Re: [TMIC] Re: tmic-digest Digest V2008 #478
Many gain abdominal girth while on cortisone/prednisone, or soon after. Unfortunately, I was never given any cortisone/prednisone. I was only given HIV meds, so it took a full year for my lesions to go away. Todd in CC, TX --- On Fri, 12/5/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Friday, December 5, 2008, 3:27 PM Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Many gain abdominal girth while on cortisone/prednisone, or soon after. The bloat is secondary to the cortisone which causes increases in the lipoid cells. This results in weight gain, increase in blood pressure, borderline diabetes, and hyperlipidemia ( increased cholesterol or triglycerides). This group has been named the Metabolic Syndrome. I was attacked by this beast several years ago, but decided to go on vacation to mexico, the change in diet, increased activity made my diabetes, hypertension, weight and lipids go down. My suggestion: When given a new diagnosis, go on VACATION !!! F
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Oh that does sound wonderful!! Candy K - Original Message - From: L T CHERPESKI [EMAIL PROTECTED] To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com, [EMAIL PROTECTED] Sent: Saturday, December 6, 2008 1:46:36 AM (GMT-0500) America/New_York Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 oh F, I so totally agree! Linda - Original Message - From: [EMAIL PROTECTED] To: jrushton ; [EMAIL PROTECTED] ; TMIC Sent: Friday, December 05, 2008 2:27 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Many gain abdominal girth while on cortisone/prednisone, or soon after. The bloat is secondary to the cortisone which causes increases in the lipoid cells. This results in weight gain, increase in blood pressure, borderline diabetes, and hyperlipidemia ( increased cholesterol or triglycerides). This group has been named the Metabolic Syndrome. I was attacked by this beast several years ago, but decided to go on vacation to mexico, the change in diet, increased activity made my diabetes, hypertension, weight and lipids go down. My suggestion: When given a new diagnosis, go on VACATION !!! F
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Once the bloated came back down, I had put on 20 lbs. I was only at 135 lbs before TM, now at 160, it's hard to get rid of it, especially around the holidays. Trying to keep the weight off, Todd in CC, TX --- On Thu, 12/4/08, jrushton [EMAIL PROTECTED] wrote: From: jrushton [EMAIL PROTECTED]Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478To: [EMAIL PROTECTED], "TMIC" tmic-list@eskimo.comDate: Thursday, December 4, 2008, 8:36 PM In response to: To this day I have a poofy tummy and have never once contributed it to the disease. I thought I had just gained weight over the years. Isn't that strange? Jude Well, I know that it is very normal that aswe grow older and as soon as I started 'the change' it was harder and harder to keep the weight off but then I was able to do all sorts of things to help. But when TM hit and I came home from ICU/PT/Rehab, I thought I had become pregnant somewhere in those three weeks...6 months worth!!! At 58 years old no less ! Amazing! j
Re: [TMIC] Re: tmic-digest Digest V2008 #478
In response to: Also, a question about Disability Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Once the bloated came back down, I had put on 20 lbs. I was only at 135 lbs before TM, now at 160, it's hard to get rid of it, especially around the holidays. Trying to keep the weight off, Todd in CC, TX I have to laugh at all of the clothes and styles, now, Todd. The pants are worn so low that if I were to walk two feet, they would fall down because of my tummy! QUESTION FOR EVERYONE When you are on disability, does it go on forever or is there a time when it quits and you change over to just plain Social Security? Can you work and still draw disability? Also, Jack wanted me to ask you, if something happened to him, would I then get his SS and lose my disability? I tried to find answers on-line but couldn't. Thank you all.. Jeanne and Jack in Dayton where Jack is out pheasant hunting... Pheasants??? Not to worry...
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Many gain abdominal girth while on cortisone/prednisone, or soon after. The bloat is secondary to the cortisone which causes increases in the lipoid cells. This results in weight gain, increase in blood pressure, borderline diabetes, and hyperlipidemia ( increased cholesterol or triglycerides). This group has been named the Metabolic Syndrome. I was attacked by this beast several years ago, but decided to go on vacation to mexico, the change in diet, increased activity made my diabetes, hypertension, weight and lipids go down. My suggestion: When given a new diagnosis, go on VACATION !!! F
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Jeanne, When I went on SS Disability, I got my full benefits and then the next year Medicare kicked in...The month before I was hit wih tm...,my disability was for another health problem.so when I reached 65, nothing changed. I would assume that's true for all.if it isn't, someone will speak up and tell it like they see it! As to whether you would get your hubby's SS, I would assume that would follow same rules for all folks, you get whichever is higher. There again, I'm no authority!! I think you can work and still receive SS, but there are limits. This question would have been answered correctly and quickly had we not lost our SS genius a few tears back! Doc could talk SS backwards and forwards, and helped many of our members get their SS Disability. He is missed!!! janh --- On Fri, 12/5/08, jrushton [EMAIL PROTECTED] wrote: In response to: Also, a question about Disability I have to laugh at all of the clothes and styles, now, Todd. The pants are worn so low that if I were to walk two feet, they would fall down because of my tummy! QUESTION FOR EVERYONE When you are on disability, does it go on forever or is there a time when it quits and you change over to just plain Social Security? Can you work and still draw disability? Also, Jack wanted me to ask you, if something happened to him, would I then get his SS and lose my disability? I tried to find answers on-line but couldn't. Thank you all.. Jeanne and Jack in Dayton where Jack is out pheasant hunting... Pheasants??? Not to worry...
Re: [TMIC] Re: tmic-digest Digest V2008 #478
In response to: Jeanne, When I went on SS Disability, I got my full benefits and then the next year Medicare kicked in...The month before I was hit wih tm...,my disability was for another health problem.so when I reached 65, nothing changed. I would assume that's true for all.if it isn't, someone will speak up and tell it like they see it! As to whether you would get your hubby's SS, I would assume that would follow same rules for all folks, you get whichever is higher. There again, I'm no authority!! I think you can work and still receive SS, but there are limits. This question would have been answered correctly and quickly had we not lost our SS genius a few tears back! Doc could talk SS backwards and forwards, and helped many of our members get their SS Disability. He is missed!!! janh I'm sorry I missed Doc. Some people have such a hard time getting the disability even started, don't they?? I really tried to find and understand what it says on-line but couldn't find anything close to what I needed. I know you can do into their office and talk to someone but that's not always a good idea, I'm thinking, because sometimes that puts a hick-up by your name! j
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Doc's info. about SS is here: _http://www.myelitis.org/tmic/resources/ssd-tm.htm_ (http://www.myelitis.org/tmic/resources/ssd-tm.htm) Barbara H. In a message dated 12/5/2008 7:04:48 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: In response to: Jeanne, When I went on SS Disability, I got my full benefits and then the next year Medicare kicked in...The month before I was hit wih tm...,my disability was for another health problem.so when I reached 65, nothing changed. I would assume that's true for all.if it isn't, someone will speak up and tell it like they see it! As to whether you would get your hubby's SS, I would assume that would follow same rules for all folks, you get whichever is higher. There again, I'm no authority!! I think you can work and still receive SS, but there are limits. This question would have been answered correctly and quickly had we not lost our SS genius a few tears back! Doc could talk SS backwards and forwards, and helped many of our members get their SS Disability. He is missed!!! janh I'm sorry I missed Doc. Some people have such a hard time getting the disability even started, don't they?? I really tried to find and understand what it says on-line but couldn't find anything close to what I needed. I know you can do into their office and talk to someone but that's not always a good idea, I'm thinking, because sometimes that puts a hick-up by your name! j **Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0010)
Re: [TMIC] Re: tmic-digest Digest V2008 #478
But honey I know you do it and do it over and over again!!! You are so amazing as are so many on this list!!! Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: jrushton [EMAIL PROTECTED]; TMIC tmic-list@eskimo.com Sent: Thursday, December 4, 2008 11:02:21 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 Hear ya!!! the fatigue is hard to deal with working full time and hard to explain to others somedays it hurts just to get out of bed but we do... then to go and work out! please workout anymore is just getting off the couch and being able to balance with my walker without falling on my face.. -- Original message from jrushton [EMAIL PROTECTED]: -- In response to: Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, Kim, it's not like we can go out and run around the block or through the woods, right??? Heck, we can't even tell if we're holding our tummy in or not! We could try some of that stuff that Oprah is advertising so much now (Acai?) except I saw a picture of it in a bowl and it looks like a bowl of purple intestines!! Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #478
I know I just keep gaining...it is freaking me out!!! Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: jrushton [EMAIL PROTECTED]; Kenneth Oliver [EMAIL PROTECTED]; TMIC tmic-list@eskimo.com Sent: Thursday, December 4, 2008 10:19:15 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, -- Original message from jrushton [EMAIL PROTECTED]: -- In response to: I spent nine weeks in the hospital from Jan. to April in 1981. I haven't heard anyone talking about a swollen belly. I was 235 with 42 waist when I got this. When in the hospital I swelled so when discharged I was 205 with 60 inch waist. It stayed like that for many weeks, and when it finally went down any nervous excitement would make it blow up, this went on for over 20 yrs. When it blew up the band of pain was sometimes nearly unbearable. Ken in N.M. Ken, to this day I still have a poofy tummy that I did not have before TM and sometimes it is worse than others. Each doctor I mentioned it to just shrugged their shoulders so I didn't give it any more thought. I'm glad you mentioned it...Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #478
oh F, I so totally agree! Linda - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: jrushtonmailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; TMICmailto:tmic-list@eskimo.com Sent: Friday, December 05, 2008 2:27 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 Talking about looking pregnant and I'm a male. My belly bloated up so bad, that people said I looked like I was pregnant with twins. Many gain abdominal girth while on cortisone/prednisone, or soon after. The bloat is secondary to the cortisone which causes increases in the lipoid cells. This results in weight gain, increase in blood pressure, borderline diabetes, and hyperlipidemia ( increased cholesterol or triglycerides). This group has been named the Metabolic Syndrome. I was attacked by this beast several years ago, but decided to go on vacation to mexico, the change in diet, increased activity made my diabetes, hypertension, weight and lipids go down. My suggestion: When given a new diagnosis, go on VACATION !!! F
Re: [TMIC] Re: tmic-digest Digest V2008 #478
That band is called L'Hermitte's and one of my doctors told me it's where the break in nerves were..that it essentially was the nerve endings trying to find a connection... I think that is an over-simplified explanation so I'd comprehendI had it so bad that at times I thought I wouldn't be able to breathe..I thought it might be the bra- God getting even with me for hating bras!! It finally 'went away' but returns when I've overdone or have let myself get too tired. It no longer is as strong as in the beginning so just know that time will help! My 2¢ janh in OK --- On Thu, 12/4/08, jrushton [EMAIL PROTECTED] wrote: In response to: Jeanne, when I was the hospital I had a band around my waist like a steel band. After some time out of the hospital and for many years it has been a band of pain. No medication relieved it. It was especially bad when i laid on my back. Ken in N.M. It is pretty horrible, isn't it, Ken? This is the first real relief I've gotten from it since the onset. Just don't give up...we can't...j
Re: [TMIC] Re: tmic-digest Digest V2008 #478
*You're absolutely right Mindy. Lhermitte's is the shocklike or buzzing feeling that occurs whenever the head is lowered, and the squeezing symptom around the ribcage or other areas is called *banding, or girdling*. In the case of MS, it's referred to as the MS Hug. * *Gracie*
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Oh my gosh! same here I feel like the "Stay Puff Marshmellow Gal"! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, -- Original message from "jrushton" [EMAIL PROTECTED]: -- In response to: I spent nine weeks in the hospital from Jan. to April in 1981. I haven't heard anyonetalking about a swollen belly. I was 235 with 42 waist when I got this. When inthe hospital I swelled so when discharged I was 205 with 60 inch waist. It stayed like thatfor many weeks, and when it finally went down any nervous excitement would make it blow up,this went on for over 20 yrs. When it blew up the band of pain was sometimes nearlyunbearable.Ken in N.M. Ken, to this day I still have a poofy tummy that I did not have before TM and sometimes it is worse than others. Each doctor I mentioned it to just shrugged their shoulders so I didn't give it any more thought. I'm glad you mentioned it...Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #478
In response to: Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, Kim, it's not like we can go out and run around the block or through the woods, right??? Heck, we can't even tell if we're holding our tummy in or not! We could try some of that stuff that Oprah is advertising so much now (Acai?) except I saw a picture of it in a bowl and it looks like a bowl of purple intestines!! Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #478
Hear ya!!! the fatigue is hard to deal with working full time and hard to explain to others somedays it hurts just to get out of bed but we do... then to go and work out! please workout anymore is just getting off the couch and being able to balance with my walker without falling on my face.. -- Original message from "jrushton" [EMAIL PROTECTED]: -- In response to: Oh my gosh! same here I feel like the "Stay Puff Marshmellow Gal"! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, Kim, it's not like we can go out and run around the block or through the woods, right??? Heck, we can't even tell if we're holding our tummy in or not! We could try some of that stuff that Oprah is advertising so much now (Acai?) except I saw a picture of it in a bowl and it looks like a bowl of purple intestines!! Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #478
I gained a beer belly at the onset and have kept it ever since. Who duh thunk it??? Jude In a message dated 12/4/2008 10:19:37 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, -- Original message from jrushton [EMAIL PROTECTED]: -- In response to: I spent nine weeks in the hospital from Jan. to April in 1981. I haven't heard anyone talking about a swollen belly. I was 235 with 42 waist when I got this. When in the hospital I swelled so when discharged I was 205 with 60 inch waist. It stayed like that for many weeks, and when it finally went down any nervous excitement would make it blow up, this went on for over 20 yrs. When it blew up the band of pain was sometimes nearly unbearable. Ken in N.M. Ken, to this day I still have a poofy tummy that I did not have before TM and sometimes it is worse than others. Each doctor I mentioned it to just shrugged their shoulders so I didn't give it any more thought. I'm glad you mentioned it...Jeanne **Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0010)
Re: [TMIC] Re: tmic-digest Digest V2008 #478
In response to: To this day I have a poofy tummy and have never once contributed it to the disease. I thought I had just gained weight over the years. Isn't that strange? Jude Well, I know that it is very normal that as we grow older and as soon as I started 'the change' it was harder and harder to keep the weight off but then I was able to do all sorts of things to help. But when TM hit and I came home from ICU/PT/Rehab, I thought I had become pregnant somewhere in those three weeks...6 months worth!!! At 58 years old no less ! Amazing! jEmoticon1.gif
Re: [TMIC] Re: tmic-digest Digest V2008 #478
AOL EmailHi Jude, It's so good to see you posting. I'm hoping that means you're feeling at least a little better? You know you are always in my prayers, dear Jude. Linda - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Thursday, December 04, 2008 9:27 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #478 I gained a beer belly at the onset and have kept it ever since. Who duh thunk it??? Jude In a message dated 12/4/2008 10:19:37 P.M. Eastern Standard Time, [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] writes: Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained 90 lbs when I got sick 4 years ago and have yet to lose any of it, -- Original message from jrushton [EMAIL PROTECTED]mailto:[EMAIL PROTECTED]: -- In response to: I spent nine weeks in the hospital from Jan. to April in 1981. I haven't heard anyone talking about a swollen belly. I was 235 with 42 waist when I got this. When in the hospital I swelled so when discharged I was 205 with 60 inch waist. It stayed like that for many weeks, and when it finally went down any nervous excitement would make it blow up, this went on for over 20 yrs. When it blew up the band of pain was sometimes nearly unbearable. Ken in N.M. Ken, to this day I still have a poofy tummy that I did not have before TM and sometimes it is worse than others. Each doctor I mentioned it to just shrugged their shoulders so I didn't give it any more thought. I'm glad you mentioned it...Jeanne -- Make your life easier with all your friends, email, and favorite sites in one place. Try it nowhttp://www.aol.com/?optin=new-dpicid=aolcom40vanityncid=emlcntaolcom0010.
Re: [TMIC] Re: tmic-digest Digest V2008 #478
In response to: I have taken Tramadol since day one, but not along with the other drugs you mention. The Tramadol has never, to my notice, done anything for me, but I have not seen a neuro' for years. Maybe I ought to make an appointment one day to see what new drugs might do to help my banding. It is so tight that much of the time I cannot eat...like tonight. Maybe if I wasn't taking it with the others it wouldn't work so well for me either, Jude. I always worry so about taking too much and that's not good either. I found the band hurting so bad I couldn't think of anything else and add to that the pain from there on down, it just doesn't do much for our quality of life, does it?? j
