Re: [TMIC] alive
Jeron, I envy you the luxury of choosing to be alone. like I envied the rich kids who mimicked the way i put together clothes because I was poor. I'm alone and don't want to be, didn't choose to be, TM isolates me. It seems you can walk, I can't. So i suffer beyond insult to injury-- the pain and no way to shop, to go anywhere. Still i pray and persevere. Maybe my municipality will wake and get paratransit for the over 20% of the county that is disabled. Maybe some bright young person will develop the stem cell cure, maybe in the same mysterious way this trail arrived, it will be gone. I hear you and i feel your despair and anger and frustration, because it is living hell. But --- the great old but--- is that the mind and heart persist, breath still comes easily and unaided and there is HOPE. Akua --
[TMIC] Living life on your own terms - accepting TM???
Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another, just as a matter of course of growing older, and what that in itself can do to the body. But, Jeron, I do totally get where you are coming from. And I wish I could go scuba diving today too – especially since there is a heavy snowfall warning in effect for my area. On May Long weekend no less! Janet
Re: [TMIC] alive
Hi Jeron, Thanks for the further insight. Though you don't owe any of us an explanation, this does help us understand more. I have known of people who did push loved ones away and close up within themselves, and that's what I thought you were doing from your first note, thus my response. And I don't see it as a can of worms. For the most part it has been a great discussion, I've enjoyed reading the responses and the way TMers step up to support each other. There is no handbook and no one right way to deal with TM -- that varies with each of us according to how we're affected physically as well as personality type, family support, etc. Personally, I would never have survived without faith in God and His Word to help me each day. But reading all these different responses helps each of us to gain more insight and encouragement in dealing with TM on our own terms. I have to admit that diving and ziplining and such are not things that would appeal to me even without TM :-) But I am glad you're having the opportunity to experience them. And I do understand the need to challenge ourselves. The challenges I choose are different, but if I don't keep some challenges in front of me I would be curled up in a little ball inside my house and never move. In the early days of TM, any excursion or activity beyond just the function of daily living would leave me exhausted and with a flare-up of symptoms the next day. But, as you said, it is worth it, and for me, though it still happens, it is less direct. In fact, sometimes I forget the correlation. I am coming up on my fifteenth anniversary with TM in September. Last weekend I was in charge of our church's annual ladies' luncheon. In the preceding weeks of preparation, I almost always tell myself, I am NEVER doing this again. Am I crazy, or what? But it is a joy to see it all come together. Then this week I was having some major back pain and elimination issues and could not sit still for very long without falling asleep, and I was wondering what in the world was going on. Then I had a Duh! smack myself upside the head moment of realization that all that pressure and stress, even though it was a good kind of stress, was exacting its payback this week, so then I could just relax and go with it and give myself permission to sleep a little more and not hope for a very productive week this week. Anyway -- I wish you all the best. Barbara H. On Fri, May 21, 2010 at 5:23 PM, j ra rumc...@hotmail.com wrote: Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support. I love you guys very muchyou are my family! Jeron -- Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] Living life on your own terms - accepting TM???
Janet, you are right on the money. I, too, used to think is this really happening? Life is not the same, but it is life and I am surrounded with a great family and great friends. I am adjusting to the fact that we will not be doing any more beach vacations.Walking on sand would be too difficult and exhausting. But, we are thinking of other places that we can go. It took 3 years to get to where I could travel and I love it, but I have to be picky about what we do. I hate this more than I can say, but I do still have a life and I still do things - dinner with friends, movies, etc. Pain level is not so bad right now, but there is no warning when the legs will give out on me. Life is truly full of surprises. Love you all, Janice From: Barbara Alma Sent: Saturday, May 22, 2010 2:05 AM To: j.d...@shaw.ca ; tmic-list@eskimo.com Subject: [TMIC] Living life on your own terms - accepting TM??? Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another, just as a matter of course of growing older, and what that in itself can do to the body. But, Jeron, I do totally get where you are coming from. And I wish I could go scuba diving today too – especially since there is a heavy snowfall warning in effect for my area. On May Long weekend no less! Janet
[TMIC] OT - Memorial Day Thoughts...
The proud, the many, the veterans; who seem to be forgotten except for one day of the year. So much given, and taken advantage of by many. Thanks for remembering those alive and those who gave the ultimate gift, their lives. Peace (for all someday I pray) Bernie attachment: BPelow.vcf
Re: [TMIC] alive
Jeron, Good for you. This is a positive message. I think your first message had me concerned for your life, as in suicide. Leaving your wife and loved ones who were concerned for you. I'm so glad that I was wrong. Go for it. Do what YOU need to do to come to terms with TM. Keep us up to date on your adventures. Heather in Calgary - Original Message - From: j ra To: Transverse Myelytis Sent: Friday, May 21, 2010 3:23 PM Subject: RE: [TMIC] alive Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support. I love you guys very muchyou are my family! Jeron -- Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Fw: Re: [TMIC] alive
Cindy sent this post to me, but I think it was to the group too.
--- On Fri, 5/21/10, Cindy McLeroy cindymcle...@socal.rr.com wrote:
From: Cindy McLeroy cindymcle...@socal.rr.com
Subject: Re: [TMIC] alive
To: Todd Tarno toddtm2...@sbcglobal.net
Date: Friday, May 21, 2010, 11:07 PM
Jeron, I'm not going to comment on your first note, but on this one. First,
take a look at the Cody Unser First Step Foundation, http://cufsf.org/. Cody
has had TM since she was 12 and 5 or so years ago she decided to Scuba dive.
I've seen her diving several times. One thing she wants to do is to reach as
many TM'ers or para's and teach them to scuba dive. Like you, she loves
the freedom it gives. I have many friends that have incorporated sky diving
into their lives with TM or being a quad or a para (many with broken ankles).
I have friends that surf, ski, play wheelchair tennis, wheelchair rugby, and
all other sorts of sports. Notice I said I have friends...I'm stricky the
observer.
I wish you the best in your quests and good luck.
Cindy McLeroy
---
Originhttp://cufsf.org/default.asp?CustComKey=392083CategoryKey=392084pn=PageDomName=cufsf.orgal
Message -
From: Todd Tarno
To: TMIC
Sent: Friday, May 21, 2010 3:06 PM
Subject: RE: [TMIC] alive
Hey Jeron,
This is wonderful news. I'm so glad you had a wonderful time in the drift
dive. I have been on a drift in the ocean next to the beach with a friend at
my side and friend drive a car about a fourth of mile to pick both of us up.
It was so COOL.
Next stop, zip-lining in St. Lucia and Sky diving in Martinique
Can't wait to hear about this trip.
You show us that we can do more, if we want too. lol
Have a GREAT time let us know how it went,
Todd in CC, TX
--- On Fri, 5/21/10, j ra rumc...@hotmail.com wrote:
From: j ra rumc...@hotmail.com
Subject: RE: [TMIC] alive
To: Transverse Myelytis tmic-list@eskimo.com
Date: Friday, May 21, 2010, 4:23 PM
#yiv973627060 #yiv1099492574 .hmmessage P {
PADDING-BOTTOM:0px;MARGIN:0px;PADDING-LEFT:0px;PADDING-RIGHT:0px;PADDING-TOP:0px;}
#yiv973627060 #yiv1099492574 .hmmessage {
FONT-FAMILY:Verdana;FONT-SIZE:10pt;}
Hey everybody,
When I started this post, I sure as hell wasn't expecting the can of worms that
I opened up! I got what you all said about me being selfish and trying to go it
alonepushing my wife away and all that. When I came to the Caribbean it was
for two reasons. 1. I needed to learn to deal with this thing of ours called
TM, but away from everyone who knows me. I did this because I wanted to see
myself in the mirror again and not the person that everyone feels sorry for
because I have TM. So I moved here for a litttle while just to get some me
time. I am not pushing my loved ones away, like most of you thought. Truth be
told, my wife fully understands why I wanted to be alone. 2. I am trying to
relive my past. I am trying to push myself to do the things I loved to do even
though I have TM. I know there is no way anyone of my loved ones are approving
of this and are all worried about me going off into the deep blue sea or
jumping out of a plane like I used
to, so it's better if I do it when they can't see me do it and all be worried.
So today was my first dive in years and for the first time since I had TM, I
forgot all about it. My legs didn't hurt, my back was like brand new and it was
amazing. Of course I got a little help from a 6 knot current to do most of the
work under water for me (it's called a drift dive), but it was amazing. I did
it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again.
I'm in all craploads of pain right now, but it was so worth it.
Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in
for some serious pain, but I think I'm slowly remembering the good days. My
goal is to remember those days and replace the bad days. I called my wife and
told her I loved her and she said she was proud of me for taking the step to
regaining some control of my life.
So, now.It feels great to be in painthis time it was worth it.
Thanks everyone for all the emails and all the support. I love you guys very
muchyou are my family!
Jeron
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] Jeron's crisis
Re: [TMIC] Jeron's crisis50 years from now you may be surprised. It has happened to more than one author. Janice From: Dalton Garis Sent: Friday, May 21, 2010 11:03 PM To: Janice Nichols ; Regina Rummel ; tmic-list@eskimo.com Subject: Re: [TMIC] Jeron's crisis Thanks, janice; I would dry up if I couldn't do anything for others, even tell nice stories to children or others. Right now I am writing my second book. It wont make any money but I like the idea of spreading thoughts out there for others to argu about and criticize. Later, Dalton On 22/5/10 6:59 AM, Janice Nichols jan...@centurytel.net wrote: You are right - we can still be useful people.. After all, we have our brains and if our attitude can be kept in line with the brain, we can be very useful. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Friday, May 21, 2010 3:17 PM To: Regina Rummel mailto:regina...@sbcglobal.net ; tmic-list@eskimo.com Subject: Re: [TMIC] Jeron's crisis Yeah! That's what we should be talking about! We gotta support each other and GUIDE each other tp more productivity and adjustment to a life as good as it can be. I was lucky in several ways. (1) I'm not that bad off with the TM and the MS has let me alone for now. For instance, this is the first day I can't walk due to the spasticity attacks and the following deadening fatigue in the legs and arms. And (2) I was paralyzed briefly when I was 22 from an industrial accident and had to do a lot of attitude adjusting back then. So, this, at aged 62, is not so bad, thankfully. And I am still able to be productive. Its possible for us to be useful in some ways, and that adds to our positive spirituality, and that can save us at times. Best, Dalton New York/Abu Dhabi On 22/5/10 12:04 AM, Regina Rummel regina...@sbcglobal.net wrote: Like Jeron, when I realized (about four years ago) that THIS was it, that I was never going to go back to my normal life style, and that I would probably even get worse, I wanted to die. I couldn't stand it. I gave away most of my jewelry to my daughter, piled up give away stuff to the Salvation Army, finalized my will, made funeral arrangements, etc. That's basically what I did, hoping I wouldn't last too much longer. The best I could say about it, is that it kept me busy until an MRI sent me to the hospital again with an AVA. Of course I hoped I'd die for sure during the operation. I didn't. To go back to those early days, like Jeron, I wrote to this TM support group, not knowing too much about how it worked. On the subject line, I wrote Venting. And oh boy! did I ever vent! I will never forget the kindness of all the responses I got. Reading them sort of mobilized my senses, slapped me with a good dose of common sense, and got me going, where? I don't know... But here I am. Like so many of us, I survived. No need to go over the pain, the frustrations, the irritations with doctors who don't know what to do with you, the expensive medications, etc. The bottom line is that if we survived we had to reach a certain level of acceptance. Jeron, from the bottom of my heart, I hope that you will too. You have the support and the understanding of a fabulous support group who care, and are always willing to listen, just like I do. Good luck! Regina
Re: [TMIC] alive
Barb, I do like you do.If I have a few days that I know are going to be busy, I do it anyway knowing that for a couple of days after I will have to sit a lot and will be sleepy for good ole' vicotin.But, you just have to push and do what you want to do even though you know there will be consequences. The hell with TM!! Janice From: Barbara H. Sent: Saturday, May 22, 2010 9:57 AM To: j ra Cc: Transverse Myelytis Subject: Re: [TMIC] alive Hi Jeron, Thanks for the further insight. Though you don't owe any of us an explanation, this does help us understand more. I have known of people who did push loved ones away and close up within themselves, and that's what I thought you were doing from your first note, thus my response. And I don't see it as a can of worms. For the most part it has been a great discussion, I've enjoyed reading the responses and the way TMers step up to support each other. There is no handbook and no one right way to deal with TM -- that varies with each of us according to how we're affected physically as well as personality type, family support, etc. Personally, I would never have survived without faith in God and His Word to help me each day. But reading all these different responses helps each of us to gain more insight and encouragement in dealing with TM on our own terms. I have to admit that diving and ziplining and such are not things that would appeal to me even without TM :-) But I am glad you're having the opportunity to experience them. And I do understand the need to challenge ourselves. The challenges I choose are different, but if I don't keep some challenges in front of me I would be curled up in a little ball inside my house and never move. In the early days of TM, any excursion or activity beyond just the function of daily living would leave me exhausted and with a flare-up of symptoms the next day. But, as you said, it is worth it, and for me, though it still happens, it is less direct. In fact, sometimes I forget the correlation. I am coming up on my fifteenth anniversary with TM in September. Last weekend I was in charge of our church's annual ladies' luncheon. In the preceding weeks of preparation, I almost always tell myself, I am NEVER doing this again. Am I crazy, or what? But it is a joy to see it all come together. Then this week I was having some major back pain and elimination issues and could not sit still for very long without falling asleep, and I was wondering what in the world was going on. Then I had a Duh! smack myself upside the head moment of realization that all that pressure and stress, even though it was a good kind of stress, was exacting its payback this week, so then I could just relax and go with it and give myself permission to sleep a little more and not hope for a very productive week this week. Anyway -- I wish you all the best. Barbara H. On Fri, May 21, 2010 at 5:23 PM, j ra rumc...@hotmail.com wrote: Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support.
RE: [TMIC] alive
well said Janicethe hell with TM! lol live and then live with the consequences From: jan...@centurytel.net To: barbara...@gmail.com; rumc...@hotmail.com CC: tmic-list@eskimo.com Subject: Re: [TMIC] alive Date: Sat, 22 May 2010 14:15:46 -0500 Barb, I do like you do.If I have a few days that I know are going to be busy, I do it anyway knowing that for a couple of days after I will have to sit a lot and will be sleepy for good ole' vicotin.But, you just have to push and do what you want to do even though you know there will be consequences. The hell with TM!! Janice From: Barbara H. Sent: Saturday, May 22, 2010 9:57 AM To: j ra Cc: Transverse Myelytis Subject: Re: [TMIC] alive Hi Jeron, Thanks for the further insight. Though you don't owe any of us an explanation, this does help us understand more. I have known of people who did push loved ones away and close up within themselves, and that's what I thought you were doing from your first note, thus my response. And I don't see it as a can of worms. For the most part it has been a great discussion, I've enjoyed reading the responses and the way TMers step up to support each other. There is no handbook and no one right way to deal with TM -- that varies with each of us according to how we're affected physically as well as personality type, family support, etc. Personally, I would never have survived without faith in God and His Word to help me each day. But reading all these different responses helps each of us to gain more insight and encouragement in dealing with TM on our own terms. I have to admit that diving and ziplining and such are not things that would appeal to me even without TM :-) But I am glad you're having the opportunity to experience them. And I do understand the need to challenge ourselves. The challenges I choose are different, but if I don't keep some challenges in front of me I would be curled up in a little ball inside my house and never move. In the early days of TM, any excursion or activity beyond just the function of daily living would leave me exhausted and with a flare-up of symptoms the next day. But, as you said, it is worth it, and for me, though it still happens, it is less direct. In fact, sometimes I forget the correlation. I am coming up on my fifteenth anniversary with TM in September. Last weekend I was in charge of our church's annual ladies' luncheon. In the preceding weeks of preparation, I almost always tell myself, I am NEVER doing this again. Am I crazy, or what? But it is a joy to see it all come together. Then this week I was having some major back pain and elimination issues and could not sit still for very long without falling asleep, and I was wondering what in the world was going on. Then I had a Duh! smack myself upside the head moment of realization that all that pressure and stress, even though it was a good kind of stress, was exacting its payback this week, so then I could just relax and go with it and give myself permission to sleep a little more and not hope for a very productive week this week. Anyway -- I wish you all the best. Barbara H. On Fri, May 21, 2010 at 5:23 PM, j ra rumc...@hotmail.com wrote: Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is
Re: [TMIC] Living life on your own terms - accepting TM???
For all who love the beach: we have found that there are some beaches that have very large wheelchairs that have huge plastic wheels that go very well on sand. We've seen these in San Diego, Florida and on private islands that the cruise companies have in the Bahamas. It makes it possible to be at the beach at least, they can go into the water also. Picture a Lily Tomlin chair made of PVC pipe, quite fun! I loved it. I have tried in the past walking in dry sand on my crutches and it moves too much for me so I couldn't do it. I've walked with 2 men holding my arms and that's very hard, but once I get on the hard, wet sand I'm in better shape and can do better with help. It only takes a very weak and I mean the weakest kind of wave you can imagine to knock me over unless I get into at least waist high water, but I love it. The caribbean water is the best, nice and warm and clear. It's worth it all to me to be able to experience the beach. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sat, May 22, 2010 8:58 am Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Janet, you are right on the money. I, too, used to think is this really happening? Life is not the same, but it is life and I am surrounded with a great family and great friends. I am adjusting to the fact that we will not be doing any more beach vacations.Walking on sand would be too difficult and exhausting. But, we are thinking of other places that we can go. It took 3 years to get to where I could travel and I love it, but I have to be picky about what we do. I hate this more than I can say, but I do still have a life and I still do things - dinner with friends, movies, etc. Pain level is not so bad right now, but there is no warning when the legs will give out on me. Life is truly full of surprises. Love you all, Janice From: Barbara Alma Sent: Saturday, May 22, 2010 2:05 AM To: j.d...@shaw.ca ; tmic-list@eskimo.com Subject: [TMIC] Living life on your own terms - accepting TM??? Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another, just as a matter of course of growing older, and what that in itself can do to the body. But, Jeron, I do totally get where you are coming from. And I wish I could go scuba diving today too –
Re: [TMIC] Living life on your own terms - accepting TM???
That sounds wonderful. Janice From: Barbara Alma Sent: Saturday, May 22, 2010 10:45 PM To: jan...@centurytel.net ; tmic-l...@eskimo.net Subject: Re: [TMIC] Living life on your own terms - accepting TM??? For all who love the beach: we have found that there are some beaches that have very large wheelchairs that have huge plastic wheels that go very well on sand. We've seen these in San Diego, Florida and on private islands that the cruise companies have in the Bahamas. It makes it possible to be at the beach at least, they can go into the water also. Picture a Lily Tomlin chair made of PVC pipe, quite fun! I loved it. I have tried in the past walking in dry sand on my crutches and it moves too much for me so I couldn't do it. I've walked with 2 men holding my arms and that's very hard, but once I get on the hard, wet sand I'm in better shape and can do better with help. It only takes a very weak and I mean the weakest kind of wave you can imagine to knock me over unless I get into at least waist high water, but I love it. The caribbean water is the best, nice and warm and clear. It's worth it all to me to be able to experience the beach. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sat, May 22, 2010 8:58 am Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Janet, you are right on the money. I, too, used to think is this really happening? Life is not the same, but it is life and I am surrounded with a great family and great friends. I am adjusting to the fact that we will not be doing any more beach vacations.Walking on sand would be too difficult and exhausting. But, we are thinking of other places that we can go. It took 3 years to get to where I could travel and I love it, but I have to be picky about what we do. I hate this more than I can say, but I do still have a life and I still do things - dinner with friends, movies, etc. Pain level is not so bad right now, but there is no warning when the legs will give out on me. Life is truly full of surprises. Love you all, Janice From: Barbara Alma Sent: Saturday, May 22, 2010 2:05 AM To: j.d...@shaw.ca ; tmic-list@eskimo.com Subject: [TMIC] Living life on your own terms - accepting TM??? Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another,
RE: [TMIC] CYBER-thon to benefit TMA on June 8th
damn...this is so cool! It took me 6 months to learn to walk again, so I'm in guys. Jeron Date: Sat, 22 May 2010 18:52:56 -0700 To: tmic-list@eskimo.com From: jlu...@myelitis.org Subject: [TMIC] CYBER-thon to benefit TMA on June 8th I am helping Sally Franz (a TM survivor) with her CYBER-thon which will benefit The Transverse Myelitis Association. This is for real and it’s worth checking out. See what you think… (more details at http://www.ScrambledLeggs.net ) On Tuesday, June 8th award winning humor author, Sally Franz is giving away $200 of FREE cool stuff to everyone with her launch of her Amazon Best Seller humor book (or Kindle), Scrambled Leggs...A Snarky Tale of Hospital Hooey. It’s all a part of a huge Cyber-thon for charity. Also, read to the bottom about a FREE Writers Workshop. But first… A QUICK QUIZ: Say you’re going into a hospital. You need a great doctor, good insurance and what other one thing to make sure you get out alive? Answer: Mr. ‘T’ in scrubs (aka a Patient Advocate Ninja, someone to watch your pills, your personhood and property while you are drifting off to La-la Land). Wait until you see what goes on after Visiting Hours… BOOK SUMMARY: Sally was paralyzed from the waist down and had to learn to walk again. But that was the easy part. Dealing with the hospital staff, that was scary. So she wrote it all down in a hilarious tale of ‘helpers’ who ranged from dangerous to delusional (picture Nurse Ratchet on steroids). Funny, inspirational and a major lampoon on the health care system; you will love this ‘laugh-out loud’ book. Don’t leave home without it. CELEBRITY QUOTES: Comic genius Jonathan Winters says, “Sally Franz is VERY funny.” Dave Barry sends, “Congrats on your (new) book, best of luck.” Mark Victor Hansen, Jayne Meadows (Mrs. Steve Allen), Linda Bloodworth-Thomason (Designing Women) all praise her writing. Doctors, nurses and patients are raving about this book! Find out why. FREE STUFF: Tuesday, June 8th go to http://www.ScrambledLeggs.net , buy “Scrambled Leggs” and 20% goes to charity. And to thank you there will be a super-sized Cyber-Goody-Bag of downloadable FREEBIES with over $200 worth of very cool stuff: 20 humor posters, “Rave Recipes” cookbook, 5 full e-books, tips on humor writing, interviews with top writers and book excerpts. It all comes with the purchase of only 1 book (around $15.00). I know! Go to http://www.ScrambledLeggs.net to check this out. 2IT’S FOR CHARITY: Yup, it’s a Cyber-thon for charity! A full 20% of book proceeds are going to 2 fabulous charities: 10% goes to “The Transverse Myelitis Association” (education and research for rare neuro-immune disorders) and 10 % of book proceeds go to “Operation First Response” (helping returning Wounded Warriors) ALSO: FREE WRITERS WORKSHOP: Anyone can join this. JUNE 8th, come to the FaceBook group Scrambled Leggs. (If you can’t find it go to FaceBook: Sally Franzshe’s the one with pink, green and blue confetti coming out of her head), she will get you over to the Scrambled Leggs group. This all day workshop IS the real deal (not one of those cheesy sales pitches thinly disguised as a seminar). It is a whole day of online chatting about the process of writing from idea, to publishing, and marketing. If you miss it the posts will be up for a while. Mark this on your calendar. It starts 8am EST and ends 8pm EST. And of course there will be a few challenges for Limericks, 55 word novels and more. TUESDAY, June 8th. Thanks, P.S. PASS IT ON! Would you share letter this with your entire e-list and tell them to share it with their e-lists and so on and so forth. Help raise thousands of dollars for these two Charities. TUESDAY, June 8th. http://www.ScrambledLeggs.net _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
RE: [TMIC] Living life on your own terms - accepting TM???
oh hell yeah, I'm there now! I can't feel anything under my feet, but I'm a walker. Somehow when the sand gets between your toes in the warm Caribbbean sand, you can actually feel it. It's amazing. Warm, wet and new.what we all TMers need. I'd like to walk barefoot in some snow soon though.feel the difference. Jeron To: jan...@centurytel.net; tmic-l...@eskimo.net Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Date: Sat, 22 May 2010 23:45:29 -0400 From: balmat...@aol.com For all who love the beach: we have found that there are some beaches that have very large wheelchairs that have huge plastic wheels that go very well on sand. We've seen these in San Diego, Florida and on private islands that the cruise companies have in the Bahamas. It makes it possible to be at the beach at least, they can go into the water also. Picture a Lily Tomlin chair made of PVC pipe, quite fun! I loved it. I have tried in the past walking in dry sand on my crutches and it moves too much for me so I couldn't do it. I've walked with 2 men holding my arms and that's very hard, but once I get on the hard, wet sand I'm in better shape and can do better with help. It only takes a very weak and I mean the weakest kind of wave you can imagine to knock me over unless I get into at least waist high water, but I love it. The caribbean water is the best, nice and warm and clear. It's worth it all to me to be able to experience the beach. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: j.d...@shaw.ca; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sat, May 22, 2010 8:58 am Subject: Re: [TMIC] Living life on your own terms - accepting TM??? Janet, you are right on the money. I, too, used to think is this really happening? Life is not the same, but it is life and I am surrounded with a great family and great friends. I am adjusting to the fact that we will not be doing any more beach vacations.Walking on sand would be too difficult and exhausting. But, we are thinking of other places that we can go. It took 3 years to get to where I could travel and I love it, but I have to be picky about what we do. I hate this more than I can say, but I do still have a life and I still do things - dinner with friends, movies, etc. Pain level is not so bad right now, but there is no warning when the legs will give out on me. Life is truly full of surprises. Love you all, Janice From: Barbara Alma Sent: Saturday, May 22, 2010 2:05 AM To: j.d...@shaw.ca ; tmic-list@eskimo.com Subject: [TMIC] Living life on your own terms - accepting TM??? Janet, I have to tell you that for so many years, and I've had TM for 12 years, so I cannot remember exactly how many, I honestly thought that I may just wake up one morning and it could be all gone. It was a very nice thought, but never happened. It really felt like I was living in a bad dream for so long, so thought I'd wake up and I would be out of it. Talk about not living in reality? Jeron, I believe that you have a right to decide how you live your life, with or without medications. I know that the brain fuzziness is no fun, but I enjoy the pain relief that it gives me. Without it, I have absolutely no energy and I am a mental and physical wreck. I personally cannot live without my family support, but you've decided the way you want to handle your life, which is between you and your family. I couldn't handle it, although I do admit to hiding out in my room when I'm having a bad episode of spasms so nobody has to see me like that. Still, they know I'm in there and can check on me. I hope that you will be able to find a balance between what you want to do for yourself and how to include your family in your life as well. Hugs, Barbara A in Auburn CA -Original Message- From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 9:10 am Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes
