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
[TMIC] Jeron's crisis
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
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.
[TMIC] OT - what can be done even when disabled
For all of us who want to know what can be done while disabled, here is a site of a friend of mine who is a quadraplegic. He amazes mr at all the things he has done, and I think he ill amaze you also. I hope you enjoy his many adventures as I did, and I get the added experience of being friends with him. He does not have TM or anythign, he was paralyzed in his teens from a fall, and he is now my age (50ish lol) and shows no sign of slowing down Go Gene!! Peace, Bernie http://www.genosplace.org/ attachment: BPelow.vcf
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] Jeron's crisis
What a beautiful response Regina, couldn't have said it any better :)) hugs Gilly - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Saturday, May 22, 2010 5:34 AM Subject: [TMIC] Jeron's crisis 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
[TMIC] May Long Weekend
Hi Again Jeron, I am really jealous now. You are in the Caribbean, and you, Dalton, appear to be in Abu Dhabi, both places are warm. Here it is 0 degrees Celsius, and it is snowing, and it is supposed to snow all night up to 10 cms. That sucks. Big time. So, continue to share those stories, because I am going to be sitting in front of a warm fire, inside, watching it snow on the green lawns, the flowers, and all over the trees that are in blossom. How dreary And you all know what cold does to the legs and banding with TM. Janet
[TMIC] $$$$$$$$$$$$$$ holy cow $$$$$$$$$$$$$$$
i was the one that left the post a couple weeks ago about if a paraplegic can get an erection,well i followed up with my dr this am.5 viagra pills cost $146.00 bucks and my ins wont pay for it,so much for that idea. DIPLOMACY DOES NOT WORK WHEN DEALING WITH NUT'S HELL BENT ON DESTROYING US.
Re: [TMIC] May Long Weekend
AS I'm sure Dalton can attest, the Middle East gets dang cold in winter...difference is that there, most homes are NOT heated...so when it drops to 6 degrees Celcius, you're piling on the clothes and blankets. I spent 6 years in Saudi...and beware Dalton, I've had my share of Indian doctors down there that had no clue as to what they were doing. The one that took the cake was the Internist who told me to decide how much insulin to take according to how much sugar was in my urine...err... Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! Buying a used wheelchair? BUYER BEWARE!!! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 21/05/2010 7:32 PM, Janet Dunn wrote: Hi Again Jeron, I am really jealous now. You are in the Caribbean, and you, Dalton, appear to be in Abu Dhabi, both places are warm. Here it is 0 degrees Celsius, and it is snowing, and it is supposed to snow all night up to 10 cms. That sucks. Big time. So, continue to share those stories, because I am going to be sitting in front of a warm fire, inside, watching it snow on the green lawns, the flowers, and all over the trees that are in blossom. How dreary And you all know what cold does to the legs and banding with TM. Janet
Re: [TMIC] Jeron's crisis
Re: [TMIC] Jeron's crisisYou 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 Sent: Friday, May 21, 2010 3:17 PM To: Regina Rummel ; 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
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.
Re: [TMIC] $$$$$$$$$$$$$$ holy cow $$$$$$$$$$$$$$$
Life just isn't fair. Janice From: jeff bernier Sent: Friday, May 21, 2010 8:44 PM To: msersl...@yahoogroups.com ; tmic-list@eskimo.com Subject: [TMIC] $$ holy cow $$$ i was the one that left the post a couple weeks ago about if a paraplegic can get an erection,well i followed up with my dr this am.5 viagra pills cost $146.00 bucks and my ins wont pay for it,so much for that idea. DIPLOMACY DOES NOT WORK WHEN DEALING WITH NUT'S HELL BENT ON DESTROYING US.
Re: [TMIC] Jeron's crisis
Thanks, janice; I would dry up if I couldn¹t 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! That¹s 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) I¹m not that bad off with the TM and the MS has let me alone for now. For instance, this is the first day I can¹t 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
