Re: [TMIC] it's the smallest world
Barbara, The trip sounds wonderful...how nice it must have been to go and relax and enjoy things.. The story about Erica and her dad brought me to tears...I guess I can at least partially understand the turmoil her dad must have been going through.. TM can be such a bastard sometimes... Be well and take care.. Kevin From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, November 3, 2008 11:41:59 PM Subject: [TMIC] it's the smallest world Hello list, We have just finished a 16 night Panama Canal Cruise, and I must say, that it is sure the easiest way for us to travel these days. We had a wonderful time, and the service that was given to me was just incredible. I felt like a pampered soul the entire time, and it sure is a wonderful feeling. Although I don't ask or require anywhere near the amount of help that was extended to me, it made me feel good to know that if I did need it, I would not need to worry that I would be able to still have a good time. We are now spending a few days in Orlando before returning to our home in No. CA. Today we met a lady named Erica, and when we were talking she asked if I had an accident since I was using the wheelchair. I have had a lot of spasms the past few days and not walking very well, even with my crutches. Anyway, when my husband told her that I hadn't had an accident but that it was caused by a virus, she immediately asked if I had Transverse Myelitis. When I said YES, her eyes welled up with tears. It was a real intense moment. Her father had gotten TM and it was a slowly progressing onset for him, and he had a very hard time getting a diagnosis. They thought he had Guillian-Barre (sp?). It took one and a half years to get the TM diagnosis, and he was in excruciating pain. Unfortunately, he just couldn't deal with it, the pain made him crazy. He didn't want to get involved with any support groups either and wouldn't go onto anti-depressants. He was one of the unlucky ones who didn't get any improvement. He ended up committing suicide to end his pain. This was a real bonding moment for the 3 of us. I can't tell you how much pain this woman and her family had gone through due to this. She's better now, but she says that her brother is still really a mess. I say this only because I want people to know how much TM affects us and those around us. We know how hard it is to try to be in a positive mood most of the time. When my pain gets unbearable to deal with in front of people, it's usually when my spasms are pretty bad, I excuse myself and go into another room and spend some time alone until it passes. I don't want anyone to have to see me like that anymore than necessary, and my medication usually makes it easier to deal with once it kicks in. It's generally when I've overdone it or have taken it off schedule (my fault), but still definitely not any fun. Erica has made a friendship with another TMer, and his name is Neil McNeil. I may not have spelled it correctly, but the name sounded familiar to me. Neil, if you are out there in TMIC land, please send me an email and let me know. Hugs to all, Barbara A from Auburn, CA Plan your next getaway with AOL Travel. Check out Today's Hot 5 Travel Deals!
Re: [TMIC] it's the smallest world
Oh, Kevin, I'm so glad I got your e-mail with Barbara's attachment. It, too, made my heart cry for that family and I think each and every one of us can understand the pain and frustration that poor man went through, can't we? We get to the point where we just cry inside it hurts so bad and it just wears us out to where we want to sometimes curl up on the bed and just hope that it will go away. And we try to explain how we don't 'feel' anything inside, that it 'feels' like our body is full of wet sand, yet we are in such pain and have the horrible spasms that it makes us want to cryhard to explain and harder yet to understand. Most all of the time I think we just say 'we're fine' because it's just too hard for anyone to understand. It is also so difficult to find anything that really works or maybe it works for a bit and then quits. Yes, we must keep on keepin' on!!! That is why I feel so blessed for all of you, Every single one of you offer something different that feeds my body, mind and soul and I thank you from the bottom of my heart. 'Thank you' just doesn't seem to ever be enough. And Barbara, Jack and I took that same cruise and wasn't it something? We can't afford to do that much but we save for it and what a memory maker. They are sure lowering the prices on them right now but it still is so spendy to fly just to get to the ship! I'm hardly getting any TMIC notes any longer for some reason but I get yours, Kevin!!! I miss my 'family'!!! Jeanne in Dayton where it is golden and orange everywhere and raining in buckets! Oh, the smell is so sweet!
RE: [TMIC] it's the smallest world
Although it is never “nice” to hear about someone’s suicide, it is, in a small way, reassuring to know that the feelings that I am struggling with are valid, and that others have them. And yes, you are right, some days I just want to curl up in bed and hope it all goes away. Some days it is all I can do to say I am “fine”. Janet E-mail message checked by Spyware Doctor (6.0.0.386) Database version: 5.11050 http://www.pctools.com/en/spyware-doctor-antivirus/
Re: [TMIC] it's the smallest world
So true, Janet.. I don't know if it is the weather change or what but I've had the last few weeks where I can hardly move from the increased pain. It literally just drains you and makes you so tired, so very tired...j
Re: [TMIC] it's the smallest world
Jeanne, I agree with that about the weather change. Before I got out of bed this morning I asked my husband if the barometer had dropped during the night. We have one of those 'weather stations' that tell temp, barometer etc. He looked and sure enough it had. I figured it has since I was much more stiff than usual this morning and had a hard time just to get out of bed. Low back, legs, spasms etc were worse this morning. Heather in Calgary - Original Message - From: jrushton To: Janet Dunn ; tmic Sent: Tuesday, November 04, 2008 7:48 AM Subject: Re: [TMIC] it's the smallest world So true, Janet.. I don't know if it is the weather change or what but I've had the last few weeks where I can hardly move from the increased pain. It literally just drains you and makes you so tired, so very tired...j
[TMIC] it's the smallest world
Hello list, We have just finished a 16 night Panama Canal Cruise, and I must say, that it is sure the easiest way for us to travel these days. We had a wonderful time, and the service that was given to me was just incredible. I felt like a pampered soul the entire time, and it sure is a wonderful feeling. Although I don't ask or require anywhere near the amount of help that was extended to me, it made me feel good to know that if I did need it, I would not need to worry that I would be able to still have a good time. We are now spending a few days in Orlando before returning to our home in No. CA. Today we met a lady named Erica, and when we were talking she asked if I had an accident since I was using the wheelchair. I have had a lot of spasms the past few days and not walking very well, even with my crutches. Anyway, when my husband told her that I hadn't had an accident but that it was caused by a virus, she immediately asked if I had Transverse Myelitis. When I said YES, her eyes welled up with tears. It was a real intense moment. Her father had gotten TM and it was a slowly progressing onset for him, and he had a very hard time getting a diagnosis. They thought he had Guillian-Barre (sp?). It took one and a half years to get the TM diagnosis, and he was in excruciating pain. Unfortunately, he just couldn't deal with it, the pain made him crazy. He didn't want to get involved with any support groups either and wouldn't go onto anti-depressants. He was one of the unlucky ones who didn't get any improvement. He ended up committing suicide to end his pain. This was a real bonding moment for the 3 of us. I can't tell you how much pain this woman and her family had gone through due to this. She's better now, but she says that her brother is still really a mess. I say this only because I want people to know how much TM affects us and those around us. We know how hard it is to try to be in a positive mood most of the time. When my pain gets unbearable to deal with in front of people, it's usually when my spasms are pretty bad, I excuse myself and go into another room and spend some time alone until it passes. I don't want anyone to have to see me like that anymore than necessary, and my medication usually makes it easier to deal with once it kicks in. It's generally when I've overdone it or have taken it off schedule (my fault), but still definitely not any fun. Erica has made a friendship with another TMer, and his name is Neil McNeil. I may not have spelled it correctly, but the name sounded familiar to me. Neil, if you are out there in TMIC land, please send me an email and let me know. Hugs to all, Barbara A from Auburn, CA **Plan your next getaway with AOL Travel. Check out Today's Hot 5 Travel Deals! (http://pr.atwola.com/promoclk/10075x1212416248x1200771803/aol?redir=http://travel.aol.com/discount-travel?ncid=emlcntustrav0001)
