Re: [TMIC] 6th anniversary
Nine years for me! Up with the warm, down with the cold; up with the sun, down with the gloom. Yesterday, with the cold and rain, my arm got literally stuck when it was bent at the elbow. I had to get my son to pull it out straight; today it's warmer and it doesn't freeze up. Time to get out the snuggies! Priscilla in sunny TN -Original Message- From: rn11...@yahoo.com rn11...@yahoo.com To: kimharrison...@comcast.com Cc: tmic-list@eskimo.com Sent: Wed, Oct 6, 2010 10:49 am Subject: [TMIC] 6th anniversary Hi, It's been 15 yrs for me,and I still mourn for the losses. Not all the time,but it is especially sad for me around this time of year. Good old seasonal affective disorder;It gets dark earlier. Plus,this week has been rainy and gloomy,so that has me down. The hardest part for me is that unless you have tm,you don't get it. The unrelenting tiredness,burning pain,numbness,tingling,tightness,etc. My sister once said she couldn't stand to have the numbness all the time. I said there isn't a choice,it's reality,and you learn to accept it. I thank God for the TMIC;I'd be adrift in a sea of loneliness without all of you. Cheryl in rainy (again) Easthampton,MA --- On Wed, 10/6/10, kimharrison...@comcast.net kimharrison...@comcast.net wrote: From: kimharrison...@comcast.net kimharrison...@comcast.net Subject: [TMIC] 10-06-04, the 6th anniversary TM came into my life. To: TMIC tmic-list@eskimo.com Date: Wednesday, October 6, 2010, 3:10 AM 10-06-04, today is the 6th anniversary TM (Transverse Myelits) came into my life. I live in Atlanta and was on a business trip to Dallas . I would have never thought that waking up; putting my feet on the ground one Wednesday morning would have changed my life so much. I would like to say is thank you to my husband Brian, my rock that keeps me grounded. I could not have made it thru this without him by my side and support. To God for bringing Brian into my life 24 years ago, and to friends and family and my extended TM family that have stuck by me regardless of what this spinal cord disease has thrown at me. There are days that it seems like it’s been forever and I can not remember walking, running, riding a bike, ect and days that it seems like I just woke up and realized life as I knew it would never be the same. I still have days I mourn for the loss of the life style I had but at the same time blessed at how much appreciation for life has been given me. I know I am blessed that this disease did leave me one good leg that I can use a walker for short distances around the house, but need a wheel chair for distance/public use. By reading so many TM stories on this site I do not feel as alone with the pain, frustration, and just plain old bad days as I read other stories and puts my issues back in perspective. Thanks again to my TM family for always being there and sometimes that extra kick in the rear when the pity party starts! So a journey in life began, but the adventure continues Love and bless you all Kim/Atlanta TM T-10
[TMIC]
[TMIC]
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Re: [TMIC] Be my strength
Dear Jude, As you face this surgery,?just remember that we are all with you in spirit, even though you may not know all of us.? We are right by your side with powerful energy and prayers as you enter the unknown.? As frightening as it is, God will lead you through it.? He will be there holding your hand. You have such an unselfish attitude worrying about us, that you won't be able to comfort us.? Just get well soon and return to us in good health.? Thank you for your love and concern. Love, ?Priscilla in TN -Original Message- From: L T CHERPESKI cherp...@msn.com To: tmic-list@eskimo.com; heyjude48...@aol.com Sent: Fri, 20 Feb 2009 11:49 pm Subject: Re: [TMIC] Be my strength Dearest Jude, ? It is indeed a comfort to know that this wonderful TM Family?is always here for us.? And you are right - we are all brothers and sisters, we have so much to share. ? You will be in my prayers, Jude, all the way. I pray you will find peace in knowing we are all here for you, as you have always been for us.?You've said you need our strength. We will be your strength. ? Love to you, dear Jude, ? Linda - Original Message - From: heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Monday, February 09, 2009 12:15 PM Subject: [TMIC] Be my strength Wow...how difficult it is for some of us to keep smiles on our faces and thanksgiving in our hearts. ? With the loss of loved ones, family strife, difficulties out of our control, lurching, falling, not walking at all and the pain and agony of TM it is a miracle to find ourselves within a group of people with arms long enough to stretch around each and every one of us. ? It seems as though we all believe in something larger than ourselves.? We are strong in our personal faiths and each one of us has a place within this group.? If even one of us leaves the List, something is lost forever.? When a new member joins, something is gained.? We are stronger yet. ? I must apologize for the times that I have been out of commission and not there for those of you that are in need of comfort.? Please know that even though I may not be writing to the List, you are all, my brothers and sisters, in my Prayers...Always.? Know that in your heart of hearts and may it help to know that I am still there for you. ? When I am at my lowest, I take such comfort in knowing that you are there for me.? You hold me up, clear my head, help me with the pain while I wait for the next shot of morphine.? Your love lifts me up, your Prayers and thoughts keep me strong and I know that I am not alone. ? Some of you call regularly, some send cards and pictures, others send flowers and a couple of you that live nearby, even visit in person. One of you stands by me Praying and Singing Hymns even when I cannot join you.? Know my thanks is true. ? I will shortly be going through a surgery that I am not feeling comfortable about.? I have thoughts of not making it through.? I need you to help me.? I worry about the infection spreading even stronger throughout my body and blood.? I am not yet ready to die. ? Thank you all for being my lifeline.? I am counting on you to send your Prayers up to God in Heaven in the name of His Son, Jesus Christ.? It does not matter if you do not believe...I will believe for both of us. ? Thank you for your help.? I am scared and need your strength.? Give me only the energy you can spare.? I love you.? I am not going to be writing much but if you need me, let me know. ? Jude A Good Credit Score is 700 or Above. See yours in just 2 easy steps! A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
Re: [TMIC] OT!!!!MARDI GRA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi Pam, I would love to be in NOLA again. I've been there twice and even got a rare tour of Ann Rice's home in 1999 before TM hit me. I would love to participate in Mardi Gras; my brother works on Carnival Cruise ships that come into NO and also loves the town and has lots of friends there. He loves the food and has a blog with recipes of cajun food. Here's the link. Check it out! It's informative as well as hilarious. http://rouxbdoo.blogspot.com/ How I wish I were there to eat the pralines! The alligator and crawfish you can keep. PRISCILLA :) -Original Message- From: montzma...@aol.com To: tmic-list@eskimo.com Sent: Fri, 20 Feb 2009 11:59 am Subject: [TMIC] MARDI GRA!! ITS THAT TIME OF YEAR AGAIN.THE PARADES AND FESTIVITIES HAVE BEEN GOING ON FOR 2 WEEKS NOW. FROM NOW TO TUESDAY WHICH WE CALL FAT TUESDAY IS GOING TO BE SO MUCH FUN BUT HECTIC. RELATIVES , FRIENDS COMING IN FOR THE PARADES. I ONLY WENT TO ONE PARADE, IT WAS GREAT. TONIGHT A BIG ONE PASSES A BLOCK FROM MY HOME, BUT IT WILL BE IN THE 30/S SO DAN AND I WILL STAY HOME OUR COMPANY WILL GO. EVERYONE HAS TO SEE ONE MARDI GRA IN THEIR LIFETIME .I WILL BE BUSY ENTERTAINING, SOME OF OUR FRIENDS HAVE STEAKED OUT THEIR SPOTS IN MID CITY WHERE ENDIMIUM PASSES. THEY HAVE TENTS, PLATFORMS TH EIR OWN TOILETS ENCLOSED, ITS A REAL BIG THING HERE. I HAVE NOT HAD TO DO THAT SINCE ALL THE PARADES PASSED A FEW HOUSES FROM WHERE I LIVE. THEIR ARE PARADES ALL OVER LA. MS AND AL. THE TOURISTS HAVE ALREDY ARRIVED AND ARE IN THEIR HOTELS..WE HAVE A CREW FOR DOGS THAT IS JUST TOO CUTE.THAT IS IN THE FRENCH QUEARTER AREA. ITS SAFE TO COME HER YOU JUST HAVE TO KNOW WHERE TO GO AND WHERE NOT TOO. THE FOOD IS DELICIOUS AND OF COURSE BOURBON STREET AND OUR FAMOUS KING CAKES. I WISH I COULD SEND YOU ALL ONE, THEY HAVE THE PLAIN ONES, ONES FILLED WITH CREAM CHEESE, CARAMEL JUST ABOUT ANYTHING YOU WANT. THEY COME IN ALL DIFFERENT SIZES.IT WOULD COST ME TO MUCH MONEY.THEN YOU HAVE TO GO TO GET BEIGNETS AND COFFE A TRADITION GO TO JACKSON SQUARE. THE AQUARIUM AND THE ZOO AND THE MUSEUMS , THE ANTIQUE SHOPS AND ALL THE GREAT CAFES AND OF COURSE PAT O BRIENS. JUST SO MUCH TO DO HERE AND ITS REALLY NICE TO TAKE A BUGGY RIDE ALL AROUND THE CITY. IF I DO NOT ANSWER MY E-MAILS LIKE I USUALLY DO ITS BECAUSE OF THIS BIG FIVE DAYS!!! GOD BLESS TIAD PAM! Need a job? Find an employment agency near you.
Re: [TMIC] Lyrica
I have been taking Lyrica for quite a while and it really helps me walk better. Lately, I have had pain in my arm muscles; my orthopedic doctor said my left arm has slipped out of the socket two inches. I wonder if this is caused by the Lyrica? Would steroids help my muscles? I am going to my neuro asap but would like to have your imput first. PRISCILLA :) -Original Message- From: Regina Rummel regina...@sbcglobal.net To: tmic-list@eskimo.com Sent: Sun, 25 Jan 2009 7:44 am Subject: [TMIC] Lyrica My neuro now tells me that my symptoms are caused by much more than TM. Namely vasculatis. She put me on Lyrica and I woke up this AM with a pretty nasty headache. Should I put up with this and it will pass? What were your problems or successes with Lyrica? R
Re: [TMIC] Re: tmic-digest Digest V2008 #332
In 2001 I had an acute attack of transverse myelitis, paralyzing me from the chest down. I was in rehab hospital for eight weeks and I slowly recovered and finally I was able to walk. From the beginning, they told me that I would never use my hands because I was struck at c5 and c6.. I can't use either hand and I need help every day to bathe me, to cook for me, to clean my house, to write for me, and anything else that requires the use of your hands. I just thank God for the things I can do. I don't have much family that will help me, but I do have many good friends that take me places and care about me. I suggest that you get all the therapy that you can for your hands and arms. Good luck to you, and be sure to contact me if you have any questions. Have a wonderful day! Priscilla -Original Message- From: Amanda Diskey [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Fri, 12 Sep 2008 12:01 am Subject: [TMIC] Re: tmic-digest Digest V2008 #332 hey everyone, i hope all is going well. i am s sick of this hospital. i might get to go see dr. kerr. did anyone else lose their arms and hands? i am getting all the muscles in my arms back, however not my hands. i am hoping vthey come back soon. --- On Wed, 9/10/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #332 To: [EMAIL PROTECTED] Date: Wednesday, September 10, 2008, 12:50 PM tmic-digest DigestVolume 2008 : Issue 332 Today's Topics: [TMIC] Re: tmic-digest Digest V2008 [ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ Jan Hargrove [EMAIL PROTECTED] ] Re: [TMIC] jude [ Jenna [EMAIL PROTECTED] ] RE: [TMIC] new friend [ wim from holland wim_from_holland@ ] Re: [TMIC] Testing 123[ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ Diane [EMAIL PROTECTED] ] Re: [TMIC] jude [ L T CHERPESKI [EMAIL PROTECTED] ] Re: [TMIC] gel cushion[ Alton Ryder [EMAIL PROTECTED] ] Display Notification: [TMIC] Re: tmi [ Rita Asbury [EMAIL PROTECTED] ] ? ? The site is tmic-list@eskimo.com .At least it as the last? the? time I checked.Rick ? -- Original message from [EMAIL PROTECTED]: -- Thanks Jim, ? Heather in Calgary - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: Sunday, September 07, 2008 10:13 AM Subject: [TMIC] Paralympics Athletes living with Transverse Myelitis Beijing Paralympics Athletes living with Transverse Myelitis United States Sarah Castle (Wheelchair Basketball) http://www.olympicspirit.us/paralympics/39341_46582.htm http://paralympics.teamusa.org/athlete/athlete/1929 Anjali Forber-Pratt (Wheelchair Track) http://paralympics.teamusa.org/athlete/athlete/2209 http://anjaliforberpratt.com/content/about Amanda McGrory (Wheelchair Track Basketball) http://paralympics.teamusa.org/athlete/athlete/2217 Kerri Morgan (Wheelchair Track) http://paralympics.teamusa.org/athlete/athlete/2218 Steven Toyoji (Wheelchair Track Basketball) http://paralympics.teamusa.org/athlete/athlete/2205 Great Britain Gordon Reid (Wheelchair Tennis) Australia Greg Ball (Cycling) http://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=61d23790-dd7f-4d77-ad8a-ad2b10874a39 Madison de Rozario (Wheelchair Track) http://www.madid.com.au/bio.htm http://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=725a9395-ceb6-4061-82e6-91f6ea88c337 Watch online http://www.universalsports.com//SportSelect.dbml?DB_OEM_ID=23000KEY=SPID=13327SPSID=107765 http://www.cbc.ca/sports/paralympics/ http://news.bbc.co.uk/sport2/hi/other_sports/disability_sport/default.stm Jim Lubin?? [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org ? Welcome, Amanda! ? Sorry you have to meet us this way, but you've come to the right place. Wecome to the family!! ? Hugs, janh --- On Tue, 9/9/08, Amanda Diskey [EMAIL PROTECTED] wrote: From: Amanda Diskey [EMAIL PROTECTED] Subject: [TMIC] new friend To: tmic-list@eskimo.com Date: Tuesday, September 9, 2008, 3:40 PM my name is amanda and i am newly diagnosed with tm. i am still in the hospital in rehab. hope this gets through to the list. i could use sum friends. ? Hi Bob, I am sorry you have been in the hospital, I hope you are feeling better now. Jude is doing ok, is the update I got today.? I will check with Pam again tomorrow and she if she can give me more info.? Or maybe Ella or Patti know more. ? Jenna - Original Message From: bob [EMAIL PROTECTED] To: tmic tmic-list@eskimo.com Sent: Tuesday, September 9, 2008 12:57:00 PM Subject: [TMIC] jude how is jude doing i just spent 12 days in the hospital and just came home last evening..can i please have an update on jude?thank you Also welcome from
Re: [TMIC] Re: tmic-digest Digest V2008 #332
Hi Amanda, I can type with my thumb and I sometimes use a voice recognition program called Dragon-Naturally Speaking.? I went to JH and saw Dr. Kerr about?6 months after I had the attack.? He prescribed neurontin for me which helped the tingling and burning in my legs and the banding.? I really liked him; he was very compassionate and helpful.? I changed to lyrica when it came out. Have a wonderful day! Priscilla -Original Message- From: Amanda Diskey [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Fri, 12 Sep 2008 5:47 pm Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #332 i am in rehab now, i do have some use of my hands. i feed myself, bathe myself, brush my hair, learning to dress myself, and i can write a little too. i refuse to give up! i have good therapists too. i might be going to johns hopkins to see dr. kerr. do u see him? how do u type? thank u for the email back, i haven't seen many people who have lost their hands from this. most are only affected from the waist down. i was struck at c5 to t3, but supposedly the swelling was mild. who knows what will happen? either way i guess we have to adapt huh? can u move ur wrists? --- On Fri, 9/12/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #332 To: [EMAIL PROTECTED], tmic-list@eskimo.com Date: Friday, September 12, 2008, 2:42 PM In 2001 I had an acute attack of transverse myelitis, paralyzing me from the chest down. I was in rehab hospital for eight weeks and I slowly recovered and finally I was able to walk. From the beginning, they told me that I would never use my hands because I was struck at c5 and c6.. I can't use either hand and I need help every day to bathe me, to cook for me, to clean my house, to write for me, and anything else that requires the use of your hands. I just thank God for the things I can do. I don't have much family that will help me, but I do have many good friends that take me places and care about me. I suggest that you get all the therapy that you can for your hands and arms. Good luck to you, and be sure to contact me if you have any questions. Have a wonderful day! Priscilla -Original Message- From: Amanda Diskey [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Fri, 12 Sep 2008 12:01 am Subject: [TMIC] Re: tmic-digest Digest V2008 #332 hey everyone, i hope all is going well. i am s sick of this hospital. i might get to go see dr. kerr. did anyone else lose their arms and hands? i am getting all the muscles in my arms back, however not my hands. i am hoping vthey come back soon. --- On Wed, 9/10/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #332 To: [EMAIL PROTECTED] Date: Wednesday, September 10, 2008, 12:50 PM tmic-digest DigestVolume 2008 : Issue 332 Today's Topics: [TMIC] Re: tmic-digest Digest V2008 [ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ Jan Hargrove [EMAIL PROTECTED] ] Re: [TMIC] jude [ Jenna [EMAIL PROTECTED] ] RE: [TMIC] new friend [ wim from holland wim_from_holland@ ] Re: [TMIC] Testing 123[ [EMAIL PROTECTED] ] Re: [TMIC] new friend [ Diane [EMAIL PROTECTED] ] Re: [TMIC] jude [ L T CHERPESKI [EMAIL PROTECTED] ] Re: [TMIC] gel cushion[ Alton Ryder [EMAIL PROTECTED] ] Display Notification: [TMIC] Re: tmi [ Rita Asbury [EMAIL PROTECTED] ] ? ? The site is tmic-list@eskimo.com .At least it as the last? the? time I checked.Rick ? -- Original message from [EMAIL PROTECTED]: -- Thanks Jim, ? Heather in Calgary - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: Sunday, September 07, 2008 10:13 AM Subject: [TMIC] Paralympics Athletes living with Transverse Myelitis Beijing Paralympics Athletes living with Transverse Myelitis United States Sarah Castle (Wheelchair Basketball) http://www.olympicspirit.us/paralympics/39341_46582.htm http://paralympics.teamusa.org/athlete/athlete/1929 Anjali Forber-Pratt (Wheelchair Track) http://paralympics.teamusa.org/athlete/athlete/2209 http://anjaliforberpratt.com/content/about Amanda McGrory (Wheelchair Track Basketball) http://paralympics.teamusa.org/athlete/athlete/2217 Kerri Morgan (Wheelchair Track) http://paralympics.teamusa.org/athlete/athlete/2218 Steven Toyoji (Wheelchair Track Basketball) http://paralympics.teamusa.org/athlete/athlete/2205 Great Britain Gordon Reid (Wheelchair Tennis) Australia Greg Ball (Cycling) http://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=61d23790-dd7f-4d77-ad8a-ad2b10874a39 Madison de Rozario (Wheelchair Track) http://www.madid.com.au/bio.htm http://www.paralympic.org.au/AthleteProfile.aspx?AthleteID=725a9395-ceb6-4061-82e6-91f6ea88c337 Watch online
[TMIC] Fwd: Check this out!
Have a wonderful day! Priscilla -Original Message- From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Sun, 27 Jul 2008 7:28 pm Subject: Check this out! We are sending you this email on behalf of Priscilla Keene ([EMAIL PROTECTED]): I found this page at AllegroMedical.com and thought you might find it of interest. I am trying to get Medicare to pay?for it.? lol ? http://www.allegromedical.com/wheelchairs-c540/jet-powered-concept-wheelchair-p557073.html Customer Service Team AllegroMedical.com
Fwd: [TMIC] Frustrated!!
I think I understand why some babies cry and scream for no apparent reason.? After living with TM for 7 years I've learned that certain scented lotions make my dry, scaly legs burn like fire, I can't find a bra that doesn't make my banding even more painful, my feet burn when they are ice cold, and I itch in places I can't scratch.? I never have a comfortable day. Sometimes I feel like crying and screaming, too. Have a wonderful TM day! Priscilla in TN -Original Message- From: [EMAIL PROTECTED] To: Trudy Ogilvie [EMAIL PROTECTED]; tmic tmic-list@eskimo.com Sent: Sun, 20 Jul 2008 3:29 pm Subject: Re: [TMIC] Frustrated!! Trudy, Only another TMer could properly discribe the feelings you wrote. Yes, you wore the wrong shoes, put on the wrong jeans, sat on the wrong chair, knelt wrong, and live in the wrong climate. My feelings exactly. It's not likley another attack, but it is likely all due to TM. What a strange club we've joined! Take your shoes, put your feet up, and have a cool drink! Best Wishes Patti - Michigan Trudy Ogilvie [EMAIL PROTECTED] wrote: This TM has got to be the weirdest!!! You change your shoes and your legs go crazy. You put on a pair of jeans - the legs don't like 'em - you sit too long on a hard-surfaced chair... WATCH OUT - pay for that mistake. I feel as tho from the hips down I have just been poured into a cement block. What did I do??? I went to church, came home and changed my shoes and my clothes... Is it just me or does anyone else have this problem of different shoes, clothes, hard benches... and the legs sometimes just don't like the way things have gone and boy do they let you know... Is this some sort of attack?? It's very scary. I know that when I wake up I never know how these legs are going to greet me... but usually it's just a matter of of all over regular every day pain. Did I sit wrong? Did I kneel too long... Hmmm maybe church isn't a good idea... just kidding :)It's my lifeline Thought I would just share these painful moments with those who really understand! Maybe it's the unbearable heat wave we've got going here in Virginia... Take care all Trudy
Fwd: [TMIC] just another gloomy day
Hello everyone, I have a lot of trouble typing as my hands are paralyzed, and I can only use my thumb, so I don't post often.? From the very beginning of this condition, I have been very positive, and I have felt God's presence with me constantly. Some members of my church tell me I have been an inspiration because I never complain. I rarely cry, but this past weekend about 15 men from church rebuilt my ramp, and I did cry.? It was beautiful!? I was very touched by their thoughtfulness.? In addition, my circle has paid for a Life Alert for me for 3 years.? Those ladies are available to take me anywhere, any time.? I am so blessed to have so many good friends.? My friends have been better to me than my own family! Sal, I know you have many good friends because I saw them on your MySpace.? Keep yourself surrounded by them as much as possible.? They are angels!?? Vent all you want; we are here for you, and we understand. ?I want to tell everyone on the list what a blessing it is to have you as my invisible friends.? How great you have been for Jude!? She must feel loved.? I pray that she will have a complete recovery from the MRSA.? One of my friends, born with spina bifida and paralyzed from the waist down, has just recovered from the same condition that Jude has, except hers started with a UTI.? She was in critical condition for some time, but they treated her with an antibiotic (I've forgotten the name of it) that is used only as a last resort in the hospital.? She finally recovered and is doing well.? Jude, you will make it--just keep fighting.? We are here for you with our support and prayers. Take care, everyone. Hugs Priscilla (aka Peachy) in TN -Original Message- From: sal r [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tm tmic-list@eskimo.com Sent: Mon, 24 Mar 2008 7:48 pm Subject: Re: [TMIC] just another gloomy day hi, ive had tm for almost 3 yrs now...the reason behind the carrot comment i made was because i have made alot of recovery like i said im very thankful but i have downbeat nystagmus, which is a very annoying condition so besides getting a rare condition like ADEM i also get DBN on top of that...well ok im over that but the thing is that im relearning how to walk tes i kno im very fortunate buttt the fact idon t have balance cuz of my eyes is really hard...i have been stuck at the same recvery for a while...i may sound a lil dumb for complaining but i dont complain much and really neededhonestly im not under depression im jus depressed today im human...i dont go through to often because im good at bottling emotions up and i dont want to do it in front of my mom becuase i do not want her to break down and cry?ive been hiding everything since the moment ive got sick being on a respirator and paralyzed from the jaw down..t so i have just decided to vent a lil and thankyoiu everyone for your thoughts and comments ?very helpful...i feel better already !!! [EMAIL PROTECTED] wrote: HEY ? ??? WE ALL HAVE A DAYS OR WEEKS OR MONTHS.? HOW LONG HAVE YOU HAD TM AND WHAT KIND OF RECOVERY HAVE YOU HAD?? VENT IF YOU NEED TO.? WE ARE HERE AND WE HAVE ALL BEEN THERE.? THIS WONDERFUL DISORDER WE HAVE CAN SOMETIMES BRING US DOWN, BUT CRY OR YELL AND GET IT OUT.? THEN YOU CAN START TO FEEL BETTER MENTALLY.? KEEP THE FAITH. ? ?? LINDA IN PA Create a Home Theater Like the Pros. Watch the video on AOL Home. __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] Vitamins
In a message dated 7/26/2007 7:23:51 PM Pacific Standard Time, [EMAIL PROTECTED] writes: I learned thru this group that you cannot take Metamucil within (I think) 2 hours before meds and one hour after meds. I was wondering about vitamins. Are there any vitamins that might interact harmfully with the Lyrica cymbalta that I take. My vitamins: Fish oil, Calcium, daily.. Thanks Trudy Hi Trudy, I take the same meds and calcium plus vitamins for women and was wondering the same. It is working well for me, except I have constipation...do you? Priscilla in TN ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
Re: [TMIC] Renal problems
Dear Franque et al, For four years I had diarrhea every time I ate a meal; the doctor said I had Crohn's disease, but I was in denial of having that and ignored him. Then I changed meds--from a high dosage of neurontin to lyrica and cymbalta. Now I have chronic constipation and I think the meds are to blame. I haven't been back to that doctor and don't plan to. Priscilla in TN ** See what's free at http://www.aol.com.
[TMIC] Re: Reason for TM
My TM, is it that goes as idiopathic (that means the idiots can't figure out what's going on) :-) I love that explanation, Naomi; it's a classic. You have a great attitude! Hugs, Priscilla in TN ** See what's free at http://www.aol.com.
Re: [TMIC] Re: Who's got what?/ Photos
I WAS ALSO ABLE TO UPLOAD A PICTURE. I WILL ADD MORE LATER. PRISCILLA IN TN ** See what's free at http://www.aol.com.
Fwd: [TMIC] TM and Chemical Sensitivity
** See what's free at http://www.aol.com. ---BeginMessage--- Johnson and Johnson Baby Wash with Lavender and also their Baby Bath (that states no soap and hyperallergenic) burn my legs and feet. The latter has a red dye in it. Think how it must feel to babies' tender skin. Also some scented baby wipes and lotions burn me. Mothers, and especially single mothers, thank you for raising this nation's children. I hope you had a wonderful day. Hugs, Priscilla in TN ** See what's free at http://www.aol.com. ---End Message---
[TMIC] OT: The most amazing Dad ever!!
Remember to thank your caregivers after you see this video. This is awesome! Hugs to all, Priscilla in TN ** See what's free at http://www.aol.com. ---BeginMessage--- You won't believe this father. Kind of makes us all a little ashamed. Please read the whole story then watch the video. Amazing. _http://cjcphoto.com/can/_ (http://cjcphoto.com/can/) Ahhh...imagining that irresistible new car smell? Check out _new cars at Yahoo! Autos._ (http://us.rd.yahoo.com/evt=48245/*http://autos.yahoo.com/new_cars.html;_ylc=X3oDMTE1YW1jcXJ2BF9TAzk3MTA3MDc2BHNlYwNt YWlsdGFncwRzbGsDbmV3LWNhcnM-) ** See what's free at http://www.aol.com. ---BeginMessage--- http://cjcphoto.com/can/ - Ahhh...imagining that irresistible new car smell? Check outnew cars at Yahoo! Autos. ---End Message--- ---End Message---
Re: [TMIC] Cold Spots
Dear Kristy, I also have cold spots on my legs and arms, but only when I lie down at night. When I am upright and walking, I don't feel cold at all. In fact, I have a burning and tingling sensation in my legs. I take lyrica for that. Sometimes when I'm sitting next to a lamp, I feel like I'm getting a sunburn, but my skin will be cool. I know it's very uncomfortable, but I suppose these are symptoms that we will have to live with. Kristy, where do you live in Tennessee, and how old are you? I have had TM for six years now and my hands are paralyzed, but thank God, I can walk. Take care and God bless you, Priscilla in Bristol, Tennessee Hello everyone, My name is Kristy Matheson I am from Tennessee. Im new to this so bare with me. I was just wondering if anyone has ever experienced cold spots on your legs or arms? I have had TM for 5 years now, In the past two weeks my feet get cold (really cold) and it will travel up to my knees, I also get it in my arms but not as much as in my legs Also during this my symptoms have multiplied. I would appreciate any input. Thankyou Kristy M ** See what's free at http://www.aol.com.
Re: [TMIC] Re: [Transverse Myelitis Support] I'm a newbie
I use the same program but I have a lot of mistakes, because of my Southern accent. :-). Priscilla in Tennessee In a message dated 3/22/2007 1:52:50 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Jude, I use the Dragon Naturally Speaking voice recognition program. It's a voice dictation program. I use it to type my e-mails or anything else that needs to be in print. I was taught how to use it in Rehabilitation Engineering at University of Michigan Hospital, while I was a patient there. Naomi C-4 quad since July 2, 2005 AOL now offers free email to everyone. Find out more about what's free from AOL at _AOL.com_ (http://www.aol.com/?ncid=AOLAOF0002000339) . ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
[TMIC] OT-Merry Christmas
Merrry Christmas and Happy New Year from Priscilla Keene in TN I'm happy to be celebrating Christmas with my lst grandchild Caden Isaiah Arnold--5 months old! God Bless you Everyone P.S.I just made a donation through Yahoo. How wonderful to get matching funds!!! Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.
Re: [TMIC] Lyrica and my EMG results-- my update
I started at 50mg three times a day, then increased it after a couple of weeks. I didn't wean off neurontin but started lyrica immediately after stopping neurontin with no problems. Priscilla in spooky TN
Re: [TMIC] Lyrica and my EMG results-- my update
I'm taking 75 mg three times a day at 10, 2, and 6pm. Priscilla in TN
[TMIC] (TMIC) Causes of TM
Other forms of myelitis may result from poliovirus, herpes zoster, herpesvirus B, or rabies virus; disorders that cause meningeal inflammation, such as syphilis, abscesses and other suppurative conditions, and tuberculosis; smallpox or polio vaccination; parasitic and fungal infections; and chronic adhesive arachnoiditis. My younger brother had polio when he was 18 months old and I was 8 years old. That was 55 years ago. My question is: Could the polio virus remained dormant in my body and then reared its ugly head and caused my TM 5 years ago? Or--could we have a geneticpredisposition for myelitis-type illnesses? I've often wondered if there was a connection. The paralysis he had was to his left eye! My paralysis is to both arms and hands. Priscilla in rainy TN
Fwd: [TMIC] OT-HOUSE
---BeginMessage--- Yes, the name is "House" and it's on Fox on Tuesday nights from 8-10 this summer, showing 2 reruns each week. PK in TN ---End Message---
[TMIC] OT: Dr. Kerr on TLC
The TLC program that Dr. Kerr was on was "Lethal Diet" on "Mystery Diagnosis." It was about a young boy whose body was producing too much lactic acid; Dr. Kerr put him on a special diet. Priscilla in TN
[TMIC] OT-HOUSE
Did anyone see "House" last night? The patient was diagnosed with TM which was a result of an extremely high exposure to radiation; consequently, the patient died. Dr. House has mentioned TM several times. Priscilla in TN
Re: [TMIC] JUDE coming off Neurontin onto Lyrica!!!
I also came off neurontin (3600 mg a day) and went on lyrica (225 mg a day) and had no trouble changing over. Lyrica has helped the burning and tingling in my legs tremendously, and I no longer have the diarrhea caused by neurontin. Priscilla in TN
[TMIC] Check out Lifeline - the most trusted medical alert service provider
I have a Life Line, and even though I've never had to use it yet, I feel much more secure. Click here: Lifeline - the most trusted medical alert service provider Priscilla in TN
Re: [TMIC] this about Lyrca and it works for a friend
In a message dated 2/23/2006 12:45:51 PM Eastern Standard Time, [EMAIL PROTECTED] writes: In a message dated 2/23/2006 12:34:59 AM Central Standard Time, [EMAIL PROTECTED] writes: Hi all I told my other group about Lyrca and Robyn has tried it. Well it sure worked for her and I didn't get the mgs she was on. When she posts about this I will send it over to you all. It was the best news I got for a while as far as given info I send back and forth between these 2 groups. I hope the rest have a chance to use it and if some one has called to see if the med can be reduced or given free from the drug company. Take care and hope you have a great day. Love to all Sally NC This is part of what she wrote me. saw my dr. on tuesday and she gave me the Lyrca (sp) you told me about well you've sure made more than my day, sweetie, you've made my LIFE! THANX SO MUCH absolutely, and not only that because it's helped with the neuropathy pain, I can now distinguish any discomforts I do get, so at least now I again know what pill to take for what!! cost about $143.00 for the Rx but really worth it, and my ins. co. pays 80 % so my cost was less than $40.00 for the month's supply Wingsofabirdie [1:01 A.M.]: absolutely, I'm used to living with discomfort and my Dr. knows it's mild if I say wee bit of discomfort, more if I say discomfort, and really noticable pain if I say "It's really uncomfortable" but this last month or so it's been absolute P-A-I-N and I told the Dr. this I also mentioned the above meds and then she was able to Rx it for me I am so happy she got the chance to use it and the pain is gone. I hope I can get to sleep tonight now. Sall On the other side, my doctor prescribed Lyrica for me a couple of weeks ago. She did not want me to take it at the same time I took Neurontin, so I was weaning myself off of one while starting to take the other. I don't know whether it is because I receive a lot of benefit from the Neurontin or if the Lyrica doesn't work for me. Maybe I haven't given it enough time. But, after a couple of days off of the Neurontin, even though I'm taking Lyrica, I am in so much pain, I have to get back on the Neurontin and as soon as I do, I feel much better. If somebody out there has any idea of how I can get myself onto the Lyrica, I would appreciate knowing it. My doctor says that I should not take the two medications at the same time. Peace, Jude Peace, Light and Lovefromme I have been taking Lyrica for over a month now and I like it much better than Neurontin. I don't have to take 9 Neurontin capsules every day, just 3 Lyrica (75 mg each). Neurontin gave me diarrhea so that's gone now. I just stopped taking Neurontin one day and started Lyrica immediately with no problems. Lyrica has taken away the burning sensation I had going down my spine and the tingling in my legs. Krissy, did you say you would sometimes take a half Neurontin pill? Mine were capsules. I would highly recommend Lyrica! Priscilla in TN
Re: [TMIC] dizziness
In a message dated 2/13/2006 2:07:45 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Since the end of January, I seem to have been losing ground. I can still walk, though I use a cane more often. I probably actually have more strength, but my energy (when I have it) doesn't last long, and I often feel week and really dizzy, even when I'm sitting. Something doesn't feel right, but it's kind of vague. I don't have anyreal pain - justthe soreness under my rib cageand the irritating tingling and burning in my legs/feet - Ican handle that. Compared to many of your challenges,a little dizzinessis nothing. But I'm concerned that I need to get back to work before too long, and I can't imagine working even 4 hours/day, the way I'm feeling. If I have an appointment, or have to get groceries, etc., it's about all I can do in one day! And I try to schedule things every other day, so I'm not totally wiped out. Is this typical, or just me? (The latter isn't new - just the dizziness is new.) When the weakness/dizziness hits me, I have to lay downto feel better, even though perhaps just15 minutes before, I may havefeltfairly normal. The only meds I take is OTC Senna S. In the hospital (9 mos ago) they started me with 6/day. I've managed to get down to 3/day, but am wondering if taking it for so long might be affecting me this way. Anyone have any experience with this feeling, or with Senna S, or have any suggestions? Thanks, Sally Hi Sally, I first experienced dizziness in the rehab hospital about a week after I was hit with TM. The nurse saw that I was about to pass out and lowered the back of my wheelchair. My blood pressure had plummeted suddenly. I still have low blood pressure and have to take Proamatine three times a day. It usually goes down after I eat. Sometimes I get very weak and have to lie down and end up taking a nap.It really zaps my energy when this happens. Have someone to take your bp often to see if this might be your problem. Ironically, my bp was on the high side before TM. I hope this helps. Hugs, Priscilla in TN Happy valentine's day everyone!
[TMIC] Lyrica
I don't write often, but I read the posts every day. I am 63 and I have had TM since May of 2001. I can walk short distances like from my front door down the sidewalk to a car, and then my legs get weak, and I have to sit a while. I have very little use of my fingers, hands, and arms which makes it impossible to hold anything like a fork or book or newspaper, or batheor dress myself. You can imagine me trying to go to the bathroom. I have had chronic diarrhea over 4 years until last week. I asked my doctor to prescribe Lyrica instead of Neurontin. So far it is working great for me and no more diarrhea three times a day! What a blessing to be regular again and no more accidents. I wishmy doctor hadfound Neurontin was causing it long ago, instead of treating me for Crohn's Disease. Thanks to this website I have learned so much about TM and its treatment. I now take 75 mg. of Cymbalta once a day, 50 mg. of Lyrica 3 times a day, Oxytrol patches, and Proamatine for low bp twice a day. Next week I will increase the Lyrica to 75 mg. Lyrica is helping my mobility just a little more than Neurontin, but my legs feel colder. Its side effects for me are thirst and insomnia. Thank you, my friends, forsharing your experiences. I am feeling so much better. Priscilla in TN My prayers are with Tom Carr's family and friends. I do believe he has passed away.
[TMIC] October birthday babies
Havahappy day, Peachy in TN
