Glad to hear from u guys. Deb I can offer a few tips. I keep a calendar (carry it with me every where I go - all of my doctor appointments etc). In the back there are sheets where I keep notes from all my doctor visits so I can remember most of what they said. I also have sticky pads around the house so when I think of something I write it down. I use sticky so it doesn't hit the floor or pushed in trash. I eventually collect and combine, and stick in my calendar. I even keep 3/5 cards in my wallet in case something comes up when I am out and about. I can no longer go anywhere without help, can't cook (not that I did much anyway, ha ha) I just started new Rituxan treatment yesterday. Not sure how long before I am suppose to know difference. I had new lesions again on 9 may, this time thoracic. Do any of u keep having new lesions? It is so depressing. I also have to try and keep a log for my urologist. Had 2 Botox treatments and so far not working. Might send me to MUSC. I can't wait until I can be seen at Johns Hopkins -God I hope they come up with something. If I could just get around Independently, have enough breath and strength to get from my bedroom to the kitchen. I don't know how you are still working. You must be so exhausted. Please remember keeping your body happy is the most important. Not getting rest is the worse thing you can do. I spent a lot to time planning my daughters wedding. We had the wedding, my son,daughter-in-law and NEW grandson was here to include my son's new in-laws. After all was done,I slept all day Saturday and Sunday and never felt so rested. Had not done this since being sick. I was always doing something. Now I know this illness has priority over everything I plan to do. I will find a way to make things work. I will keep all in my prayers. Candy
Sent from my iPad On May 18, 2012, at 11:43 PM, "Janice Nichols" <jan...@centurytel.net> wrote: > 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: Deb Monteleone > Sent: Friday, May 18, 2012 5:27 PM > To: 'Janice Nichols' ; tmic-list@eskimo.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:jan...@centurytel.net] > Sent: Thursday, May 17, 2012 9:13 AM > To: 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: Robert Pall > Sent: Thursday, May 17, 2012 7:33 AM > To: 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
