CATHERINE - I TOO DON'T WAKE UP AT NIGHT. I HAVE NEVER BEEN SUCH A SOUND SLEEPER THAN I AM NOW, AND I AM NOT TAKING ANYTHING TO KNOCK ME OUT. I THINK I AM JUST SO WORN OUT WHEN I GO TO BED. I HAVE BEEN USING OVERNIGHT PADS ALONG WITH DEPENDS UNDERWEAR, WHICH SEEM TO DO THE TRICK ALL NIGHT ALL. SOME MORNINGS I FIND I WET MORE THAN OTHERS AND SOME MORNINGS I AM ALMOST DRY. I GUESS IT DEPENDS ON MY BEING ABLE TO EMPTY MY BLADDER BETTER SOME NIGHTS BEFORE I GO TO BED. I AM JUST GLAD I HAVE BEEN ABLE TO NOT HAVE ANY ACCIDENTS AND NEED TO CHANGE BEDDING.
PATTI - WISCONSIN From: Catherine [mailto:[email protected]] Sent: Monday, May 04, 2009 12:42 PM To: Transverse Mylitis Group Subject: Fw: [TMIC] RE: wow, you work too hard Trudy oops sorry group forgot you, my other problem brain fog!! ----- Forwarded Message ---- From: Catherine <[email protected]> To: Janice <[email protected]> Sent: Monday, May 4, 2009 1:39:34 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Janice and each of you, I too am so grateful to have you all to share with. I woke up last night in a puddle .. I am afraid that it is time for depends for me. Either I sleep or get up all night long to go potty. Laughs, never was a better wetter but now I am!! Future depends user, Catherine _____ From: Janice <[email protected]> To: L T CHERPESKI <[email protected]>; Trudy OGILVIE <[email protected]>; [email protected]; [email protected] Sent: Sunday, May 3, 2009 11:51:40 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy This is really encouraging for me - hearing from those that have had TM longer than I have and still talking about improvments. If it wasn't for my bladder going "nuts" during the nite, I would be doing really well. I just don't always wake up during the nite and it is apparent that I have been peeing all nite! Ain't life great! ----- Original Message ----- From: L T CHERPESKI <mailto:[email protected]> To: Trudy <mailto:[email protected]> OGILVIE ; [email protected] ; [email protected] ; Janice <mailto:[email protected]> Sent: Friday, May 01, 2009 10:33 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy Janice, you're so funny. The more questions, the better. Then we all learn something. About the cathing, I have had TM for 7 years now and have had to cath from the beginning. I couldn't "feel" that I had to go so I needed to put myself on a "pee schedule" Then my doctor sent me to a urologist who worked with people with neurological issues. She was great - after some testing (just a tad bit embarrassing) she diagnosed me with neurogenic bladder. In my case, I could not empty my bladder completely. However, I had a very strange thing happen about 2 months ago. I had just finished another round of Rituxan infusions and one day realized that I hadn't cathed! Miracle of all miracles. I still cath before bed just to make sure I don't need to get up in the night. I really have stopped thinking there is a "time limit" on this TM stuff. I've seen small improvements in the last few years that really surprised me. Like washing my hair in the shower and being able to close my eyes without one hand on the glass door. Sometimes I still need to hang on or I will lose my balance, but I could NEVER close my eyes before. Some of these things may seem small, but when you could not do it for years, it's actually huge. I hope you and all the rest of us will continue to improve for many years to come. Oh, just one more thing - Janice, nothing is too embarrassing to talk about here! We've either been there ourselves or know someone who has. So go for it! hugs, Linda (Eagle, ID) ----- Original Message ----- From: Janice <mailto:[email protected]> To: Trudy <mailto:[email protected]> OGILVIE ; [email protected] ; [email protected] Sent: Friday, May 01, 2009 6:49 PM Subject: Re: [TMIC] RE: wow, you work too hard Trudy This is Janice, As usual, I have another question. How many of you have to cath? Do you know if that is from having a catheter in too long when in the hospital, or is it a result of paralyzation onset taking a long time to come back? Do you still feel improvement - cathing less, fewer wet pants/pads, more control? Do you wake up in the nite to an already wet bed - you don't yet feel when you are peeing until it is too late? I have not gotten control yet after almost 2 1/2 years. I am improving, but not there yet. Wonder if it will ever heal. Just wondered if those of you that have had TM longer have seen any improvement after the "2-year mark". Thanks for any responses I get. I realize this is personal. Janice ----- Original Message ----- From: Trudy OGILVIE <mailto:[email protected]> To: [email protected] ; [email protected] Sent: Friday, May 01, 2009 3:27 PM Subject: [TMIC] RE: wow, you work too hard Trudy Hi Barbara, Congrats on having 3 good nights of sleep! I'll bet you feel like a whole new person.. I really don't work so hard, I do pace myself and if it doesn't get done it doesn't get done. I do have someone come in every other week to help me so I'm fortunate for that. My washing machine broke and I am now trying to catch up on that disaster. My husband (Mac) is fantastic to me. It's odd in that seven yrs. ago when this hit we were having some difficulties.... that all changed when TM came along. Crazy I know..... so is this damn TM .. only those of you on this list can understand words like "banding", numbness, fire and ice..... change your shoes ..... watch out... change your clothes ..... watch out...... But I am back and committed to doing my exercises. I do feel much better and a real sense of accomplishment. Again, so glad you're sleeping, it makes a huge difference. Take care - Blessings! Trudy Springfield, Va (the sun just peeked out - it's supposed to go away for the weekend. Worrying does not empty tomorrow of its troubles; It empties today of its strengths. _____ To: [email protected]; [email protected] Subject: wow, you work too hard Trudy Date: Thu, 30 Apr 2009 17:00:22 -0400 From: [email protected] Hi Trudy, You work too hard, I could not clean all day, whether I wanted to or not. If not for a automatic washer/dryer, the wash would not get done. And, if it goes for floors, I can do a small amount but not a lot. It kills my back, and I'm in bed for days. So, it's someone else's job. I do clean the spots on the kitchen floor iwth paper towels though from time to time, since hubby or daughter in-law aren't really responsive on the job, lol. It doesn't seem to be as important to them that it is and looks clean as it is to me. My speed is dusting and cleaning kitchen/bathrooms and laundry. I can do most things that are off the floor and I cannot do too much in a day and still manage to cook dinner. I don't cook dinner everyday, but try to do it most days. Pete (hubby) usually handles breakfast most days and it's a nice trade off as he loves breakfast. That's one of the good parts of his retirement. He also makes my coffee in the morning and then again at night. And, he is sure a handy guy to have around I know that I don't think that I could have gotten through this whole TM thing without him, he's been so good at accepting the changes that it has made in our lives. I say accepting, and I am not sure it is the right word, as it is a hard thing to say. We do have to accept it, don't have to like it as none of us do, but we just roll with it. It just is what it is. Can't change it, and cannot deny it anymore, although I tried that for about 18 months. Now, it's been almost 10 years. I use 40 mg Baclofen at night for spasms, and generally it works pretty well, although there are those nights when it doesn't seem to work. Maybe it is and if I hadn't taken it, they would be a whole lot worse, but they definately keep me from sleeping. That is usually on a day that I've done too much. I've had 2 DVT's in my left leg, and sometimes I think that the problems and pain in that leg are worse than the complications that TM has caused in my life. Although, I didn't get the DVT's until I was in the hospital paralyzed from TM. Darned leg! But I have slept 3 nights straight and am a happy camper today. Yippee! I hope you all can take something positive from me and do something positive for yourself to get on the right track if you've slipped off as well. Hugs to all, Barbara A _____ Can't afford a new spring wardrobe? Go <http://www.stylelist.com/spring-fashion/spring-style/shopping-in-your-close t?ncid=emlweusstyl00000001> shopping in your closet instead! _____ Rediscover HotmailR: Now available on your iPhone or BlackBerry Check <http://windowslive.com/RediscoverHotmail?ocid=TXT_TAGLM_WL_HM_Rediscover_Mo bile2_042009> it out.
