Re: [TMIC] Superpubic
I have had a suprapubic catheter since 5/05 when I got too weak to walk again. My home health nurse changes it once a month. When I go out I can change from the big collection bag to a leg bag which hids under my dress easier. They tell my husband could be taught to change it. He should learn since he cut the line to the balloon one night while changing the bandages and we had to get the evening home health nurse to come change it. Before I had this 14 French catheter, I had something that had a tiny metal wire in my bladder but it got stopped up or plugged often and made me bleed a lot since I am on Coumadin. I do have to go to see my urologist next month so he can look inside to make sure nothing bad is happening. I remember one of the risks is that you can get cancer. I don't know if my bladder will work once I start walking again and take this out. Good luck Hildred in NC TM since 1976 ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
[TMIC] SUBSCRIBE (see below)
I get mail from the list all of the time but when I posted to the list, I got an email saying I couldn't post to the list cuz I wasn't a member. Huh? I've been here for years Hildred ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
Re: [TMIC] Making TMC Known
TM anniversary? Hmmm, that made me think. I do believe mine is 5/15, just several days after my son't birthday, although it started coming on about a week or so before that. We were in the mountains of NC, had gone to see husband's grandmother for Mother's Day, and that's when the symptoms started. Finally went into the hospital on the 15th after realizing I hadn't been able to pee for two days. Walked into the hospital though!! Hildred TM since 5/76 ** See what's free at http://www.aol.com.
Re: [TMIC] meds
I took Avinza a while back and had a terrible reaction. Actually, it scared the sh-t out of me. I think what happened was that I had been on those patches for pain and I didn't get all of that out of my system before starting the Avinza. I can't remember if I kept taking it or whether I flushed it. I take hydrocodone up to 4x a day and muscle relaxers as most of my pain is in my back. Hildred in NC TM since '76 ** See what's free at http://www.aol.com.
[TMIC] Update on hospital stay
I haven't written to the list in so long that half of you have probably forgotten me. First let me thank HeyJude for my contest winnings. They arrived in perfect shape and just made my day. Thank you so much. I went back to my doctor two weeks after I got out of the hospital. He basically asked me why I was there as I had just seen him 6 weeks before. He had no discharge summary on me and no results of the stress test. I find that really strange as he is in a practice owned by the hospital and he couldn't even find anything on the computer. After all that searching, he did say Let's talk about when you were here six weeks ago. I didn't remember throwing a fit as I tend to do in the hospital when something doesn't go as I want it to, but I have made a promise to his nurse to behave from now on. Anyway, come to find out that I am insulin resistant which I guess means pre-diabetic. That shouldn't surprise me. Seems to be a family trait, plus I just lay in bed all day so I don't burn up anything. He gave me a choice of pills or a shot and I chose the shot as it supposedly helps take your appetite away and believe me, it does. The problem I am having is that he wants me to consume 150-180 grams of protein a day. I just can't eat that much and those drink things aren't real good. I go back in a couple of weeks so maybe he'll know something about my hospital stay by then. He at least knew I was in the hospital and that his hospitalist was seeing me every day. On another note, hubby has to go to a conference in Myrtle Beach early in June. The last time I went with him I was able to stand a little, so we took my wheelchair and went, however, sitting still for that ride and not being able to move my feet caused to get blood clots when I got back and I am still on Coumadin. This time we have to find a van to rent that takes wheelchairs. My manual wheelchair that comes apart was too wide to go through the hotel room door. My electric wheelchair doesn't have that problem. I am just worried about back pain because just going to the doctor in it hurts my back so bad. I can imagine what a trip to the beach will do but I am not staying her alone. Not leading a very exciting life these days, can't even watch my soaps cuz channel 6 goes off every day when they are on. MEAN That's about it for now. Will try to visit more often. Hildred in hot North Carolina TM since '76 ** See what's free at http://www.aol.com.
Re: [TMIC] Our friend Hildred (SHE'S HOME)
I got home about 11:30 p.m. last nite. Had a great time in the hospital! I was working on relaxation techniques during my stress test and it was hard for them to get my pulse rate up, but even then the test wasn't bad. My dr's group has a hospitalist who just works in the hospital. The one I had Friday - Sunday has a cousin with TM. I thought that was interesting. It was the sudden onset variety and he is now 90% recovered. I didn't get his age or location. I go back to my dr on the 20th to get test results etc. I want to gave gastric bypass as soon as the center here gets medicare approved so at least my stress test is out of the way and maybe I can move up the list quicker. Glad to be home and sleep in my own bed where it is QUIET! Had an Alzheimer's patient across the hall. Oh, they want me to have a sleep study too cuz I was breathing through my mouth and my pulse ox went down to 90 when I was asleep. Thanks for the prayers! Hildred ** See what's free at http://www.aol.com.
Re: [TMIC] CHECK OUT THIS WEB SITE
Hey Wendy, my name is Hildred and I was hit by TM in 5/76. It started with bad back pain, slow walking, chest cold, then a high temp and muscle spasms in the large muscle in the thigh. I walked into the hospital because I hadn't pee'd in two days but got paralyzed from the chest down very quickly. I stayed there til September when I came home with a walker. By January I was back at work just having to hold onto rails going up and down the steps. I was living in Virginia at the time but think I contracted the chest cold in NC. Now here we are 30 years later and I am unable to walk again. This still I started with falls, lots of falls, which caused a broken bone. torn ligaments, etc. I haven't found a good neuro here by I have high hopes. I have been to rehab once here and to a nursing home once after they found blood clots in my legs. The only diagnostic test they did in Va was a spinal tap and the neurosurgeon said MS but neurologist who followed me for 5 months said TM and he had taught at two medical schools. I don't know what to think, it is really getting me down this time. I don't have the patience to just lie in bed all day every day. I hope there is an answer soon. Frustrated, Hildred Charlotte, NC
Re: [TMIC] I need all of your help!!
Kessler would also be where Michael Graves was sent when he came down with 'whatever' while on a trip to Germany. Michael is an architect by trade but did a lot of work for Target a few years back in aluminum, like a paper towel dispenser, as well as plates, etc in retro colors. Hildred NC
Re: [TMIC] Re: tmic-digest Digest V2006 #160
Pam, I am on Coumadin (10 mg every day, except 7.5 on Mondays) also. They change the dosage often. I don't know what I do that they have to keep changing the dosages. I gave up taking my multivitamin, gave up the green veggies, and even the questionable banana. I've probably had broccoli 5 times in this whole year. My doctor's nurse had said that he would probably have taken me off of it by now (been on it since June of last year) but that I am in bed all of the time. I sit on the side of the bed when I use the computer and move my legs lots when I am in bed. Maybe now that I have a smaller wheelchair, I can get to a neurologist and get my meds straight for sure. With my manual wheelchair, I couldn't go anywhere cuz it was too wide for doorways. Hildred Charlotte, NC
Re: [TMIC] Lidocaine
I used Lidocaine patches when I was in rehab - took one patch, cut it in two and put one on each knee - can't really say one way or the other. Probably would say it didn't help much. I have used a whole one on my back but I sleep on my back and it gets all wadded up. Hildred
Re: [TMIC] ACCEPTANCE/MAYBE EVEN GIVING UP
As I read your letter, it sounded like one I could have written word for word. I am going nuts not knowing what is wrong with me. My TM started in 1975 with terribly painful spasms in the large muscles in my thigh and my bladder was beginning to 'not work'. I walked, very weakly, into the hospital on a Saturday night and when they finally cathed me the next day, I filled up two bags. Dangerous!! I believe it was on that Sunday that a neurosurgeon came to do the spinal tap. I remember by then my legs were becoming paralyzed and it was difficult to roll up into a ball. The NS diagnosed it as MS but I never saw him again and my neurologist who followed me for the next five months always said it was TM and not MS. I saw the neurologist a couple of times after I got out of the hospital. I think the last time was after the birth of my son in 1979. Shortly after that we moved to NC and I am sure he retired. I was fine for 30 years until several years ago. I had a job as a medical transcriptionist and sat at a computer 10 hours a day. I started falling and couldn't walk up the one step it took to get into my apt. Finally one of those falls resulted in a spiral fracture to my right leg and the falls and strains and sprains continued. Lots of reasons to stay off of my feet and stay in bed. Somewhere along the way I remember having an open MRI of my spinal cord which was clear but I continued to worsen. I had seen a neuro here in Charlotte before the falls, etc because of some weird pain, etc and by the time April of 2005 came and I couldn't walk, the neuro wouldn't admit me because I hadn't seen him in two years or so. Finally, my husband's MD agreed to admit me and while in the hospital, some neuro was sent in on consult but he just said I wouldn't fit in his MRI or CT so come back when I had lost a bunch of weight. He basically blew me off. With the help of a very strong 'industrial' walker I was able to take 7 steps in the hospital which qualified me to go to rehab. After about 3 weeks in rehab I was able to take maybe 30 steps but then I come home and only get a chance to walk twice a week with PT at home and I lose everything quickly. After a short trip to Myrtle Beach with my husband going to a conference I came home to a high temp, throwing up, a UTI, I guess, etc, I was back in the hospital. This was less than a month after getting out of rehab. Come to find out I had blood clots and my blood sugar (I am not a diabetic) was way high. I was a sick puppy. This time I couldn't take any steps and rehab wouldn't take me back so I got shipped off to anursing home about 1 1/2 hours away. There were a bunch of young kids running the rehab there and their hot topic every day was where they were going for lunch. When I left there in August, I could barely take 10 steps. Again, I came home and lost all of my strength. My feet have not touched the floor now since Sept of 2005. I am stuck in bed, stuck in my room (wheelchair won't fit thru the door) and stuck in the house. I called some neuros but the wide wheelchair prevented me from getting an appointment with any of them. I have had two suicide attempts recently but only one admission. They don't have staffing on the psych ward for a patient needing so much medical attention. I do have a couple of things I am cautiously optimistic about. Supposedly a motorized wheelchair has been approved and ordered and would be able to ride a special bus to appts and a transfer system that will help me slide from one place to the other. My doctor doesn't know what to do with me. I can't really go to him - he is a bariatric specialist - yet my old wheelchair didn't fit through his door and my ins co won't pay the 800.00 round trip fee to see him anymore. Thank goodness he finally RX'd Flexeril after months and months of pain pills that didn't help. I was in constant pain even sitting on the side of the bed but the Flexeril seems to have kicked it. Unfortunately, he will only give me a minimal amount as I am a 'suicide risk.' I also seem to be still getting Hydrocodone, by the Grace of God, and Ambien and Clonazepam which my psych started me on about 5 years ago. I can't go a day without them. So that is my story, I don't know where I am,I don't know where I am going but I know I am tired of looking at these four walls and this bed. I think it has been probably 6 weeks since I have been out of this bed even tho I have my own lift. Six weeks ago was the last suicide attempt. Damn that charcoal was nasty!! Hildred in Charlotte, NC It might be hot outside, but I can't go outside to tell you! (One positive thing!)
Re: [TMIC]An Article From www.aarp.org re M. Graves
I agree that it was very nice of him to respond but I don't understand why they didn't come up with a diagnosis for him. I am sure he had the best doctors available. Like I said before, I started with an untreated viral infection in my chest area and I had the same back pain. In fact. the doctor diagnosed that as arthritis after diagnosing the chest congestion as the flu but he was just my husband's uncle (but a real doctor, nonetheless, and not a specialist. Hildred-Original Message-From: Laura A. Eichler [EMAIL PROTECTED]To: tmic-list@eskimo.comSent: Mon, 1 May 2006 11:09:41 -0400 (Eastern Daylight Time)Subject: Re: [TMIC]An Article From www.aarp.org re M. Graves I have thought of Mr. Graves every now and then also. I remember reading the first newspaper article about him when he first got ill. Because he said that he had back pain before the paralysis set in, I figured it really sounded like TM. About a month or two ago I emailed him at his office (in New York I think) and was happy and surprised when he responded. He thanked me for my interest in him but he told me that they still didn't know what exactly caused him to become paralyzed. He mentioned something about The Miami Projectfor his hope to walk again. I had meant to post this to the TMIC but time got away from me and then I forgot until Hildred just brought it up again. I thought it was so nice of him to take the time to write me back. Laura in NC
[TMIC]An Article From www.aarp.org re M. Graves
Hildred thought you might be interested in this page on AARP's Web site: --- Message from Hildred Do yall remember this guy from a few years ago? He got TM while in Germany and was sent to the same rehab facility Chris Reeves had been in. I wondered what had happened to him! - Please click the address below, or copy and paste the URL into your Web browser: http://www.aarp.org/learntech/lifelong/the_unstoppable_genius_of_michael_graves.html - AARP's Web site provides the tools, information, and opportunities to help you get the most out of life. Discover the latest AARP member benefits, discounts and special offers including savings on online services. http://www.aarp.org/
Re: [TMIC] TM Journal
When I was first diagnosed in 1976, totally paralyzed from the mid-chest area down, I was diagnosed with acute diffuse transverse encephalomyelitis and it did follow a viral infection in my upper chest, high temp and spasms in the large muscle in my thigh that they gave me ativan for. I still have the scars on the bottoms of my feet from thebed sores from the leg spasms. Anytimeafter that I was have spasms in my leg even if I didn't feel the pain, i.e.,a break of some sort. I guess that was my brain telling me something was wrong. Hildred in NC-Original Message-From: Krissy Z [EMAIL PROTECTED]To: TM List tmic-list@eskimo.com; TMA-New-England [EMAIL PROTECTED]Sent: Mon, 24 Apr 2006 12:22:56 -0700 (PDT)Subject: [TMIC] TM Journal did everyone get theirs today?Some interesting stories in there!Hey all..what is ADEM?Krissy Yahoo! Mail goes everywhere you do. Get it on your phone.
Re: [TMIC] DOES ANYONE REMEMBER
I haven''t gotten a directory or journal in a while now but I think they might have taken my name off the list when I didn't have access to a computer for a while (it hurts sooo bad sitting up in bed using a laptop!) but I seem to be back on the list now. Hildred in NC TM since '76-Original Message-From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]; tmic-list@eskimo.comSent: Mon, 24 Apr 2006 16:59:28 EDTSubject: Re: [TMIC] DOES ANYONE REMEMBER In a message dated 4/24/06 4:00:15 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: remember back a few years ago,there used to be a book that came out about 2 times a year,,from the tma with the listing of all the members names and emails in it.what ever happened to that?i havnt gotten one in years.does the association still do it? jeff Yes, they do -- one just came in my mail today, and the directory came out a few months ago, I think. I just checked the web site, and there is a form to fill out on the web site at http://www.myelitis.org/memberform.htm. Barbara H. (P.S. Sandy, if you're reading -- thanks again so much for all that you do in putting these together and sending them out!!)
Re: [TMIC] Chiro
Do we file for SSD on our earnings or our husband's? I am 3 years older than my husband and he is still working so I filled on mine which isn't much since I worked for the federal government for so many years and didn't pay into SS. Thanks - Hildred (I am only 56)-Original Message-From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: tmic-list@eskimo.comSent: Tue, 25 Apr 2006 01:36:40 EDTSubject: Re: [TMIC] Chiro In a message dated 4/16/2006 6:57:19 A.M. Hawaiian Standard Time, [EMAIL PROTECTED] writes: there is absolutely no SSA law saying that you must wait a whole year to reapply for benefits, Sorry, I'm sometimes kinda slow to respond to email. I think what happened was that when I went in tothe SS officeto ask aboutclaiming benefits from my ex-husband's SS, she asked me why I didn't apply for SSDI. I told her, it was b/c my disability wasn't permanent, to which she responded, if it lasts one year, then it's considered permanent, even if you get better later. I will have been out 1 year on May 5th, so that's why I went in recently to start the process. Previously, I was 'sure' I'd be back to work in just a few months. (BTW: I found out that I could claim benefits undermy ex-husband's name, but he's been out of the country and hasn't paid taxes for quite a while (not to mentionhis questionable ethics when he did pay taxes), so even though he's financially very well off,his benefits aren't any more than mine at this point.) As for you having a mild case and that the fatigue will just go away, many don't find that. It seems the doctors think that if you can walk, your case is "mild" and symtoms will just disapear. I think this is exactly where my doctor is coming from. She had worked with TM before, and was great in the beginning, but was so impressed with how fast I regained my ability to walk, that she just assumed (I think) that I was 'all better'. Actually, I found this a little difficult in dealing with other people, too. Maybe I'm just imagining this, but I get the feeling, even from family and friends, that when they see me walking fairly well, and feeling good enough to put some make-up on so I look like I did before, that I they don't really understand why I can't work already! Few people understand that the visible stuff is minor compared with the internal stuff. Sally
Re: [TMIC] Spinal cord/Depression/Panic attacks.
I started suffering panic attacks about 10 years ago and I don't know why. In fact, I didn't even know what they were and this waswhen I was 'well' and could walk fine. My first attack came when I was sitting at my desk at work late one night but nothing was bothering me and my face started tingling, much like when TM startedlong ago. I just got up from my desk, went home, got in bed and figured if I was going to die I would do it there. I guess my heart was racing. I don't remember. My next one also came at work not long after the first. I think maybe only 1/2 of my face was tingling but as I was working in a medical clinic they took my bp and it was way up. They thought it was a stroke so they sent me to my dr who said it was a panic attack. I was probably already on anti-depressants, so he just added Xanax. I went for a long time after that without another tingling attack but! have had lots of anxiety attacks. I am now on Clonazepam for anxiety and Lexapro for depression. I know what you mean, then are no fun! My last was when I was in the hospsital last spring and did the tingling thing again and got real agitated so the dr gave me an extra 2 mg dose of Clonazepam. I was supposed to go see a new psych tomorrow a.m. but my ins co has pretty much stopped paying for me to go anywhere except ER by ambulance and all of the wheelchair transport places I called were either too expensive or I had to fill out an application that will take 3 weeks. I am still not sure my wheelchair is going to work as it is really wide and I had been told oncebefore that the wheels wouldn't go on the tracks but I guess we will find out. Hildred in NC TM since '76-Original Message-From: Grace [EMAIL PROTECTED]To: TMIC tmic-list@eskimo.comSent: Sat, 18 Mar 2006 09:25:16 -0500Subject: [TMIC] Spinal cord/Depression/Panic attacks. Yesterday I had to go see a psychiatrist. Since March 6th, I've been having horrific panic attacks. I spoke to my neuros office and was told that it is common for people suffering cord insult to have problems like these---not just because of the depression that comes along with the physical disability, but also from the drugs used to treat it. With my Devic's, I'm on huge doses of not only prednisone but other immunosuppressants, and of course the myriad of other drugs usedto keep me functioning. Have any of you dealt with this issue, and if so what helped? For now, they've prescribed Zoloft and Xanax. I swear to you, the first panic attack I had was so horrific that I fled my house at 4:30 A.M., making the drive to my ex's house so Iwouldn't be alone. I could not catch my breath, my faceand fingers were going numb, and I quite literally wanted to*run* up and down the street. Since then, I've had several more, the last one necessitating atrip to the hospital at 11:00 o'clock at night. My oldest daughter has come back to stay with me as I am terrified of being alone. My question is this---why does cord insult itslf cause depression regardless of degree of disability? Grace
Re: [TMIC] Check out Spinal Cord Injuries Recovery Center
This is a great site. Thanks so much for passing it along. I am glad I was able to finally get on a computer for a little while today so as not to miss the link. Hildred in NC TMsince '76 for the past 4 - 5 years and still can't walk-Original Message-From: [EMAIL PROTECTED]To: TMIC-LIST@eskimo.com; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]Sent: Mon, 3 Apr 2006 13:25:07 EDTSubject: [TMIC] Check out Spinal Cord Injuries Recovery Center Spinal Cord Injuries Recovery Center I found this information to be interesting and as a relative newcomer to SCI, am now able to better understand how everything works and how new discoveries are affecting TM. It is a long article, so I apologize for that, but does deal directly with what ails us, so please forgive me. The rest of the site is pretty good too, and you can each sign up for additional information if you so wish. Peace, Jude
Re: [TMIC] AOL OT,OT
I got AOL cheaper by telling them I was a member of AARP. I don't know if you are old enough for AARP or even a member. Hildred-Original Message-From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSent: Mon, 27 Mar 2006 02:39:41 ESTSubject: Re: [TMIC] AOL OT,OT Thanks for all the info on email accounts. I now pay about $24 for aol unlimited use. But as I'm on leave without pay - and the state may not hold my position too much longer (which will mean I'll need to pay more for my health insurance, too), and no signs of going back to work too soon, I need to really watch it. I already have yahoo, also, but seldom use it b/c it seems so much slower than my aol email. And I still need to pay for internet service with yahoo, anyway. My son,who thinks I'm paying too much for dial-up)suggested I try Netzero ( http://www.netzero.net ). Has anyone heard of it? He said it's only $9.95 mo. I'm always afraid to try new things, esp. concerning the internet, as I'm fairly computer illiterate. He's never tried it b/c he has Roadrunner, or one of those more expensive ones -he wouldn'tmess with dial-up. :) But then he's a well-paid software engineer, who's not on medical leave! Sally
Re: [TMIC] pain
My TM started in 5/76 and other than the painful spasms in the beginning I was virtually painfree until the past couple of years. Any pain that I did feel in the beginning, i.e., a stubbed toe felt 10 times worse than I remembered pre-TM. Now I have pain with the least little thing and doing the trial and error thing with the pain meds. Elavil didn't help, it only made me gain weight. Trileptal helped for neuroleptic pain which seems to have gone away so I have stopped the medication for now. I also tried the Fentanyl patch but thought it was bothering my stomach too much - I think I was wrong there. Now I have Morphine which definitely messes up my stomach and makes me constipated. Am considering going back on the patch or trying Methadone. I understand it works longer than the Morphine. Get a second opinion. My pain management specialist would only say go swimming, so I had to find another doctor who would help me until such time as I am able to try the swimming thing. Good luck! HildredTM since 5/76
