RE: [TMIC]
Janice...great question! I am not sure of the answersex has gone downhill...but our relationship has actually mellowed...I will be married 39 years in October...since TM hit me nearly 12 years ago I have watched my daughter get married and give me and my wife to fantastic grandchildren.this has improved the happiness in both our lives...retirement is only a few years away so the stress of work will soon be gone...thinking about the question I believe my relationship as a whole since TM has been about the same. I am still very independent..I work, drive walk unassistedthat being said if my condition was worse and I had to rely on my wife as a caregiver ...only God knows what the answer would be...personnally I think she would be there for me. Rob in New Jersey From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, June 11, 2009 11:39 PM To: transverse myelitis Subject: [TMIC] It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
RE: [TMIC]
JANICE: I CAME DOWN WITH TM LAST JUNE, SO I DON'T HAVE THE EXPERIENCE A LOT OF YOU DO. I HAVE FOUND THAT I AM ALWAYS COLD. LAST SUMMER WHEN WE HAD A HEAT WAVE AND HAD THE AIR ON, EVEN THOUGH WE DIDN'T KEEP THE HOUSE VERY COLD, I ALWAYS HAD TO HAVE A SWEATER ON. THE HEAT DIDN'T SEEM TO BOTHER ME AS IT HAD IN THE PAST. I AM STILL ALWAYS COLD. AS FAR AS BANDING IS CONCERNED, IT IS MY FEET THAT SEEM TO BOTHER ME THE MOST. I HAVE A REAL TIGHT PULLING FEELING IN MY ANKLES AND IN THE ARCHES OF MY FEET. IT FEELS AS THOUGH I HAVE TIGHT STIRUPS ON MY FEET. I ASSUME THAT IS BANDING. THIS IS A MEAN DISEASE, BUT I FEEL THAT I HAVE BEEN VERY LUCKY I DON'T HAVE THE PAIN THAT SO MANY OF US HAVE. I DO GET SHARP STABBING PAINS IN MY LEGS AND RIGHT BUTTOCK AT TIMES, BUT SO FAR NOTHING I CAN'T HANDLE. TAKE CARE AND BLESSINGS ON ALL OF US --- TIAD PATTI - WISCONSIN From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, June 11, 2009 8:41 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time?
Re: RE: [TMIC]
Hello all! 1. I seem to always "overheat". My first thought was menopause was hitting. I never even thought it might be TM related! I call them solar flares. I have also found that I don't tolerate the heat as well as I used to. Sitting in the hot sun used to be enjoyable, but now I find it hard to tolerate and that type of heat makes me feel weak. Even a hot shower or a hot tub that is extremely warm will drain any energy I had. The cold does not seem to affect me. 2. My banding is when I run (or attempt to run). Like when I need to catch the bus or something. To me it feels like someone has wrapped a large and thick elastic band around my torso and is pulling both ends tight. I am guessing that everyone may feel it differently. For me the banding has decreased quite a bit. It does seem that someone who has TM has varying degrees of these symptoms for the most part. Everyone is different though. Have a great day! MargaretFrom: Janice [mailto:jan...@centurytel.net] Sent: Thursday, June 11, 2009 8:41 PMTo: transverse myelitisSubject: [TMIC] This is Janice,I have 2 questions:1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know someof you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot insteadof cold? I really have a problem with heat - especially with humidity. I get hot, then weak. Not good.2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place foreveryone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC]
Cheryl, I was a complete to the t8, paralyzed from breast down. I've since regained use of legsthe only thing I was told that wouldn't return was my temp control and by golly, that doc was right. Thus, when I go out in summer heat I sweat! only from breast up..I can't stay out in heat like I could before tm, heat stroke is possible. Ain't life grand!??! But, hey, you do what you can and let the rest go!! !!!TIAD !! janh Stillwater, OK --- On Fri, 6/12/09, rn11...@yahoo.com rn11...@yahoo.com wrote: Hi, #1 Any extreme heat or cold affects me adversely.Plus,I only perspire on the right side of my face.This is since tm,but my lesion was T4-T5,so my neuro has no explanation for it. #2 My tight band is around my mid trunk area.It is there all the time.When I overdo anything it gets much tighter and very uncomfortable. Cheryl tm onset 8/13/95 -
[TMIC] Janice's questions
Janice.. In answer to your questions. 1. Since Tm I have always had a problem in the heat. Humidity included makes it very bad for me. I start getting a very weird feeling almost becoming very limp and weak and if I cannot control my limbs. The only way I can explain it to non-tm people is I get a floating feeling and when it happens I have to find a place to cool down. I use towel wrapped ice packs on my wrists, back of my neck, forehead and the back of my knees. Once cooled it seems the energy has been sucked right out of me. I like very warm showers (which give me the same effect) so I have been taking my showers right before bed. Works better than any sleeping pill ever made. LOL 2. I get banding in 2 spots. The first is around the bottom are of my chest. Right where the bottom of my bra sits. It is about 3 inches wide and goes right around my trunk. At times removing my bra help but other times it seems to want to stop me from breathing. Nothing but resting or sleeping helps this. The other banding I get is around my neck area. It seems to be right where the top band of a tee shirt is. I sometime feel like I am chocking. When I have it you will see me pulling at the neck of any top even if they are not even close to my neck. I have stretched out all my tops this way plus being a big Turtle neck fan in winter has stopped except on good days. 3. As for my marriage it is very good in allot of ways since my husband knew about my TM before we married. June 7th of this year was our 10th anniversary. Our sex life has steady gone downhill but we love each other and he is very understanding of my TM. At times we both get frustrated with it when I can't go to a wedding or family get together, when I can't clean or cook, or when I can't stand to be touch by even a sheet or clothes. Lyrica has helped with allot of this but right now nothing is helping. I am more angry, frustrated and sad that I can't do more while he remains patient and loving.
RE: [TMIC] Feet
IT FEELS AS THOUGH I HAVE TIGHT STIRUPS ON MY FEET. I usually tell people that my feet feel like there is 100 rubber bands times a 100. As I continue to do my PT, the rubber bands are popping every day. lol Now it's more like 100 x 50 rubber bands, so maybe half better. May all of US have LESS pain today, Todd in CC, TX --- On Fri, 6/12/09, Patricia Cooley patticoo...@wi.rr.com wrote: From: Patricia Cooley patticoo...@wi.rr.com Subject: RE: [TMIC] To: 'Janice' jan...@centurytel.net, 'transverse myelitis' tmic-list@eskimo.com Date: Friday, June 12, 2009, 8:51 AM JANICE: I CAME DOWN WITH TM LAST JUNE, SO I DON’T HAVE THE EXPERIENCE A LOT OF YOU DO. I HAVE FOUND THAT I AM ALWAYS COLD. LAST SUMMER WHEN WE HAD A HEAT WAVE AND HAD THE AIR ON, EVEN THOUGH WE DIDN’T KEEP THE HOUSE VERY COLD, I ALWAYS HAD TO HAVE A SWEATER ON. THE HEAT DIDN’T SEEM TO BOTHER ME AS IT HAD IN THE PAST. I AM STILL ALWAYS COLD. AS FAR AS BANDING IS CONCERNED, IT IS MY FEET THAT SEEM TO BOTHER ME THE MOST. I HAVE A REAL TIGHT PULLING FEELING IN MY ANKLES AND IN THE ARCHES OF MY FEET. IT FEELS AS THOUGH I HAVE TIGHT STIRUPS ON MY FEET. I ASSUME THAT IS BANDING. THIS IS A MEAN DISEASE, BUT I FEEL THAT I HAVE BEEN VERY LUCKY I DON’T HAVE THE PAIN THAT SO MANY OF US HAVE. I DO GET SHARP STABBING PAINS IN MY LEGS AND RIGHT BUTTOCK AT TIMES, BUT SO FAR NOTHING I CAN’T HANDLE. TAKE CARE AND BLESSINGS ON ALL OF US --- TIAD PATTI - WISCONSIN From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, June 11, 2009 8:41 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold? I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC] Relationships
TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC]
Oh Naomi, My hearts hurts so bad for both of us. The physical rejection is more than anyone can bare!! I married my husband loving him with all my heart .. a second marriage for both of us. Since we were not children there was no sense in waiting till we got married. We were very happy in everyway .. we have 3 children between us, none together. Twenty years ago on our wedding day ... the marriage died. I will pray for you and all that are suffering this horrific loss. Catherine From: ladyno...@aol.com ladyno...@aol.com To: jan...@centurytel.net; tmic-list@eskimo.com Sent: Friday, June 12, 2009 4:18:07 PM Subject: Re: [TMIC] Janice, My marriage has really deteriorated since my TM. My husband and I have been together for 25 years, and our lives were just perfect, before TM. We had just built a new home, our children are adults and taking care of their families, I took an early retirement from my job, but was back working there as a contractor making twice as much money, my husband had just got a promotion to a management position, on his job. Our physical relationship was the best it had ever been. It was banging (if I may use that expression) Things were great! Then TM struck! Initially, my husband was by my side every second of the day. He was off work the first two months, because I was, initially, in intensive care.Because I was totally paralyzed, he felt he had to be there all the time. After being in rehab, nursing homes, and hospitals, it was a year and two weeks, before I returned home again. Because I did not have an aide, and did not know how to go about getting one (not to mention we could not afford one), he took off work again, to care for me. My mom came to live with us to help out. She's nearly 80 years old. She can prepare meals and call 911 if needed. I keep my phone on at all times, in case I need to call 911 for her. Otherwise, he makes sure we both have our medicines, buys grocery for the house, pays the bills, and keep the house running. As for us, there's not much there. We're not intimate at all! He has no desire for me in that capacity. He assures me he loves me and he'll take care of me until the day he dies, but I guess there will be no affection shown until then. He may kiss me on the forehead, but that's it. He really does not like performing the duties of an aide and he reminds me of that every time he has to put me to bed. We did get an aide to come in the mornings and get me up, but we cannot afford one to come in the evenings also. I am looking into going into an assisted living or group home. Our home does not have an assessable bathroom for me. All of our bathrooms are upstairs and there is no room on the first floor, to put a bathroom. As much as I love this house, it just doesn't make any sense for me to stay here. My husband will not be going to the assisted living facility with me. We now live at least an hour away from our friends and family. When I move into a facility, it will be closer to friends and family. Hopefully, that will enabled me to get out more often. Right now I am at home daily just me and my mom. I have a wheelchair van, but my mom is unable to drive it. I don't even feel comfortable going down the ramp with her, so I'm stuck in the house all day, every day. On the weekend, my husband wants to play golf. If I say I want to go somewhere or do something else, he will go or do it, but I will know he doesn't want to. He feels he doesn't get to do what he wants to do. Which is not true, because he plays golf all the time. It just makes for a bad situation. I think it's gotten to the point where he resents me. He would never say that. His actions sure shows that. Which is too bad, because I love him with all my heart. He has been there for me when the rest of my family has failed me. I pray for us constantly. I ask you all to do the same. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Shop Dell's full line of Laptops now starting at $349!
[TMIC]
I have had tm since 1981. In the hospital itt felt like a steel band around my waist. After leaving the hospital it became a band of pain, this lasted for 25 yrs then became intermintent. It always returns if I try to lay on my stomach. Tm completely changed both my life, but also my wife who was my care given for 27yrs, we became very close in spite of lack of intermmacy. I could not bear to be touched from my shoulders down. I was C7. My wife died last June and was so concerned for me that she requested my son to take me home, she was dying and did not want me to see her. Both hot and cold bother me, my feet feel like they in hot water even in hot weather. They are usually cold to the touch. I only sweat from arm pits up. Ken _ Windows Live™: Keep your life in sync. http://windowslive.com/explore?ocid=TXT_TAGLM_WL_BR_life_in_synch_062009
Re: [TMIC] Relationships
Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
RE: [TMIC]
Hi TM @ T4-5 I have the banding, at the bra line, 3-4 thick and on the right side of my torso. I sometimes get the banding in my legs, and like others, my feet, especially the right one have an elastic around them. Lyrica, 150 mg 3x a day has helped with the banding. Over exertion, stress and fatigue will bring it back with a vengeance. My legs do not like the cold, and are usually always cold. We don't really get hot up here, except for maybe 2 days a year (lol) so the heat thing is hard to say. I don't do well with a hot bath. Fatigue is huge, most of the time, and the pain is a killer. If it is not the banding, it is the ache in my legs. Luckily when it gets too bad, my DR lets me go to emergency for a shot of Demerol. Then I sleep for the day, and am good to go again for a month or two. I find that I sweat easily, and am hot in the upper body. Not bad - being hot and 46! Lol Janet From: Janice [mailto:jan...@centurytel.net] Sent: June 11, 2009 6:41 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC]
Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from "bradebi" brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot... Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good. 2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for everyone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC]
Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from bradebi brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts .my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot .. Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time? Spiral_notebook.jpg
Re: [TMIC]
No it does not but anoying as heck... only seems to happen at night, banding is worse at night and feet burning. -- Original message from "bradebi" brad...@gmail.com: -- Does you sweat burn your skin?...it drives me crazy Debi ---Original Message--- From: kimr1...@bellsouth.net Date: 6/12/2009 7:32:22 PM To: bradebi; transverse myelitis; Janice Subject: Re: [TMIC] I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist. Kim -- Original message from "bradebi" brad...@gmail.com: -- Hi Janice I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight. In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot... Debi TM spastic paraplegic T4 incomplete South Lake Tahoe Ca. From: Janice Date: 6/11/2009 6:41:35 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good. 2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for everyone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC] Relationships
My relationships, most friends disappeared. For me, too and the few that stepped up flew in from far far away and couldn't stay. One saved my life. But so so so sad that she could fly across country to help and my family, in the same state, didn't. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin I agree. I think I will knock the teeth out of mouth of the next person who tells me about advocating for myself. No one else has done it. No one is here to do it. I blogged about my latest hellish experience. I was invited to perform this evening and went through so much to prepare: change eating schedule so my body will be ready, have the aide who i only have once a week to shop, instead find makeup, tweezers, clothes ( meaning she couldn't do other things i needed), find someone to bring the drummer to me because there was no way for me to get to him, mediate annoyances, rehearse, create a new work, exercise, find transport--- which was going to cost $75 come from the other city , get me, bring me home. And on Tuesday I was told there was no ramp on the building--- the Community Arts Center-- so I couldn't perform. The physical l therapist told me she is closing my case out as there is nothing she can do for me. What she proposed was that i spend a couple hundred dollars to get my (unused) motorized wheelchair adjusted so that i might possibly be able to transfer to it without help. I said i couldn't gamble away money... if had some assurance or preview or trial then i would do it. What about standing, leg manipulation, etc? No answer. Case closed. Akua (furious) --
