RE: [TMIC] cancer vs tm
Interesting so many of you have sleep problems. I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things - I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must hunt-and peck two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can't hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there - I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I'm doing - such as answering my emails, playing games on the computer, or researching my genealogy - that I forget about the pain for a bit. Sleep helps to restore the body - I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. Betty (in Northern California) _ From: Linda Cherpeski [mailto:cherp...@msn.com] Sent: Wednesday, May 09, 2012 6:51 AM To: rn11974; TM List Subject: RE: [TMIC] cancer vs tm Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda _ Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car.But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim On Wed, May 9, 2012 at 10:41 AM, Elizabeth Clark xbeecla...@gmail.comwrote: ** Interesting so many of you have sleep problems… I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. ** ** The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. *** * ** ** It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. ** ** Pain can age a body way beyond its years in no time. TM has already robbed me of many things – I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must “hunt-and peck” two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can’t hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there – I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I’m doing – such as answering my emails, playing games on the computer, or researching my genealogy – that I “forget” about the pain for a bit. ** ** Sleep helps to restore the body – I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. ** ** Betty (in **Northern California**) ** ** -- *From:* Linda Cherpeski [mailto:cherp...@msn.com] *Sent:* Wednesday, May 09, 2012 6:51 AM *To:* rn11974; TM List *Subject:* RE: [TMIC] cancer vs tm ** ** Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda -- Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation
Re: [TMIC] cancer vs tm
Betty, I agree with you 100%.That is why I have been pushing the use of pain management doctors.They know what they are doing and understand pain. They have helped me quite a bit. Janice From: Elizabeth Clark Sent: Wednesday, May 09, 2012 3:41 PM To: 'TM List' Subject: RE: [TMIC] cancer vs tm Interesting so many of you have sleep problems… I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things – I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must “hunt-and peck” two-fingered on the keyboard, when my fingers used to fly upon the keys; my artistic passion has been taken away as I can’t hold a decorating bag and squeeze to create the beautiful cakes I used to decorate for family, friends and co-workers; and because of all this, some degree of happiness has been stolen by TM. I see no reason to compound this situation by trying to function through severe pain. There is always now some level of pain there – I am always conscious of it. But with the help of the medicines I take, I can sometimes be distracted enough in what I’m doing – such as answering my emails, playing games on the computer, or researching my genealogy – that I “forget” about the pain for a bit. Sleep helps to restore the body – I hope all of you find whatever works for you that eases your pain and allows you to attain that sleep. Betty (in Northern California) From: Linda Cherpeski [mailto:cherp...@msn.com] Sent: Wednesday, May 09, 2012 6:51 AM To: rn11974; TM List Subject: RE: [TMIC] cancer vs tm Hi Cheryl ~ I've been thinking about you and so glad you posted. Great news on the cancer! Speaking for myself here, I have to agree with you. The cancer is under control and the TM pain just goes on and on. This may not be true for all, but from the posts it is certainly true for many of us. My pain is usually 24/7 and sleep is - well I almost don't remember anymore what it is. And you're so funny, yes I think your cancer group would think you're crazy! I hope for you and all of us the pain will let up and we will once again know what Sleep is! Linda Date: Sat, 5 May 2012 13:49:21 -0700 From: rn11...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
RE: [TMIC] cancer vs tm
Hi Jim, I'm Betty Elizabeth - it's not that I have arthritis-like pain in my hands. after TM struck me (at C7), in addition to leaving me with a weak left leg and drop foot, no temperature sensation from the chest down and banding of the torso, it also affected the tendons in my arms. I've had two surgeries on my right arm/wrist (my dominant side, of course) to re-route lesser tendons to do the job of the damaged main ones. This took two years and many arm, hand and finger splints as well as much occupational therapy. After TM struck (at C7), all four fingers on my right hand dropped at the knuckle. With my palm facing down, I couldn't lift them up on my own. Since the surgeries, I can now lift them, however, I can't bend the fingers completely around at the last finger joint - especially the middle finger! Essentially, I can't make a complete fist with that hand. I can't even wrap my fingers completely around the steering wheel when I drive. I kind of grip it between my palm and thumb. As for my left hand, it has a claw-like appearance, with the index finger constantly pulling down. I can, luckily, make a fist with that hand. The overall look, however, is that I'm always giving folks the bird - with both hands!! Because of this, I can't place my fingers on a keyboard and strike each key with the correct fingertip. I don't have the motor control for that action. It likewise makes it somewhat difficult to grip a knife to cut food or even handle a fork or spoon properly. Fortunately my family and friends forgive my awkward movements when attempting to feed myself in public. While I really miss being able to do certain things with my hands, I'm grateful for the function I do have. Considering the alternative. I figure I'm doing good as long as I'm on the up-side of the grass! _ From: James Berg [mailto:molokai...@gmail.com] Sent: Wednesday, May 09, 2012 3:26 PM To: Elizabeth Clark Cc: TM List Subject: Re: [TMIC] cancer vs tm Hands or legs? Not sure if I am writing to Betty or Elizabeth?- anyway your are able to walk, not perfectly, but she can get around. Yet she has hand coordination problems that take away from her the things she loved to do. My legs don't work at all so I can't go anywhere with out my wheel chair and then only on smooth concrete or grass. No golf, or the construction work I used to do or even driving a car. But I do have my hands and I have learned to do things with my hands that I might never have attempted to do if I didn't have TM. So after reading Elizabeths story I began thinking about which I would rather have, legs or hands. I think hands wins. So I don't feel so bad. I hope you can find some drug or assistance that will allow you better use of your hands. The Tommy Copper gloves have proven to work really well with arthritis--check the web sight-Montel Williams who has MS swears by the products. The glove material has copper woven through it. For the hell of it I ordered a body shirt to see if it would help with my banding, something that bothers me all the time. Jim On Wed, May 9, 2012 at 10:41 AM, Elizabeth Clark xbeecla...@gmail.com wrote: Interesting so many of you have sleep problems. I have had almost no trouble falling asleep or staying asleep since coming home from the hospital and one month in a rehab facility six years ago. Two months before I was stricken with TM, my husband and I purchased a Sleep Number bed and I found I was able to set it so soft it enveloped and supported my hyper-sensitive body perfectly. The only problem I encountered in the beginning was only taking three doses (at eight-hour intervals) of pain and nerve medication a day. My last dose for the day was typically after dinner, so by the time I woke up in the morning (nearly 8-10 hours later), I was so crippled with pain I could barely get out of bed, walk to the bathroom and get downstairs to eat and take my first dose for the day. After discussing it with my doctor, she agreed I could instead take four doses at six-hour intervals, which kept a steadier amount of medication in my system. Unless I over-exert myself on any given day, for which I am more than ready for my med dose when the time comes, I now otherwise function pretty well at the six-hour intervals. It seems many of you try to go as long as possible before taking any kind of pain medication, whether out of fear of addiction or whatever, but I feel this is an incurable situation involving chronic, severe pain and I, for one, cannot see myself going through the rest of my life in severe pain. Pain can age a body way beyond its years in no time. TM has already robbed me of many things - I can no longer run or skip, let alone wear cute fancy shoes or sandals; my hands have been crippled to the point of making it not a pretty sight to watch me try to cut my food and feed myself; I now must hunt-and peck two-fingered on the keyboard, when my fingers used to fly
Re: [TMIC] cancer vs tm
Hi Cheryl, Hold onto that indomitable spirit that you have inside you, Cheryl. It's got a hold on you stronger than any drug. Believe it... -- respectfully, *Glendon - (a.k.a Goat Dodders) * *...Living with Transverse-Myelitis **since 2007,* *in Brisbane, **Queensland, **Australia... * *email; goatdodd...@gmail.com* *web-blog; bloodywishfulthinking.blogspot.com * *twitter; @GoatDodders https://www.twitter.com/@GoatDodders*
[TMIC] cancer vs tm
Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
yes,, there's a bunch of us that know all to well just what you are saying. this day was and is a bull! From: rn11...@yahoo.com rn11...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Saturday, May 5, 2012 4:49 PM Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
no, you are not crazy. I have banding pain always. a few meds that might help... Savella - developed for fibromyalgia Baclofen - muscle relaxer Seratonin do you take any of these? Susan, Phx, AZ On May 5, 2012, at 1:49 PM, rn11...@yahoo.com wrote: Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
i have become use to baclofen,neuronton,atavan,hydrocodone,and a pill for depression. i hurt a lot but if i dont take these pills i am rather suicidal. it is good to find something that helps but you still become accustom to it and have to press on with pain. I suppose thats why it is called pain management.it does not go away,,just manageable. press on my dear nurse friend,,,press on. From: Susan Kleinz skle...@cox.net To: rn11...@yahoo.com rn11...@yahoo.com Cc: tmic tmic-list@eskimo.com Sent: Saturday, May 5, 2012 7:46 PM Subject: Re: [TMIC] cancer vs tm no, you are not crazy. I have banding pain always. a few meds that might help... Savella - developed for fibromyalgia Baclofen - muscle relaxer Seratonin do you take any of these? Susan, Phx, AZ On May 5, 2012, at 1:49 PM, rn11...@yahoo.com wrote: Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
We don't think you're crazy; Make yourself as comfortable as you can, arrange things, and await freedom from this dark and narrow existence and into that illumined, pure existence that endures forever. And wait for us, your friends; we're right behind you!!! Love, Dalton From: rn11...@yahoo.com rn11...@yahoo.com Reply-To: rn11...@yahoo.com rn11...@yahoo.com Date: Saturday, 5 January 2012 4:49 PM To: tmic tmic-list@eskimo.com Subject: [TMIC] cancer vs tm Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 5 May 2012 13:53:44 -0700 Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
Re: [TMIC] cancer vs tm
Cheryl, Congrats on the cancer diagnosis. You are a strong individual and can handle anything life throws at you – you have proven that. I, too, am interested to know if you are on baclofen and neurontin – and what strength you are taking with them.Both of them can be taken in high doses with much relief.You have got to get relief from this kind of pain and the only way it can be done is through doctors.If your neuro isn’t coming through with it, a good Pain Management Doctor can. I have one that has helped me tremendously. Let me know if I can help further.You are too good a person to have to live with that much pain – there is help out there. Janice From: rn11...@yahoo.com Sent: Saturday, May 05, 2012 3:49 PM To: tmic Subject: [TMIC] cancer vs tm Hi, As many of you know I was diagnosed with stage IV breast cancer last year (spread to bones). No surgery,radiation,or chemo.Just an anti hormonal pill daily.Just had a PET/cat scan and it is markedly improved. I possibly can survive for years this way. So,I was thinking. If I could have a choice,what would I choose? I would keep the cancer. I have such terrible burning in my legs,the banding around my trunk is awful,and I'm just so sick of this crap. I hate having no real life anymore;wake up with pain,suffer all day,and go to sleep in pain. Nothing helps. I know that those of you with tm will understand this; I think if I posted this at the breast cancer sites I belong to,they would think I'm crazy. Thanks for listening. Hope you are all doing well. Cheryl
