Guest guest Report post Posted October 1, 2000 Hi, I don't believe we've met. Welcome! My name is Sandy. I'm from Ohio and was dx. with RP. in May of 99. Looking forward to getting to know you. Sandy Hi > Hope everyone is doing ok. > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, I check my mail throughout the day, if I don't it can really pile up. I know for me I was only on Pred. for the first 7 months after being dx.. Pred. alone was not helping me so I went on the Metho. What did you do about the flares all those years? Were you taking anything at all? Hugs, Sandy Re: Hi > Hi Sandy > > This is only my second time on line since I joined. Are you guys on every > night? I was dx with RP about 10 years ago, but have never been followed for > it by a dr until this month. The flares are coming closer together and the > Pred is becoming less effective ~ at this point on 60 mg a day. I chose to > ignore it as long as I could, but my body is finally saying " I Give " !!! > > Deb > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, What kind of damage do you have from the RP.? Are you going to start on the Metho.? Hugs, Sandy Re: Hi > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, What kind of damage do you have from the RP.? Are you going to start on the Metho.? Hugs, Sandy Re: Hi > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, What kind of damage do you have from the RP.? Are you going to start on the Metho.? Hugs, Sandy Re: Hi > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Hi! My name is Glenda and I am a newbie to the group! I have only been here a little over a month! I live in Oregon and have had RP for 7yrs. or more. Haven't met you but hope to get to know you! Lots of Love Glenda On Sun, 1 Oct 2000 20:39:37 EDT, Rpolychondritisegroups wrote: > Hope everyone is doing ok. > > _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Hi! My name is Glenda and I am a newbie to the group! I have only been here a little over a month! I live in Oregon and have had RP for 7yrs. or more. Haven't met you but hope to get to know you! Lots of Love Glenda On Sun, 1 Oct 2000 20:39:37 EDT, Rpolychondritisegroups wrote: > Hope everyone is doing ok. > > _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, Never beleive that your dr. is God! They aren't and can prove it everyday! You need to look for a dr. who knows what they are doing! Where do you live? Take care! Thinking of you! Lots of Love Glenda On Sun, 1 Oct 2000 21:10:34 EDT, Rpolychondritisegroups wrote: > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, Never beleive that your dr. is God! They aren't and can prove it everyday! You need to look for a dr. who knows what they are doing! Where do you live? Take care! Thinking of you! Lots of Love Glenda On Sun, 1 Oct 2000 21:10:34 EDT, Rpolychondritisegroups wrote: > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 1, 2000 Deb, Never beleive that your dr. is God! They aren't and can prove it everyday! You need to look for a dr. who knows what they are doing! Where do you live? Take care! Thinking of you! Lots of Love Glenda On Sun, 1 Oct 2000 21:10:34 EDT, Rpolychondritisegroups wrote: > Well, each time I had a flare up, I would go to the doctor and basically tell > them what to prescribe. No one knew anything about it! So, I've only been > treated with the Pred and only during the flares. Unfortunately this has > resulted in some serious damage to my body. But, I'm not a very good patient > and I don't follow doctors orders very well, lol! Never been one of those > people who think that my doctor is GOD! But I guess maybe it's time to give > it a shot. > > Hugs, > Deb _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 21, 2001 Cissi, Thank you so much for posting about this. I have had lifelong stomach problems myself. It is so interesting that your quest to relieve yours resulted in successful treatment for rosacea. I certainly intend to look into this type of therapy myself. Thank you! Matija > Hi, > I am new to this group. My name is Cissi, I live in Sweden where I work as a > pharmacist. I have probably had rosacea for at least 8 years - but it took > about 7 years to get the correct diagnose. I was 29 when diagnosed. > I use metronidazole and antibiotics (tetracycline) now and then - but I > wanted to share what I found out last summer. I had quite severe rosacea, > but did not want to take tetracycline due to the fine weather. My neighbour > is a lymphatic drainage therapist and I went there - not for the rosacea but > for my stomach problems. She immediately found out that the lymphatic > drainage from my face was blocked - I was swollen on my neck. She worked > with it for a while (it's a special massage method). Next morning I could > barely believe my eyes - the rosacea was almost gone - only some slightly > red dots where there were pustules etc the day before.... > Nowadays I've found out that I must go at least once a month but then I keep > my rosacea under control. My doctor is very surprised yet happy about it. > We've found out that the circulation in my entire body is bad - especially > in my legs and feet. > > Well, just wanted to share.... after all, I don't think that it hurts in any > way to try lymphatic drainage. Would be very interesting to hear what the > doctors on the list think of this? > > Best wishes, > Cissi Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 21, 2001 Cissi, Thank you so much for posting about this. I have had lifelong stomach problems myself. It is so interesting that your quest to relieve yours resulted in successful treatment for rosacea. I certainly intend to look into this type of therapy myself. Thank you! Matija > Hi, > I am new to this group. My name is Cissi, I live in Sweden where I work as a > pharmacist. I have probably had rosacea for at least 8 years - but it took > about 7 years to get the correct diagnose. I was 29 when diagnosed. > I use metronidazole and antibiotics (tetracycline) now and then - but I > wanted to share what I found out last summer. I had quite severe rosacea, > but did not want to take tetracycline due to the fine weather. My neighbour > is a lymphatic drainage therapist and I went there - not for the rosacea but > for my stomach problems. She immediately found out that the lymphatic > drainage from my face was blocked - I was swollen on my neck. She worked > with it for a while (it's a special massage method). Next morning I could > barely believe my eyes - the rosacea was almost gone - only some slightly > red dots where there were pustules etc the day before.... > Nowadays I've found out that I must go at least once a month but then I keep > my rosacea under control. My doctor is very surprised yet happy about it. > We've found out that the circulation in my entire body is bad - especially > in my legs and feet. > > Well, just wanted to share.... after all, I don't think that it hurts in any > way to try lymphatic drainage. Would be very interesting to hear what the > doctors on the list think of this? > > Best wishes, > Cissi Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 21, 2001 Cissi, Thank you so much for posting about this. I have had lifelong stomach problems myself. It is so interesting that your quest to relieve yours resulted in successful treatment for rosacea. I certainly intend to look into this type of therapy myself. Thank you! Matija > Hi, > I am new to this group. My name is Cissi, I live in Sweden where I work as a > pharmacist. I have probably had rosacea for at least 8 years - but it took > about 7 years to get the correct diagnose. I was 29 when diagnosed. > I use metronidazole and antibiotics (tetracycline) now and then - but I > wanted to share what I found out last summer. I had quite severe rosacea, > but did not want to take tetracycline due to the fine weather. My neighbour > is a lymphatic drainage therapist and I went there - not for the rosacea but > for my stomach problems. She immediately found out that the lymphatic > drainage from my face was blocked - I was swollen on my neck. She worked > with it for a while (it's a special massage method). Next morning I could > barely believe my eyes - the rosacea was almost gone - only some slightly > red dots where there were pustules etc the day before.... > Nowadays I've found out that I must go at least once a month but then I keep > my rosacea under control. My doctor is very surprised yet happy about it. > We've found out that the circulation in my entire body is bad - especially > in my legs and feet. > > Well, just wanted to share.... after all, I don't think that it hurts in any > way to try lymphatic drainage. Would be very interesting to hear what the > doctors on the list think of this? > > Best wishes, > Cissi Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 meg, i, am seperated from my husband..it's not an easy thing..especially for the kids. my kids love their dad so muc, and that will never change just because we, as a married couple don't get along. sometimes 2 happy individual parents sperated is alot better and healthier that one married miserable set of parents. at 10 and 11 your kids know whats going on. in my case i felt like i was setting a poor example for my kids,letting them think that being in an unhealthy marraige was ok. we are still a family. they see their dad every day..as a matter of fact he's outside playing basketball with them right now. you need to think of YOU, this is something thst we, as mothers, wives, and daughters rarely do. I am a firm believer is marriage..maybe you just need a break for a bit... maybe counciling will help? but reach into your heart and think about what will make YOU happy right now. the kids will be fine, as long as you are honest TOGETHER with them so they don't feel like their life is in limbo.kids are resiliant..they bounce back as long as they know they are loved and everything will be ok for them. email me if you want to talk. kim 7/12/01 nwh Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 meg, i, am seperated from my husband..it's not an easy thing..especially for the kids. my kids love their dad so muc, and that will never change just because we, as a married couple don't get along. sometimes 2 happy individual parents sperated is alot better and healthier that one married miserable set of parents. at 10 and 11 your kids know whats going on. in my case i felt like i was setting a poor example for my kids,letting them think that being in an unhealthy marraige was ok. we are still a family. they see their dad every day..as a matter of fact he's outside playing basketball with them right now. you need to think of YOU, this is something thst we, as mothers, wives, and daughters rarely do. I am a firm believer is marriage..maybe you just need a break for a bit... maybe counciling will help? but reach into your heart and think about what will make YOU happy right now. the kids will be fine, as long as you are honest TOGETHER with them so they don't feel like their life is in limbo.kids are resiliant..they bounce back as long as they know they are loved and everything will be ok for them. email me if you want to talk. kim 7/12/01 nwh Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 meg, i, am seperated from my husband..it's not an easy thing..especially for the kids. my kids love their dad so muc, and that will never change just because we, as a married couple don't get along. sometimes 2 happy individual parents sperated is alot better and healthier that one married miserable set of parents. at 10 and 11 your kids know whats going on. in my case i felt like i was setting a poor example for my kids,letting them think that being in an unhealthy marraige was ok. we are still a family. they see their dad every day..as a matter of fact he's outside playing basketball with them right now. you need to think of YOU, this is something thst we, as mothers, wives, and daughters rarely do. I am a firm believer is marriage..maybe you just need a break for a bit... maybe counciling will help? but reach into your heart and think about what will make YOU happy right now. the kids will be fine, as long as you are honest TOGETHER with them so they don't feel like their life is in limbo.kids are resiliant..they bounce back as long as they know they are loved and everything will be ok for them. email me if you want to talk. kim 7/12/01 nwh Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 The need their momma too =) I can say the surgery has been one of the best things to happen to me. It has changed my life in so many ways. I also know i might have died without it. You have your friends to help you get through this =) --Liz At 10:18 AM 7/5/2001 -0700, you wrote: >Hi all, >I am having surgery on Monday, July 9th! I'm happy, >but arguing with my husband again...and really >contemplating a separation from him...I know I have to >get thru the surgery and feel better first, but I have >been unhappy in our relationship for a while...the >hardest part is my boys aged 10 and 11 realy love and >need their dad...I'd appreciate prayers anyone can offer...meg > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg, Me and my hubby went through the same things before I had surgery and also thought about separation and divorce. Well now I am glad that I didn't. I am not saying that things are perfect here but are much better than they use to be. Think long and hard about it before you do it. Things can turn around too. Give it some time after surgery and see if things fo change. For me I think the change came more from within than anything. I am now a almost a year out since I had surgery on 7/21/00 and am down to 173. Lea Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg, Me and my hubby went through the same things before I had surgery and also thought about separation and divorce. Well now I am glad that I didn't. I am not saying that things are perfect here but are much better than they use to be. Think long and hard about it before you do it. Things can turn around too. Give it some time after surgery and see if things fo change. For me I think the change came more from within than anything. I am now a almost a year out since I had surgery on 7/21/00 and am down to 173. Lea Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg, Me and my hubby went through the same things before I had surgery and also thought about separation and divorce. Well now I am glad that I didn't. I am not saying that things are perfect here but are much better than they use to be. Think long and hard about it before you do it. Things can turn around too. Give it some time after surgery and see if things fo change. For me I think the change came more from within than anything. I am now a almost a year out since I had surgery on 7/21/00 and am down to 173. Lea Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg if I were you I wouldn't make any huge decisions so near to your surgery date. Also have you talked about counselling? Try and remember what brought you & dh together in the first place and see if you can save it. I remember when my dh & I were having problems our pastor told us its quite often what we love about our spouse in the first place that ultimately drives us crazy about them. ie .. I loved my husband's whatever happens, happens, carefree laidback nature .. years later with children and trying to schedule lives, vacation, decisions that drove me crazy as I could never get him to say yes/no on issues ... just a small example. I think we had to grow up literally as I met him at 15, married at 17 and just marked our 15th anniversary together. Good luck though whatever you decide. Just remember even if you do seperate allow the children to see the father if he is willing to be involved with them. Lyssa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg if I were you I wouldn't make any huge decisions so near to your surgery date. Also have you talked about counselling? Try and remember what brought you & dh together in the first place and see if you can save it. I remember when my dh & I were having problems our pastor told us its quite often what we love about our spouse in the first place that ultimately drives us crazy about them. ie .. I loved my husband's whatever happens, happens, carefree laidback nature .. years later with children and trying to schedule lives, vacation, decisions that drove me crazy as I could never get him to say yes/no on issues ... just a small example. I think we had to grow up literally as I met him at 15, married at 17 and just marked our 15th anniversary together. Good luck though whatever you decide. Just remember even if you do seperate allow the children to see the father if he is willing to be involved with them. Lyssa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg if I were you I wouldn't make any huge decisions so near to your surgery date. Also have you talked about counselling? Try and remember what brought you & dh together in the first place and see if you can save it. I remember when my dh & I were having problems our pastor told us its quite often what we love about our spouse in the first place that ultimately drives us crazy about them. ie .. I loved my husband's whatever happens, happens, carefree laidback nature .. years later with children and trying to schedule lives, vacation, decisions that drove me crazy as I could never get him to say yes/no on issues ... just a small example. I think we had to grow up literally as I met him at 15, married at 17 and just marked our 15th anniversary together. Good luck though whatever you decide. Just remember even if you do seperate allow the children to see the father if he is willing to be involved with them. Lyssa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg, I can't tell you how you're feeling or choices to make, only you know what the problems are, but I do strongly believe if a marriage isn't working the way you had hoped, to seek counseling. I know for me (not marriage related), but for personal issues in my " previous life " , that until I sought out counseling, I hadn't a freaking clue what was bothering me. Once I established a good relationship with my counselor, she finally figured out what my issues were. I now concentrate on making these things better, shed off the " bad stuff " , and concentrate on ME! Good luck sweetie. Dawn hi Hi all, I am having surgery on Monday, July 9th! I'm happy, but arguing with my husband again...and really contemplating a separation from him...I know I have to get thru the surgery and feel better first, but I have been unhappy in our relationship for a while...the hardest part is my boys aged 10 and 11 realy love and need their dad...I'd appreciate prayers anyone can offer...meg Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 5, 2001 Meg, I can't tell you how you're feeling or choices to make, only you know what the problems are, but I do strongly believe if a marriage isn't working the way you had hoped, to seek counseling. I know for me (not marriage related), but for personal issues in my " previous life " , that until I sought out counseling, I hadn't a freaking clue what was bothering me. Once I established a good relationship with my counselor, she finally figured out what my issues were. I now concentrate on making these things better, shed off the " bad stuff " , and concentrate on ME! Good luck sweetie. Dawn hi Hi all, I am having surgery on Monday, July 9th! I'm happy, but arguing with my husband again...and really contemplating a separation from him...I know I have to get thru the surgery and feel better first, but I have been unhappy in our relationship for a while...the hardest part is my boys aged 10 and 11 realy love and need their dad...I'd appreciate prayers anyone can offer...meg Quote Share this post Link to post Share on other sites
