others your age aren't even approaching yet. A lot of women your age (including me at 23) are too busy whining at their boyfriends/husbands and making demands, but you appreciate him and say nice things about him. Please never give up. The surgery alone is enough to wipe you out, so just take one day at a time and know that you are not alone. Grace and peace to you....laura woohoospunky <csidoti@...> wrote: Hi, Im , Im 23 years old, and just joined the group today. I dont even know where to start, I've had RA since I was 14, I'm currently on the Remicade and Methotrexate combo. 8 weeks ago I went through total knee replacement surgery on my left knee, which was a real success. The surgeon, and physical theripists even called me a miracle patient because of my determination, and ability to get back a 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I guess I should feel lucky, and be happy, but Im not. I still have severe RA everywhere else, and just brushing my hair leaves me in agony. I feel as thought Ive lost myself. Everyday I wake up wanting to put a bullet in my head, the only thing stopping me, is the thought of not being able to hold my boyfriend again, who is honestly the only joy in my life, and is the type of man a woman dreams of, so caring and supportive, but I feel like he deserves more than a woman like me who doesnt know from one day to the next if she'll be in agony or just severe pain. All I do lately is cry, I feel like I cant talk to anyone, because after all, unless you have what we have, how the heck can you even begin to understand. Im tired of being tired,and crying, and the thought that I would even think of taking my own life scares me, and I wonder what kind of person have I've become. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Dear , Welcome! I hope you will find as much comfort and support from this group as I have. These are beautiful people. I can't imagine what it's been like for you to have been coping with this since you were 14. Your boyfriend is blessed to have you. Because of your struggles you no doubt have a level of maturity and compassion that others your age aren't even approaching yet. A lot of women your age (including me at 23) are too busy whining at their boyfriends/husbands and making demands, but you appreciate him and say nice things about him. Please never give up. The surgery alone is enough to wipe you out, so just take one day at a time and know that you are not alone. Grace and peace to you....laura woohoospunky <csidoti@...> wrote: Hi, Im , Im 23 years old, and just joined the group today. I dont even know where to start, I've had RA since I was 14, I'm currently on the Remicade and Methotrexate combo. 8 weeks ago I went through total knee replacement surgery on my left knee, which was a real success. The surgeon, and physical theripists even called me a miracle patient because of my determination, and ability to get back a 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I guess I should feel lucky, and be happy, but Im not. I still have severe RA everywhere else, and just brushing my hair leaves me in agony. I feel as thought Ive lost myself. Everyday I wake up wanting to put a bullet in my head, the only thing stopping me, is the thought of not being able to hold my boyfriend again, who is honestly the only joy in my life, and is the type of man a woman dreams of, so caring and supportive, but I feel like he deserves more than a woman like me who doesnt know from one day to the next if she'll be in agony or just severe pain. All I do lately is cry, I feel like I cant talk to anyone, because after all, unless you have what we have, how the heck can you even begin to understand. Im tired of being tired,and crying, and the thought that I would even think of taking my own life scares me, and I wonder what kind of person have I've become. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Dear , I said this to and I'll say it to you--these guys are lucky to have you. I've been married for 25 years and I can tell you that going out and partying and doing things is a fun part of life but it is a small part of it. Men need someone to build them up and make them feel essential. A good man--one mature enough for a real relationship and worth your time--will grow as a person as he helps you through your rough times, and you guys are women of character who understand so much more about life and struggle than do other ladies your age. Just listen to them and make them feel good about themselves and you'll be an asset to any man, even though you have to walk a different path than many your age. grace and peace...laura Lyon <lindsaylyon@...> wrote: , Hey, I'm 23 too. I just got diagnosed with RA about a month ago though. I have the same thoughts about my boyfriend deserving better. I mean, he had a girlfriend, just 6 months ago, that would go out and do anything. Now he has a girlfriend that doesn't want to leave the house most days. We've even talked about marriage and starting a family, but I feel like it would be selfish of me. He says he'll be there for me through this and anything else no matter what, but who knows! It's only been a couple of months since the pain got so bad! I seriously understand everything you're saying about that. Just know that there are nights where I'm sure we all just cry about this...non-stop, and that's ok. I've been told I cry too much, but TOO BAD! I like it! I'm happy to hear your surgery went so well though! Way to be a trooper! ---i haven't brushed my hair in 4 days...I'm pretty sure that some birds are going to move in for the winter soon. On 10/26/05, woohoospunky <csidoti@...> wrote: > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Dear , I said this to and I'll say it to you--these guys are lucky to have you. I've been married for 25 years and I can tell you that going out and partying and doing things is a fun part of life but it is a small part of it. Men need someone to build them up and make them feel essential. A good man--one mature enough for a real relationship and worth your time--will grow as a person as he helps you through your rough times, and you guys are women of character who understand so much more about life and struggle than do other ladies your age. Just listen to them and make them feel good about themselves and you'll be an asset to any man, even though you have to walk a different path than many your age. grace and peace...laura Lyon <lindsaylyon@...> wrote: , Hey, I'm 23 too. I just got diagnosed with RA about a month ago though. I have the same thoughts about my boyfriend deserving better. I mean, he had a girlfriend, just 6 months ago, that would go out and do anything. Now he has a girlfriend that doesn't want to leave the house most days. We've even talked about marriage and starting a family, but I feel like it would be selfish of me. He says he'll be there for me through this and anything else no matter what, but who knows! It's only been a couple of months since the pain got so bad! I seriously understand everything you're saying about that. Just know that there are nights where I'm sure we all just cry about this...non-stop, and that's ok. I've been told I cry too much, but TOO BAD! I like it! I'm happy to hear your surgery went so well though! Way to be a trooper! ---i haven't brushed my hair in 4 days...I'm pretty sure that some birds are going to move in for the winter soon. On 10/26/05, woohoospunky <csidoti@...> wrote: > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Hi , Does your rheumatlogist know how bad your pain is right now? Have you ever been to a pain clinic? It might be useful to you to get a second opinion from a pain specialist. I think it's possible for you to feel better. Sierra > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Camryn was on " Inside Edition " night before last talking about her RA. Sue On Thursday, October 27, 2005, at 01:23 AM, ltlmisscrankypants wrote: > Why is it that so many of us suffer in silence? The only time we talk > of > our pain is here online with people who live all over the world? I > really > wish that Kathleen and Camryn Manheim would speak publicly > and advocate for awareness about RA. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 In regards to suffering in silence. I was just wondering the same thing today. I watched the View earlier today and Meridith talked about , I believe her husband? having MS and not telling anyone about it, not even his job apparently until recently. He also says if someone asked him if they should tell about it, he would tell them NO, even till this day. So people with disabilities are not taken seriously when it comes to doing a good job on the job. This is why I have turned to going into business for myself. I decided if no one will hire me, I will hire myself. I was just wondering what do the wealthy and famous do about their cnditions. Surely it isn't just the regular people who have illnesses. Why is it we never see or hear from those famous, and were they famous before getting the disease and how do they earn a living after getting the disease? It semms if you have this condition, it is extemely difficult to earn a living unless you were already well on your way to begin with before getting the disease. It is the first question I ask. I was once treated by a doctor who also has RA. I asked him how did he get through medical school with this condition. He said he got the condition after medical school. I know every time I sign up for school I flare out of this world. I have to take 1 or 2 classes at a time and for medical school you have to take a full load or I don't think you are taken seriously. Besides instead of 4 years it would take you 8 to finish! I guess you can tell this has really been on mind a lot. LOL peace and healing everyone, Ebony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Sounds to me like we're all going through the same thing. Maybe it's normal after a new diagnosis. I too am a newlywed (at 44) and have had all the same thoughts lately. I did sit down and talk to my husband and he has continued t be the wonderful man he always has been. If your husband or boyfried really loves you, it won't matter. (That's what I keep telling myself!) Just do the best you can and keep on loving him. You can't let this disease claim your life. Chin up! Tomorrow is another day! > > > > Hi, Im , Im 23 years old, and just joined the group today. > > I dont even know where to start, I've had RA since I was 14, I'm > > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > > through total knee replacement surgery on my left knee, which was a > > real success. The surgeon, and physical theripists even called me a > > miracle patient because of my determination, and ability to get back a > > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > > guess I should feel lucky, and be happy, but Im not. I still have > > severe RA everywhere else, and just brushing my hair leaves me in > > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > > to put a bullet in my head, the only thing stopping me, is the thought > > of not being able to hold my boyfriend again, who is honestly the only > > joy in my life, and is the type of man a woman dreams of, so caring > > and supportive, but I feel like he deserves more than a woman like me > > who doesnt know from one day to the next if she'll be in agony or just > > severe pain. All I do lately is cry, I feel like I cant talk to > > anyone, because after all, unless you have what we have, how the heck > > can you even begin to understand. Im tired of being tired,and crying, > > and the thought that I would even think of taking my own life scares > > me, and I wonder what kind of person have I've become. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 , This man has found a wonderful, strong, intelligent woman. Only the best deserve that, and I'm sure he knows it. I joined this group about six months ago when I was diagnosed with " atypical " RA...that has since been changed to sjogrens/lupus overlap. No, I don't know, and don't even pretend to know, the horrible pain those of you with RA must suffer with the severe joint destruction, but I do understand daily, chronic pain, and it wears on you. You have been through a lot, and you are still young, but you have proven how strong you are by getting through your knee surgery. This is a great, supportive group. You may also want to look for some support groups in your area so you can meet with people face to face who are going through similar experiences. You might also want to discuss pain management with your doctor, or find a chronic pain clinic in your area....they may be able to help. Stay strong, and talk to your boyfriend about your pain and feelings, if you haven't already. He sounds like the type of guy you can confide in, and who will understand, and love, you regardless. He doesn't love you because of your condition...he loves you because of who you are despite your condition, and how you have faced it. Always remember that.....and that you obviously are an exceptional human being. Good luck. > > Hi, Im , Im 23 years old, and just joined the group today. > I dont even know where to start, I've had RA since I was 14, I'm > currently on the Remicade and Methotrexate combo. 8 weeks ago I went > through total knee replacement surgery on my left knee, which was a > real success. The surgeon, and physical theripists even called me a > miracle patient because of my determination, and ability to get back a > 125 degree bend in my knee, just 3 weeks out of surgery, lol. So I > guess I should feel lucky, and be happy, but Im not. I still have > severe RA everywhere else, and just brushing my hair leaves me in > agony. I feel as thought Ive lost myself. Everyday I wake up wanting > to put a bullet in my head, the only thing stopping me, is the thought > of not being able to hold my boyfriend again, who is honestly the only > joy in my life, and is the type of man a woman dreams of, so caring > and supportive, but I feel like he deserves more than a woman like me > who doesnt know from one day to the next if she'll be in agony or just > severe pain. All I do lately is cry, I feel like I cant talk to > anyone, because after all, unless you have what we have, how the heck > can you even begin to understand. Im tired of being tired,and crying, > and the thought that I would even think of taking my own life scares > me, and I wonder what kind of person have I've become. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 It sounds like your district is willing to pay for a special education school right? This is great. Do you have a case manager assigned to your son? You should have one. Every child with an IEP usually has a case manager from the school. You need to do two different things. One is go with the case manager to look at the schools they are proposing. The second thing is help him manage better while you are waiting. Finding a School: What state do you live in? In NJ I can look at our state education department and see all the schools that are approved. You can see which ones are within an hour of your home and contact the schools get information. You will be going to visit the schools to with the case manager. Options while waiting for another placement: 1) One idea I have is something that is really working for us. You start him going to school for a partial day. Start with going to school calmly for up to 11am and reward him with a very small incentive that does not cost much. It should vary. Ideas would be an ice cream, 30 min of game time with Mom, stop at a dollar store, earns a $2 toward a special interest. If he can manage till 11am after a week, give him the option to stay till lunch is over. Reward him with a second reward for staying for lunch. This second reward is smaller and perhaps an add on to the first. For example, for us she gets another $1 for the dollar store. Don't try to increase the day beyond having lunch until he can manage that without a meltdown at school or home. 2) Another idea is ask them to have him eat lunch 1:1 in a quiet room. See if cutting out the noise helps. Unless this is already. 3) If you work and you can't bring him home earlier, than have the school give him two long breaks. One in the morning at 10am with a snack and resting time and a second break after lunch. Last idea: Do you have him on something for anxiety? I resisted until age 11 to get medication for my daughter and I feel guilty I waited so long. Many people are afraid to try medication as I was. If he is not on medication he should be if he is screaming at school. Find a child pyschiatrist. Most likely they will try an anti depressant like prozac or zoloft which are approved for pediatric use. We read on the Mass General Hospital web site that Asperger kids are very sensitive. So we made a point to take the medication increases slow. We started at 12mg of zoloft and stayed there 12 days. We increased it to 25 mg we saw a difference. The side effect for her was restless legs for a few days. Less appetite for awhile. We increased at 10mg doses all summer long very very slowly to make sure there were no adverse affects and to give her body a chance to adjsut. We went for 25mg to 50mg over 2 months. We went very slow. My daughter still has issues soically, she is going to a special school too BUTTTT!!!! Her rages and outbursts have stopped. She is still ridgid but we can talk to her now. Pam p What state do you live in? Have you > > I am willing to take any advice on this one, I am at my wits end and trying to keep from having a mental breakdown. > My 7 year old son was diagnosed with Asperger's this passed summer, although I've been looking into it for years. He was put into a residential program for 5 and a half months, which worked GREAT for him. Alas, he couldn't stay there forever (and I wanted him home anyways), so he came home the week before school started. This program helpped him dramatically, he was barely having any meltdowns, and if he did have them, they didn't last very long at all. > We are now on the 3rd week of school, and he has been suspended 3 times already. He has an IEP, which we are in the process of changing since his new diagnosis, but he just can't seem to function in a public school. He has one on one time with his teacher basically all day, and he is mostly in a self contained class. This isn't working for him at all, he can't get through a day without a meltdown. He isn't hitting like he used to, but he screams at the top of his lungs for up to 30 minutes at a time, which disrupts the entire school, not just his class. I understand that they have a school to run, but they act as if he's having these problems on purpose. They don't understand the diagnosis AT ALL. > Here's where I'm desperate. He is currently on 3 waiting lists for special programs to help him more, almost like the residential program he was in, except he will come home every day. BUT he's not even gaurenteed a spot in any of these. I don't know what to do, they basically told me today that they can't handle him. But it is his right to have an education. I know every state is different, but what do I do????? please please please, i'll take any suggestion. Thank you > > > Quote Link to comment Share on other sites More sharing options...
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