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 --
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] 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] 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
Re: [TMIC] alive
All right. People who experience a life changing illness, do not all reach a point of acceptance at the same time. It is a process and there is no specific time limit or gauge that can determine when that time of acceptance will come. Asking for *understanding* does not mean that one is sitting on the pity pot. In defense of Jeron, I saw nothing in his initial post that indicated that he was looking for pity. On the contrary I saw a heartfelt post from someone who was looking for understanding from others who have been through the same experience. Just because you (Or I.) have come to a point of acceptance, does not give us the right to insinuate that someone else who is not at the same point in their journey, should be where we are---instead we should respond with mindful kindness. We don't all *get there* within the same time frame nor do we all take the same route. Your way is not better, nor is it lesser---it is all very individualized. The majority of people who responded to Jeron's post, did so with understanding and kindness. I would hope that we all continue to do so. Respectfully, Grace
Re: [TMIC] alive
Totally agree Grace, we are here to support and lend friendship not judge --- On Fri, 5/21/10, Grace M. grace...@gmail.com wrote: From: Grace M. grace...@gmail.com Subject: Re: [TMIC] alive To: Maggie magiema...@hotmail.com Cc: tmic-list@eskimo.com Date: Friday, May 21, 2010, 10:21 AM All right. People who experience a life changing illness, do not all reach a point of acceptance at the same time. It is a process and there is no specific time limit or gauge that can determine when that time of acceptance will come. Asking for *understanding* does not mean that one is sitting on the pity pot. In defense of Jeron, I saw nothing in his initial post that indicated that he was looking for pity. On the contrary I saw a heartfelt post from someone who was looking for understanding from others who have been through the same experience. Just because you (Or I.) have come to a point of acceptance, does not give us the right to insinuate that someone else who is not at the same point in their journey, should be where we are---instead we should respond with mindful kindness. We don't all *get there* within the same time frame nor do we all take the same route. Your way is not better, nor is it lesser---it is all very individualized. The majority of people who responded to Jeron's post, did so with understanding and kindness. I would hope that we all continue to do so. Respectfully, Grace
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
Another good one, Bernie!! Well said...Jeanne in Dayton, WA ---Original Message--- From: Bernard Pelow Date: 5/20/2010 7:32:31 PM To: j ra Subject: Re: [TMIC] alive Hi J Ra, My name is Bernie, I don't write often anymore; but I KNOW what you are going through. The pain and all of it. I live at a pain level between 5 and 9 most of the time, unbelievable muscle spasms, the ice picks, the electrical shocks, th ehot and cold, and numerous other sensations, and it has been this way for nearly 20 years now. In the beginning it took me 3 years and the help of my daughter to see what I was doing to myself as well as others. PLEASE don't take that long! I also was a very active person in sports, I was a firefighter and paramedic, took my kids fishing, camping and all of that. TM took all of that away, but with the help of my children, friends, the TM list, and doctors, I have a life now; not just an existance. It all ends up to be that the little things mean the most I have found. If you are ableto scuba, etc. by all means do it! I cannot because of my pump. But I found the little simple things mean so much more now than ever. Just snuggling next to my daughter and watching a movie gives me more joy than jumping out of a plane, or any of the other things I used to do. Pushing people away only hurts you and them, but you need to decide which lifestyle is right for you and invite them to join you in it for you, not for what you think they want or need. When they love you, it doesn't matter what one is doing, as long as it is done togetherand with love. Hope this helps you a little... Namaste, Bernie in Texas 01_tile.jpg01_side.gif
Re: [TMIC] alive
Hey, Rob; I cant type very much right now , but just wanted to say I really enjoyed your post. Four months ago I was diagnosed with MS and three week s ago I got TM. A real rollercoaster of a ride, but, like you, most days are positive and I am very heppy to be in the state I¹m in, especially when compared to how much suffering others are going through. I still have a job I can mostly do. That¹s pretty good, I¹d say. So, I count my blessings, but some days are tougher than others. We¹re human and emote different ways depending on lots of things. Thanks for sharing, Rob. Regards, Dalton, NYC/Abu Dhabi On 21/5/10 9:23 PM, Robert Pall rp...@neillsupply.com wrote: Great dialogue today...this is what the group is all about! I am going on 13 years and I would be lying if I said I did not occasionally have a self pity party..it is very hard getting sick and never getting better...and if I dwell on this fact or how lousy my body has felt every minute of every day for 13 years.I would throw in the towel. However for the most part I chose to live my life to its fullest realizing my limitations but trying my best to find ways to overcome them. That is why this group and my NJ Support group is so important. .we talk to people who understand.and in most cases can relate far better than our spouses or family members. I have found that an occasional good cry can really help! Thank you for letting me be involved with so many brave and caring people! Rob in New Jersey From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, May 21, 2010 12:32 PM To: Janet Dunn Cc: tmic-l...@eskimo.net; tmic-list@eskimo.com Subject: Re: [TMIC] alive Hi Janet, I wonder about that, too. For the most part I am able to stay emotionally on top of things, but that being said, I also experience very dark times. My pdoc (Psychiatrist) has told me that it is perfectly normal and part of being human. Like you and Jeron though, I MISS my old life. Being physically active and fit was just part of who I was. Not being able to participate in my former activities will probably always be painful for me. Never again will I walk ten miles at a shot, or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
[TMIC] tmic-alive
Hi, I was not fit and not active outside of work,but I still miss my life before tm.Just being without the constant band around my trunk,not being numb (for the most part) from T4 to toes,able to walk more than 50 feet without my strong leg giving out. I worked at a well paid job,drove a car,had a life. Now I'm stuck in the house unless someone takes me out. Then I suffer for days after going out. I miss my old life a lot,even after almost 15 yrs. But,I have family that love me,friends and neighbors that care. Plus,I get to read as much as I want-about 4 mystery novels a week. I also can watch tv,eat,and sleep whenever I want. I'd say my life is mostly pretty good. I know it could be a lot worse. Cheryl in Easthampton,MA.
Re: [TMIC] tmic-alive
Hey, Cheryl; (I used to live in Easthampton, too. Small world) It¹s true, it cold be a lot worse. And for me also. I think we have some sort of , not duty, maybe, but some kind of faith keeping to be somehow productive so that we show a ³+² in the column. And it is different for each of us what kind oc contribution we can make, either for each other or for the larger community. Best of luck, Cheryl! Dalton, New York/ Abu Dhabi On 21/5/10 11:02 PM, rn11...@yahoo.com rn11...@yahoo.com wrote: Hi, I was not fit and not active outside of work,but I still miss my life before tm.Just being without the constant band around my trunk,not being numb (for the most part) from T4 to toes,able to walk more than 50 feet without my strong leg giving out. I worked at a well paid job,drove a car,had a life. Now I'm stuck in the house unless someone takes me out. Then I suffer for days after going out. I miss my old life a lot,even after almost 15 yrs. But,I have family that love me,friends and neighbors that care. Plus,I get to read as much as I want-about 4 mystery novels a week. I also can watch tv,eat,and sleep whenever I want. I'd say my life is mostly pretty good. I know it could be a lot worse. Cheryl in Easthampton,MA.
Re: [TMIC] tmic-alive
Thanks for sharing, Cheryl. I went for 4 1/2 years of the constant banding pain from 7 on down. My daughter finally talked me into going to our local chiro who used two different vibrator/machines on me plus laser and when I walked out that first day, the band pain had lessened to where it felt just like the pressure of a bra. I go twice a week and am so thankful to have found him. Because of the way I walk, he also needs to adjust my back off and on. I knew my neck had been out since my twenties and he picked right up on that, too! Medicare plus my supplemental pays for all of it. Jack and I don't ask 'how', we are just thankful our daughter is as stubborn as her mother!!! I haven't given up on the Lyrica and Tramadol for the pain and neuropathy and Ibuprofen for the breakthrough pain but whatever he does is a welcome relief!! Jeanne in Dayton, WA ---Original Message--- From: rn11...@yahoo.com Date: 05/21/10 14:02:15 To: tmic-list@eskimo.com Subject: [TMIC] tmic-alive Hi, I was not fit and not active outside of work,but I still miss my life before tm.Just being without the constant band around my trunk,not being numb (for the most part) from T4 to toes,able to walk more than 50 feet without my strong leg giving out. I worked at a well paid job,drove a car had a life. Now I'm stuck in the house unless someone takes me out. Then I suffer for days after going out. I miss my old life a lot,even after almost 15 yrs. But,I have family that love me,friends and neighbors that care. Plus,I get to read as much as I want-about 4 mystery novels a week. I also can watch tv,eat,and sleep whenever I want. I'd say my life is mostly pretty good. I know it could be a lot worse. Cheryl in Easthampton,MA. 11.jpg
Re: Fwd: RE: [TMIC] alive
Dear Maggie, Sorry, but this seems down right nasty to someone pouring his heart out to us. We are here to support one another, not blast someone for their feelings. Each of us is different, and takes according time to heal... and I still have dark days after 20 years. So to tell J Ra that he is looking for pity is callous and very uncaring and unloving. You pushed the wrong button on this subject with my family and me personally; ALL of us have suffered our own hell, not only those pf us afflicted with TM but our families also, but we're still here because of acceptance, love and tolerance! The latter you need to try I think... J Ra, you have all the support and love from me and my family, we wish the best for you and pray for you and your family. Peace, Bernie PS - I lost your email address J Ra, please send it to me... and have a better day... :-) From: Maggie Date: 5/21/2010 7:50:01 AM To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Subject: RE: [TMIC] alive I don't normally post but this one actually made me angry We don't choose to get TM. It chooses us. Just like other afflictions do. There is nothing you can do. Sorry but you will not get pity from me. This is a time in your life that you need your family and friends. Don't ever hide anything from them. Some may not get you or what you are going through but some will. They honestly have no idea. Help them learn! You need to quit the pity party unless you do want to be alone and miserable and feeling sorry for yourself for the rest of your life. I made a choice years back. And I am a happier person with a whole different outlook on a life I had to adjust. Someone said this is a support group. I will support anyone until they give up. Just remember, you are not the only what out there that is going through what you are. I certainly hope you don't think you are. Sorry but no pity / sympathy or whatever you want. I have TM too. attachment: BPelow.vcf
Re: [TMIC] alive
Hey Dalton, This is a thought that has crossed my mind. Almost 20 years ago I was diagnosed with TM, but in these latter years I have been having problems with other parts of my body. Numbness, jerking motions, tingling electrical feelings, etc. But they cannot do an MRI because of the pump I have. My doctor says that it is really irrelevant at this time, as I have not lost use of my arms, or had problems breathing; but my eyesight has gone to the crapper. This to can be a sign of MS. But since both are treated mostly the same, there is not much I can do... but it does make one wonder if you have a defective auto immune system, then can you have more than one auto immune disease? My oldest daughter has Graves disease, and now they think she is progressing into Myesthenia Gravis ( which can lead to ALS); or she has Fibromyalgia with the Graves. All are auto immune disorders... how were you diagnosed with both if I may ask? Namaste, Bernie in Texas Hey, Rob; I cant type very much right now , but just wanted to say I really enjoyed your post. Four months ago I was diagnosed with MS and three week s ago I got TM. A real rollercoaster of a ride, but, like you, most days are positive and I am very heppy to be in the state I'm in, especially when compared to how much suffering others are going through. I still have a job I can mostly do. That's pretty good, I'd say. So, I count my blessings, but some days are tougher than others. We're human and emote different ways depending on lots of things. Thanks for sharing, Rob. Regards, Dalton, NYC/Abu Dhabi attachment: BPelow.vcf
Re: [TMIC] alive
Hi, Bernie; Like you, I cant have an MRI because in my case I have these harrington rods made of steel in my spine keeping the 7 fused vertebrae together. I had a fall from a power pole 42 years ago. And, I love in the United Arab Emirates. So, I was diagnosed by an Indian doctor who actually practices medicine. What I mean is that he looked closely at my history, did lab tests and observed me over time. Then he was ready to change the diagnosis from demyelinating disease¹ to Transverse Myelitis. But four months before I had classic symptoms of MS. He called it demyelinating disease¹ at that time but said he was pretty sure it was MS. It went from being just one side to suddenly going to two at the level of a thoracic vertebra. I gotta stop typing now bc hands are giving out. Also today is my first day when I cant walk. But tomorriow I will be better im sure. Dalton New York/ Abu Dhabi On 21/5/10 11:52 PM, Bernard Pelow bpe...@austin.rr.com wrote: Hey Dalton, This is a thought that has crossed my mind. Almost 20 years ago I was diagnosed with TM, but in these latter years I have been having problems with other parts of my body. Numbness, jerking motions, tingling electrical feelings, etc. But they cannot do an MRI because of the pump I have. My doctor says that it is really irrelevant at this time, as I have not lost use of my arms, or had problems breathing; but my eyesight has gone to the crapper. This to can be a sign of MS. But since both are treated mostly the same, there is not much I can do... but it does make one wonder if you have a defective auto immune system, then can you have more than one auto immune disease? My oldest daughter has Graves disease, and now they think she is progressing into Myesthenia Gravis ( which can lead to ALS); or she has Fibromyalgia with the Graves. All are auto immune disorders... how were you diagnosed with both if I may ask? Namaste, Bernie in Texas Re: [TMIC] alive Hey, Rob; I cant type very much right now , but just wanted to say I really enjoyed your post. Four months ago I was diagnosed with MS and three week s ago I got TM. A real rollercoaster of a ride, but, like you, most days are positive and I am very heppy to be in the state I¹m in, especially when compared to how much suffering others are going through. I still have a job I can mostly do. That¹s pretty good, I¹d say. So, I count my blessings, but some days are tougher than others. We¹re human and emote different ways depending on lots of things. Thanks for sharing, Rob. Regards, Dalton, NYC/Abu Dhabi
Re: [TMIC] alive
Good for you Jeron! And know that there will be days when you will still miss what you used to have; I still have them. But you did the right thing, you reached out for advice and knowledge. So feel free to write the TM list or me personally anytime you feel down or whatever. And I would let the list know how well you did on your dive, and how it has helped you. Your triumphs give us hope that we can reach our goals, and visa versa. Hold your head high, and the next time you get to dive, think of me while you're down there. I miss it s much :-D On 5/21/2010 3:33 PM, j ra wrote: Thanks Bernie, I appreciated that. When I started this post, I honestly wasn't looking for pity. I just wondered if anyone else misses life before TM, because I sure do. I miss the little things. I made my dive today and it was exhilirating. I did it! I accomplished my goal and no one can take that away from me. Jeron Date: Fri, 21 May 2010 14:38:11 -0500 From: bpe...@austin.rr.com To: magiema...@hotmail.com CC: tmic-list@eskimo.com Subject: Re: Fwd: RE: [TMIC] alive Dear Maggie, Sorry, but this seems down right nasty to someone pouring his heart out to us. We are here to support one another, not blast someone for their feelings. Each of us is different, and takes according time to heal... and I still have dark days after 20 years. So to tell J Ra that he is looking for pity is callous and very uncaring and unloving. You pushed the wrong button on this subject with my family and me personally; ALL of us have suffered our own hell, not only those pf us afflicted with TM but our families also, but we're still here because of acceptance, love and tolerance! The latter you need to try I think... J Ra, you have all the support and love from me and my family, we wish the best for you and pray for you and your family. Peace, Bernie PS - I lost your email address J Ra, please send it to me... and have a better day... :-) From: Maggie Date: 5/21/2010 7:50:01 AM To: tmic-list@eskimo.com mailto:tmic-list@eskimo.com Cc: tmic-list@eskimo.com mailto:tmic-list@eskimo.com Subject: RE: [TMIC] alive I don't normally post but this one actually made me angry We don't choose to get TM. It chooses us. Just like other afflictions do. There is nothing you can do. Sorry but you will not get pity from me. This is a time in your life that you need your family and friends. Don't ever hide anything from them. Some may not get you or what you are going through but some will. They honestly have no idea. Help them learn! You need to quit the pity party unless you do want to be alone and miserable and feeling sorry for yourself for the rest of your life. I made a choice years back. And I am a happier person with a whole different outlook on a life I had to adjust. Someone said this is a support group. I will support anyone until they give up. Just remember, you are not the only what out there that is going through what you are. I certainly hope you don't think you are. Sorry but no pity / sympathy or whatever you want. I have TM too. https://signup.live.com/signup.aspx?id=60969 attachment: BPelow.vcf
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. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] alive
Rob, you are right on!! Can never quit. Jeron, we all have our nasty areas of the body that give pain or just won't work.But, the important thing, as I said earlier, is to find the right doctor that can and will make your life more acceptable. If one doc doesn't do the trick, try another. Life is too short to not get the right help when it is out there.Just keep looking. Keep us posted on how you are doing - physically and mentally. I wish you the best. Janice From: Robert Pall Sent: Friday, May 21, 2010 12:23 PM To: Grace M. ; Janet Dunn Cc: tmic-l...@eskimo.net ; tmic-list@eskimo.com Subject: RE: [TMIC] alive Great dialogue today...this is what the group is all about! I am going on 13 years and I would be lying if I said I did not occasionally have a self pity party..it is very hard getting sick and never getting better...and if I dwell on this fact or how lousy my body has felt every minute of every day for 13 years.I would throw in the towel. However for the most part I chose to live my life to its fullest realizing my limitations but trying my best to find ways to overcome them. That is why this group and my NJ Support group is so important. .we talk to people who understand.and in most cases can relate far better than our spouses or family members. I have found that an occasional good cry can really help! Thank you for letting me be involved with so many brave and caring people! Rob in New Jersey From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, May 21, 2010 12:32 PM To: Janet Dunn Cc: tmic-l...@eskimo.net; tmic-list@eskimo.com Subject: Re: [TMIC] alive Hi Janet, I wonder about that, too. For the most part I am able to stay emotionally on top of things, but that being said, I also experience very dark times. My pdoc (Psychiatrist) has told me that it is perfectly normal and part of being human. Like you and Jeron though, I MISS my old life. Being physically active and fit was just part of who I was. Not being able to participate in my former activities will probably always be painful for me. Never again will I walk ten miles at a shot, or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
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 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] alive
Hey Jeron! I knew you would love it!!! I didn't want to tell you my water experience, but if the water is the right temperature (temperature bothers me a lot!!!) I can float, kick, whatever and my body feels like TM never happened!! I get claustrophobic now, even snorkeling, which is strange, but it is worth it, so worth it. I am glad that you are doing what you need to do for you. It was one of the first things that a gentleman by the name of Doc kept telling me. I tried and tried to be what I was before and to be the caregiver for my family, as before TM. After I realized that I had to do what was right for the new me, life began to get so much better for me. Is this life easy with TM and all the other crap that comes along with it, no it isn't, but who ever said life was easy. If I didn't have TM, I may have something else that I couldn't cope with as well. Just be you and do the best you can for you at any moment. Some moments that won't be what you want, but in reality it is all any of us can do, able bodied or not. We all have to accept our limitations, but we can find ways around them. I cannot rock climb any more, but I can sip champagne on a condole, and that is OK with me these days. Good luck and congrats on the great day! Not all pain is bad and even able bodied people have pain when they push themselves, it is called good pain! Lori From: j ra Sent: Friday, May 21, 2010 5:23 PM To: Transverse Myelytis 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.
RE: [TMIC] alive
One of my dreams, Jeron, is to learn how to scuba dive!! The water is amazing with TM, isn't it? Jeanne in Dayton, WA ---Original Message--- From: j ra Date: 5/21/2010 4:24:09 PM To: Transverse Myelytis 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 Microsofts powerful SPAM protection. Sign up now. 01_tile.jpg01_side.gif
Re: [TMIC] tmic-alive
Your attitude is great, too! counts alot! janh From: rn11...@yahoo.com rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Fri, May 21, 2010 2:02:05 PM Subject: [TMIC] tmic-alive Hi, I was not fit and not active outside of work,but I still miss my life before tm.Just being without the constant band around my trunk,not being numb (for the most part) from T4 to toes,able to walk more than 50 feet without my strong leg giving out. I worked at a well paid job,drove a car,had a life. Now I'm stuck in the house unless someone takes me out. Then I suffer for days after going out. I miss my old life a lot,even after almost 15 yrs. But,I have family that love me,friends and neighbors that care. Plus,I get to read as much as I want-about 4 mystery novels a week. I also can watch tv,eat,and sleep whenever I want. I'd say my life is mostly pretty good. I know it could be a lot worse. Cheryl in Easthampton,MA.
Re: [TMIC] alive
Grace, have you looked into therapeutic horseback riding? We've two such stables in our small town. I think it first was shown to help MS patients, but now they're using for many disabilities. Our schools use them for students which shows it must be worthy or schools couldn't afford to send them! One of our members volunteered at a place in Australia, I think! His name will come to me just as I press send!! (I remember his wife is Mavis) TM/SR moment!! janh ***or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
Re: [TMIC] alive
Good luck, Gracie!!! Jeanne ---Original Message--- From: Jan Hargrove Date: 5/21/2010 6:22:59 PM To: Grace M.; tmic-l...@eskimo.net Subject: Re: [TMIC] alive Grace, have you looked into therapeutic horseback riding? We've two such stables in our small town. I think it first was shown to help MS patients, but now they're using for many disabilities. Our schools use them for students which shows it must be worthy or schools couldn't afford to send them! One of our members volunteered at a place in Australia, I think! His name will come to me just as I press send!! (I remember his wife is Mavis) TM/SR moment!! janh ***or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie 01_tile.jpg01_side.gif
Re: [TMIC] alive
His name is Errol! Gunny tried to help me, but when I told him his guess was wrong, Errol popped out of his hiding place. Please forgive me, Errol, and tell Mavis hi! janh From: Jan Hargrove jmh1...@sbcglobal.net To: Grace M. grace...@gmail.com; tmic-l...@eskimo.net Sent: Fri, May 21, 2010 6:22:54 PM Subject: Re: [TMIC] alive Grace, have you looked into therapeutic horseback riding? We've two such stables in our small town. I think it first was shown to help MS patients, but now they're using for many disabilities. Our schools use them for students which shows it must be worthy or schools couldn't afford to send them! One of our members volunteered at a place in Australia, I think! His name will come to me just as I press send!! (I remember his wife is Mavis) TM/SR moment!! janh ***or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
Re: [TMIC] alive
Janet, I've been with tm for more than 14 years, and I've learned that feeling like I wasn't doing what I could before, or that I was imposing on my friends is a fallacy!! My friends insist I continue playing cards, etc...just today one of the ladies wanted to make up for the times she couldn't 'do her turn' and I was so glad I could tell her that she didn't owe back, using their kindness to me these last years as an example. Course, as we all are now in our 70's, and others are having various prob- lems I tell them I just got more attention than any of them will get! Laughing at our frailties helps with the pain.it's like thumbing your nose at tm!! My 2¢ janh From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 11:10:41 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
Jeron, You made your dive!!I am sure it was more difficult, but you did it.So proud of you! Janice From: Bernard Pelow Sent: Friday, May 21, 2010 3:47 PM To: j ra ; TMIC Subject: Re: [TMIC] alive Good for you Jeron! And know that there will be days when you will still miss what you used to have; I still have them. But you did the right thing, you reached out for advice and knowledge. So feel free to write the TM list or me personally anytime you feel down or whatever. And I would let the list know how well you did on your dive, and how it has helped you. Your triumphs give us hope that we can reach our goals, and visa versa. Hold your head high, and the next time you get to dive, think of me while you're down there. I miss it s much :-D On 5/21/2010 3:33 PM, j ra wrote: Thanks Bernie, I appreciated that. When I started this post, I honestly wasn't looking for pity. I just wondered if anyone else misses life before TM, because I sure do. I miss the little things. I made my dive today and it was exhilirating. I did it! I accomplished my goal and no one can take that away from me. Jeron -- Date: Fri, 21 May 2010 14:38:11 -0500 From: bpe...@austin.rr.com To: magiema...@hotmail.com CC: tmic-list@eskimo.com Subject: Re: Fwd: RE: [TMIC] alive Dear Maggie, Sorry, but this seems down right nasty to someone pouring his heart out to us. We are here to support one another, not blast someone for their feelings. Each of us is different, and takes according time to heal... and I still have dark days after 20 years. So to tell J Ra that he is looking for pity is callous and very uncaring and unloving. You pushed the wrong button on this subject with my family and me personally; ALL of us have suffered our own hell, not only those pf us afflicted with TM but our families also, but we're still here because of acceptance, love and tolerance! The latter you need to try I think... J Ra, you have all the support and love from me and my family, we wish the best for you and pray for you and your family. Peace, Bernie PS - I lost your email address J Ra, please send it to me... and have a better day... :-) From: Maggie Date: 5/21/2010 7:50:01 AM To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Subject: RE: [TMIC] alive I don't normally post but this one actually made me angry We don't choose to get TM. It chooses us. Just like other afflictions do. There is nothing you can do. Sorry but you will not get pity from me. This is a time in your life that you need your family and friends. Don't ever hide anything from them. Some may not get you or what you are going through but some will. They honestly have no idea. Help them learn! You need to quit the pity party unless you do want to be alone and miserable and feeling sorry for yourself for the rest of your life. I made a choice years back. And I am a happier person with a whole different outlook on a life I had to adjust. Someone said this is a support group. I will support anyone until they give up. Just remember, you are not the only what out there that is going through what you are. I certainly hope you don't think you are. Sorry but no pity / sympathy or whatever you want. I have TM too.
Re: [TMIC] alive
What is zip-lining? Janice From: j ra Sent: Friday, May 21, 2010 4:23 PM To: Transverse Myelytis 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.
[TMIC] alive
Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron _ Hotmail: Trusted email with powerful SPAM protection. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] alive
Jeron, I honestly don't know what to say to you.I don't have the complications you do, but my life is not independent any more.I panic at the thought that something could happen to my husband - besides his loss to deal with, I know I can not live alone. But, I can not believe you would give up on life.You need a really good doctor and he needs to get you on better or more meds - especially depression meds. I hate the sound of any of us giving up.There are so many people out there that would give anything to live, even with complications like yours. I have 2 friends that are dying of cancer as we speak - they would trade places with you in a flash.Only difference is, they would find a better doctor.Many of us have had a taste of a not so good doctor, and it stinks. But you just can NOT give up.You are putting your body through so much more than it has to go through by not taking any meds. Also, the support of family and friends is extremely important.Life, to me, would be unbearable without them. Please get some help - it is out there, just waiting for you. Please stay in touch with us, Janice From: j ra Sent: Thursday, May 20, 2010 3:10 AM To: Transverse Myelytis Subject: [TMIC] alive Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron Hotmail: Trusted email with powerful SPAM protection. Sign up now.
Re: [TMIC] alive
I am thinking of someone I knew with cancer who felt that only someone else with cancer could truly understand what he was going through. While that is true on one level, on another it wounded his wife that he seemed to be shutting her out. I would urge you not to shut others out of your life. If my husband was the one with TM and he shut me out, even in an effort to spare me pain, it would be devastating to me.That's what for better or for worse, in sickness and in health is all about -- pulling together, supporting each other through the hard times as well as enjoying the good times. It bothers me when any of my loved ones considers themselves a burden. It's usually not good to quit some of these medications suddenly. I would see your doctor and see about trying different kinds or combinations to see if you can't get better relief. Barbara H. On Thu, May 20, 2010 at 4:10 AM, j ra rumc...@hotmail.com wrote: Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron -- Hotmail: Trusted email with powerful SPAM protection. Sign up now.https://signup.live.com/signup.aspx?id=60969
[TMIC] alive
It appears to me that you're beating your marriage to death as if your wife wouldn't be there for you if you let her! Going off your meds all at once, cold turkey is dangerous!! Get to a doctor and get some help!! This isn't something any of us would choose for ourselves or our familiy, but it happened, so get over it! Find something that makes you laugh, and get to laughing and start living with a positive attitude. The adage laughter is the best medicine is true, real amd important for those whose life has been altered. I know I don't sound very sympathetic, but we've all been where you are, and we've made the choice to live to the best we can...you can make that same choice! and have you asked your wife if she wants to be a part of life? Your letter sounded like it's all about you, without letting her in, meanwhile things are worse for her than for you because it appears you chose to shut her out!! Sorry if this letter sounds tough, or mean or whatever, but I'm on this tm list to get support and to sup- port those who want to get better. I pray that you'll get help immediately!! janh Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron Hotmail: Trusted email with powerful SPAM protection. Sign up now.
RE: [TMIC] alive
I truely appreciate everything that you each said to me about this. I guess it killed me a little inside when I saw what I was doing to my wife and the pressure she was under. I live in Brazil and I have a lot of faith in my team of doctors, but being a 10 on a pain scale of 1-10 everyday is so hard. I do see a psychiatrist and don't believe I'm suffering from depression. It's just that before this I lived a really adventurous lifestyle. I Sky-dived, scuba-dived, spear-fished, hunted, rappeledlived off adrenaline. Now I can't even get off the damn bed without tipping over. So, I came up with the idea to move to the caribbean by myself, just to see if I can dive again or do anything with this level of pain and get by. I am forcing myself to pick up my old lifestyle, but I really want to do it without meds and the look of my wife's face as I try to live and feel alive again. I think the only time I ever truely felt alive was when I first jumped out of an airplane at 12000 feet or when I shot my first 50 lb Grouper at 75 feet below sea level. I miss that. I want that again so bad. TM took everything I loved away from me, but gave me a remarkable appreciation for the life I once had. Guys, I'm just trying to do this for a couple of months.challenge myself to go it alone, pretend it never happened. Use a cane and get around with my pain for a bit and sky-dive again, hunt againmaybe this is all very dangerous, but I have to do it for ME! I know getting off meds cold turkey was a bad ideaI feel it now as I type this, but I hate feeling so damned drugged up all the time. So, I selfishly chose adrenaline, at least for another 2 months or so..believe or not, my wife supports the ideabecause she knows that I miss being Jeron. I refuse to be just a TM patient. Pain level today, honestly, 9 out of 10. I'm going scuba-diving in Tobago tomorrow with pain and a spear-gunjust to feel alive one more time. Jeron _ Hotmail: Free, trusted and rich email service. https://signup.live.com/signup.aspx?id=60969
Re: [TMIC] alive
Jeron, I couldn't agree more with everything that Barbara said. You shouldn't shut those out who love and care about you. I think you should get in touch with Dr. ASAP. It sounds as if you are going through withdrawal with the added depression. There is so much that you can do - write congress with the problems that we face not only with our TM problems, BUT now is a great time to hammer away at Congress for the oil spill, the Financial Reform, or whatever you feel strongly about; the up coming mid term elections will allow us to donate time in calling or sending info out, etc. These are things that I know that I can do when and if I feel like it from one day to another. I crochet - it takes me a month or so to finish one afghan because of my hands cramping up so some days I can only work on it for 15 min. or less. I donate the afghans to a group here that hands them out to people in the homeless, hospitals and nursing homes. Perhaps you could do some kind of wood working such as bird houses or such and then donate them or just hang them for your own enjoyment. Do you have a pet? I would be lost without my little boy, Zeus. He's a mighty 7 lbs. of joy and love. He really is the only reason that I get up some days. I have been divorced for 25 years and live by myself. It is really difficult sometimes especially when I don't have the money to have someone come in and help. I went shopping yesterday and this is my chill day because I am so exhausted. I can get most of the groceries in, especially those that need the fridge or freezer but I still have a couple of bags out in my van which I'll bring in in the next 2 or 3 days. I always said that if I became ill with a terminal or devastating disease, I'd drive myself off a cliff. But, now with TM, I've rethought that. There are things that I can do. Some days, I have to force myself to get up to feed my Zeus and myself, I hurt so bad that all I want to do is just knock myself out and sleep just to keep from having to deal with the pain. Days like that, I am glad that I am alone because I don't have to worry or answer to anyone. Please don't give up - you can't let TM win. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Barbara H. barbara...@gmail.com To: j ra rumc...@hotmail.com Cc: Transverse Myelytis tmic-list@eskimo.com Sent: Thursday, May 20, 2010 11:31:16 AM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] alive I am thinking of someone I knew with cancer who felt that only someone else with cancer could truly understand what he was going through. While that is true on one level, on another it wounded his wife that he seemed to be shutting her out. I would urge you not to shut others out of your life. If my husband was the one with TM and he shut me out, even in an effort to spare me pain, it would be devastating to me.That's what for better or for worse, in sickness and in health is all about -- pulling together, supporting each other through the hard times as well as enjoying the good times. It bothers me when any of my loved ones considers themselves a burden. It's usually not good to quit some of these medications suddenly. I would see your doctor and see about trying different kinds or combinations to see if you can't get better relief. Barbara H. On Thu, May 20, 2010 at 4:10 AM, j ra rumc...@hotmail.com wrote: Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron Hotmail: Trusted email with powerful SPAM protection. Sign up now.
Re: [TMIC] alive
Go for it and good luck I relearned to water ski! I couldn't do it the way I did it before TM, I was on 2 skis this time. They were nailed together with wood and spikes and the rope was attached to the skis and then up to my arms. It took me an entire week of trying to get up and stay up for only 15 or 20 seconds, but it was so worth it! I totally understand where you are coming from and what you feel you need, go and do! Be careful out there tomorrow, you are still withdrawing from your meds. I went cold turkey also, over 10 years ago and would rather live with the pain than in a fog and after time, my psychologist taught me all sorts of self hypnosis techniques that really help me. Send some of that adrenalin this way tomorrow! Lori From: j ra Sent: Thursday, May 20, 2010 12:50 PM To: Transverse Myelytis Subject: RE: [TMIC] alive I truely appreciate everything that you each said to me about this. I guess it killed me a little inside when I saw what I was doing to my wife and the pressure she was under. I live in Brazil and I have a lot of faith in my team of doctors, but being a 10 on a pain scale of 1-10 everyday is so hard. I do see a psychiatrist and don't believe I'm suffering from depression. It's just that before this I lived a really adventurous lifestyle. I Sky-dived, scuba-dived, spear-fished, hunted, rappeledlived off adrenaline. Now I can't even get off the damn bed without tipping over. So, I came up with the idea to move to the caribbean by myself, just to see if I can dive again or do anything with this level of pain and get by. I am forcing myself to pick up my old lifestyle, but I really want to do it without meds and the look of my wife's face as I try to live and feel alive again. I think the only time I ever truely felt alive was when I first jumped out of an airplane at 12000 feet or when I shot my first 50 lb Grouper at 75 feet below sea level. I miss that. I want that again so bad. TM took everything I loved away from me, but gave me a remarkable appreciation for the life I once had. Guys, I'm just trying to do this for a couple of months.challenge myself to go it alone, pretend it never happened. Use a cane and get around with my pain for a bit and sky-dive again, hunt againmaybe this is all very dangerous, but I have to do it for ME! I know getting off meds cold turkey was a bad ideaI feel it now as I type this, but I hate feeling so damned drugged up all the time. So, I selfishly chose adrenaline, at least for another 2 months or so..believe or not, my wife supports the ideabecause she knows that I miss being Jeron. I refuse to be just a TM patient. Pain level today, honestly, 9 out of 10. I'm going scuba-diving in Tobago tomorrow with pain and a spear-gunjust to feel alive one more time. Jeron Hotmail: Free, trusted and rich email service. Get it now.
Re: [TMIC] alive
Hi Jeron, I hear you. Before I was hit with NMO I was a distance walker. It was my absolute passion and I always did between 6-10 miles every day. It was my medicine, my high. I hiked, rode horses, worked with animals both domestic and wild. In one fell swoop it was all over. Very tough for me to deal with. Like you, I am now going though my journey of illness without my family, and that is by CHOICE. No one knows what it's like to be in my skin as no two people perceive quality of life in the same way. My children and ex husband of 35 years, know that I'm ill with NMO and that it's serious---but that is all that they know. I will admit to being very open with my best friend. Why her and not the family? Because she *gets* me. She doesn't pity me. (God bless her for that.) Whenever I am hospitalised I do not usually tell my family, and if my children happen to become aware, I do NOT allow them to see me. There is no way that I want them to ever see me flat on my back paralyzed with catheters hanging out of my neck. My two daughters (I also have a son, but he was in Denver at the time.) witnessed that scene five years ago whenever I first got hit and it traumatized them. So did the first year and a half whenever my older daughter had to move in with my youngest and I in order to care for me. I talk to them frequently on the phone and see my youngest often as she is still currently living in the area while her husband it deployed. That being said, I do not allow my illness to ever enter into their lives. Others may choose to do things differently, but that is their own personal choice. If I am ever depressed and/or feel the need to cry---and that's something that I rarely do---I do it privately. My reasons may be different from yours, but for now it seems that we have chosen the same path, and there is certainly nothing wrong with it. The best, Grace
Re: [TMIC] alive
Hi J Ra, My name is Bernie, I don't write often anymore; but I KNOW what you are going through. The pain and all of it. I live at a pain level between 5 and 9 most of the time, unbelievable muscle spasms, the ice picks, the electrical shocks, th ehot and cold, and numerous other sensations, and it has been this way for nearly 20 years now. In the beginning it took me 3 years and the help of my daughter to see what I was doing to myself as well as others. PLEASE don't take that long! I also was a very active person in sports, I was a firefighter and paramedic, took my kids fishing, camping and all of that. TM took all of that away, but with the help of my children, friends, the TM list, and doctors, I have a life now; not just an existance. It all ends up to be that the little things mean the most I have found. If you are ableto scuba, etc. by all means do it! I cannot because of my pump. But I found the little simple things mean so much more now than ever. Just snuggling next to my daughter and watching a movie gives me more joy than jumping out of a plane, or any of the other things I used to do. Pushing people away only hurts you and them, but you need to decide which lifestyle is right for you and invite them to join you in it for you, not for what you think they want or need. When they love you, it doesn't matter what one is doing, as long as it is done togetherand with love. Hope this helps you a little... Namaste, Bernie in Texas attachment: BPelow.vcf
