Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Flo, let me tell you what it's like to lose 1-2 pounds a week for 12 weeks . . . You are at TEN weeks and you've lost FIFTEEN more pounds than me in two weeks LESS than me. Sheesh. Hugs, 12 weeks today, starting wt. 249, current 216. That's a whoopie-do 33 pounds in THREE MONTHS, Flo. florence@... wrote: > > Drema and Flo's Update: > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost three > pounds in three > weeks; (I know, I know, you're going to tell me maybe I lost inches, > maybe it's the wrong > time of the month, maybe I'm retaining water...yadda yadda yadda...and > I do appreciate > anything you might like to write. The spoiled brat in me is > bummed...but I'll get over it..it's > sure more than I've ever lost before) > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > Taking my crappy 256 pound body, cramming it into a size 22 bathing > suit (instead of a 26) > and going swimming and gonna try to be grateful. I oughtta be. I'll be > fine. Don't try to cheer > me up. I want to be pissed off for a few hours. I'm gonna swim, say a > few dirty words, do > my hair, put on some makeup, go to the store to get milk, fix > spaghetti and meatballs and > sausage for dinner and by then I'll feel ok. Besides that...our MGB > Lori from Raleigh is > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > coming to support group on > Saturday....see...already I'm feeling better over my crappy no account > three pounds. > > Flo who's just a bit pissed off but getting over it > > Florence Ballengee > Hollywood, land > florence@... > > Download NeoPlanet at http://www.neoplanet.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Drema and Flo's Update: Flo: Total Weight loss 48 pounds since May 31 (groan, only lost three pounds in three weeks; (I know, I know, you're going to tell me maybe I lost inches, maybe it's the wrong time of the month, maybe I'm retaining water...yadda yadda yadda...and I do appreciate anything you might like to write. The spoiled brat in me is bummed...but I'll get over it..it's sure more than I've ever lost before) Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! Taking my crappy 256 pound body, cramming it into a size 22 bathing suit (instead of a 26) and going swimming and gonna try to be grateful. I oughtta be. I'll be fine. Don't try to cheer me up. I want to be pissed off for a few hours. I'm gonna swim, say a few dirty words, do my hair, put on some makeup, go to the store to get milk, fix spaghetti and meatballs and sausage for dinner and by then I'll feel ok. Besides that...our MGB Lori from Raleigh is coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are coming to support group on Saturday....see...already I'm feeling better over my crappy no account three pounds. Flo who's just a bit pissed off but getting over it Florence Ballengee Hollywood, land florence@... Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 I forgot to mention that my 33 pounds includes that 11 pound " water weight " loss the first week, so for the past ELEVEN weeks, I've lost 22 pounds -- that's exactly 2 pounds a week. Sigh. Wanna swap, huh, huh, do ya', huh???!!! Hugs, florence@... wrote: > > Yea but, but, but, I only have one pouch. You have two. LOL..ok > ...I'll shut up. I knew > I shouldn't have whined anyway. > > Flo walking away, had down, ducking 's cream pie throwing > > > ** Original Subject: RE: Update > > ** > > > ** Original Date: Thu, 10 Aug 2000 15:09:20 -0400 > > > ** Original Message follows... > > > > > Flo, let me tell you what it's like to lose 1-2 pounds a week for 12 > > weeks . . . > > > > You are at TEN weeks and you've lost FIFTEEN more pounds than me in > two > > weeks LESS than me. > > > > Sheesh. > > > > Hugs, > > > > > > 12 weeks today, starting wt. 249, current 216. That's a whoopie-do > 33 > > pounds in THREE MONTHS, Flo. > > > > > > florence@... wrote: > > > > > > Drema and Flo's Update: > > > > > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost > three > > > pounds in three > > > weeks; (I know, I know, you're going to tell me maybe I lost > inches, > > > maybe it's the wrong > > > time of the month, maybe I'm retaining water...yadda yadda > yadda...and > > > I do appreciate > > > anything you might like to write. The spoiled brat in me is > > > bummed...but I'll get over it..it's > > > sure more than I've ever lost before) > > > > > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > > > > > Taking my crappy 256 pound body, cramming it into a size 22 > bathing > > > suit (instead of a 26) > > > and going swimming and gonna try to be grateful. I oughtta be. > I'll be > > > fine. Don't try to cheer > > > me up. I want to be pissed off for a few hours. I'm gonna swim, > say a > > > few dirty words, do > > > my hair, put on some makeup, go to the store to get milk, fix > > > spaghetti and meatballs and > > > sausage for dinner and by then I'll feel ok. Besides that...our > MGB > > > Lori from Raleigh is > > > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > > > coming to support group on > > > Saturday....see...already I'm feeling better over my crappy no > account > > > three pounds. > > > > > > Flo who's just a bit pissed off but getting over it > > > > > > Florence Ballengee > > > Hollywood, land > > > florence@... > > > > > > Download NeoPlanet at http://www.neoplanet.com > > > > > > > > > > > This message is from the Mini-Gastric Bypass Mailing List at > Onelist.com > > Please visit our web site at http://clos.net > > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > > To Unsubscribe Send and Email to: > MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > > > > >** --------- End Original Message ----------- ** > > > > > Florence Ballengee > Hollywood, land > florence@... > > Download NeoPlanet at http://www.neoplanet.com > > ---------------------------------------------------------------------- > > ---------------------------------------------------------------------- > This message is from the Mini-Gastric Bypass Mailing List at > Onelist.com > Please visit our web site at http://clos.net > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > To Unsubscribe Send and Email to: > MiniGastricBypass-unsubscribe (AT) egroups (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Yea but, but, but, I only have one pouch. You have two. LOL..ok ...I'll shut up. I knew I shouldn't have whined anyway. Flo walking away, had down, ducking 's cream pie throwing > ** Original Subject: RE: Update > ** > > ** Original Date: Thu, 10 Aug 2000 15:09:20 -0400 > ** Original Message follows... > > Flo, let me tell you what it's like to lose 1-2 pounds a week for 12 > weeks . . . > > You are at TEN weeks and you've lost FIFTEEN more pounds than me in two > weeks LESS than me. > > Sheesh. > > Hugs, > > > 12 weeks today, starting wt. 249, current 216. That's a whoopie-do 33 > pounds in THREE MONTHS, Flo. > > > florence@... wrote: > > > > Drema and Flo's Update: > > > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost three > > pounds in three > > weeks; (I know, I know, you're going to tell me maybe I lost inches, > > maybe it's the wrong > > time of the month, maybe I'm retaining water...yadda yadda yadda...and > > I do appreciate > > anything you might like to write. The spoiled brat in me is > > bummed...but I'll get over it..it's > > sure more than I've ever lost before) > > > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > > > Taking my crappy 256 pound body, cramming it into a size 22 bathing > > suit (instead of a 26) > > and going swimming and gonna try to be grateful. I oughtta be. I'll be > > fine. Don't try to cheer > > me up. I want to be pissed off for a few hours. I'm gonna swim, say a > > few dirty words, do > > my hair, put on some makeup, go to the store to get milk, fix > > spaghetti and meatballs and > > sausage for dinner and by then I'll feel ok. Besides that...our MGB > > Lori from Raleigh is > > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > > coming to support group on > > Saturday....see...already I'm feeling better over my crappy no account > > three pounds. > > > > Flo who's just a bit pissed off but getting over it > > > > Florence Ballengee > > Hollywood, land > > florence@... > > > > Download NeoPlanet at http://www.neoplanet.com > > > > > > This message is from the Mini-Gastric Bypass Mailing List at Onelist.com > Please visit our web site at http://clos.net > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > To Unsubscribe Send and Email to: MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > >** --------- End Original Message ----------- ** > Florence Ballengee Hollywood, land florence@... Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Um. No. I'll pass. But thank you very much for your unselfish offer . Flo > ** Original Subject: RE: Update > ** > > ** Original Date: Thu, 10 Aug 2000 15:55:26 -0400 > ** Original Message follows... > > I forgot to mention that my 33 pounds includes that 11 pound " water > weight " loss the first week, so for the past ELEVEN weeks, I've lost 22 > pounds -- that's exactly 2 pounds a week. Sigh. > > Wanna swap, huh, huh, do ya', huh???!!! > > > > Hugs, > > > > > florence@... wrote: > > > > Yea but, but, but, I only have one pouch. You have two. LOL..ok > > ...I'll shut up. I knew > > I shouldn't have whined anyway. > > > > Flo walking away, had down, ducking 's cream pie throwing > > > > > ** Original Subject: RE: Update > > > ** > > > > ** Original Date: Thu, 10 Aug 2000 15:09:20 -0400 > > > > > ** Original Message follows... > > > > > > > > Flo, let me tell you what it's like to lose 1-2 pounds a week for 12 > > > weeks . . . > > > > > > You are at TEN weeks and you've lost FIFTEEN more pounds than me in > > two > > > weeks LESS than me. > > > > > > Sheesh. > > > > > > Hugs, > > > > > > > > > 12 weeks today, starting wt. 249, current 216. That's a whoopie-do > > 33 > > > pounds in THREE MONTHS, Flo. > > > > > > > > > florence@... wrote: > > > > > > > > Drema and Flo's Update: > > > > > > > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost > > three > > > > pounds in three > > > > weeks; (I know, I know, you're going to tell me maybe I lost > > inches, > > > > maybe it's the wrong > > > > time of the month, maybe I'm retaining water...yadda yadda > > yadda...and > > > > I do appreciate > > > > anything you might like to write. The spoiled brat in me is > > > > bummed...but I'll get over it..it's > > > > sure more than I've ever lost before) > > > > > > > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > > > > > > > Taking my crappy 256 pound body, cramming it into a size 22 > > bathing > > > > suit (instead of a 26) > > > > and going swimming and gonna try to be grateful. I oughtta be. > > I'll be > > > > fine. Don't try to cheer > > > > me up. I want to be pissed off for a few hours. I'm gonna swim, > > say a > > > > few dirty words, do > > > > my hair, put on some makeup, go to the store to get milk, fix > > > > spaghetti and meatballs and > > > > sausage for dinner and by then I'll feel ok. Besides that...our > > MGB > > > > Lori from Raleigh is > > > > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > > > > coming to support group on > > > > Saturday....see...already I'm feeling better over my crappy no > > account > > > > three pounds. > > > > > > > > Flo who's just a bit pissed off but getting over it > > > > > > > > Florence Ballengee > > > > Hollywood, land > > > > florence@... > > > > > > > > Download NeoPlanet at http://www.neoplanet.com > > > > > > > > > > > > > > > > This message is from the Mini-Gastric Bypass Mailing List at > > Onelist.com > > > Please visit our web site at http://clos.net > > > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > > > > To Unsubscribe Send and Email to: > > MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > > > > > > > >** --------- End Original Message ----------- ** > > > > > > > > > Florence Ballengee > > Hollywood, land > > florence@... > > > > Download NeoPlanet at http://www.neoplanet.com > > > > ---------------------------------------------------------------------- > > > > ---------------------------------------------------------------------- > > This message is from the Mini-Gastric Bypass Mailing List at > > Onelist.com > > Please visit our web site at http://clos.net > > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > > To Unsubscribe Send and Email to: > > MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > > > > This message is from the Mini-Gastric Bypass Mailing List at Onelist.com > Please visit our web site at http://clos.net > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > To Unsubscribe Send and Email to: MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > >** --------- End Original Message ----------- ** > Florence Ballengee Hollywood, land florence@... Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Gosh Flo, do you want EVERYTHING???? You are already painfully thin! lol Dinah in Alabama -- In MiniGastricBypass (AT) egroups (DOT) com, florence@u... wrote: > Drema and Flo's Update: > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost three pounds in three > weeks; (I know, I know, you're going to tell me maybe I lost inches, maybe it's the wrong > time of the month, maybe I'm retaining water...yadda yadda yadda...and I do appreciate > anything you might like to write. The spoiled brat in me is bummed...but I'll get over it..it's > sure more than I've ever lost before) > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > Taking my crappy 256 pound body, cramming it into a size 22 bathing suit (instead of a 26) > and going swimming and gonna try to be grateful. I oughtta be. I'll be fine. Don't try to cheer > me up. I want to be pissed off for a few hours. I'm gonna swim, say a few dirty words, do > my hair, put on some makeup, go to the store to get milk, fix spaghetti and meatballs and > sausage for dinner and by then I'll feel ok. Besides that...our MGB Lori from Raleigh is > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are coming to support group on > Saturday....see...already I'm feeling better over my crappy no account three pounds. > > Flo who's just a bit pissed off but getting over it > > > > > > Florence Ballengee > Hollywood, land > florence@u... > > Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Flo, are you exercising? If you are, do just a little more and if your not...then get started. Exercise will always give your metabolism a little boost. You are probably right where you always were with dieting, when you starting slipping...and your body is ready for you to start slipping...but you're not gonna do it, cause you no longer can cheat! Does this make sense, or am I more tired than I thought!? Dinah > > > Drema and Flo's Update: > > > > > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost > > three pounds in three > > > weeks; (I know, I know, you're going to tell me maybe I lost > > inches, maybe it's the wrong > > > time of the month, maybe I'm retaining water...yadda yadda > > yadda...and I do appreciate > > > anything you might like to write. The spoiled brat in me is > > bummed...but I'll get over it..it's > > > sure more than I've ever lost before) > > > > > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > > > > > Taking my crappy 256 pound body, cramming it into a size 22 > > bathing suit (instead of a 26) > > > and going swimming and gonna try to be grateful. I oughtta be. I'll > > be fine. Don't try to cheer > > > me up. I want to be pissed off for a few hours. I'm gonna swim, say > > a few dirty words, do > > > my hair, put on some makeup, go to the store to get milk, fix > > spaghetti and meatballs and > > > sausage for dinner and by then I'll feel ok. Besides that...our MGB > > Lori from Raleigh is > > > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > > coming to support group on > > > Saturday....see...already I'm feeling better over my crappy no > > account three pounds. > > > > > > Flo who's just a bit pissed off but getting over it > > > > > > > > > > > > > > > > > > Florence Ballengee > > > Hollywood, land > > > florence@u... > > > > > > Download NeoPlanet at http://www.neoplanet.com > > > > > > > > > > This message is from the Mini-Gastric Bypass Mailing List at Onelist.com > > Please visit our web site at http://clos.net > > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > > > To Unsubscribe Send and Email to: MiniGastricBypass- unsubscribe (AT) egroups (DOT) com > > > > > >** --------- End Original Message ----------- ** > > > > > > Florence Ballengee > Hollywood, land > florence@u... > > Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Yes Dinah. I do want everything. LOL...I know it was stupid and I'm over it...but I was disappointed. Guess the surgery spoiled me. But hey, I'm on my way down instead of my usual on the way up! OK, I'm over it. I'm not whining any more. Flo > ** Original Subject: RE: Re: Update > ** > > ** Original Date: Thu, 10 Aug 2000 20:22:36 -0400 > ** Original Message follows... > > Gosh Flo, do you want EVERYTHING???? You are already painfully thin! > lol > Dinah in Alabama > > > > -- In MiniGastricBypass (AT) egroups (DOT) com, florence@u... wrote: > > Drema and Flo's Update: > > > > Flo: Total Weight loss 48 pounds since May 31 (groan, only lost > three pounds in three > > weeks; (I know, I know, you're going to tell me maybe I lost > inches, maybe it's the wrong > > time of the month, maybe I'm retaining water...yadda yadda > yadda...and I do appreciate > > anything you might like to write. The spoiled brat in me is > bummed...but I'll get over it..it's > > sure more than I've ever lost before) > > > > Drema: Since last Friday surgery, 13 pounds!!! She is ecstatic! > > > > Taking my crappy 256 pound body, cramming it into a size 22 > bathing suit (instead of a 26) > > and going swimming and gonna try to be grateful. I oughtta be. I'll > be fine. Don't try to cheer > > me up. I want to be pissed off for a few hours. I'm gonna swim, say > a few dirty words, do > > my hair, put on some makeup, go to the store to get milk, fix > spaghetti and meatballs and > > sausage for dinner and by then I'll feel ok. Besides that...our MGB > Lori from Raleigh is > > coming to visit me!!!!!!!!!!!!!!!!!!!!!!!!! And lots of folks are > coming to support group on > > Saturday....see...already I'm feeling better over my crappy no > account three pounds. > > > > Flo who's just a bit pissed off but getting over it > > > > > > > > > > > > Florence Ballengee > > Hollywood, land > > florence@u... > > > > Download NeoPlanet at http://www.neoplanet.com > > > > > This message is from the Mini-Gastric Bypass Mailing List at Onelist.com > Please visit our web site at http://clos.net > Get the Patient Manual at http://clos.net/get_patient_manual.htm > > To Unsubscribe Send and Email to: MiniGastricBypass-unsubscribe (AT) egroups (DOT) com > >** --------- End Original Message ----------- ** > Florence Ballengee Hollywood, land florence@... Download NeoPlanet at http://www.neoplanet.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Lucy, you have a great time at that reunion. Let us know all about it when you get home. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Hi Lu, Lucy here, I have a large sac looking thing on the floor of my mouth, just on one side. (lower left bottom of my mouth). I asked my Doctor about it and he sorta passed it off as being "nothing". It does not hurt, just looks like a blob or roll of fat on the inside side of my gums. I will have it checked out again. You take care and know that you are in my prayers. Love and Prayers, Lucy PS I will be in n, Alabama April 27 for my 40th class reunion! My Brother asked me to stay with them, but I am staying in the same motel where they are having the party and be with classmates. Wish you were close enough to there so we could meet. update Hi Everyone, I just wanted to touch base with you and let you know what's going on with me. I hate that I have not been able to keep up with all of the mail lately and it may be a while before I can. I do think about you all and I have all of the RP patients in my prayers. I am having problems again with my submandibular gland again this time the CT scan showed swollen lymph nodes on both sides in the submandibular spaces. I don't have a left submandibular gland it had to be removed in 1995, I was told at that time RP had something to do with it. I have no idea of it really does or not. I had to be pulled off my Imuran and pred. due to a GYN oncology problem about 3 weeks ago. So, this tumor like cyst just popped up this past week under my tongue on the floor of my mouth. It caused my tongue to swell somewhat and made my speech a little distorted. They put me on a new antibiotic and I had a reaction to it, severe kidney pain and edema in my feet, ankles, legs, knees and face. The antibiotic did help the tongue swelling. They are going to send me back to Vanderbilt Hospital in Tn. to the place where they treated me when this happened before. Also my ear and nose is flaring. I need a new rheumy and I am in the process of trying to find one. GEEZ, I know this sounds like fun! I am waiting for them to set up the day and time. I am curious if any one else has had any problems with their mouth, or tongue? Please all take care, Love, Lu 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 Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Hi , I am really looking forward to going home for the reunion. I have not been since my Uncle passed away and will visit with my aunt, brother and his wife and other relatives while I am there. You take good care of yourself. By the way, did you look at that " illusion " email I sent? It is something else, please try to look at it. Going to bed now. Love and Prayers, Lucy Re: update > Lucy, you have a great time at that reunion. Let us know all about it when > you get home. > > hugs > > > > 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 Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 In a message dated 4/2/02 12:46:17 PM Pacific Standard Time, mmjw3@... writes: << Any insight or experience sharing would be appreciated. I know that the medication (metho) can take a long time to really kick in, but I'm on 17.5 a week, as well as 30 mg. of Prednisone a day, and I guess I am expecting more results. >> , I'm sorry that you aren't feeling any better. There is nothing more discouraging than to have high hopes of a great time and still feel the same. I forgot, how long have you been on the metho? I went up to 25mg weekly and was on it for a year. I know it takes at least 3 months to fully kick in. But don't make the mistake I did. I stayed on it too long without ever being able to lower the pred. In fact I would have to raise the pred during a flare. My new dr. told me that that was a sign that the metho was not working for me. I should have been able to lower the pred a little after at least 6 months. Hope you get a good day in there somewhere. I'm keeping you in my thought. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 <My body has not given me one day of " no pain " since I got this condition in December. The pain is definitely a lower level than it was, probably due to the medications I'm on, and I'm very thankful for that. It makes me wonder if what I have is the " smoldering " kind of RP, or if everyone experiences a level of pain daily?> , I have the same problem. I am also on 30 mg of prednisone right now and still have pain everyday. In my throat and nose usually. I have been taking Dapsone (100 mg.) for a few weeks and this doesn't seem to be helping. My doctor, rhuemy, said that the pain indicates that the RP is not well controlled -- therefore she wants to add metho. to the mix. I have an appointment on the 11th. She will discuss the CT scan they did of my throat at that time. It is very depressing to be taking all this pred. and have it help only a little or for a little while. It even starts me thinking that maybe they have it wrong. Maybe it's something else. Although I know that that is just denial and I WISH it were something else. LOL!! I did break up the pred. dose today and it did help me to see that it really is helping some as at about 1:30 my nose really started in. I was able to add the other 15 mg at that point and it calmed down. I'm just afraid the docs will say that means I need even MORE pred. YUCK!!!! So, no, you aren't alone. I hope that others will also chime in as this a question for me as well!!! Kathleen (Tx) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Hi Lu, Lucy here, I have a large sac looking thing on the floor of my mouth, just on one side. (lower left bottom of my mouth). I asked my Doctor about it and he sorta passed it off as being "nothing". It does not hurt, just looks like a blob or roll of fat on the inside side of my gums. I will have it checked out again. You take care and know that you are in my prayers. Love and Prayers, Lucy PS I will be in n, Alabama April 27 for my 40th class reunion! My Brother asked me to stay with them, but I am staying in the same motel where they are having the party and be with classmates. Wish you were close enough to there so we could meet. HI Lucy, Please have the area in your mouth checked out they can do a CT scan of it. I would love to meet you but n is a long way from me. Also, I have been sick so much this whole year, I'm not sure how I would be feeling then. I hope you have loads of fun at your reunion. Thanks for the prayers. Love ya Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Like everything else, the metho takes time. I don't remember how long it took for me, because I was in one major flare that lasted about 2 - 8 weeks before the pred and metho got it under control. I suppose we all live with some level of pain everyday, I really only pay attention to it when it becomes more than I can ignore - and I am very good at ignoring it! Try to do things that you enjoy that will also take your mind off it, and go on with life. There's not much we can do about it, so I learned to live with it. Granted, it's NOT my first choice, but it could be a whole lot worse. Hang in there! Love, Judy update Hello all!Hawaii was very nice, I love the island of Kauai! It's truly abeautiful island!I was disappointed, because I never got to feeling better, and Ithought with all of that rest and no responsibilities, I would. Thatwas a little discouraging, but it gave me information. It let meknow that I'm not doing too much by working.My body has not given me one day of "no pain" since I got thiscondition in December. The pain is definitely a lower level than itwas, probably due to the medications I'm on, and I'm very thankfulfor that. It makes me wonder if what I have is the "smoldering" kindof RP, or if everyone experiences a level of pain daily?Any insight or experience sharing would be appreciated.I know that the medication (metho) can take a long time to reallykick in, but I'm on 17.5 a week, as well as 30 mg. of Prednisone aday, and I guess I am expecting more results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Lucy, have a great time! Enjoy yourself and forget about this darned old RP. Love, Judy update Hi Everyone, I just wanted to touch base with you and let you know what's going on with me. I hate that I have not been able to keep up with all of the mail lately and it may be a while before I can. I do think about you all and I have all of the RP patients in my prayers. I am having problems again with my submandibular gland again this time the CT scan showed swollen lymph nodes on both sides in the submandibular spaces. I don't have a left submandibular gland it had to be removed in 1995, I was told at that time RP had something to do with it. I have no idea of it really does or not. I had to be pulled off my Imuran and pred. due to a GYN oncology problem about 3 weeks ago. So, this tumor like cyst just popped up this past week under my tongue on the floor of my mouth. It caused my tongue to swell somewhat and made my speech a little distorted. They put me on a new antibiotic and I had a reaction to it, severe kidney pain and edema in my feet, ankles, legs, knees and face. The antibiotic did help the tongue swelling. They are going to send me back to Vanderbilt Hospital in Tn. to the place where they treated me when this happened before. Also my ear and nose is flaring. I need a new rheumy and I am in the process of trying to find one. GEEZ, I know this sounds like fun! I am waiting for them to set up the day and time. I am curious if any one else has had any problems with their mouth, or tongue? Please all take care, Love, Lu 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 Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Lu, I'm amazed your tongue was still long enough to catch something! (And you KNOW that I am just teasing you). As soon as you get a date for Vanderbilt, please let us know. Altho' you've been and still are on the prayer list, I'll keep on praying for you! Hang in there, sweetie, you know it will be allright, because I will not accept anything else, got that? Love you, Judy update Hi Everyone, I just wanted to touch base with you and let you know what's going on with me. I hate that I have not been able to keep up with all of the mail lately and it may be a while before I can. I do think about you all and I have all of the RP patients in my prayers. I am having problems again with my submandibular gland again this time the CT scan showed swollen lymph nodes on both sides in the submandibular spaces. I don't have a left submandibular gland it had to be removed in 1995, I was told at that time RP had something to do with it. I have no idea of it really does or not. I had to be pulled off my Imuran and pred. due to a GYN oncology problem about 3 weeks ago. So, this tumor like cyst just popped up this past week under my tongue on the floor of my mouth. It caused my tongue to swell somewhat and made my speech a little distorted. They put me on a new antibiotic and I had a reaction to it, severe kidney pain and edema in my feet, ankles, legs, knees and face. The antibiotic did help the tongue swelling. They are going to send me back to Vanderbilt Hospital in Tn. to the place where they treated me when this happened before. Also my ear and nose is flaring. I need a new rheumy and I am in the process of trying to find one. GEEZ, I know this sounds like fun! I am waiting for them to set up the day and time. I am curious if any one else has had any problems with their mouth, or tongue? Please all take care, Love, Lu 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 Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Lately ads are cutting off the messages so that I lose most of the message. Are any of you having the same problem? Is there some way to get rid of the ad so I can see the message? Or is this more of Yahoo's pathetic service? Re: update Hi Lu, Lucy here, I have a large sac looking thing on the floor of my mouth, just o 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 Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Doris, I only have that problem if I read the posts at the Yahoo site. How have you been doing? Haven't heard much from you which makes me worry about you. LOL Hugs, Sandy Subject: Re: update Lately ads are cutting off the messages so that I lose most of the message. Are any of you having the same problem? Is there some way to get rid of the ad so I can see the message? Or is this more of Yahoo's pathetic service? Re: update Hi Lu, Lucy here, I have a large sac looking thing on the floor of my mouth, just o 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Good luck, . I have my fingers (and my toes and my eyes) crossed that this will work for Micki. I know you and your wife desperately need hope right now. Maggie ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Good luck with it ! I hope she does as well with it as most of our kids have! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 , I really hope you see some results. Risperdal is a lifesaver here. I panic if the doc even hints around about cutting it out. My life has changed so much for the better since starting it, and so has Ebony's. She just doesn't have the moods like before and we haven't seen any self injurious behaviors since starting it either. Good luck to you guys. Tamara mom to Ebony, 5 years old, asd, adhd, bipolar and , 2, polish (lol) wife to Terry > >Reply-To: parenting_autism >To: parenting_autism >Subject: Update >Date: Tue, 13 May 2003 01:26:45 -0000 > >Just got back from the Developmental Pediatrician. Unfortunately we >have to drive to Denver (1 1/2 hour drive each way) to see him. (The >healthcare for special needs kids is not too great here in Colorado >Springs). He is putting Micki on Respredal. Luckily he does a lot >of correspondence via phone and e-mail so we don't have to drive all >that way. We are so looking forward to seeing some results with >Micki. My wife and I are getting really tired. We are going to try >the liquid version and since he is starting her out on 1 cc hopefully >she will take it without any problem. > >Will let you know how things go. > > Wilhelm >Mickisdaddy >Micki Dx Autistic, Mentally Retarded, and a beautiful angel > _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Best of luck . I know that medication has been a lifesaver for a few families on this list. We'll add your family to our prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2003 Report Share Posted May 13, 2003 , I hope this helps your daughter so the whole family can be happier!! I lived in Colorado Springs (Black Forest)/Manitou Springs for a few years. Beautiful place!! Warm Regards Mom to ASD 11/25/00 & 5/10/99 In Maine Update Just got back from the Developmental Pediatrician. Unfortunately we have to drive to Denver (1 1/2 hour drive each way) to see him. (The healthcare for special needs kids is not too great here in Colorado Springs). He is putting Micki on Respredal. Luckily he does a lot of correspondence via phone and e-mail so we don't have to drive all that way. We are so looking forward to seeing some results with Micki. My wife and I are getting really tired. We are going to try the liquid version and since he is starting her out on 1 cc hopefully she will take it without any problem. Will let you know how things go. Wilhelm Mickisdaddy Micki Dx Autistic, Mentally Retarded, and a beautiful angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2003 Report Share Posted May 13, 2003 Sounds good so far, . Salli Quote Link to comment Share on other sites More sharing options...
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