Hi,
To address questions from a few of you: I am 55 for 10 more days. I work in Human Resources at a State University doing Excel macros, Word mail merges; oversee a document Imaging system among other things. I like my job; it gets me out of the house, keeps my brain challenged and is really my only form of socializing these days. I use a Roho cushion on my chair, sit next to a window to help regulate temperature (they just bought me a cooling vest to help), and I have a scooter for the afternoons or all day if I’m having a bad day. It is very tiring some days but I need to pay the bills and most important have health insurance. I can’t afford to pay cobra for 2 years (1,600 a month) until I would be eligible for Medicare as a disabled person. I would really like to work an hour or two less a day but that screws with my pension, social security and misc other things at the job. It might come to that eventually, take it as it comes. I got TM June 2008. Had to learn how to walk again, I did, I still concentrate on walking and especially steps to help add any improvement. I use a cane, but I bought a really beautiful Cocobolo wood cane so I love using it and I think people see the beauty of the wood not a handicapped person. I sleep really long and late on the weekends; my husband does 98% of the cooking, laundry and cleaning so that really helps me be able to work. If I didn’t have him there is no way I could work full time or any time. I know I should take better care to get more sleep, stretch, etc but I actually exercise at work by just going to the bathroom or lunchroom as they are very far from my desk. When at home I really don’t walk far at all. I use my phone for a calendar and notes, although the sticky notes around the house is good as my phone is off or in bedroom when home. I did get a tablet for work so I can organize all my notes etc. for each project. I feel kind of silly when I can’t remember things when speaking with others. Now I will have it all in one place that I can look up quickly, of course I still have to finish figuring out how to organize it to be useful. What is a Rituxan treatment? If you have new lesions, do you also have MS like I do, I thought for the most part TM was a one hit event. My husband is great about reading the emails. As he does most of the house stuff I know he would eventually get a little resentful as most humans would. The emails seem to keep it in his mind what I am going through. The important part is, it is not always me trying to explain it, which I think naturally loses effect after a while. If you can get your family or friends to read a few of these emails (the ones that show others have same problems as you) I think it could help a lot. I have also sent out my own email to friends and family on occasion as an update of my life (kind of like what some people put in xmas cards) except it’s not xmas. It helps do exactly what Iris said, it’s not for them to feel sorry for us - just understand why we are not up for many of the activities we previously took for granted. It was weird; a few days ago I was watching 3 different people walking down the hall at work. I thought, look, they have no idea how great it is to do such a simple thing and not even have to think about how to do it. I wasn’t mad, it just amazes me how much we all take for granted until something happens to you. I have had one real exasperation where I needed steroids, although I had many maybe I overdid it and that’s why my symptoms are so bad. Being an always on the go person before TM it is just ridiculous to me what over doing it is. Since I got TM/MS I wondered how you would know the difference between over doing, an urinary tract infection (have had my share) or a real relapse/exasperation. Now I know, which is kind of good in a sad way. Hope I covered it all. Thank you for caring and being out there to talk to. I agree that this site was better before people left for facebook. I have no time for facebook but I’m sure it’s great for those at home, it’s more like having a personal real time conversation, but I do miss the larger quantity of emails here. Sometimes I don’t read these emails for five days, but when I’m ready they are waiting for me. Make it a great day, Deb From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Friday, May 18, 2012 11:44 PM To: Deb Monteleone; tmic-list@eskimo.com; 'Robert Pall' Subject: Re: [TMIC] Is anyone here? Deb, I can’t believe you are still working. What do you do and how old are you? I am so sorry about all the pain you are in and really hope the meds, whatever they are, do the job. Keep posting to us and let us know how you are doing. Janice From: <mailto:aiki...@optonline.net> Deb Monteleone Sent: Friday, May 18, 2012 5:27 PM To: <mailto:jan...@centurytel.net> 'Janice Nichols' ; <mailto:tmic-list@eskimo.com> tmic-list@eskimo.com ; <mailto:robthe...@aol.com> 'Robert Pall' Subject: RE: [TMIC] Is anyone here? Janice and all members, You hit the nail on the head, for me anyway. I am guilty of mostly reading and occasionally writing. I still go to my “in person” MS support group for mainly that reason, to help the newly diagnosed. I figure they were there for me, I do take a break every now and then. I have TM that was caused by MS. As most of this group I am in constant pain, both legs and feet. Whenever possible I take my shoes off because they cause my feet, then legs to hurt more. I haven’t worn socks in just over 3 years. Lucky me, from not wearing shoes around the house and still hanging on to a lot of extra weight I got Plantar Fasciitis in my left foot. It was like a knife going into my heel every step I took. Went and got a shot in the heel, then 3 months later another one, then 2 weeks later a 3rd one, hopefully 3rd is the charm. But since this started in December I now have to wear shoes ALL the time and a splint at night. Needless to say, my feet and legs were/are not happy wearing shoes so my symptoms (numb, needles, spasticity, etc.) have intensified, but the interesting thing is they are not as sharp. I am also in the process of eliminating my Avinza (morphine) from my arsenal of meds. Doctor gave me Oxicontin to help with any possible withdrawal, I am using only one a day instead of the 1 2x a day if necessary as prescribed. Never did drugs so not sure what withdrawal feels like. Tomorrow will be a full week, 2 days I did take the 2nd pill. I have felt odd at times, I guess edgy, confused and more pain. Hope I can continue without Morphine and will try to stop Oxicontin next week. Unfortunately I did find out that I need to ease the pain somewhat. Before I stopped the morphine, I was at work in so much pain, had to leave at 1:00, cried all the way home. The next morning when taking my morning meds, I noticed the days before was still there, I had gone to work unarmed. At least it explained it. I know this is long but wanted to mention how great this site has been for my husband to really understand TM. He reads all of the emails which helps him to believe and understand what I say is truly happening to me daily. As a human we tend to diminish a person’s symptoms over time but this groups emails keep it real. I thank you all for sharing on this site, it helps in so many ways and I apologize for not participating more. Not an excuse but after working all day I just wanted to read and not get involved. My bad. Make it a great day, Deb From: Janice Nichols <mailto:[mailto:jan...@centurytel.net]> [mailto:jan...@centurytel.net] Sent: Thursday, May 17, 2012 9:13 AM To: <mailto:tmic-list@eskimo.com> tmic-list@eskimo.com; Robert Pall Subject: Re: [TMIC] Is anyone here? Still here! It seems to be another “quiet” time. At night after going to bed, I seem to think of things I want to ask the group, but then with my brilliant memory, I forget by morning. We have had some new people join the group lately, which is good. I think there are many of us that still read whatever comes across our website, but don’t bother to get into it either because they are subjects that have been discussed long ago and they put their 2 cents worth in at that time, or feel they have nothing to offer. We really need to respond more for the new ones just joined and the new ones need to jump in and add to the conversation too. This is a great website with terrific people and we need to keep it going with comments and questions and responses. Janice From: <mailto:robthe...@aol.com> Robert Pall Sent: Thursday, May 17, 2012 7:33 AM To: <mailto:tmic-list@eskimo.com> tmic-list@eskimo.com Subject: [TMIC] Is anyone here? Hi...lately the only mail I receive is from"friends living with TM" ....I just left that facebook room because I was getting far to many chats. Is our network still active or has everyone joined another group. This is where I started and this is where I belong. I would love to hear back from all of the "active" members and see how they are doing! Rob in New Jersey
