Re: [TMIC] Stress
My dear Jude, I'm so glad that you are putting life back into the TMIC!!! I've quit trying to keep up with the facebook pages... I look forward to reading from old friends,altho I won't be talking much yet.I promise to read what's written and I'll join in the writing when I'm able So glad you're back in our world!! Hugs, janh From: heyjude48...@aol.com heyjude48...@aol.com To: robthe...@aol.com Cc: tmic-list@eskimo.com Sent: Tue, January 22, 2013 8:40:51 PM Subject: Re: [TMIC] Stress There are only 16 of us though and I am trying to come up with topics for us to discuss. Actually, I am looking through our FB sites to try and come up with them. So anything you have to offer will mean a lot to me. I need your help. Jude, Michigan No decision is a decision not to make a decision... In a message dated 1/22/2013 9:34:38 P.M. Eastern Standard Time, robthe...@aol.com writes: I for one am thrilled to see allof the emails again.maybe facebook is not the forum forus...especially the older ones of us!!! Rob inNJ -Original Message- From: Robert Pallrobthe...@aol.com To: Heyjude48458 heyjude48...@aol.com;ashfordrichard ashfordrich...@bellsouth.net; pjv1234pjv1...@chartermi.net; a-ryder a-ry...@comcast.net; bpelowbpe...@yahoo.com; xbeeclarkx xbeecla...@gmail.com; ladylinda48ladylind...@yahoo.com; LadyNotes ladyno...@aol.com; akuaa...@artfarm.com; kay k...@cole.gen.nz; patticooley38patticoole...@gmail.com; Bgunny7682 bgunny7...@aol.com; r.c.pratt r.c.pr...@verizon.net; snow121100snow121...@hotmail.com; j.dunn j.d...@shaw.ca; jannicjan...@centurytel.net; jcsnod jcs...@yahoo.com; jefshpsjefs...@aol.com; jlubin jlu...@eskimo.com; malugssuakmalugss...@gmail.com; Thenavigator10 thenavigato...@aol.com Cc: tmic-listtmic-list@eskimo.com Sent: Tue, Jan 22, 2013 9:26 pm Subject:Re: [TMIC] Stress I take 60 mg of Cymbalta every morning...it helps both fibroneuralga as well as anxiety, depression and stress...I also take 20 mg of diazapan to sleep each night. Rob inNew Jersey -OriginalMessage- From: Heyjude48458 heyjude48...@aol.com To:ashfordrichard ashfordrich...@bellsouth.net;pjv1234 pjv1...@chartermi.net; a-rydera-ry...@comcast.net; bpelow bpe...@yahoo.com; xbeeclarkx xbeecla...@gmail.com; ladylinda48 ladylind...@yahoo.com; LadyNotesladyno...@aol.com; akua a...@artfarm.com; kay k...@cole.gen.nz; patticooley38 patticoole...@gmail.com;Bgunny7682 bgunny7...@aol.com; r.c.pratt r.c.pr...@verizon.net; snow121100snow121...@hotmail.com; j.dunn j.d...@shaw.ca; jannic jan...@centurytel.net; jcsnod jcs...@yahoo.com; jefshps jefs...@aol.com; jlubin jlu...@eskimo.com; malugssuak malugss...@gmail.com;Thenavigator10 thenavigato...@aol.com Cc:tmic-list tmic-list@eskimo.com Sent: Tue,Jan 22, 2013 6:56 pm Subject: [TMIC] Stress Hello Guys Gals, How iseveryone tonight? I honestly hope you are well and in good spirits. How doesstress affect your life with TM? What do you do to alleviate it? How do you fight it? We justfound out that my husband (Dave) has cancer of the blood with lesions on hisliver. He got a call from his Dr. just a few minutes ago. He has to go in to talk to the Dr. on Thursday. I am soworried about him. I can't get out of this damn bed to even lift a finger to help him, because I have a broken leg. What aresome of the things you do to combat stress in your lives? We are facingother things too that are considered major stressors on the stress scale. I reallyneed your help on this. My TM is acting up likecrazy. Hugs, Jude,Michigan Here's to the nightsthat turned into mornings, with the friends that turnedintofamily...
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Re: [TMIC] In Memorium
I have hismother's name andemail..but I have no idea if she is still living. Name: Virginia Livingston E-mail: nana-...@webtv.net We corresponded for a while but only while she was grievingjanh --- On Sun, 4/1/12, Lori Biehler lbieh...@earthlink.net wrote: From: Lori Biehler lbieh...@earthlink.netSubject: Re: [TMIC] In MemoriumTo: "Barbara H." barbara...@gmail.com, "tmic" tmic-list@eskimo.comDate: Sunday, April 1, 2012, 3:09 PM I think of Doc often, it has been so long since he passed and it was such an unnecessary passing. I am sure he is at peace now, his pain made him a bit of a pain . I have no clue how to reach his sons, they emailed me for a bit after he died. Lori From: Barbara H. Sent: Sunday, April 01, 2012 12:00 AM To: tmic Subject: [TMIC] In Memorium As I was preparing the birthday list for this month, I saw that April was the birthday month of two long-time TMIC members who have passed on: Ken Oliver (birthday: April 1) who just passed away this last year I think, and "Doc" (Roger: I am not sure of his last name) (birthday: April 24). I don't have the contact information for any of their family members, but if any of you do, they might appreciate hearing that we were thinking of their loved ones and their loss and ours.Barbara H.http://barbarah.wordpress.com
Re: [TMIC] Jude
Jude, I'm sorry to hear that you've had another UTI!! Those things are the burden of the world in my estimation.I'm glad you're now home and doing well. I don't know much from the list.I took my 57th dive in the hyperbaric chamber yesrerday and today besides the dive they'll check to see if I can take another skin graft next week... this takes 3 hours per day so with that and trying to get my affairs in order, I don't have much time for the list. Again, I'g glad to see you're back on-line!! Hugs, janh From: Jude Hoops heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Tue, May 3, 2011 10:43:43 PM Subject: [TMIC] Jude Hi it’s Jude. I am having difficulty posting to the site. Have recently been released from the hospital due to another bad UTI and am now doing well at home. I need to be kept up to date on what has been happening and how everyone is doing. I hope that all are well and wish to hear from someone out there. Love, Hope and Happiness, Jude
Re: [TMIC] Responding to e-mails
Good for you, Barbara My inbox is full of stuff that I can Only delete. I have no time to read all this stuff and don't learn anything of those in need or suchI really an thinking of taking myself off line for now8I'm trying to keep up just to have some sanity in my life right now, but this isn't working for meI'll try to get back ay\ter my life is calmer! jan From: Barbara H. barbara...@gmail.com To: tmic-list@eskimo.com Sent: Mon, April 4, 2011 3:31:16 PM Subject: [TMIC] Responding to e-mails I don't want to ruffle anyone's feathers, but it would be really helpful if people would read through the responses to a post before responding. A case in point is the one from Bee Clark -- almost as soon as the first e-mail came through (at least in my inbox), it proved to be a scam and Bee responded herself that her account was hacked and the e-mail was not from her. But now as people log into their accounts they are responding to the first e-mail and telling the rest of the list it is a scam when we know that already and it has been resolved. When you see something like that, go ahead and read the first responses to see if it has been taken care of so the list isn't flooded with many people saying the same thing. I know some people think the list has been too quiet, but I don't think any of us wants to read multiple people saying the same thing over and over for hours or days. Just sharing my two cents. :-) Barbara H. http:barbarah.wordpress.com
Re: [TMIC] antibiotics
Gillie, I can't tell you about how long you should take an antibiotic, most importantly how strong is the dosage and what are the side effects? I believe the longer you're on it the more likely one is to have a reaction. I told earlier that I fell on Sept 16, had surgery on my right ankle on the 18th and the incision have yet to heal. The wound care unit told me that the slow healing was due to diabetes and high blood pressure (both of which I have under control)! I'm now on first 30 day trip in hyperbaric chamber..healing is taking place, and they also have done skin grafts. I'm not suggesting that is what you need to look at, rather if you might have a condition that may be aggravating the healing process. My best to you, and please keep us updated!! Hugs, janh From: Gillian Clark mingalett...@activ8.net.au To: TM list tmic-list@eskimo.com Sent: Thu, February 10, 2011 3:14:57 AM Subject: [TMIC] antibiotics G'day all, I'm looking for some advice. Almost 8 weeks ago, I had a nasty fall, gashed my leg and spent a night in hospital getting almost every test known to man or beast. The gash has still not healed, getting there, and I'm about to be put on yet another course of antibiotics. It has not taken me long has it for this to suddenly spark a little something in my poor old brain. I'm thinking that being on continuous antibiotics for 8 weeks is not what a tm patient should be doing. I look forward to any and all suggestions. Many thanks in advance Hugs Gilly.
Re: [TMIC] 10th!
Neil, I've appreciated your attitude from the first time you wrote to the list!! You took a lemon, made lemonade and then you shared it with those of us who also received lemons. Thank goodness you have shared your lemonade through the years. We all need your attitude. I've tried to be upbeat through the last 15 years, but you've made it fun...seems I re- member something about golf that you told early in your tm life, or do I have someone else in mind? I don't write much anymore, but do read most posts and I'm blessed to once again get to hear from you! Thank you and happy belated anniversary!! janh Stillwater, OK From: Neil McNeil n_...@hotmail.com To: tmic-list@eskimo.com Sent: Thu, February 3, 2011 7:58:01 PM Subject: [TMIC] 10th! It’s been a long time since I have posted to the list but today is special so I decided to drop by and say hello. Feb 4th is my 10th anniversary of TM. It’s hard to believe that ten years have passed and I like to say that time flies when you can feel your toes! As crazy as it sounds there are worse things than getting TM. Over the past ten years I have gained an appreciation for many things as a result of TM. I’m so glad to live in a country where my medical care was provided free of charge and I didn’t have to fight with HMO’s or sell my house to deal with medical bills. I’m glad I have been able to work and I’m so pleased to have met some wonderful people who got dealt the same hand and made the most of it. My theory remains that we don’t come with a warranty and there is no sense in bitching and whining about what happens. When I first got TM I asked my neurologist “why me?” He replied “it has to be someone”. I thought that answer was brilliant. Someone wins the lottery and someone gets hit by lightning. Ten years ago I made a decision that I was going to make the most of things and I’m glad I did. So…hello again to those of you who have been here for a long time and also to those who are new. Hang in there and keep trying to wiggle those toes….it pays off! Neil (In NS)
Re: [TMIC] Re: our aussie friends
To all of you Aussies! I've prayed that each and every one of you was safe from all that's happened there. So Glad to hear from you!! Please keep us updated. Bobby Jim, the man that does our driveway is just now getting started here after storm came in Monday night. He called me when he started this a.m. and said that this is worse than Christmas '09!! So sorry we couldn't share with you..it was -2º when our granddaughter got up and our daughter has had to stay in a motel the last 2 nights cause she couldn't get out here. Everyday something no matter where we live!! Somedays more than others!! janh From: bobby jim elbobber...@earthlink.net To: Gillian Clark mingalett...@activ8.net.au; Errol White eamjwh...@bigpond.com; TM list tmic-list@eskimo.com Cc: balmat...@aol.com Sent: Thu, February 3, 2011 8:11:45 AM Subject: [TMIC] Re: our aussie friends G'day, mate. Glad to hear you and yours fared well during this mayhem. All is well here in Elvisland; the main part of the storm ways wy north as it went NE. Today it is just c c cold but they do predict (ha) some snow as the monter storms wanes. Hooroo, BobbyJim - Original Message - From: Gillian Clark To: Errol White ; TM list Sent: Thursday, February 03, 2011 1:42 Subject: [TMIC] Re: our aussie friends I received your email Errol, I'm sending to you rather than the list.no, I'll send it to both, just in case. I'm really happy to hear from you Gilly - Original Message - From: Errol White To: 'bobby jim' Cc: balmat...@aol.com ; mingalett...@activ8.net.au Sent: Thursday, February 03, 2011 5:14 PM Subject: RE: our aussie friends Hello everyone, We are still here, nothing has changed, my email address is the same, so I don’t really know what is going on with the cyber space communications. We were not directly adversely affected by the flooding around Brisbane as we are on high ground here. Our youngest son who lives about 16 kilometres north of us, had water through his garage but not the house. He is in fairly flat area and the storm water backed up and did not drain away from the street well. We have not been affected by the cyclone either, Cairns is around 1960 kilometres north of us, however we have friends who live at Luninda just near where the cyclone crossed the coast. We have not heard from them at this time, I think they would have evacuated to higher ground. Could you please let me know when you get this email. I will keep it short for now, hopefully it will go through. Take care all and be well. Kindest Regards from Errol White, South East Queensland, Australia From:bobby jim [mailto:elbobber...@earthlink.net] Sent: Thursday, 3 February 2011 1:18 PM To: Errol White Cc: balmat...@aol.com Subject: Re: our aussie friends
[TMIC] February Birthdays
HAPPY BIRTHDAY to you February Babes!! janh Stillwater, OK Happy Birthday to the February kids! Please send any additions or corrections to: 2-1 Jeanne Rushton (jrush...@columbiaenergyllc.com) 2/2 Ursula (uma...@t-online.de) 2/2 Lisa in TN (lsim...@aol.com) 2-5 Tita in Delaware (te...@flash.net ) 2-6 Barbara Alma (balmat...@aol.com) 2-7 Barbara in Texas (babbsie1...@yahoo.com) 2-9 Frank (ftrascr...@aol.com) 2/11 Mary (mster...@yahoo.com ) 2-11 Deb Casey (casey...@myway.com) 2/15 Jill (jillybean60...@yahoo.com) 2-17 JOAN FINK (2-17 mafi...@yahoo.com) 2-20 Norma (dgti...@aol.com) 2/26 Patti - Michigan (pjv1...@chartermi.net) 2/27 Cindy (rdavi...@san.rr.com)
Re: [TMIC] My Husbands Update
How quickly things can turn around!! the excited writing today is for all of us, it's amazing how a positive turn affects all of us! Good news for one, is good news for us all!! Keep us updated..and let John know how great his news is to us all and how happy we are for you!! janh Stillwater, OK From: Emily em...@telephonelady.com To: tmic-list@eskimo.com Sent: Wed, January 19, 2011 6:13:12 PM Subject: [TMIC] My Husbands Update I wrote yesterday and told you about my husband and his lymphoma in the spinal cord. Here is the update that I sent out to family friends: Hello Family Friends, It has been 12 days since my last update. Lots has happened since then so let me fill you in on what has been happening. John is going to therapy 5 days per week. He certainly has the right attitude but sometimes his body doesn’t want to cooperate. There is lots of weakness going on and we believe that it has something to do with Chemotherapy. While chemo is busy killing cancer cells it does wreak havoc on the other parts of your body. So little progress has been made at therapy but it certainly isn’t from a lack of trying. John really wants to at least get to the point that he was at after leaving rehab back in October, which was basically in a wheelchair but could transfer to bed, toilet, chair, etc. using a walker. As this point in time, he is in a bed most of the day (wheelchair 3-5 hours per day) and is using a transfer board to do his transfers. He is able to stand in place anywhere between 30 seconds to 1.5 minutes depending if it is a good day or a bad day. Marcella continues to be a nice place. The amenities are very nice. The nursing staff are very pleasant and just like with any other place they are short staffed and over worked. We have found this to be true in each hospital and/or rehab since all of this started. But considering it is pretty good there. John attends occupational and physical therapy 5 days per week for at least 2.5 hours total. Today, John had his 3rd chemo treatment. When we arrived and they did the usual blood work and then we met with Nancy, Dr. Henry’s CRNA. She gave us great news. The lymphoma in the back is diminished….gone. The lymph nodes under the arms and the groin have regressed to less than half their size compared to the previous Pet/Cat Scans which were taken prior to starting the radiation and chemo. This is fantastic news. John is also starting to get “some” feelings in his left leg….things like muscle spasms, sensations, etc. This is all part of the healing process….and we pray that the spine will heal completely and all of that will go away. We really don’t know how much damage has occurred nor how much will return to good health….only time will tell. John tolerated the chemo very well and was able to get the abbreviated version since this was the 3rd treatment. The first time he got chemo they were very careful and it dripped at a very slow speed which took almost 12 hours from start to finish. Today Chemo started around 12PM and he was on the stretcher heading back to Marcella by 3:15PM. While he was getting Chemo we had Chinese food for lunch and John was able to eat 8 buffalo chicken wings and a platter of shrimp low mein and pork fried rice. He even ate his fortune cookie!! It was extremely enjoyable!! Another good news item is that originally we were told that he would have to have 5 or 6 chemo treatments. Today we were told that he only has to have 1 more treatment which he will get on February 9th. He will have to get another Pet/Cat Scan sometime after the last dose of chemo. We also found out that John’s hemoglobin and hemocrit was very low today…like at 8.5. So they have him an injection to help elevate that. This injection is much like Procrit but you only have to have it once every 3 weeks (it is called Aranesp). He will get his second dose at the next chemo visit. Nancy said that the low numbers is contributing to his weakness and may be why he is having difficulty making progress in therapy. We also met with the Nutritionist. John has lost a lot of weight recently because of the thrush he had in his mouth…it caused him to have difficulty swallowing. She has recommended that he drink an ensure in between meals to get good nourishment and said that she was going to look at his blood work and contact Marcella and have him take a multi vitamin. The social worker gave us information regarding what we need to do when John comes home. If he doesn’t make progress by February 5th, Medicare will not allow him to stay at a sub-acute facility and he will have to come home. So we talked about the options that are available to us like at home physical therapy, visiting nurses, visiting certified nursing assistants, etc. I will talk more about this as we approach John coming home whenever that will be.
Re [TMIC] hyperbaric chamber treatment of wounds
Kevin, I'm told that in Europe the chamber is used for MS and many other ailments. I'm assuming that in U.S., if FDA doesn't approve it for that use, Medicare won't pay etc, etc Alton, I take a DVD with me each day and it's about the right length to get through the treatment. Also my tech enjoys watching the movies as he's monitoring the chamber, so we talk about movies as we watch. So far, I've not been bored, hope saying that doesn't jinx the rest of my treatments!! They took new measurements and pix on the 7th day of treatent and they can see progress! So, maybe it's worth missing out on the outside world for 6 weeks!! ;-) janh From: kevin weilacher hwyfli...@yahoo.com To: Alton Ryder a-ry...@comcast.net; tmic-l...@eskimo.net Sent: Sat, January 15, 2011 10:46:29 AM Subject: Re: [TMIC] hyperbaric chamber treatment of wounds The rock legend Ronnie Lane used to use a hyperbaric chamber for treatment of his MS and had success with itbut yet the MS Society still says that there is no benefit to it's use reference this great interview that Ronnie did many years agohttp://www.the-faces.com/lane/ints/1lane2.htm By the way, Ronnie passed away in 1997 due to pneumonia. From: Alton Ryder a-ry...@comcast.net To: tmic-l...@eskimo.net Sent: Sat, January 15, 2011 11:06:30 AM Subject: Re: [TMIC] hyperbaric chamber treatment of wounds I took this treatment a couple of years ago for a wound that I had had for two decades. The results were astounding; it shrunk from four little toes wide and one high to one wide and a half high. However, instead of continuing until it was healed, the wound specialist followed the protocol and stopped after six weeks (the reason might have been rooted in Medicare's one-size-fits-all coverage. Yesterday we discussed restarting the hyperbaric chamber treatment. The only problem is boredom. You cannot bring flammable paper into a chamber, but you can watch a video through the transparent wall. Alton On Nov 21, 2010, at 11:19 AM, Jan Hargrove wrote: hyperbaric chamber
Re: [TMIC] Careful OT
Gunny, Thank the Good Lord you knew to call for help!! Now, listen to what you're telling us to do and live by those rules!! Know that we care and are praying for your recovery. janh From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Thu, January 6, 2011 3:09:52 PM Subject: [TMIC] Careful OT Monday night around 11:30 I had a horrendous Heart attack. Went to North Side Hospital by ambulance where they put a stent in on a 95% clogged artery. Gotta go back on the 28th for them to do an 80% clogged one. So, if you smoke, STOP. If you eat fatty foods, STOP. If your messin up your life, STOP. This ain't no game. Felt like mule kicked me in the chest.
Re: [TMIC] CINDY MCLEROY
The incision from surgery on my ankle 9/18, hasn't healed and the chamber is supposed to help the healing process. We'll see. Today went well..good tech and we got to watch DVD which made us laugh and the time go faster!! jan From: Janice Nichols jan...@centurytel.net To: Jan Hargrove jmh1...@sbcglobal.net; tmic-l...@eskimo.net Sent: Wed, January 5, 2011 7:06:50 PM Subject: Re: [TMIC] CINDY MCLEROY Why are you going to the hyperbaric chamber? Janice From: Jan Hargrove Sent: Tuesday, January 04, 2011 9:55 AM To: Janice Nichols ; tmic-l...@eskimo.net Subject: Re: [TMIC] CINDY MCLEROY I, too, had a good experience in rehab! I'm now going to start treatment in the hyperbaric chamber for the nest 6 weeks. So far, the experiences in the wound clinic have also been good, we'll see how we feel at the end of the 6 week course. BTW, I most likely won't be on line much during that time, as it takes 3 hours each day! janh From: Janice Nichols jan...@centurytel.net To: mafi...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Mon, January 3, 2011 10:15:46 PM Subject: Re: [TMIC] CINDY MCLEROY I also was a lot more work for my rehab nurses too. I was there for 5-6 weeks. Most of the other patients were just recuperating from knee/ankle surgery, or maybe a stroke victim, but no one else had the problems I did with TM. I also had a couple of serious situations – my organs just wanted to stop working, waking surrounded by my own blood, etc. The nursing staff for rehab just doesn’t usually have problem patients like me. They were wonderful to me and very patient, but I knew it really stretched them to handle my situations. Actually, they kind of hung out in my room (right by the nurses desk) when they had a few extra minutes. They did extra things for me to try to make things a good as possible for me. I knew I was extra work for them, but I have no complaints on how I was treated. I guess I was lucky. Janice From: Barbara Alma Sent: Monday, January 03, 2011 2:34 AM To: mafi...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] CINDY MCLEROY Hi Joan and all TMIC members, When I spoke to Cindy today she mentioned that Joan was going to update the TMIC of her and her condition. She told me that she could use and would appreciate some prayers. I know that I do not need to remind all of you of this since we are a big family but I am. As some of the other TM'ers have found out when being in a skilled nursing/rehab facility and required more care than others - you don't always get it. And Cindy said that she asked one of the workers, I don't know if it was a nurse or what his title was, but asked if she was a lot more work than most patients and he told her that yes, she was! Can you believe it? She's going to handle it in a meeting on Monday with the management. Hugs, Barbara A in Auburn CA -Original Message- From: JOAN FINK mafi...@yahoo.com To: tmic-list tmic-list@eskimo.com Sent: Sun, Jan 2, 2011 9:59 pm Subject: [TMIC] CINDY MCLEROY THINGS ARE LOOKING PRETTY GOOD SO FAR. THE ROD IN HER FEMUR HAD TO BE REMOVED AND THE DR. FELT THEY WERE AHEAD OF THE INFECTION. SHE HAS BEEN TRANSFERRED TO A REHAB FACILITY NEAR ST. JUDE. IT'S GOING TO TAKE TIME... WILL LET THE LIST KNOW MORE AS IT HAPPENS. SHE DOES NOT HAVE ACCESS TO HER COMPUTER/E-MAIL. I HAVE READ HER ALL MESSAGES SENT TO ME FULL OF YOUR WELL-WISHES AND PRAYERS. FEEL FREE TO CONTACT ME AT ANY TIME. A FELLOW TM'ER SINCE 2000 JOAN FINK
Re: [TMIC] CINDY MCLEROY
I, too, had a good experience in rehab! I'm now going to start treatment in the hyperbaric chamber for the nest 6 weeks. So far, the experiences in the wound clinic have also been good, we'll see how we feel at the end of the 6 week course. BTW, I most likely won't be on line much during that time, as it takes 3 hours each day! janh From: Janice Nichols jan...@centurytel.net To: mafi...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Mon, January 3, 2011 10:15:46 PM Subject: Re: [TMIC] CINDY MCLEROY I also was a lot more work for my rehab nurses too. I was there for 5-6 weeks. Most of the other patients were just recuperating from knee/ankle surgery, or maybe a stroke victim, but no one else had the problems I did with TM. I also had a couple of serious situations – my organs just wanted to stop working, waking surrounded by my own blood, etc. The nursing staff for rehab just doesn’t usually have problem patients like me. They were wonderful to me and very patient, but I knew it really stretched them to handle my situations. Actually, they kind of hung out in my room (right by the nurses desk) when they had a few extra minutes. They did extra things for me to try to make things a good as possible for me. I knew I was extra work for them, but I have no complaints on how I was treated. I guess I was lucky. Janice From: Barbara Alma Sent: Monday, January 03, 2011 2:34 AM To: mafi...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] CINDY MCLEROY Hi Joan and all TMIC members, When I spoke to Cindy today she mentioned that Joan was going to update the TMIC of her and her condition. She told me that she could use and would appreciate some prayers. I know that I do not need to remind all of you of this since we are a big family but I am. As some of the other TM'ers have found out when being in a skilled nursing/rehab facility and required more care than others - you don't always get it. And Cindy said that she asked one of the workers, I don't know if it was a nurse or what his title was, but asked if she was a lot more work than most patients and he told her that yes, she was! Can you believe it? She's going to handle it in a meeting on Monday with the management. Hugs, Barbara A in Auburn CA -Original Message- From: JOAN FINK mafi...@yahoo.com To: tmic-list tmic-list@eskimo.com Sent: Sun, Jan 2, 2011 9:59 pm Subject: [TMIC] CINDY MCLEROY THINGS ARE LOOKING PRETTY GOOD SO FAR. THE ROD IN HER FEMUR HAD TO BE REMOVED AND THE DR. FELT THEY WERE AHEAD OF THE INFECTION. SHE HAS BEEN TRANSFERRED TO A REHAB FACILITY NEAR ST. JUDE. IT'S GOING TO TAKE TIME... WILL LET THE LIST KNOW MORE AS IT HAPPENS. SHE DOES NOT HAVE ACCESS TO HER COMPUTER/E-MAIL. I HAVE READ HER ALL MESSAGES SENT TO ME FULL OF YOUR WELL-WISHES AND PRAYERS. FEEL FREE TO CONTACT ME AT ANY TIME. A FELLOW TM'ER SINCE 2000 JOAN FINK
Re: [TMIC] January Birthdays
HAPPY BIRTHDAY to all you January babies!! janh 1- 7 Lauren (sugal...@adelphia.net) 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1/9 Julienne (julesin...@aol.com) 1/13 Debi (brade...@hotmail.com) 1-17 Jenna Stentz (jkste...@yahoo.com ) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday snow121...@hotmail.com 1/23 Grace (grace...@gmail.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com)
Re: [TMIC] Re: Health
Roger, Sorry to hear of your latest trial.seems tm likes to share us with other auto-immune syndroms! You're lucky you can tolerate immuran! I changed your address in my book..please keep us updated! janh Stillwater, OK I've had TM for about 16 years (lesion found at C-2 through C-4). Last February I started having new symptoms, swollen feet, fingers going numb, more pain in my hands, feet and legs. My regular neuro did lots of MRIs thinking it was TM recurring. She finally sent me to a neuro that specializes in peripheral nerve diseases and he diagnosed me with Mononeuritis Multiplex, which is a rare autoimmune disease that attacks peripheral nerves and causes muscle wasting. I've been on weekly steroid IVs for about six months (had the last infusion on my 61st birthday)and take Imuran which is an immune system suppressant. I follow all the TM posts, but rarely join in. Some of the old-timers remember me. Oh, by the way, I have a new e-mail address, r.c.pr...@frontier.com. Thanks for writing to me. Roger, Kennewick, WA - Original Message - From: Janice Nichols jan...@centurytel.net To: Roger Pratt r.c.pr...@verizon.net Sent: Saturday, January 1, 2011 11:09:08 AM Subject: Health Roger, I don’t remember you posting here before. How long have you had the first autoimmune disease and what was it? Also, what was the 2nd one? What a tough blow to the body. I am really sorry. What problems did it leave for you? I am not nosy, just interested and concerned that one of us got hit twice. I have had TM for 4 years. I can walk, not gracefully, with my cane. I use a wheelchair for distance. Hope to hear from you, Janice
Re: [TMIC] Remember Me? What's going on?
Jude, It's great to see you in such a good mood.we've got to stay that way, just to let tm know IT CANT BEAT US!!! Here's hoping that the New Year brings only good to each of us Love, jan Stillwater, OK TIAD!!!
Re: [TMIC] Happy New Year to All at TMIC
Jude, I got your other note first...I'm excited for you to be with friends on New Years!! Rest extra prior to the event and then give yoiurself permission to rest on the days followingit'll make both you and Dave have more fun!Have a GREAT TIME!! Love, jan From: Jude Hoops heyjude48...@aol.comTo: tmic-list@eskimo.comSent: Sun, December 26, 2010 5:01:47 PMSubject: [TMIC] Happy New Year to All at TMIC Hi, It is Jude, bet you thought you would never hear from me again. I was down for a while, but never “out”. Please forgive me for not keeping up and I continue to blame my computer for the difficulties. What has been going on with everyone? Dave and I live quietly and only go out to Dr.’s offices, etc. We are seeing friends for New Years Eve, with hopes that I will remain up to it. Love to all of you, Jude
Re: [TMIC] Merry Christmas A HAPPY NEW YEAR
Saroj, How great to see your name.and at such a meaningful time! I hope that all is well with you and wish you the best in the new year!! Hugs, janh From: Saroj Kumari sarojkumar...@gmail.com To: tmic-list tmic-list@eskimo.com Sent: Fri, December 24, 2010 12:13:34 AM Subject: [TMIC] Merry Christmas A HAPPY NEW YEAR Hi all my friends Wish you all a merry Christmas a happy healthy a prosperous new year Saroj from India
: [TMIC] off topic
Jane, My thoughts and prayers are with you and your family, especially your granddaughter who was there when she passed. I'm certain that as you said, she's in a better place w/o shots hospital, et al. janh From: celr...@aol.com celr...@aol.com To: TMIC-LIST@eskimo.com Sent: Thu, December 2, 2010 11:11:06 AM Subject: [TMIC] off topic Since you are all part of my cyber family I wanted to ask for prayer for my family and me. My daughter died yesterday. She was 41 and diabetic, on dialysis, poor health. Her daughter was with her and it was sudden. She didn't say anything just collapsed and that was it. She had been through s much all her life and now she is at rest with the Lord. Her name is Pamela Caldwell. No more needles and hospitals. Please forgive me if I offend anyone but I needed to talk. Jane/Splendora Tx
Fw: [TMIC] December Birthdays
Happy Birthday December Babies!! Happy Birthday to the December kids! Please send any additions or corrections to tmic-list@eskimo.com 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jan...@centurytel.net) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin (patticoole...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-10 Shirley from UK (shirley.up...@dsl.pipex.com) 12-15 Alton Ryder(a-ry...@comcast.net) 12-15 CarolAnn B.L. from South Carolina, USA (ladycame...@aol.com) 12-18 Rod Jenke (rktje...@chariot.com.au) 12/23 Roger Pratt (r.c.pr...@verizon.net ) 12-25 Gilly (gilly...@y7mail.com) 12/31 Janet (j.d...@shaw.ca)
Re: [TMIC]
Hey, Jude! It's great to hear from you!! I completely understand your need to get away for awhile...I do much more reading and less writing these days...too much talking about the same things wear on me! I,like you and Patti, have a hubby who does most of what gets done around hereseems like I'm constantly apologizing to him for not being more help.but he just keeps on doing and not complaining!! Drop in again to let us know how you're doing. Love and Hugs, janh
Re: [TMIC] Money
Gunny, Thank goodness you let us know in time to get the money order in the mail!! P. S. I went to mail your MO before I stopped to wish you a Happy B-day, so you should be able to breathe easily soon (hope the Holidays doesn't slow the mail!!) Here's wishing you many happy returns of the day. jan From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Wed, November 24, 2010 10:59:32 AM Subject: [TMIC] Money Please don't send birthday cards tomorrow as it is my birthday. Please send cash or money order for my retirement fund. I'll hold my breath.
[TMIC] Unidentified subject!
Here's what I learned today.my Thanksgiving prayer has been granted!! The surgeon at the Wound Clinic let me know that I didn't qualify for Hyperbaric Chamber, but that my healing is beginning to move along at better clip! How many blessings can one 'girl' have? Family and Friends who care and health returning!! Here's hoping you all have a wonderful Thanksgiving!! and thanks for being there for me! Love, jan
Re: [TMIC] contracture questions
Janice, I have no idea what a 'normal' person's healing would take, but because I have high BP and Diabetes, this isn't healing due to little circulation. I am currently under the care of the wound clinic at our hospital and with further testing it appears I most likely am a candidate for the hyperbaric (sp?) chamber which will take 2 hours/day, 5 days/week for a 6 week period. The infusion of oxygen into my system should heal the incision..as to when my leg will be able to bear weight, no one has said!! I know I'll have some time in the fashionable orthopedic boot that I have rceived. With the fashion statement the boot makes I can wear my glasses I received following cataract surgery, and you'll not want to admit you know me!!! They say my residuals from tm make no difference. jan Jan, how long is it supposed to take for your ankle to heal? Does TM make things more complicated? I thought PT was not to hurt. Janice
Fw: [TMIC] My Husband's Update
Emily and John, You're both in my prayers!! Keep a positive attitude and we will too! janh - Forwarded Message From: Emily em...@telephonelady.com To: Tmic-list@eskimo.com Sent: Thu, November 18, 2010 8:32:35 PM Subject: [TMIC] My Husband's Update I sent this update to our family and friends and wanted to share it with all of you: Dear Family Friends: Here is the latest on John: Yesterday's spinal tap failed. John's body doesn't give up spinal fluid very easily. This isn't the first time that it has happened. As generous as John is, he is a tad stingy when it comes to spinal fluid!! So the spinal tap has been put off for now and the lymph node biopsy is what will give the doctors the information they need to make an accurate diagnosis. He had surgery today to remove a lymph node under his arm so they can send it to pathology to identify if he indeed has lymphoma and what type. He has a little soreness under his arm but no pain. He was getting ready to rest when I left this evening. The doctor discussed the possibility of him going home tonight but John didn't feel that he is comfortable yet in his mobility so they are keeping him until physical therapy can get in to check his mobility and decide if coming home is an option right now. They treat lymphoma of this non-Hodgkin's type with chemotherapy and steroids. The brain and spinal cord is a protected area and just putting chemo into his blood will not address the lesions that are in his spinal cord/column. They need to get the chemo into the spinal fluid. His resistance regarding the previous spinal taps dictates that they have to get it in there in another way. In the head there are 4 reservoirs that have spinal fluid in themthey are like little cups. They will have to drill a hole into John's skull to put in a nickel size port (button like device) under the skin so they can get the chemo into the spinal fluid. Then treatment can begin and each time he needs chemo they will put in the port in his head. They will also have to get the chemo in his blood as well. Of course this all hinges on the outcome of the pathology report on the lymph node. John is very pleased with Doctor Henry and trusts him and feels confident that this is the right thing to do if necessary. We are hoping that lymphoma is the cause of his Transverse Myletis because if it is at least there is a way to stop the lesions from getting any worse and causing more damage. He had his first dose of steroids late this afternoon and the steroids usually help John rather quickly so hopefully tomorrow he will start feeling stronger. I will send another email out to the group as news becomes available. Until then please continue to keep John in your daily prayers. If your place of worship will allow you to put John on their prayer list, please do so, as this means so much to the both of us. Love to all, Emily
Re: [TMIC] personal problem
After taking many of these same things mentioned today, my primary doc said Milk of Magnesia! It works everytime@@ My 2¢ janh From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Wed, October 13, 2010 6:35:49 AM Subject: [TMIC] personal problem I don't write very often, and I normally wouldn't talk to people about something so personal, but I don't know who else to ask. I have been having problems with constipation for a long time -- and it is only getting worse. As of right now I have been unable to go to the bathroom for five days. I have been taking Senokot and Miralax, plus I have been prescribed Lactulose by my neurologist. I take magnesium citrate pretty often, but it really makes me miserable when I take it. My legs get really tight and shake uncontrollably from being dehydrated. My stomach actually hurts today and I'm normally don't feel pain there. I have been to doctors and they were no help. It seems like they just take my money and run because they don't have the answer. When I went to the gynecologist she actually asked me why I thought I needed to have a Pap smear even though I told her I hadn't had one in over two years. She just didn't want to deal with me because I cannot stand up. I get this from a lot of doctors -- it seems like nobody wants to deal with me. I couldn't even find a regular family doctor-- a receptionist at one of the doctors offices I called actually told me that she didn't think the doctors there would be able to handle my case. She said that if I was a regular person that was just dealing with colds and other normal illnesses, that would be fine, but she didn't think they would know what to do to help me. Does anyone have any suggestions on what I could take to help me with this situation? I am getting very desperate for some relief! Thank you, Amanda Diskey
Re: [TMIC] 18 year Anniversary
Congratlations on your anniversary..might sound morbid, but had you not had tm, nor had I, we'd never have met or shared our lives with one another!! Hugs, jan From: Cindy McLeroy cindymcle...@socal.rr.com To: tmic-list@eskimo.com Sent: Fri, October 8, 2010 1:14:23 PM Subject: [TMIC] 18 year Anniversary I woke up this morning knowing there was something I should remember about the day. Didn't remember what until I looked at the TMIC emails about 6 yr anniversary. It was 18 years today that TM entered my life, but like so many, I was out of town on a business trip to New Orleans. I live in So. Calif. I have been in a wheelchair ever since with no sign of recovery. Lucky for me it hasn't defined my life but has really presented a lot of new opportunities and new friends-expectially those who also have TM. This isn't to say there aren't days when the pain overwhelms me or the fatigue takes over - well actually this is most days. But even tho I don't like having TM, it has brought more positives to my life than I could ever expected. Everyone enjoy my special day. Cindy McLeroy
Re: [TMIC] OT - Question SSD to retirement payments
I took SSD early...for the full amount and it didn't change when I reached 65. In fact, I was awarded SSD at 55 years, then 2 later Medicare kicked in 2 months prior to onset of tm. I was not considering applying for SSD, but was persuaded by former SS attorney. I received SSD for skin condition, not tm. There is a most helpful artocle at website that a former member put together. He helped many with that article prior to his passing. Hope this helps From: CANDIS KALLEY cakal...@embarqmail.com To: tmic-list tmic-list@eskimo.com Sent: Wed, October 6, 2010 7:12:47 PM Subject: [TMIC] OT - Question SSD to retirement payments Question for anyone who collected SS Disability payments and then reached retirement age; did you payments change and how much? Also was the retirement age 62 or full retirement age? Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K.
Re: [TMIC] Fwd: Good Idea!
Have you gone to our TMA website? www.myelitis.org It is full of info and suggestions for more sites. janh From: Emily em...@telephonelady.com To: Patricia Cooley patticoole...@gmail.com; Janice Nichols jan...@centurytel.net; Tmic-list@eskimo.com Sent: Tue, October 5, 2010 9:21:00 AM Subject: RE: [TMIC] Fwd: Good Idea! Maybe putting Off Topic in the subject line than people who don’t want to go off topic can hit the delete button and that way both groups of people can take advantage of this wonderful source of TM information. As I said, I am new and both my husband and I are like sponges right now trying to get as much information about TM as possible. We want to hear the good things and the bad things that are associated with this disorder. I pray that everyone here that suffers from TM is someday cured but until then I believe we need the support of each other to get through the tough times. Emily From:Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Tuesday, October 05, 2010 10:05 AM To: 'Janice Nichols'; em...@telephonelady.com; Tmic-list@eskimo.com Subject: RE: [TMIC] Fwd: Good Idea! I COULDN’T AGREE WITH YOU MORE, JANICE. MOST OF OUR POSTS ARE ALL ABOUT TM, BUT I PERSONALLY ENJOY THE BREAK TO DISCUSS OR READ ABOUT OTHER TOPICS. PATTI From:Janice Nichols [mailto:jan...@centurytel.net] Sent: Tuesday, October 05, 2010 8:34 AM To: em...@telephonelady.com; Tmic-list@eskimo.com Subject: Re: [TMIC] Fwd: Good Idea! It is about TM - 95% of the time. But, as we get to know each other, these discussions, I feel, add to the interest of the website. Many with TM are closed in much of the time and would like to be able to discuss different topics as an outlet. We are all friends here, and friends do not always talk about 1 topic, they vary the topics. If you wish to, you can just delete these few discussions. But, remember, it is also an emotional/mental outlet for us all and that is also why the website is here. It is good for us to have other things on our minds besides TM, although that is the main topic here. We hope you will contribute to all discussions. Janice From:Emily Sent:Tuesday, October 05, 2010 2:50 AM To:Tmic-list@eskimo.com Subject:RE: [TMIC] Fwd: Good Idea! Is this the right forum for this discussion? If it is, how do I remove myself from the TMIC list? I get enough of this kind of email from other sources and really don’t want to see it here when this is a Transverse Myletis discussion list. I’m new here and I’m sorry for feeling this way but I thought it was going to be about TM. From:Dalton Garis [mailto:malugss...@gmail.com] Sent: Tuesday, October 05, 2010 12:42 AM To: bgunny7...@aol.com; Tmic-list@eskimo.com Subject: Re: [TMIC] Fwd: Good Idea! Let’s be clear: Those persons who destroyed the Twin Towers in my City while I watched, were NOT MUSLIMS. They had twisted things like a New York Pretzel to have it do what they wanted of it—taking things out of context and making a god out of an evil and corrupt leader who signed off on killing the innocent. Their motto was “Kill them all and let the Lord sort them out.” Shall we ban Christian churches all over Europe because the Germans were Christian? Shall we ban temples in the Far East because the Japanese were Shinto Buddhists? There have been 13 years of war for every year of Peace since the Advent of His Holiness Jesus. Shall we ban Christian worship? Let’s sort it out in our minds! Forever man has committed the most atrocious of acts in the name of their religion. But we see that it is because there is too little true religion today, not too much, which is the root cause of so many of our problems, in our streets and in our skies. No: It is because those murderers knew too little of the Qur’an that they committed such evil, not too much. They knew nothing of the Qur’an or Islam in the Name of which they killed so many. I say, if people want to sincerely worship God, let them. There is too little of this, not too much. Dalton From: bgunny7...@aol.com Date: Mon, 4 Oct 2010 16:04:09 EDT To: Tmic-list@eskimo.com Subject: [TMIC] Fwd: Good Idea! Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 4 Oct 2010 13:04:45 -0700
[TMIC] AOL........
Dear tmfamily, I have deleted every piece of mail since 9/16, as I have spent the last 2 weeks in the hospital..I fell the night of 9/16, went to hospital 9/17 had surgery 9/18 and went to rehab 9/19. The surgery placed pins in my rigtht ankle which I broke on both sides. Am home as of Sat 10/2 and most happy to be hereI'm tired and only moving by wheelchair which will be replaced by scooter next week. I deleted more than 1700 emails, which included all from youall...I'll catch up with what's going on as I gain strength. This isnot allbad news. I've not shared what's been happening to me since Feb...at that time I had an illness, not flu,but flu-like. My doc said it most likely was a virus that would wear out in time. I was down long enough that I began to lose some of my mobility. On the other hand I began to regain feelings that hadn't been there since tm came to stay (19996). I wondered if the pains I began to have were there all along, but I couldn't feel them. As I lost more mobility, I came to depend more and more on my 4 prong and my walker. My walker was part of reason I broke my anklethat and my clumsiness!! With rehab I have begun to regain the strength I'll need to become a member of walking wounded again. Home Care, esp.p.t., will continue for at least next 60days. This is all for now, it's taken two sessions to get this written..later... janh
Re: [TMIC] My first Grandchild
Congratulations!! You'll have a ball, you can keep 'em, spoil 'em and then send 'em home to the parents Grandchildren are such a blessingthey come at a time when we can enjoy every minute, we're past the stressful years that we experienced when our own kids were small...in other words, we couldn't send our own kids home when we'd had enough! Enjoy!! Love,jan From: Lori Biehler lbieh...@earthlink.net To: TMIC tmic-list@eskimo.com Sent: Sun, September 12, 2010 8:22:50 PM Subject: [TMIC] My first Grandchild
Re: [TMIC] Medications
I applied when I was +/- 55 and when I finally got it, I was given the amount I would get at full retirement...and this was before tm, for another immune problem. My 2¢ janh From: Dalton Garis malugss...@gmail.com To: Barbara Alma balmat...@aol.com; jcs...@yahoo.com; tmic-list@eskimo.com Sent: Fri, September 10, 2010 5:28:21 AM Subject: Re: [TMIC] Medications Since disability payments are based on SSA quarters reported; Some of us, who only got good jobs later in life, will not get very much at all if we go on disability. Dalton From: Barbara Alma balmat...@aol.com Date: Thu, 09 Sep 2010 23:05:51 -0400 To: jcs...@yahoo.com, tmic-list@eskimo.com Subject: Re: [TMIC] Medications Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 9 Sep 2010 20:06:14 -0700 John, If I could have continued working after TM I would have. It does take a high hit on your finances when you stop working and go on disability. It's great that it is there if need be, but in my mind, nothing beats working until you are ready to stop by choice. The doctor may however, feel that it is taking a heavy toll on you, which if it is, then it is something to consider. Hugs, Barbara A in Auburn CA -Original Message- From: john snodgrass jcs...@yahoo.com To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Sent: Thu, Sep 9, 2010 1:40 pm Subject: Re: [TMIC] Medications I am going to fight this thing as long as i can without stoping working. if i go on disability i will get @ 1400 a month if i am lucky. thats opposed to the @3000 i get working. still paying for my home. From:Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; Janet Dunn j.d...@shaw.ca Cc: transverse myelitis tmic-list@eskimo.com Sent: Thu, September 9, 2010 4:09:59 PM Subject: Re: [TMIC] Medications I have stopped going to my neuro. If there is a change, or something I don't understand, I will go back. He just did not have anything new for me - either meds or advice. My meds now come from my family doctor - who was right with me all the 9 weeks in the hospital calling in specialists for each problem that developed. Also, my other meds come from my Pain Management Doc who has been very helpful. At this point, I really don't need a neuro. John, why not disability? You are in pain quite a bit. I don't know how old you are, but I could understand doing it. Janice From: john snodgrass mailto:jcs...@yahoo.com Sent: Thursday, September 09, 2010 2:57 PM To: Janet Dunn mailto:j.d...@shaw.ca Cc: transverse myelitis mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Medications it really bothers me to hear of these instances of people not getting to the Dr or having to travel vast distances and wait times when I can go to my family Dr on a whim and my neurologist works at the same place as my sister-n-law and is always asking about me and making sure i have appointments every 3 months. however,,going to the Dr doesnt make me any better than i would be if i didnt go at all now. I just get my scripts on time and they watch for other things i reckon. (depression talking) as for working,my boss and superintendant allow me to work but keep suggesting that i go on disability. so does my Dr's. one of my Dr's is a senator in this state and told me today that should i ever not be able to go on that he would go to bat for me. thought that was interesting. I still dont understand why a dr is a senator or why is a senator is a Dr. His name is Ron D Stollings as for hydrocodonei read on one of the med-sites that if you take 2 tylenol with the hydrocodone that it will do better than either one of them by themselves.So I did,and it does. then you have the extended use of acetaminophen effect that might eat your liver or something. Pill time,,,bye bye. From:Janet Dunn j.d...@shaw.ca To: transverse myelitis tmic-list@eskimo.com Sent: Thu, September 9, 2010 10:59:59 AM Subject: [TMIC] Medications Hello to all I find it very interesting the number of us that are on or have taken hydrocodone, especially when it is “said” that opoids do not help with the pain of TM For me personally, I wouldn’t make it if I didn’t have a member or two of the hydrocodone family in my drug repertoire. I take 20mg or 40mg of long acting HCL in the morning, depending on the legs, and have perocdan as a filler for the day. I also take Lyrica, Effexor, Wellbutrin and baclofen. Even today, after 2 days of working 8 hours, and moving around and doing housework, I hurt. I want to lay in bed. But . . . just like the rest of us . . . duty and life are calling. I really appreciate the medication information simply because I live so far away from the nearest neurologist, and the wait time is up to a year, if we can get in at
[TMIC] Neurologist visit
So glad you found a good neurologist!! **Who knows, some Sunday morning I may show up in the pulpit wearing a pink tutu and a glittery tiara. **P.S. Is there any way we could know which Colby, KS?
[TMIC] Neurologist visit
EEK! Part of message was deleted by the computer or maybe the typist Question should have read: P.S.Is there any way we could know which Sunday to show up at the Baptist Church in Colby, KS So glad you found a good neurologist!! **Who knows, some Sunday morning I may show up in the pulpit wearing a pink tutu and a glittery tiara. **P.S. Is there any way we could know which Colby, KS?
Re: [TMIC] Iron Defensiency
Did you inform the folks who take your blood that you have tm? If I remember correctly, people with tm should not be blood donors. janh From: Mindy King we4king...@verizon.net To: tmic-list@eskimo.com Cc: Mindy King we4king...@verizon.net Sent: Wed, September 1, 2010 10:01:39 PM Subject: Re: [TMIC] Iron Defensiency Yes I donate blood and have to supplement before I do so they don't turn me away Mindy King we4king...@verizon.net On Sep 1, 2010, at 10:53 PM, Carol E wrote: Does anyone have iron deficiency as a result of the TM or the meds they are taking? Carol in Addison, IL
[TMIC] September Birthdays
HAPPY BIRTHDAY TO ALL YOU SEPTEMBER BABES!!!
Re: [TMIC] Fw: Delivery Status Notification (Failure)
Welcome, Jackiesorry we had to meet this way, but you've come to the right placeask us anything, someone will know what you're talking about. We're like snowflakes, none of us are the same but we share symptoms with one or the other in the group. As to your questions...fatigue is HUGE part of tm..when I first got here, someone said their doc said that 12 hours of sleep was necessary. hard to get 12 hours of sleep with pain waking you, so you need to find some med that will make te pain bearable. And the depression you spoke of..just think, you've gone from a 'workaholic' to a zombie (so to speak)..you've lost who you were and you have yet to come to terms with the new you. Many on here take an anti-depressantIt'll help you get past the early stages ofyour new life. If you haven't before, go to the TMA site www.myelitis.org and join (it's free) and you'll then get the newsletter. Also the site has much useful info that may answer some of your questions. Again, welcome. janh Stillwater, OK From: jack...@att.blackberry.net jack...@att.blackberry.net To: TMIC tmic-list@eskimo.com Sent: Tue, August 31, 2010 10:16:04 AM Subject: [TMIC] Fw: Delivery Status Notification (Failure) Note: Forwarded message is attached. Sent via BlackBerry by ATT -Original Message- From: Mail Delivery System mailer-dae...@smtp17.bis.na.blackberry.com Date: 31 Aug 2010 04:22:07 To: srs0=flihoc=qe=att.blackberry.net=jack...@srs.bis.na.blackberry.com Subject: Delivery Status Notification (Failure) The following message to listrequ...@eskimo.com was undeliverable. The reason for the problem: 5.1.0 - Unknown address error 550-'5.1.1 listrequ...@eskimo.com... User unknown' Reporting-MTA: dns; smtp17.bis.na.blackberry.com Final-Recipient: rfc822;listrequ...@eskimo.com Action: failed Status: 5.0.0 (permanent failure) Remote-MTA: dns; [204.122.16.69] Diagnostic-Code: smtp; 5.1.0 - Unknown address error 550-'5.1.1 listrequ...@eskimo.com... User unknown' (delivery attempts: 0)
Re: [TMIC] lLoss of Proprioception
I bet she would have carried you across the lawn if necessary. it's amazing what love our kids shre with us.. From: fr...@franksheldon.com fr...@franksheldon.com To: Laura Beaudin laura.beau...@gmail.com; fr...@franksheldon.com Cc: bobby jim elbobber...@earthlink.net; kimr1999 kimr1...@bellsouth.net; Rev. Craig Crossman revcross...@gmail.com; tmic-list@eskimo.com Sent: Sun, August 29, 2010 2:14:16 PM Subject: [TMIC] lLoss of Proprioception Let me tell you, My daughter was married on July 31- It was a fantastic event. Abby is in Law School, Will is doing a MD, PhD program which costs nothing for him, Oh and he gets $20K each year to help him get by. They were married on an island in Lake Muskoka, Ontario, Canada, and the Sun was out and shining on us. But I was unable to tie my bow tie. My left hand was unable to function. I couldn't feel the tie with my left fingers! I didn't know where my fingers were. Next I realized that I'd need help walking my daughter down the aisle. The rocky, grassy lawn was my walking challenge. I hadn't realized what I was getting myself into when I stole the heart of her mom. F
Re: [TMIC] Symposium/Dallas Sept 24-26
Gee, wish I were going.(I live only 5 hours from Big D).Frank and I went to the first one in '99 and it was really great to meet the folks I talked to regularly. It was particularly heartwarming when I had stepped up to visit with two gals who I recognized from things they had said...and as I started to introduce myself one of the gals said, I know who you are, you're janh! So great to see folks in person!! You'll have fun, and also learn bunches, which of course you'll have to share! And to get to have Q A session with the likes of Doug Kerr et al, is priceless!! Enjoy!! and know I'm there in spirit! janh Stillwater, OK From: L T CHERPESKI cherp...@msn.com To: TMIC-LIST tmic-l...@eskimo.net Sent: Sat, August 14, 2010 3:34:28 PM Subject: [TMIC] Symposium/Dallas Sept 24-26 I'm just throwing this out there. Are any of you planning to go to the upcoming Symposium in Dallas? I had a doctor appt yesterday and took a copy of the agenda to my doc. He actually sat there and read the info, smiled and was very impressed that this was being offered and that I plan to attend. I'm due for my Rituxan infusions and he said I could hold off having them, just in case some of the doctors have come up with a better/different plan. I realize how fortunate I am to have a doctor who listens and is open to new ideas. Re: the Symposium - I do know that Louise is coming clear from Australia! Looking forward to meeting as many of the TM family as possible. Linda (Eagle, ID)
Re: [TMIC] Fact Sheet on TM
My husband and I carry updated meds list with us at all times, for each of us, plus a copy to hand to the doctor. I also wear two medalert bracelets with diabetis and tm on both plus meds I'm allergic toneed to wear two cause I'm allergic to antibiotics Thank goodness they mow make medalert bracelets that look like jewelry as well as serve a purpose! also, somewhere I read that the medalert must be on your left wrist as that is where medics are trained to check. janh Stillwater, OK From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sat, August 7, 2010 2:15:28 PM Subject: RE: [TMIC] Fact Sheet on TM Great idea for everyone, TM or not. When we do Medicare benefit counseling that is one thing we ask people to bring. Of course there are some who still bring in the shopping bag full of pill bottles! From:CANDIS KALLEY [mailto:cakal...@embarqmail.com] Sent: Saturday, August 07, 2010 10:41 AM To: tmic-list Subject: Re: [TMIC] Fact Sheet on TM Patti, you may also want to make a sheet on all the meds you are on. Also, the vitamins and supplements that you may be taking. I keep an Excel spreadsheet so that I can change dosages and add or delete meds as needed. I also list the dates of start/end, plus the Dr. info. This is much easier as I have found that on every visit, the questionaire asks for current meds. This way, I print the list before the visit and just say See attached. Much Much easier! Candy K. - Original Message - From: Patricia Cooley patticoole...@gmail.com To: Rev. Craig Crossman revcross...@gmail.com, tmic-list@eskimo.com Sent: Saturday, August 7, 2010 11:22:15 AM GMT -05:00 US/Canada Eastern Subject: RE: [TMIC] Fact Sheet on TM THANKS SO MUCH FOR THIS INFO. SINCE I MOVED SEVERAL MONTHS AGO, I WILL NEED TO CONNECT WITH A NEW PCP, NEUROLOGIST, AND UROLOGIST VERY SOON. SINCE THIS IS A SMALL TOWN, I WAS AFRAID THEY WOULD NOT BE AWARE OF TM. I PRINTED IT OFF AND WILL BE SURE TO TAKE WITH ME AT MY FIRST APPOINTMENT. THANKS AGAIN. PATTI - WISCONSIN From:Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Friday, August 06, 2010 3:08 PM To: tmic-list@eskimo.com Subject: [TMIC] Fact Sheet on TM Many of you have probably already read this Fact Sheet. I find it helpful to give any physician or PA or NP that is my primary care provider since 90% of them have no idea what TM is, and it seems many don’t want to take the time to find out about it as well. What is even more aggravating is that my new neurologist (the only one within three hours travel) has no experience with it either. So she’ll get a copy as well. http://www.ninds.nih.gov/disorders/transversemyelitis Rev. Craig Crossman First Baptist Church 615 W. Webster St. W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org Colby, KS 67701
[TMIC] Has anyone heard from Saroj?
I, too, have wondered about her.she was havng health issues and also some kind of problem with her housing or some such. I hope someone knows something positive about her!! jan - Forwarded Message From: Cindy McLeroy cindymcle...@socal.rr.com To: tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Mon, August 2, 2010 2:15:20 AM Subject: Re: [TMIC] Has anyone heard from Saroj? Barbara, I saw her name also and wondered if anyone has kept in contact with her. I was concerned because of all the problems she was having in India. If anyone knows please update the whole list. She was a great asset with all her knowledge and kindness. I believe she was a Doctor and had practiced in New Zealand or some place like that. Cindy in SoCal - Original Message - From: Barbara Alma To: tmic-list@eskimo.com Sent: Sunday, August 01, 2010 10:39 PM Subject: [TMIC] Has anyone heard from Saroj? I have often thought of our dear friend Saroj and haven't seen anything on list from her or regarding her in a really long time. Perhaps I missed something during an absence. If anyone knows anything, can you please let me know. I saw her name on the birthday list and thought of her once again. For those who don't know Saroj, she was a very knowledgeable and gracious lady from India who was a big part of the TMIC a few years back. Hugs, Barbara A in Auburn CA
Re: [TMIC] I am fine
Dear Saroj, It is so wonderful to hear from you!! I'm sorry you've had a tough legal battle that took so much out of you. I remembered that you were having to deal with something besides your health, but couldn't remember the details. Glad you won your case and now maybe you will have some time for yourself!! Please keep us informed from time to timewe miss your input! Hugs, janh Stillwater, OK From: Saroj Kumari sarojkumar...@gmail.com To: tmic-list@eskimo.com Sent: Mon, August 2, 2010 2:40:32 PM Subject: [TMIC] I am fine Hello friends, I have just survived a 6 years long drawn legal battle with our tenant .Finally won the case only a couple of weeks ago.I was very depressed during this period.As regards my transverse myelitis,I have increasing walking disability can't do without my walking stick when I go out to do my outdoor tasks.I have well controlled diabetes and hypertension.I am very sorry for I have not been able to write to the very dear members of the list. Saroj
[TMIC] August Birthdays
Happy Birthday August babies!! and thanks to Barbara for keeping the record of birthdays for us! Happy Birthday to the August kids! Please send any additions or corrections to tmic-l...@eskimo.com. 8/1 Peachi (pkeene2...@aol.com) 8/1 Cindy McLeroy (cindymcle...@socal.rr.com) 8- 1 Stacy Firth (safi...@dow.com ) 8-3 Larry Throne (lbthr...@hotmail.com ) 8-10 Sean Indiveri (sindiv...@hotmail.com) 8-11 Raylene Gökeri (mrs_gok...@yahoo.com 8-11 Michelle Maricic (mmari...@aol.com) 11th August 1950 Dalida S. Ortiz de Garcia (py...@yahoo.com) 8-16- phyllisj...@webtv.net 08/17 Sandra (Harth) Brassil (sbras...@aol.com) 8-17 Kim (jnks...@huntel.net) 08/18 Corinne Cookie Knox (horsecookies...@wmconnect.com) 8-19 Saroj (sarojkumar...@gmail.com) 8-21 Barbara H. (jbarbara...@gmail.com) 8/22 - Debi (debdo...@aol.com) 8-23 Cole (neilandwe...@rogers.com) 8-29 Lisa Baker (Judy's daughter) (judybak...@juno.com 8-29 Kathleen (kkar...@dacor.net ) 8/30 Lynn Pouliot (lpoul...@cox.net) 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
Re: [TMIC] TM Info request
Hey Craig, Please know that I've got several years on you.I don't want you to think you get a prize for age! -:) janh P.S. I, too, was struck at age 57...that was 14½ years ago. From: Rev. Craig Crossman revcross...@gmail.com To: Patricia Cooley patticoole...@gmail.com Cc: tmic-list@eskimo.com Sent: Mon, July 26, 2010 11:09:43 AM Subject: RE: [TMIC] TM Info request I was diagnosed almost exactly a year ago. I had gone to the ER because someone at church noticed I was dragging my left leg and thought I might be having a stroke. No stroke, but after all the tests were done my doctor came in to tell me about TM. I was fortunate because he is well-known as one of the best neurosurgeons in the Pittsburgh, PA area. I haven’t had a lot of mobility issues until this summer. Like you I can get around the house OK but I do use a cane in public. My balance is off enough that I tend to lose it quite often. It wouldn’t do for people to think the new Baptist preacher had been nipping at the bottle! Over the last year there has been a marked decrease in feeling and function in my hands. I have a lot of trouble even picking up a pill. Eleven years ago I broke my back in an accident and have a partial spinal cord injury, so even on the best days I only have 20% nerve function from the waist down. The doctor could not rule out that the injury sort of made me more vulnerable to something like TM. One thing… I have read in these messages people talking about “banding” and it seems they know where on the spinal cord the damage is. What is banding? I never asked my doctor about where I am most damaged but I am not sure it would make any difference to me if I did know. I also know I am older than most (57) to be diagnosed for the first time. I’ve had a couple of messages from Gunny. And I read about his friend who said “It’s about ability, not disability.” Actually, I have never thought of myself as disabled. I just have some health issues which means I must do things a bit differently than others. But so far it has not been a big deal. I am just stubborn enough to refuse to let it get to me. From:Patricia Cooley [mailto:patticoole...@gmail.com] Sent: Monday, July 26, 2010 9:17 AM To: 'Rev. Craig Crossman' Subject: RE: [TMIC] TM Info request WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR QUESTIONS, SO DON’T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER. FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM FORTUNATE IN THAT WAY. HEAT DOESN’T BOTHER ME AT ALL, BUT THAT MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT OF WALKING. IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND TO MAYBE INCREASE IT. YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO. GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS. GOD BLESS AND TAKE CARE. PATTI - WISCONSIN From:Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: Sunday, July 25, 2010 12:26 PM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] what is banding
Gerry, Banding was described to me as the place where the nerves 'lost' contacti.e., tm struck me at the t8...(bra line)and banding was around my body at that spotthe banding was the nerve endings firing in attempt to reconnect...(I always thought it was the bra God, getting even with me 'cause I hated bras!!) Hope this helps, janh From: Gerry Surette suret...@sympatico.ca To: i.whidd...@sky.com; tmic-list@eskimo.com Sent: Sun, July 25, 2010 4:31:08 AM Subject: [TMIC] what is banding Iris. I would like to know what banding is and how it relates to the body thanks gerry montreal
Re: [TMIC] TM Info request
Welcome Craig, Hope that first name basis is ok with you, cause we're family here. Sorry we had to meet this way, but you're lucky to have found this new family!! We, like no one else in your life, know what's going on with you..and that means a WHOLE bunch to all of us! No matter how you try to tell your loved ones or friends what's up, they can never fully understand, and might think you're making it up! Here, feel free to ask anything you might wonder about... as snowflakes, no two of us are alike in symptoms etc, but someone will be able to relate to one question while another can answer something else. As for your question about temperature control, the only thing my nuero told me when he let me come home was that my temp control would never return. I was a complete at the t8 level (about the bra level) and in the summer I can only sweat from t8 up...I can't stay out in heat for long, heat stroke is a threatthen in cold weather, I'm always cold above that spot..yet, my legs feel like fire at the bone level, while freezing on the outside..known here as the freeze/burning feeling. Enough of my babbling, just ask whatever is bothering you and someone will be able to help. P.S. I live in OK so I'm well aware of the heat you have in KS!! Also you must listen to your body and not overdowe all try in the beginning to be who we were before, but that isn't feasible..so rest as needed, that's your new reality. I'm not saying you'll not get some improvement.at 14+ I still get some 'new' feeling. janh Stillwater, OK From: Rev. Craig Crossman revcross...@gmail.com To: tmic-list@eskimo.com Sent: Sun, July 25, 2010 12:25:39 PM Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am “new” to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won’t see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] about Jude (Hey Jude)
Patti, Thanks for the update on Jude! I would like for you to let her know that all of us are praying for her! (and David)! They've had more than their fair share.please, give them my love! Thank goodness you can go see her! janh From: pjv1...@chartermi.net pjv1...@chartermi.net To: tmic tmic-list@eskimo.com Sent: Wed, July 21, 2010 8:23:24 PM Subject: [TMIC] about Jude (Hey Jude) I talked with Jude's husband, David, this evening after receiving a message from him that she is in a hospice program. David said she went to a hospice camp for ten days and came home feeling better last week. Then she woke up during her first night home with a headache and has gone down hill from there. David said Jude has not been talkative lately, but I asked if I could visit with her tomorrow just to sit with her. I'm planning to visit in the afternoon. The last time I heard from Jude was the message that she sent Does anyone remember Jude? Patti - Michigan
Re: [TMIC] I'm back!
Glad you're home and your dreams were fulfilled...it sounds to me like your real purpose was to meet Christa, which in turn helped you! What a wonderful adventure! So glad you shared! Welcome home! janh Stillwater, OK From: j ra rumc...@hotmail.com To: Transverse Myelytis tmic-list@eskimo.com Sent: Mon, July 5, 2010 8:40:43 AM Subject: [TMIC] I'm back! Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] Anniversary
Naomi, My thoughts and prayers are with you! janh From: ladyno...@aol.com ladyno...@aol.com To: tmic-list@eskimo.com Sent: Fri, July 2, 2010 3:51:19 PM Subject: [TMIC] Anniversary Today, July 2, marks the five-year mark of being stricken with Transverse Myelitis. I am celebrating it by being bedridden, nursing two pressure sores. Have you ever tried lying on one side, for days at a time? It causes me to have claustrophobic anxiety attack , but it is quite necessary to avoid flap surgery :-( Have a Blessed Day, Naomi
[TMIC] July Birthdaus
HAPPY BIRTHDAY, July Babies!!
Re: [TMIC] 2010 - Here we go again!
Roger, Sorry to hear that things have gone south..but thank goodness your doctor worked to find what was going on with you, and shared your problems with other docs till they found what was happening! I've tried taking Imuran two different times and my system can't tolerate it! (Like Grace, I cough that pill up almost immediately)...wish I could take it!! I hope that you're beginning to regain some functions...keep us up to date with what's going on with you! WE CARE!!! janh Stillwater, OK From: j ra rumc...@hotmail.com To: r.c.pr...@verizon.net; Transverse Myelytis tmic-list@eskimo.com Sent: Tue, June 29, 2010 7:33:08 PM Subject: RE: [TMIC] 2010 - Here we go again! Hey Roger, Hang in there buddy! Just when we think things can't get worse for us TMers, TM throws us a curve ball. I took the opportunity to read up on this disorder and I am in shock that there are so much things that are always going to be heading our way because of TM. My thoughts and my prayers are with you friend...always Regards, Jeron From: r.c.pr...@verizon.net To: tmic-list@eskimo.com Date: Tue, 29 Jun 2010 17:15:28 -0700 Subject: [TMIC] 2010 - Here we go again! Here it is almost the 4th of July, 2010, I haven’t written in a long time, and here I am again at a major turning point in my life. It all started in mid-February. While on vacation in Mexico, my right foot started hurting. “More fun and after-effects from my Transverse Myelitis,” I thought, and I resolved to see my neurologist when we got home. I had recently stopped a medication she had put me on for nerve pain that had horrible side effects and also had what seemed to be a spider bite on my right leg. “Something minor,” I thought. By the time I got to the doctor, my right foot started to swell. She had an ultrasound done of the blood vessels in my legs to check for blood clots, and then my left foot and ankle started to swell. Then my right hand went numb and I lost use of two of my fingers. As pain and swelling increased, I went through five MRIs of my spine and brain, a spinal tap, other miscellaneous tests, and handfuls of pills (mainly pain pills that just made me sicker). After much delay, my doctor sent me to an MS specialist in Seattle, who confirmed that my doctor was, as she had said before sending me, “clueless”, and that she (the doctor in Seattle) didn’t know what it was either. By this time I started having muscle loss in my right hand and was generally losing weight all over. Finally on the 7th of June I was sent to a doctor in Walla Walla who specializes in peripheral nerve disorders. He did a nerve conductivity test and diagnosed me as having a rare autoimmune disorder called Mononeuritis Multiplex that attacks peripheral blood vessels and nerves. I am now on steroid IVs once a week and am taking a drug called Imuran which suppresses the autoimmune system that should stop the progression of the disorder. This will probably take a long time and may not reverse all the damage. I may have to be on Imuran for the rest of my life. For now it’s just wait and see. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.
Re: [TMIC] The Sweats
Janet, My neuro told me that my temp control would never come back, and that I would only sweat above where I was attacked, t8. And, he was correct!! That was the only thing he told wouldn't be repaired and after 14½ years I'm a believer!!I was warned not to stay out in heat for long periods as heat stroke is possible when your whole body can't sweator as a lady, perspire!! janhFrom: Janet Dunn j.d...@shaw.caTo: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.comSent: Fri, June 18, 2010 12:56:45 AMSubject: RE: [TMIC] The "Sweats"Hi JaniceAbout the sweats: I had them so bad that they would make me sick to my stomach, ready to pass out. I found that the heat could not go down, it could only go up – I mean from the waist up. I thought it was medication reactions, I thought maybe my kidneys were acting up. Then I realized that at 47 it could be “hot flashes”. I started taking Maca and low and behold, most of the problem has disappeared. However, whenever I get hot, or am too active, or in an uncomfortable situation, and sometimes for no reason at all, I will drip sweat – it runs down my back, my front, my face – yuck. But, like I said, for the most part the Maca takes care of the temperature issue. Don’t know where you are on the grand calendar of life, but I found that it sure helps for me. Whenever I feel the body heat begin to climb, I take some. Don’t know if it is related to my age, but it sure helps the temperature and the sweating.P.S. Ladies don’t sweat, they perspire! Ha Ha Ha!JanetFrom:Janice Nichols [mailto:jan...@centurytel.net] Sent: June 17, 2010 9:33 PMTo: tmic-list@eskimo.comSubject: [TMIC] The "Sweats"Would like a count of those bothered with "the sweats" - the really hot drippy sweats, even when in a relatively cool atmosphere. My doc calls it"disautonomia". It is the pits. Have it some in the winter, but it is really a problem in the summer. Anyone else, male or female, have thisproblem?Janice
Re: [TMIC] The Sweats
Glad I could helpit's amazing, this human body, and what it does or doesn't do!!Prior to tm I never thought what 'made' me do one thing or anotherbut since tm I've learned that I now have to make demands that I used to do without thinkinglearning to walk again was probably my first surprise-- that I had to tell my self to put one foot down and then the other, etc "Ain't life great?" one reason why laughter is best medicine..for if we don't laugh, we'll be crying! jan From: Janet Dunn j.d...@shaw.caTo: Jan Hargrove jmh1...@sbcglobal.net; tmic-l...@eskimo.net; Janice Nichols jan...@centurytel.netSent: Fri, June 18, 2010 10:11:04 AMSubject: RE: [TMIC] The "Sweats" Hi Jan Thanks for that info. I have been in a far infra red sauna and I definitely can “sweat” below my injury. When in the sauna even the calves of my legs can sweat and I didn’t even know that was possible. That is an induced sweat. When my body overheats naturally, it is only from the injury up, now that I think about it. That is very interesting – I never thought to pay attention before, but that explains why the heat feels like it is only in the top half of my body – I know that at work I sit with heavy socks on, two pairs of woolen slippers and a blanket on my legs, but the window wide open for a breeze as I am hot hot hot from the injury up. Thanks for bringing that to my attention. Funny how sometimes we never stop to think about the whole picture! Janet From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: June 18, 2010 8:01 AMTo: Janet Dunn; tmic-l...@eskimo.net; Janice NicholsSubject: Re: [TMIC] The "Sweats" Janet, My neuro told me that my temp control would never come back, and that I would only sweat above where I was attacked, t8. And, he was correct!! That was the only thing he told wouldn't be repaired and after 14½ years I'm a believer!!I was warned not to stay out in heat for long periods as heat stroke is possible when your whole body can't sweator as a lady, perspire!! janhFrom: Janet Dunn j.d...@shaw.caTo: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.comSent: Fri, June 18, 2010 12:56:45 AMSubject: RE: [TMIC] The "Sweats"
Re: [TMIC] How to deal with isolation
Ella, I wrote to Dan once, concerned for his safety.can't remember now what the occassion, but he never responded thus I decided he had left our website because it hurt him too much. I've not forgotten!! to this day I'll get something in the mail and I think I can't wait to share with Pam.then I remember she's not online anymore. I'm glad that you keep in touch with Dan, and let him know he's still in our thoughts!! janh Stillwater OK From: alle...@aol.com alle...@aol.com To: tmic-list@eskimo.com Sent: Sun, June 6, 2010 2:56:42 PM Subject: Re: [TMIC] How to deal with isolation I am 9+ years into my TM (paraplegic) and so miss my old self. I loved anything outdoors and my jobs let me do that also but that stopped after TM. Now thankfully I have great family and friends and I have to put them out just to get some quiet to do things I like like cooking, housework and reading. I choose to stay in most of the time now and during school I will tutor students but mainly it seems I am entertaining. And speaking of isolation, I speak with Dan (Montz) via computer and I feel he thinks we have forgotten Pam especially today being it is now 1 year since her passing and he occasionally reads our mail so if you could send him some encouragement I know he would appreciate it. Have a great day everyone.Ella
Re: [TMIC] How to deal with isolation
Deb, It seems to me you're doing great things!! Your pushing to do is so positive.. your hubby's understanding and support are so important..keep pushing for the smile to return!! I'd love to watch you at your martial arts workout!! I can just imagine what fun you make for your 'class' matesmy one daughter and 2 of her kids are black belts in ti kwan do (spelling?) which I've been to meets and I can see trying to get in to that. (HA!!) I'd be there to keep the folks laughing!!) Keep up the good work..and do your pressure-relieving talk whenever you need...we understnd!!! jan OK From: Deb Monteleone aiki...@optonline.net To: Towery, Ruben Dale rdtow...@southernco.com Cc: TMIC tmic-list@eskimo.com Sent: Sat, June 5, 2010 10:50:09 AM Subject: RE: [TMIC] How to deal with isolation Hi Ruben, Not sure how your upper body is, but I installed hand controls in my car. It was a wonderful feeling to know I can get up and go. Although the go part is still not so great, not too many places to go. I still work so it gets me there and I got a scooter to put in it. Compared to staying home all the time, it is great. Still miss all I used to do, but trying to go forward and find ways to at least feel I have some freedom back. I woke up two years ago today (just realized today is my two year anniversary) with numb feet, 5 days later up to waist, 5th day Primary care Doctor sent me to neurologist that day. My neurologist is a wonderful man (knowledgeable, friendly, returns calls and emails, sympathetic, funny). He diagnosed TM right there, sent me that day for 3 days of outpatient steroid infusions, then oral for a week, then after another week went into hospital for 5 days of steroids 4 times a day (at this point I could not stand or take a step, bladder and bowels weren't working either). Then rehab for almost 3 weeks. Just kept pushing after that. Now I walk with a cane (not in house) for short distance or scooter for longer. I still grieve for all that I lost, sports, kayaking, woodworking, gardening. Slowly I am working myself back to some of it. I pick a weed now and then, who knew weeding would be so enjoyable. Just purchased a stool with wheels and a footrest so I can try my lathe and some small wood projects (hope it works out). I am a black belt in Aikido, had been practicing for 18 years before TM. Every now and then I go to class and do the movements (not gracefully) and throw people around with a big smile on my face (one of the few moments that I am happy and feel like my old self). I tire quickly, rest, throw etc... For bike riding I got a three wheel bike, don't go very long but I am out there riding a bike which I so enjoyed. Going to a MS support group helped, oh yea, it was finally diagnosed that I had MS which caused the TM. As is this support group, it is nice to speak with people who really know how you feel, the MS support group is in person. My husband reads all these emails so he has a good understanding of what I feel and he knows it's for real since so many others have the same pains. He is a wonderful man on top of that, don't know where I would be without him! He even accepts and deals with the fact that I don't laugh or smile like I used to, I have gone within to try and deal with this pain and loss. I think I am slowly getting back to my smiling face. Keep moving forward, reach out to people, think out of the box as to how to enjoy some of the things you did, look for new things to do. Keep conversation with your doctor to try different concoctions of medicines. Cry when you need to, it is a great reliever. Sorry this is so long. I guess I needed to relieve some of my pent up thoughts. You are all wonderful, brave, kind and sharing people on this site, even though I don't write much, what I read re-enforces my sanity. Stay strong, feel better. Deb Long Island, New York
Re: [TMIC] banding
I mentioned earlier an illness that struck me in '04, a fever of unknown origin, for which they upped my prednisone dosage..my infectious disease doc told me when the granulomous (sp) in my liver was cleared that I could get off the pred, but my primary doc has kept me at 2grams ever since then. I've taken many dospaks of prednisone since 1984 for my eczema which is of course another auto-immune joy!! janh OK From: Dennis Rabalais drabala...@gt.rr.com To: tmic tmic-list@eskimo.com Sent: Sat, June 5, 2010 4:19:34 PM Subject: [TMIC] banding hi i've had banding sensation for about 3yrs into my disease. i had gotten tm in 2002. i'm interested in anyone that has used steroids 2 or more years after onset of tm. instead of banding I feel tingling in my feet.. maybe a little banding feeling. has anyone felt tingling? i cannot walk so i don't know if that feeling is my body and nerves trying to wake up, or what? dennis beaumont,texas
Re: [TMIC] Omega 3 and muscle convulsions
Dalton, I take 6000 units/day and haven't had any experience like what you're describing. Has your doctor confirmed this as a side effect of Omega 3? Sorry about your pain..hope you get some relief soon. I suppose I mean acute pain, as pain is part of this game...since the numbness went away, pain is with me every day. Keep on fighting janh Stillwater OK From: Dalton Garis malugss...@gmail.com To: Towery, Ruben Dale rdtow...@southernco.com; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 9:03:11 AM Subject: Re: [TMIC] Omega 3 and muscle convulsions My brother just informed me that there is a link between fish oil and nerve inflammations. I have a bad back even before TM mow it is a neon sign inviting any biologically active agent inside. I was without the fish oil for about 5 days because I had run out. No spells for 8 days. I got back on the omega 3—which I take for depression—and within a couple of days I got a convulsive spell lasting for 6 hours, the worst one yet. Then I awoke this morning and spent another two hours being alternatively as stiff as an oak plank to collapsing in a chair. Has anyone else heard of their being some kind of link between using high dosed of fish oil and exacerbating inflamations? Dalton Garis Abu Dhabi/New York
Re: [TMIC] Thanks
WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last
Re: [TMIC] Thanks
Rueben, I don't know how to explain 'going forward'..I was struck down 14+ years ago at 57 years of age. I was paralyzed from t8...so I had to learn to walk again. I think the key to my recovery was no one told me I wouldn't get better. When he released me from the hospital/skilled nursing, my nuero only told me one thing wouldn't return. That was my temperature control, I sweat only from shoulders up, and he was correct. Except in '04 I got a fever of unknown origin and with a week in local hospital, and a week in OKC hos- pital, I continue to have chills/sweats at strange timesnothing like it was, but another quirk in my health. Like tm, I'd never heard of a fever of unknown originguess that makes me unique, or strange or that my immune system works overtime fighting it self. Enough of me..for now, don't expect too much of yourself 'cause that'll make failure appear possible. Just take things slow...do something that you can share with your kids.they'll love to be a part of your getting better. I'm thinking positive thoughts for you. janh From: Towery, Ruben Dale rdtow...@southernco.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 5:40:25 PM Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet
Re: [TMIC] June Birthdays
Happy Birthday to all you June Babies!! and once again, thank you Barbara for keeping the birthday records!! janh Stillwater, OK
Re: [TMIC] Update
Team Hammond, Thank goodnesswhat a great message!! Please know how wonderful that makes your tm family! Continue your trip to return of strength and we'll keep you in our prayers..you know we have much to be thankful for, too..our Mike is up and running (or some such), In my opinion, your decision to get into the volunteer mode, has a lot to do with the strength you've gained through the power of prayer and the folks who were by your side through this long journey, the medics and the tmers. Again, thanks for keeping us informed. Please continue the same as time goes along. Hugs to the whole team! janh Stillwater, OK Hi, everyone, I would like to give you an update on what is happening. Last week I received the results of both my latest PET scan and CAT scan. I am now considered to be in remission. Yahoo!!. All of the prayers that you offered were heard. Now, I can look forward to putting my energy into getting better. I am now volunteering once a week at the Cancer Center where I received treatment. Now, it is as a worker for the American Cancer Society working with new patients. When you have “Been there, done that”, it is much easier to talk to someone about their concerns or questions. I am contemplating some other volunteer activities and also some work with my last employer as a volunteer. I do not have any more tests for several months, but will keep you informed of any changes. On behalf of all of “Team Hammond” (Mike, Jill, Joel and Janel ) I want to thank you for your thoughts, prayers, emails, calls and cards, they all meant a great deal to us. God bless each of you and we’ll be talking to you soon. All the best, and all our love, Team Hammond
Re: [TMIC] Anyone Remember Jude?
Hey Jude!! It's been quite awhile since you posted!! you must keep us updated as to how you're doing! I realize writing can get tiring for you, but a note once in awhile lets us know how 'things' are going! Glad to see your name pop up, your question if anyone remermbers Jude, was a hoot!!! janh Stillwater, OK From: Jude Hoops heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Wed, May 26, 2010 6:05:31 AM Subject: [TMIC] Anyone Remember Jude? Hello Friends-Old and New, I have missed you all so much! As like most of you, I have been battling TM and other illnesses like MS, with all of the problems that go with it. It is no fun...and that's not what kind of email this is intended to be. Sorry I still have no picture to post, but promise to look for a decent one tomorrow. I know I have one or two decent ones laying around.
Re: [TMIC] forgot to say that I'm home
Glad you're home safely! TM has made us change our way of thinking .we have to 'ready' ourselves to go and then rest (collapse) when we get back homebut it's worth it!! My biggest problem is that I think I can do whatever I've always done and then reality hits when I poop out early! Didn't mean to ramble.sorry that you had your bout with pneumonia, but glad you were able to travel. Your mileage makes my back hurt!! ;-) Hugs, jan From: Barbara Alma balmat...@aol.com To: tmic-list@eskimo.com Sent: Fri, May 28, 2010 6:35:01 PM Subject: [TMIC] forgot to say that I'm home I'm sorry that I forgot to tell you all that I arrived safely home late on Friday, May 21st. We managed to put 7608 miles on our van and enjoyed practically the entire trip. It really was a great trip, and was almost without incident. With regard to health problems: I fared really well, other than a bout of pneumonia and a night in the hospital in Colorado. This sounds bad, but I have gotten pneumonia at home many times. It was worse getting it on the road, as it has taken me so much longer to recuperate than usual, so that's the worse part. It also made the last week and a half of our trip a bummer, without much fun. No gambling in Vegas since I couldn't handle the smoky casinos, but that probably saved me some money. We managed to see 2 shows though. I had about 7 days out of 46 of laying in bed, resting my back overall. Not too bad, but they were spread out. We managed to see family and friends that we hadn't seen in several years, did things that we didn't know existed, and went to states that we had planned on visiting, but didn't really know when we'd do it. All this because our god-daughter planned her wedding. So, right after this, I'm going to call her and thank her for planning her wedding and for us having the opportunity to push my inner thoughts into planning this wonderful trip. She really didn't have any awareness of this when she planned it, but my mind started to wander, I only wondered if I could handle it. I wholehearted recommend to anyone who really wants to do any kind of a journey, whether it's a days drive or whatever, to give yourself the chance. We stopped often, whenever I felt that I needed to, sometimes every hour, sometimes in 2 hours, but I did it. We've done short trips in the past, and I did much better this time as it allowed for more relaxation since we had more time. Hugs, Barbara A in Auburn CA
Re: [TMIC] Newly Diagnosed and Need Guidance
Ruben, Many of the things you mentioned are things many of us have dealt with I'm not certain that anyone has mentioned them happening before tm, with the exception of the back pain. First, let me welcome you to our tm family. Any question you might have can be answered by someone.like snowflakes, no two of us are alike, thus none of us have a mirror tm experience, but someone will relate and can help. Let me address your depression: you've lost who you were and what you could once do and be.thus your depression. Many of us have been put on meds for depression...that's good, because it allows you to focus on what you need to do to get your 'new life' in order. I'd think that your emotional outbursts, anxiety, and paranoia go along with depression Next, most of us suffered with short term memory problems in the beginning..I did a lot of crossword puzzles to help me 'pull' the words out of my memory bank, or if I was writing to someone, and there was a word or phrase I wanted to use I'd sit and concentrate on what I was trying to say until it came to me and then I'd continue writing. If you haven't joined the Transvers Myelitis Assoc. you should. It's here to serve us and to help us learn. Joining is free and you'll get the Newsletter and a member- ship list. As for financial help, I'm unaware of that.I got Social Security Disabil- ity thus am on Medicare which covers much of my bills. I don't know how tm has affected you, so I don't have any idea how disabled you are. Like, are you paralyzed, unable to work, etc. You would have to look into that for yourself and there's a wonderful help for applying on the TMA website. I hope I've been of some help.remember, we're all in this together and you can come to us with any questions you have. janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, May 28, 2010 6:16:09 AM Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL
[TMIC] OT that applies
For Mothers' Day, my daughter gave me a book and related cup. The message on the cup is this: Life is all about how you handle Plan B. Plan B.it's the test of true character. I think this is appropriate to our most recent discussions. My ¢ janh
Re: [TMIC] tmic-alive
Your attitude is great, too! counts alot! janh From: rn11...@yahoo.com rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Fri, May 21, 2010 2:02:05 PM Subject: [TMIC] tmic-alive Hi, I was not fit and not active outside of work,but I still miss my life before tm.Just being without the constant band around my trunk,not being numb (for the most part) from T4 to toes,able to walk more than 50 feet without my strong leg giving out. I worked at a well paid job,drove a car,had a life. Now I'm stuck in the house unless someone takes me out. Then I suffer for days after going out. I miss my old life a lot,even after almost 15 yrs. But,I have family that love me,friends and neighbors that care. Plus,I get to read as much as I want-about 4 mystery novels a week. I also can watch tv,eat,and sleep whenever I want. I'd say my life is mostly pretty good. I know it could be a lot worse. Cheryl in Easthampton,MA.
Re: [TMIC] alive
Grace, have you looked into therapeutic horseback riding? We've two such stables in our small town. I think it first was shown to help MS patients, but now they're using for many disabilities. Our schools use them for students which shows it must be worthy or schools couldn't afford to send them! One of our members volunteered at a place in Australia, I think! His name will come to me just as I press send!! (I remember his wife is Mavis) TM/SR moment!! janh ***or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
Re: [TMIC] alive
His name is Errol! Gunny tried to help me, but when I told him his guess was wrong, Errol popped out of his hiding place. Please forgive me, Errol, and tell Mavis hi! janh From: Jan Hargrove jmh1...@sbcglobal.net To: Grace M. grace...@gmail.com; tmic-l...@eskimo.net Sent: Fri, May 21, 2010 6:22:54 PM Subject: Re: [TMIC] alive Grace, have you looked into therapeutic horseback riding? We've two such stables in our small town. I think it first was shown to help MS patients, but now they're using for many disabilities. Our schools use them for students which shows it must be worthy or schools couldn't afford to send them! One of our members volunteered at a place in Australia, I think! His name will come to me just as I press send!! (I remember his wife is Mavis) TM/SR moment!! janh ***or ride a horse. Have I adjusted? For the most part, yes, but as I mentioned there are still some very dark days. We're all human. Gracie
Re: [TMIC] alive
Janet, I've been with tm for more than 14 years, and I've learned that feeling like I wasn't doing what I could before, or that I was imposing on my friends is a fallacy!! My friends insist I continue playing cards, etc...just today one of the ladies wanted to make up for the times she couldn't 'do her turn' and I was so glad I could tell her that she didn't owe back, using their kindness to me these last years as an example. Course, as we all are now in our 70's, and others are having various prob- lems I tell them I just got more attention than any of them will get! Laughing at our frailties helps with the pain.it's like thumbing your nose at tm!! My 2¢ janh From: Janet Dunn j.d...@shaw.ca To: tmic-l...@eskimo.net; tmic-list@eskimo.com Sent: Fri, May 21, 2010 11:10:41 AM Subject: RE: [TMIC] alive What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years – to get back to where I used to be before being struck with TM – was that either way, TM or no TM – I could not regain my former self. It would be like suddenly becoming 30 again. It isn’t going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another, just as a matter of course of growing older, and what that in itself can do to the body. But, Jeron, I do totally get where you are coming from. And I wish I could go scuba diving today too – especially since there is a heavy snowfall warning in effect for my area. On May Long weekend no less! Janet
[TMIC] alive
It appears to me that you're beating your marriage to death as if your wife wouldn't be there for you if you let her! Going off your meds all at once, cold turkey is dangerous!! Get to a doctor and get some help!! This isn't something any of us would choose for ourselves or our familiy, but it happened, so get over it! Find something that makes you laugh, and get to laughing and start living with a positive attitude. The adage laughter is the best medicine is true, real amd important for those whose life has been altered. I know I don't sound very sympathetic, but we've all been where you are, and we've made the choice to live to the best we can...you can make that same choice! and have you asked your wife if she wants to be a part of life? Your letter sounded like it's all about you, without letting her in, meanwhile things are worse for her than for you because it appears you chose to shut her out!! Sorry if this letter sounds tough, or mean or whatever, but I'm on this tm list to get support and to sup- port those who want to get better. I pray that you'll get help immediately!! janh Have anyone of you ever wondered what it would be like without this? I've put so much pressure on my family that I now know what loneliness feels like. I haven't seen my wife for months and I prefer it this way. I have so much pain and it's mine and mine alone to bear. I have fibromyalgia, vasculitis and TM.and I just quit pain meds one week agojust to see what it all feels like again. I'm suffering from withdrawal symtoms of valium, nuerontin, cymbalta and seroquel all at the same time. I'm just about given up hope.what's the use...I can't even feel the earth underneath my feet anyway, with or without them. I've decided to live until death with the pain and the agonybe it alone or with my shadow. I love my wife too much to see her cry again for me in a hospital bed...so I've decided to go it aloneno cure...no questions...no more burden to my loved ones. I now live alone and try to get by each dayone day at a time, until the end.I give up! Sorry to all of you who have been there before for me. Jeron Hotmail: Trusted email with powerful SPAM protection. Sign up now.
[TMIC] Happy Days
Happy Birthday to you May babiesand also Happy Mother's Day to all you mothers!!
Re: [TMIC] TM
We were told at the 1999 TM Symposium that the majority of tm patients were in the north.those of us in the southern U.S. were just lucky!! (so to speak) janh Stillwater, OK From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thu, May 6, 2010 9:55:00 PM Subject: [TMIC] TM After the awful news Janet Dunn has given us, I am wondering if where we live in the US has any relevance. I realize that there are those in our group that are from other countries and I am asking them along with our US citizens to just send me your name and the city and state you were living in when TM attacked you. I hope you don't mind my asking you to do this, but I think it would be very interesting if we found a certain area that was heavy with TM or very light with TM. Thank you, Janice
Re: [TMIC] Mike
Gunny, I know this has been a heavy heart day...my thoughts are with you and your family. As we age, the losses seem to make a bigger imprint on our lives, and especially if it's one younger that you grew up with!! I think your blanket letter was most appropriate and appreciated.. as you know this family has been with you in spirit and we are all well aware how hard this day has been without trying to write each of us. Write when you need to scream! We'll all be here for you! Hugs, jan From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Fri, April 30, 2010 3:34:18 PM Subject: [TMIC] Mike We buried my brother today. It was a nice military funeral. Mike was in the Navy back in the 60's. Anyway, I wanted to thenk each and every one of you who supported me. I thought about sending thank you nores individually, but they would have become repetetive after awhile, so I thought a blanket thank you would suffice. Ya know, we're all connected in one way or another, but as you get older, and people around you start to die off, it gets a little harder to take. Especiallt when they're your brother or sister, and they're younger than you. First, you're there when they're born, then you're there when they die. Everything starts to come back when family is around, and the memories sometime become overwhelming. In any case, my heat felt thanks goes out to all of you. Semper Fi Gunny
Re: [TMIC] Mike
Gunny, You're in my thoughts and prayers!! jan From: bgunny7...@aol.com bgunny7...@aol.com To: Tmic-list@eskimo.com Sent: Mon, April 26, 2010 9:20:01 AM Subject: [TMIC] Mike My younger brother Mike passed away at 12:40 AM this morning from brain cancer. He was 58.
Re: [TMIC] Posting
Hey Jude, You found the tmic list which is full of folks who know and miss you!! I hope you're doing well. It's been awhile since your name popped up on my screen. Glad to know it's the new laptop that's kept you away rather than your health!! I hate to get a new 'puter, it takes forever for this old lady to learn the new tricks a new one can do!! Hugs, janh From: Jude Hoops heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Thu, April 15, 2010 4:43:22 AM Subject: [TMIC] Posting Hi, Where is everyone? I cannot find the site with all of my TMIC friends on it. I have a new laptop and I know they are supposed to all be the same, but as far as I'm concerned that is not the case. I am also having a difficult time coming up with my old address book. My hands are hurting so I must go. I love you all and hope to hear from someone soon. Jude
[TMIC] Update
Jill and Mike, What a special time to let us know of the prgress Mike's made!! This is what we've all been praying for. As to your retirement, I think that was smart.you need all the energy you can muster to share life with your family, do the volunteering at the place that's meant so much to you and your family, and to be able to just take it easy!!! Thanks for keeping us informed and on the prayer list and please continue to keep us updated. What a wonderful Easter for you and the rest of your family! Hugs, janh
Re: [TMIC] April Birthdays
HAPPY BIRTHDAY to each APRIL Baby!! janh
[TMIC] Weather
Cold shuts me down.it's painful and thus a downer emotionally! I live in OK, where we don't have alot of snow, but the cold and especially the wind chill make being outside VERY difficult. My legs feel like they are made of lead, walking is tough and then it takes time and warmth to make me comfortable again. (And Frank would tell you, the cold doesn't improve my temperment!!) The other side of the coin, the summer heat wilts me rapidly...since I only sweat above the point of attack (t8), heat stroke is possible if I stay out too long. I guess you could say Spring and Fall are my comfortable times of the year. One thing I try to do is to keep a smile on my face and a positive attitude no matter the weather. Most people don't have any idea the pain that I live with...course, Frank could tell them differently. I'm so blessed to have such a wonderful care- taker, who takes a beating and keeps on being there for me!! janh Stillwater, OK From: Robert Pall rp...@neillsupply.com To: Transverse Myelytis tmic-list@eskimo.com Sent: Tue, March 30, 2010 8:29:31 AM Subject: [TMIC] Weather We are getting a huge amount of rain in the Tri-State area which started yesterday and is expected to end tomorrow. My question is one we have discussed numerous times …but if you will indulge me with your responses one more time. For me high humidity and rain seem to have a tremendous impact on how I feel. The banding in my legs feels twice as bad as normal…as do the numbness and pins and needles. Considering we have members in this group spread out throughout the country (other countries as well) I am interested in how weather and what type of weather (if any) makes TM worse for you. Rob in New Jersey
[TMIC] OT My Mom
Kevin, It looks like by bringing her home you allowed her to see that you were ok, to share time with you, and then you let her go in the quiet comfort of her own home. I'm sure this is tough! But I believe you did the right thing and as time passes you will be at peace with your loss. My thoughts continue to be with you. janh My Mom passed sometime during the night Friday night. I am struggling to absorb this. At least I had a few hours with her before she passed because she was brought home from the hospital during the day Friday. I told her I loved her many times. She was in such a weakened state she could barely nod, but she knew who I was and what I was saying. I thought..hoped I'd have a little more time with her, but at least she is not suffering anymore. Thank you all for your kindness during this difficult time. It is painful. Kevin
Re: [TMIC] shingles
I had shingles soon after the onset of tmnot uncommonluckily for me, the shingles were on my upper legs and bottom which were still totally numb!! janh From: Betty Shaffer vasso...@gmail.com To: tmic-list@eskimo.com Sent: Sat, March 13, 2010 11:45:05 AM Subject: [TMIC] shingles Has anybody out there had shingles? If so, how did it affect you? The doctor was puzzled, saying my rash looked like shingles, but the pain description didn't sound typical. I have jolts of pain rather thanm deep, constant pain. The rash is on my waist. I wonder if T.M. makes things different. My face is quite flushed. After consulting another doctor who confirmed shingles, the first one prescribed medication. Betty in Oregon
[TMIC] TM and Me
I'm so glad to have found this site. I was diagnosed with TM in October 2008. My battle continues. Jeron o'Hara Rampersad Jeron, Welcome to the tm family!! Sorry you have to be here, but it's the best place to learn more about what's going on with your body!! I can relate to how you felt when you found this site!! I cried when I realized there were others who REALLY knew what was going on with me. That was 14 years ago at the end of April and I still learn things here, altho' I don't write much anymore. Feel free to ask any question you might have and someone will relate to what you need to know. If you haven't already, go to TMA website, sign up (it's free), and you'll then get the Newsletter and a membership list. Again, welcome!! janh
Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that I wouldn't get well, nor give me a timeline. The only thing he said would not return was my temperature control. He was right!! AND, I've had improvements throughout the 14 years tm's been in my lifeno matter how small, improvement is improvement and gives hope for more to come!! My 2¢ janh From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wed, March 10, 2010 6:26:13 AM Subject: [TMIC] Lesions and Myelin Regeneration This is a quote from one of the message forum pages on TM website: Even though the lesion(s) are gone, there may be underlying nerve damage caused by the inflammation and the fact that the nerves were unprotected once the myelin got eaten away. The myelin grows back at 1mm a day, so it takes a while for the body to repair itself, BUT the nerve can remain damaged. You will know what damage is left at the 2 yr mark. After this you can still have some recovery but it is very small and unlikely to be very noticeable. This information is provided by one of the site administrators who is also a Registered Nurse.
[TMIC] Re: TM and Me Terry Parker
Hooray!!! That's incredible newsand it couldn't be for any 2 folks!! Sounds like this calls for a jumbo Margarita, right? Hugs, You know who.. Terry had spinal surgery Mondayto remove a large calcified disk that was compressing his cord @ T12, (not related to his TM). However, the Neurosurgeon feels that it MAY increase his mobility! Hecame home from the hospital last night and is doing fairly well, although he certainly feels some pain. This morning when he got up he said that the pain he had been feeling for several months that radiates from his hip down to his leg is gone! We are so very hopeful. St. Paddy's Day marks Terry's 10 year un-birthday of TM. Many of you 'oldtimers' know, that he had no improvement the first 1.5 years, but very, very gradually over the years he improved to where he can now take some steps and is completely independent, with the exception of wheelchair dependent. He is still on Gabapentin, Baclofen and 7 mg of prednisone. Thanks to those of you that sent good wishes, prayers love! Sandy Parker
[TMIC] Excuse Me
Please forgive me for sending the previous message... I didn't intend to send it or at least it would have been marked (OT)! I saw it as my mail said 'sending message', too late to stop it. Dingbat janh
Re: [TMIC] I'm fessing up - continued
Barbara, Soo glad that Daniel has come back so strong!! I think if one of us has a unhappy event, then all of us feel it. Terrible time for his schooling, but he survived and was allowed to make up his tests, etc. so that's a load off his back!! Anyway, thanks for the update. Prayers answered. Hugs, jan My heart is so warmed by all of your responses, too many to respond to individually. Many struggle with some of the same issues as I do of going good for a while and then slacking off. And, winter is of course the hardest time for us to think about exercise when we are more achy than usual. I have been thinking about this though, and I think that it is more important during the winter than ever, if that's possible. During the winter many of us have depression issues that are deeper than usual, due to having stronger or different aches and pains. The weather is also very depressing, and many suffer from SAD. When we exercise we are doing something positive for ourselves and often the aches and pains are reduced at least a bit by moving, if we are careful not to overdo it. So, come on everyone, join in... We've got a good group of us that have chosen to try to get our exercise programs going again. We're all here for support, isn't that what this group is for??? Big hugs to all, Barbara A in Auburn CA
Re: [TMIC] sympom check question
Linda, Isn't it amazing that a matter as simple as emptying your bladder can go haywire..we are so unaware of the functions of our bodiesthat we do automatically, until we can't do them! What a learning curve tm has given us!Glad for you that you have some returning feeling/ability to go on your own. I remember how frustrated I was during the time I had to self cath, no feeling and no way to tell where the catheter should go..Looking back, I have so many stories to tell that today are really! funny .but, definitely weren't then!!! I guess I should tell that I was a complete to the t8, paralyzed from breast level down...with pt and no knowledge that I might not get back my ability to walk, etc, I was walking within 4 months with a walker. Today with residuals that others can't see, (except in this bitter cold,) I'm one of the walking wounded. Hugs, janh Stillwater, OK A lot of us have bladder issues with TM. When TM hit me, it took me a full day and a half to realizethat I hadn't gone. I just didn't have any feeling. So I put myself on a "potty" schedule. My doc sent me to a Urologist in Seattle who was very familiar with TM. I had the neurogenic bladder test (not that pleasant), but really glad I had it. I was told that my bladder was not emptying completely - in fact, hardly at all, but since I couldn't feel it, how would I know. So I was taught to self-cath. I have done this for almost 8 years now. However, by some miracle, in the last year I have gotten some feeling back and find I only have to cath maybe twice a day. The rest of the time I can just go on my own. I know it is said for the most part after 2 years whatever we're left with is what it is. But I really have not found that to be completely true. Many areas of my body have improved, a wonderful surprise, and then some things have pretty much been the same. It sounds like you may not have all your feeling back yet. And read any of the posts on the Message Forum - the bladder is usually the slowest to come back. But never give up. It sounds like your bladder may be doing a variety of things?? Did you have any tests when you saw the urologist? Are you on bladder meds? Ok - got some questions for you to answerThis is great - it's how we can help each other. Linda
Re: [TMIC] Update
Hey Mike, This member of the Hammond Team is: 1.) Pleased with your report and 2.) Continuing my Prayers for you and your family! This is good news!! I liked the reactions of the 2 doctors, that says a lot! What a great gift for the New Year!! I hope that your trip is almost done and soon you'll be your old self!! Hugs, janh Stillwater, OK Update # 8 Hi, everyone, Team Hammond here with the results of my PET scan. Yesterday we learned that I will be going back in for chemo starting today. There were a couple of spots left on the scan which means at least two more chemo sessions are needed. Both of the doctors we saw yesterday were very pleased with the results so far, and that is very encouraging. The team here is very encouraged by the results and looks forward to stamping this out in the next sessions. Please continue to keep us all in your prayers and we will keep fighting. Take care, Team Hammond
Fw: [TMIC] January Birthdays
HAPPY BIRTHDAY, JANUARY BABIES!! janh Stillwater, OK Wishing all of you a wonderful 2010and the January kids the happiest of birthdays! Please send any additions or corrections to tmic-l...@eskimo.com. 1-7 Lauren (sugal...@adelphia.net) 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1/9 Julienne (julesin...@aol.com) 1/13 Debi (brade...@hotmail.com) 1-17 Jenna Stentz (jkste...@yahoo.com ) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday (snow121...@hotmail.com) 1/23 Patti Dotson (ll...@aol.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com) 1/30 Cora (ceckenb...@wildblue.net)
Re: [TMIC] TM video on You Tube
Thanks, Greg...this is well done!! janh Stillwater, OK From: kimr1999 kimr1...@bellsouth.net To: TMIC tmic-list@eskimo.com Sent: Thu, December 31, 2009 8:32:54 PM Subject: [TMIC] TM video on You Tube http://www.youtube.com/watch?v=e9H0fSaTbKA TM video Greg just posted on You Tube.. it's really good... pass it on to everyone you know
Re: [TMIC] Merry Christmas
Merry Christmas to you, too. So sorry to hear about your painful accident, but so pleased to hear you're doing well!! Keep us updated on your progress. Thank goodness God was watching over you, so you would be able to celebrate his birth!! janh Stillwater, OK Iwant to wish all of you a very special Merry Christmas and a blessed and prosperous New Year. I have not signed on in a while. I am recuperating from a Free-Way rear end collision. God truly blessed me, I am doing much better. I had a serious whip lash going to the chiropractor (3) times a week over all doing good.May God bless and keep all of you. There is none so amazing as God Peggy Wilson
Re: [TMIC] Merry Christmas
Larry, Thanks for the Christmas wishes.and may your Christmas and New Year be good to you Fear if you're hoping for white Christmas you're going to get your wish the sleet is already here in Stillwater and the wind is furious!! Heard on scanner that the bridges were already iced over and the OHP says the road from I-35 to Stillwater is deteriorating. My prayers go out o those who are trying to get to grandparents!! Merry Christmas!! We Wish You a Merry♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪ Christmas♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪We Wish You a Merry ♪♫•*¨*•..¸¸♥ ¸¸.•*¨*•♫♪Christmas ♥ ♥ ♥We Wish You A Merry ♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪Christmas ♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪...And A Happy New Year!♪♫•*¨*•.¸¸♥ ¸¸.•*¨*•♫♪...Larry in Oklahoma where we might be getting a white Christmas!
Re: [TMIC] Lynn Rose has been released from hospital..
An answer to the tm family prayers...you sound great and sound like overdoing is going to be very possible!! So slow down girlyour kids/Bill want you to be there for many more Christmas Seasons!! (and so do we!) Glad you got care as soon as you did and Bless Bill's heart for letting us know that our prayer squad needed to get in gear.. so happy for you and your family that you're able to be home for the holidays. Enjoy your time with them, and DON'T overdo!!! Hugs, jan Thank you all for the prayers ...they worked! Just wanted to send a quick note and let you know I'm home and restinggood heavens, Christmas is right around that cornerI'm almost ready. There will be a few less homemade cookies and fudge this year but no one seems to mind one bit. :-) I did manage to get some cookie dough in the freezer before I had my heart attack so those grandbabies aren't going to be disappointed one bit. :-) Bill helped me finish decorating our tree last night presents are wrapped and ready to go under the tree.lights and wreaths are up. I am so, so thankful I didn't procrastinate and got a lot of things finished early..never would have dreamed I'd have a heart attack 11 days before Christmas. My kidsbless their heartssaid, Mom...do not cook...! We can just have KFC or something. We do NOT want you to do any work. Right. :-) It's standing rib for them..they just don't know it yet. Heck.KFC would probably put me right back in the cardiac intensive care unitLOL! I hope you all have a wonderful Christmas.don't know when I'll be back on this computer so please bear with me if I owe you a letter.I will write sometime after Christmas God willing. Love to all, Lynn
Re: [TMIC] Hey Jude...it's me!
Hey, Jude!! Great to see your name pop up, and what a jolly letter, too. I bet Harley has alot to do with that..Frank is always telling me what our 2 Shih Tzus and our daughter's Shih Tzu are doing they keep him running!! Glad to hear that Dave is fitting into retirement life It is my fondest hope that you don't have a broken ankle! one consolation tho'...if they cast it you won't ne able to feel the itch when it gets to that stage of healing... I have much left to do for our fanily gathering this week so I'll get off here. Again, it's good to hear from you!! Hugs, janh Stillwater, OK Hi Guys, It's been a while, but it's me, Jude... For those of you who recall my name, I'm sorry it has taken so long for me to get back into the swing of things. The death of our dear Pam really took the wind out of my sails and laid me low for all this time. Not one darn thing has changed in my life except that we have added another mouth to feed, and he eats constantly and I have yet to find a food that he won't eat. His name is Harley, after Dave's best human friend and is part Spaniel/Beagle. Harley is white with silvery/black large spots and a black circle around one eye. Once Dave figures out how to send pictures to the Internet we will post some of the whole family. Dave is adjusting well to being retired, especially now that he has a buddy to hang around with. I'm not sure what they do out there, but they go tramping through the woods behind the house and chase squirrels and whatever else. Harley puts his nose to the ground and pulls poor Dave along behind him whether Dave wants to go there or not. I have remained pretty much stuck in my bed due to almost constant UTI's and a serious aversion to wearing briefs although I have to when I go out which is not often. In fact, I now even have a doctor who makes home visits and I really like him so far. I need to call him as soon as his office opens and make arrangements to go to the hospital since I believe I have one seriously broken ankle/foot. This brittle-bone disease is for the birds. I was inspecting my feet and toes for whatever one checks their Transverse Myelitis feet against; black spot, spider webs and such, and just like several years ago, I heard a cracking sound and although I have very little sensation, it does seem to hurt quite a bit. So anyway...what's up will all of you people? What kind of trouble have my old friends gotten into? C'mon, spit it out...You know I will get it out of you sometime...as the old adage goes, you can run, but you can't hide. Ok, let's start with you Doctor Rick; have you and the fam gone on any neat excursions out into the wilds of the world? And how is Terry doing? Still up and getting around in spite of good old TM? Miss Ella...I haven't heard a word from you or any of your 105 sisters. I'm sure that you are busy getting ready for some celebration or another. I know it's got to be someone's birthday or something. I now have a new computer with which I am having a love/hate relationship with. This one does all kinds of new tricks and treats, but it's not the right time of year for that so it's not cooperating. It's got to have something to do with that inch or so of white stuff littering the ground, looking like it's going to stay for three or four months. And now, if Dave agrees that I need to be seen by the doc, I will probably need to go out for x-rays. Well friends, I won't take up any more of your time and will let you know what the Dr. has to say and if I get casted, what color I will choose. Lots and lots of love, Jude...
Re: [TMIC] asking for prayers
Barbara, My prayers go out to your son and all your family, just know he's getting the help he needs. Please keep us updated on his condition. Hugs, janh Stillwater, OK From: Barbara Alma balmat...@aol.com To: tmic-list@eskimo.com Sent: Sat, December 19, 2009 11:55:18 PM Subject: [TMIC] asking for prayers Our son Daniel was admitted into the Intensive Care Unit of the hosital yesterday with complications of the flu. He has been sick for two weeks, and has had 4 different visits to the E/R and doctor's offices during that time. The first visit to the E/R he was dehydrated and had chest x-rays, and it looked like something was starting in one lung so antibiotics were started then. At that time the doctor said that if he had waited another day it would have been pretty bad, but it looked like they caught it before any complications. After 6 days he went into a doctor's office in town when he was having some difficulty breathing. He now had pneumonia in both lungs, had a breathing treatment and another antibiotic. Then he had a return appt for that Friday. He went in on Friday and they administered some oxygen and referred him to a pulmonary specialist at the hospital, so he went there and they did more tests and he now he was dehydrated again which caused blood clots in his lungs and in one leg. He's getting lots of breathing treatments, oxygen, blood thinners and doing a bit better tonight. They had all told him to go to bed, get lots of rest and get lots of fluids. So, he did! He did nothing else. Needless to say I'm scared! I am not an overly religious person, but I am a spiritual person who believes that prayers are very powerful. For those who believe in prayers and who do pray, can you please add my son to yours? I would appreciate it so much. Hugs, Barbara A in Auburn CA
Re: [TMIC] Lynn Rose is in the hospital
Bill, Thanks for the heads up about Lynn... Hope she can be released on Thursday as planned!! She's a special person in this tmic and you can be assured that she'll get prayers galore. Give her a hug for me. Janh Stillwater, OK From: roseofr...@aol.com roseofr...@aol.com To: tmic-list@eskimo.com Sent: Wed, December 16, 2009 12:06:13 PM Subject: [TMIC] Lynn Rose is in the hospital Just a quick note to report that Lynn is in the hospital - she had a heart attack on Monday because of blockage in the branch feeding the back of the heart. They did an immediate heart cath and placed a stint. Lynn is doing better and is scheduled to be released Thursday. There was some doubt to a Thursday release because of a rise in her temperature yesterday - now back to normal. Thanks in advance for your prayer support - she loves and appreciates you all. She should be the next one you hear from, the Good Lord Willing. Thank You God Bless ~ Bill
Re: [TMIC] Age
Roger, I understand your kind of math much better than some of these folks seem to!! janh, Stillwater, OK I was 54 back in 1994. I'm now about 60 (23rd of Dec.) so TM has been with me over 15 years. k Roger, in Kennewick, WA
Re: [TMIC] Age
I was 57 by one month when tm came to live with usApril, 1966 janh Stillwater, OK From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thu, December 10, 2009 11:35:27 PM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM. Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
Re: [TMIC] Age
Todd caught an errorI'm not sure (without scrunching numbers), how old I would have to be if I was 57 when tm came to live with in 1966, I meant April, 1996 Double digits, just the wrong ones... Thanks for catching my error, Todd. I do think there have been people on here who were diagnosed before '66, but I can't remember who.maybe Larry Throne from OKI know he was struck early in life. Of course, if he wasn't even born by '66, my name will be MUD!! janh, whose computer had a senior moment!! From: Todd Tarno toddtm2...@sbcglobal.net To: Jan Hargrove jmh1...@sbcglobal.net Sent: Fri, December 11, 2009 2:15:30 PM Subject: Re: [TMIC] Age April, 20 1966, I would had only been 2 years old. Did they even know what TM was at that time? Todd in CC, TX --- On Fri, 12/11/09, Jan Hargrove jmh1...@sbcglobal.net wrote: From: Jan Hargrove jmh1...@sbcglobal.net Subject: Re: [TMIC] Age To: Janice Nichols jan...@centurytel.net, tmic-list@eskimo.com Date: Friday, December 11, 2009, 2:05 PM I was 57 by one month when tm came to live with usApril, 1966 janh Stillwater, OK From: Janice Nichols jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thu, December 10, 2009 11:35:27 PM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM. Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
