Fwd: [TMIC] Re: Sweating
**Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom000301) ---BeginMessage--- Hi there, I had mono (didn't know it was called Epstein Barre) when I was 40. My doctor laughed and said I was just an old teenager at the time. My daughter was a teen of 18 and my son a teen of 15 and we all had it. We were all very sick. My son is now 37 and if he gets run down he tends to end up with a mild case of mono all over again. Why do you ask? Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Sunday, March 23, 2008 5:57 PM Subject: [TMIC] Re: Sweating HI DEBI, I GET RASHES OUT OF THE BLUE. ON MY LEGS AND RECENTLY ON MY BACK. VERY ITCHY AND TAKES ALONG TIME FOR THEM TO GO AWAY. I AM GOING TO POST ANOTHER QUESTION TO EVERYONE. HAS ANYONE OUT THERE HAD MONONUCLEOSIS (EPSTEIN BARRE) IN THEIR LIFE? LINDA IN PA -- Create a Home Theater Like the Pros. Watch the video on AOL Home. -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.8/1339 - Release Date: 3/22/2008 4:43 PM ---End Message---
[TMIC] Checking TMIC, again!
Please let me know if you get this? Sounds like I might be having trouble getting to you, again! Thanks! Jeanne in Dayton, WA
Re: [TMIC] requesting advice from you experienced souls
Hi, Jenna! I'm worried about you so thought I would send a note to see how you are today? That darned thyroid can cause all sorts of problems and losing your hair is one of them. Are you able to help it at all with meds? Please let us know how you're doing. We care, Jeanne in Dayton, WA ---Original Message--- From: Jenna Date: 3/21/2008 7:59:42 PM To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; Fellows-n-Ladies TMIC Subject: Re: [TMIC] requesting advice from you experienced souls I agree with you Frank. My adrenals and thyroid are both damaged from all the IV steroids. Right now I am under a great deal of stress because of other things in my life and my thyroid is just not handling it well at all and my hair is falling out in great amounts every day. I even went in today and cut my hair short because of it. So just be careful with the steroids, really way the benefits with the risk. Good luck! Jenna - Original Message From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; Fellows-n-Ladies TMIC tmic-list@eskimo.com Sent: Friday, March 21, 2008 4:01:59 PM Subject: Re: [TMIC] requesting advice from you experienced souls I get relief by taking 4mg of the steroid Prednizone (sp?) to reduce the swelling of my spinal cord. Hi, My name is Frank. I was afflicted with TM in 2000. I was given Predisone when I was first treated- They started with a big dose (120 mg) then tapered down to 0mg over three weeks, and that was all I got. Prednisone is a nasty cortisone. You shouldn't be using as needed, it will mess up your whole body, causing high blood pressure, adrenal failure, bleeding ulcers...I could go on. Stop the Prednisone, and find a neurologist who know how to treat TM Good Luck F Looking for last minute shopping deals? Find them fast with Yahoo! Search.
Re: [TMIC] DRY, FLAKY, ITCHY, SCALY TM SKIN ANSWER...
AS I'm paralyzed, skin care is critical. I use mainly baby stuff-- Johnson's baby creme, Johnson's softlotion is my favorite scent, but also like Johnson's baby lotion. I shower with Johnson's softwash. I also use on occasion, zinc oxide creme and 1% hydrocortisone by Walmart. Akua I have hit on something I have to share with all of you. After my shower yesterday I rubbed my feet and legs with Johnson's Baby Oil...and then with a new product they've come out with Johnson's bedtime touch massage gel. Wow..! What a difference in my skin this morning! I'll be hitting the baby aisle more often when shopping. Love, Lynn -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.healrecover.blogspot.com http://www.akualezli.blogspot.com
[TMIC] So strange
Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
Re: [TMIC] DRY, FLAKY, ITCHY, SCALY TM SKIN ANSWER...
I'm hearing all sorts of good things about Johnson's and I see that Walgreen s has some great sales on them, if you happen to have the store in your area Jeanne in Dayton, WA ---Original Message--- From: Akua Date: 3/24/2008 9:39:28 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] DRY, FLAKY, ITCHY, SCALY TM SKIN ANSWER... AS I'm paralyzed, skin care is critical. I use mainly baby stuff-- Johnson's baby creme, Johnson's softlotion is my favorite scent, but also like Johnson's baby lotion. I shower with Johnson's softwash. I also use on occasion, zinc oxide creme and 1% hydrocortisone by Walmart. Akua I have hit on something I have to share with all of you. After my shower yesterday I rubbed my feet and legs with Johnson's Baby Oil...and then with a new product they've come out with Johnson's bedtime touch massage gel. Wow..! What a difference in my skin this morning! I'll be hitting the baby aisle more often when shopping. Love, Lynn -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.healrecover.blogspot.com http://www.akualezli.blogspot.com
RE: [TMIC] So strange
I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
RE: [TMIC] So strange
Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
RE: [TMIC] So strange
many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time, because the feelings are somewhat different, and for TM'rs change is never good. It seems that when I start to get used to the feelings I have, and try to accept them, they suddenly change. I try to live with TM as best as I can. I try to keep a positive attitude and give thanks that I am able to work, walk and drive which so many of my fellow TM'rs cannot dobut some days are harder than others! Last week I heard from one of our group who after 11 years had a relapse. For me this is truly scary. I don't know what I would do if this happened to me. I have had TM for more than 10 years and I am now 60, which means that on top of TM I am starting to experience the problems that come with aging such as arthritis. Sometimes I feel that the only place we can go is down! Sorry for the depressing attitude...I just need to talk to the group when I feel this way and then forget about it, get back my positive attitude, and move on. Thank you for letting me vent! Rob in New Jersey
Re: [TMIC] Fwd: Sweating
My lesion is T6 -T10 and I am extremely sensitive at my banding area and from there to the toes my feelings are opposite (cold feels freezing and hot feels cool). That area is also hypersensitive but not as bad as bannding area. On my chest and left arm I get splotches about nickle size that look like bruises and my doctor gave me cream to put on them and theyclear right up. Ella in Ohio **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom000301)
[TMIC] It's okay...
You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty , and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a fast topic for discussion. In my case TM is like a box of chocolates...you never know what you are going to get! It seems to me that how I feel from day to day is never the same! Some days are just terrible and some days are not so bad. I cannot point to the weather because that does not always have an effect on me. I do know if I get sick, even with a cold, my symptoms are always worse. Today is a beautiful day in sunny New Jersey and yet I feel terrible...why? For me the biggest problem is the banding on my right leg just above the knee. When it gets very bad (like today) it makes walking much more difficult and I walk with an even stiffer leg than usual. Is it possible that as our spine regenerates (even though it is a very long process...decades) we still experience changes all the time,
RE: [TMIC] It's okay...
Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitudewe either continue living or chose to start dying! I choose life! Rob in New Jersey From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette mailto:[EMAIL PROTECTED] Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange Date: Mon, 24 Mar 2008 10:56:52 -0400 Just a
[TMIC] just another gloomy day
Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer...sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... - Never miss a thing. Make Yahoo your homepage.
RE: [TMIC] It's okay...
Me, too, by gum!!! BUT, it is okay to have those days where we need to curl up in bed, rest our body and soul and then get up and start all over again! j ---Original Message--- From: Robert Pall Date: 3/24/2008 1:40:04 PM To: jrushton; Gerry Surette; tmic-list@eskimo.com Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitude... we either continue living or chose to start dying! I choose life! Rob in New Jersey From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty , and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you
RE: [TMIC] just another gloomy day
Sal: I do understand and my heart goes out to you because I am where you are. I have tried so hard to no avail. this the first time in my life that I got sick and no one said don't worry...you will get better. What I try to do is limit the time that I feel sorry for myself..simply because it serves no purpose. Hang in there...we all get down and depressed...that is what the list is for! Regards, Rob in New Jersey From: sal r [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 2:43 PM To: tm Subject: [TMIC] just another gloomy day Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer...sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... Never miss a thing. Make Yahoo your homepage. http://us.rd.yahoo.com/evt=51438/*http://www.yahoo.com/r/hs
RE: [TMIC] just another gloomy day
WE all feel that way; you are not alone; by the way Please forgive me for saying this but one aspect of TM is depression; you sound as if you are experiencing some of this ARE you perhaps taking any depreesive medication; It is part and parcel of TM We are one family experiencing all that you have been going through. Consider yourself hugged.; and held in our arms. god bless you and may he give you the strenght to carry on. From: sal r [EMAIL PROTECTED] To: tm tmic-list@eskimo.com Subject: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 11:43:16 -0700 (PDT) Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer...sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... - Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] It's okay...
Jeanne, It is okay to have a 'Pity Party for One' at times. Sort of clears the air. I do that every once in a while myself and I'm sure that more of us do it as well. Heather in Calgary - Original Message - From: jrushton To: Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 10:14 AM Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I too am 60 years young. My plete count has gone way down a side effect of TM after numerous treatments i now have itp. I have gone through three treatments of immunoglobiulin which have not worked. Now I have another treatment to go through to raise my plete count at which time they will remove my speen. I urge everyone to have there white blood cells plete count examined on a regular bases. Life with TM is always a daily challenge. like they say it is like a box of choclate you never know what will happen day to day. yes you have to have a positive attidude. It is your life and you only have control of it. It is up to you to decide if you will fight it or let it get to you. for me I would rather fight . It is hard but life is worth it From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] So strange
Re: [TMIC] It's okay...
Rob, I have never counted the days since I got TM. I just go by years. For me it is now 4 1/2 yrs. I think if I counted the days I would probably curl up in a ball and not uncurl for a long time. Positive attitude is what we need but as I said to Jeanne it is okay to have a little 'Pity Party for One' every now and again. Now I'm going to figure out what 4000 days computes to. Have a good day Heather in Calgary - Original Message - From: Robert Pall To: jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 12:39 PM Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitudewe either continue living or chose to start dying! I choose life! Rob in New Jersey -- From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know
Re: [TMIC] just another gloomy day
I remember when I was in ICU and we were just two months from a trip we had been planning to go to Costa Rica. Even in ICU as I lay there totally paralyzed from the chest down, a tube down my throat because nothing was working in my digestive system nor my potty parts so they had to pump my stomach but oh, no!! I was in this denial that anything was wrong and even if it was it wasn't going to last!! My brother-in-law came to see me and I was oh-so deniably up in spirits and he looked me in the eye and said, Jeanne, you are not going to be able to go to Costa Rica. That next morning about 1AM while it was so dark and in the room, I lay there with Jack asleep propped up in the corner and it hit me how serious this was. How it wasn't just going to go away. How no one knew what was wrong and I was at one of the best hospitals in Washington. How I may never be any different than flat on my back for the rest of my life. No, I wasn't feeling very positive then. All of the times I had to be cathed because nothing would work and the horrible pain it caused and the numerous times they had to change my (yes) diaper. How they had to pick me up holding me under my arms because everything below that was 'dead' just to put me on a bedside commode to 'try' to see if anything would work...which it wouldn't and then all of the 'accidents'. The weeks in PT/OT where I would be dripping wet after just trying to hold myself up on the bars...oh, myit was so very hard and it seemed like it would never, ever end. Now it's been a couple years and there hasn't been a whole lot of change. I do all of my own PT only because we live an hour away and the price of gas is so high. We are blessed to have a hot tub so I can do water therapy and Jack, bless his heart, is making me a walking path so I can do a different type of PT. Sometimes at night if I have overdone the PT, I lay just writhing in pain from the spasms. I can't give up. If I do, I'll end up on my back and heck! I would miss out on too much!!! It's okay to feel blue and discouraged, Gerry, but that is where I hope all of us can kick in and help you back to blue skies and encouragement. We are here for you but most of all, our prayers are what will help you! God Bless You, dear one, Jeanne ---Original Message--- From: sal r Date: 3/24/2008 1:43:30 PM To: tm Subject: [TMIC] just another gloomy day Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer.. sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] It's okay...
When i feel as you do I Have a perfect solution; Have a nice warm bubble
bath; I have rpoblems with my circulation; mt feet are usually purple; I
light a candle drop myself in an empty bath; { I have rpoblems
distinguishing hot and cold) let the water flow over me. Move my legs to
increase the bubbles and as James brown says in his song I feel so good.
From: Heather Pieter [EMAIL PROTECTED]
To: Robert Pall [EMAIL PROTECTED], jrushton
[EMAIL PROTECTED], Gerry Surette [EMAIL PROTECTED],
tmic-list@eskimo.com
Subject: Re: [TMIC] It's okay...
Date: Mon, 24 Mar 2008 13:29:22 -0600
Rob,
I have never counted the days since I got TM. I just go by years. For me
it is now 4 1/2 yrs. I think if I counted the days I would probably curl
up in a ball and not uncurl for a long time. Positive attitude is what we
need but as I said to Jeanne it is okay to have a little 'Pity Party for
One' every now and again. Now I'm going to figure out what 4000 days
computes to.
Have a good day
Heather in Calgary
- Original Message -
From: Robert Pall
To: jrushton ; Gerry Surette ; tmic-list@eskimo.com
Sent: Monday, March 24, 2008 12:39 PM
Subject: RE: [TMIC] It's okay...
Jeanne:
What a wonderful e mail. You are so right in your thinking! I truly
believe that only someone who has TM can appreciate what we are going thru.
I have often said to my wife that I wish she could have my TM for just 5
minutes. Then perhaps she could or would understand the horror of having a
condition which no matter how hard we try never really gets better.and
is with us 24/7 always. For me that means that nearly the past 4000 days
have been without relief! Yet I still try to maintain a positive
attitudewe either continue living or chose to start dying! I choose
life!
Rob in New Jersey
--
From: jrushton [mailto:[EMAIL PROTECTED]
Sent: Monday, March 24, 2008 12:14 PM
To: Gerry Surette; tmic-list@eskimo.com
Subject: [TMIC] It's okay...
You can be as emotional as you want, any time you want!! I think
most of us try to be 'up' and 'positive' as often as we can but there comes
a time when our old bodies just plain get bone tired and then it's time to
take the time for ourselves to rest, both physically and emotionally.
When I first came down with TM, I decided I was going to be old
Mary Poppins and choose the positive over the negative which is the way
I've always liked to live my life as often as I could...the 'cup is half
full' not 'half empty', and laugh so I don't cry? Well, that can still
work a good part of the time but by gosh, you just can't always make it!
AND it's okay!!!
Not too long ago I decided I was taking way too much Lyrica
(approved by my provider) because I didn't like the side effects. Well,
the first week was one of the worst and there were definite withdrawals
both horribly painful and emotional. One day I was on the front porch
swing just sobbing from my toes and who shows up but one of my daughters
right out of the blue. (God's doing, for sure) and I just couldn't stop
crying. It scared her to death because both my girls don't see me cry very
often. I usually laugh just to hear myself laugh (true!). Well, this was
a cleansing of the soul and a good way to get some of that 'stuff' out of
my body, I would swear. After that, I felt better, got lots of good hugs
from my daughter and Jack and I was back on my way. Sometimes we are so
hard on ourselves. God wants us to be good to ourselves so we can also be
good to others.
Jeanne
---Original Message---
From: Gerry Surette
Date: 3/24/2008 11:58:01 AM
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] So strange
many thanks; The procedure itself is not painful; the bone marrow
retival
for biopsy is uncomfortable. the side effects though of three days
for five
hours each day is to say the least NEVER AGAIN I had a high
fever chills
etc; on top of my leg and feet spasms. It was certainly a
memerable week
Thank God jesus was by my side as well as my wife who when I had
my spams I
tend to hypervenilate; the pain is so great. She is there to calm
me down
and help me breathe normally until my spasm ends. You all know
what these
are. it is TM: life is never preditable. you have to roll with
the
punches. You just have to be thankful that the day you have no
pain is a
blessing. You have to make the best of it. Sorry if I am being
emotional but
the is the way I feel I have to take each day as it comes and be
thankful
for any blessing I receive. gerry
From: jrushton [EMAIL PROTECTED]
To: Gerry Surette [EMAIL PROTECTED],
tmic-list@eskimo.com
Subject: RE: [TMIC] So strange
Re: [TMIC] It's okay...
Heather, you made us laugh over the 4000 days! Funny you should call it a Pity Party' because that is exactly what I call it, too!! We are way too smart!!! j ---Original Message--- From: Heather Pieter Date: 3/24/2008 2:29:48 PM To: Robert Pall; jrushton; Gerry Surette; tmic-list@eskimo.com Subject: Re: [TMIC] It's okay... Rob, I have never counted the days since I got TM. I just go by years. For me it is now 4 1/2 yrs. I think if I counted the days I would probably curl up in a ball and not uncurl for a long time. Positive attitude is what we need but as I said to Jeanne it is okay to have a little 'Pity Party for One' every now and again. Now I'm going to figure out what 4000 days computes to Have a good day Heather in Calgary - Original Message - From: Robert Pall To: jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 12:39 PM Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitude... we either continue living or chose to start dying! I choose life! Rob in New Jersey From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty , and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being emotional but the is the way I feel I have to take each day as it comes and be thankful for any blessing I receive. gerry From: jrushton [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED], tmic-list@eskimo.com Subject: RE: [TMIC] So strange Date: Mon, 24 Mar 2008 09:04:10 -0500 (Central Daylight Time) Gerry! I was just getting ready to ask if anyone had heard from you! You have really gone thru some rough times and now they are going to remove your spleen? Your advise is good...thank you! You are in my prayers..Jeanne in Dayton, WA ---Original Message--- From: Gerry Surette Date: 3/24/2008 10:15:02 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange I know exactly how you feel. I 've had tm since the age 0f 21 have been able to function until 2001 when I had a relapse. I
RE: [TMIC] just another gloomy day
Yes, I am, Gerry! I was on Lexapro 10mg. for a long time for PMS and when the TM happened I was off of it while they did all of the testing so I asked the doctor if I could stay off and he said, No, you will need it more now than before. It is one of the main side effects of TM. So, it is important that we do have it and I'm so thankful it's available! j ---Original Message--- From: Gerry Surette Date: 3/24/2008 2:27:19 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] just another gloomy day WE all feel that way; you are not alone; by the way Please forgive me for saying this but one aspect of TM is depression; you sound as if you are experiencing some of this ARE you perhaps taking any depreesive medication; It is part and parcel of TM We are one family experiencing all that you have been going through. Consider yourself hugged.; and held in our arms. god bless you and may he give you the strenght to carry on. From: sal r [EMAIL PROTECTED] To: tm tmic-list@eskimo.com Subject: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 11:43:16 -0700 (PDT) Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer...sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... - Never miss a thing. Make Yahoo your homepage.
[TMIC] Today's mail
Hi Everyone, Today's mail shows just what the list is all about.Someone vents,others respond and a warm feeling is generated throughout. I've had tm since 8/13/95 and this group has helped so much.I don't post often,but I read all the letters and get strength from them. So,thanks for being there,my family who truly understands what tm is. Cheryl in Easthampton,Mass. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] just another gloomy day
been there had that; M y experience in ICU was over the xmas holidays. the ICU nurse was a god send. I was laying in bed. with tons of monitors; a catater up my penis paralyis from the lung cage down. My heart had stopped when they had tried to do a milogram. All of a sudden with two intravnous drip of demeral I felf I had to pee' The monitors went crazy; The nurse came over and asked me if I was okay; I replied that I wanted to pee. She smiled as if I was out of my mind. bearing in mind that until that moment I was parilize from the lung cage down; She said to go ahead. My caterter was not placed far enough in my pernis and I let go. The CAterter went out and I sprayed my pee like a hose. all over the machines ; She didn't know what to make of it. remember it is xmas time; no one is available. she cleaned me up and worked my legs for what seemed to be hours. I fell asleep. and remember waking up up with her at my side with a wet spnge on my lips. God bess her She did what no one else could do she gave me hope. From: jrushton [EMAIL PROTECTED] To: sal r [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 12:13:40 -0500 (Central Daylight Time) I remember when I was in ICU and we were just two months from a trip we had been planning to go to Costa Rica. Even in ICU as I lay there totally paralyzed from the chest down, a tube down my throat because nothing was working in my digestive system nor my potty parts so they had to pump my stomach but oh, no!! I was in this denial that anything was wrong and even if it was it wasn't going to last!! My brother-in-law came to see me and I was oh-so deniably up in spirits and he looked me in the eye and said, Jeanne, you are not going to be able to go to Costa Rica. That next morning about 1AM while it was so dark and in the room, I lay there with Jack asleep propped up in the corner and it hit me how serious this was. How it wasn't just going to go away. How no one knew what was wrong and I was at one of the best hospitals in Washington. How I may never be any different than flat on my back for the rest of my life. No, I wasn't feeling very positive then. All of the times I had to be cathed because nothing would work and the horrible pain it caused and the numerous times they had to change my (yes) diaper. How they had to pick me up holding me under my arms because everything below that was 'dead' just to put me on a bedside commode to 'try' to see if anything would work...which it wouldn't and then all of the 'accidents'. The weeks in PT/OT where I would be dripping wet after just trying to hold myself up on the bars...oh, myit was so very hard and it seemed like it would never, ever end. Now it's been a couple years and there hasn't been a whole lot of change. I do all of my own PT only because we live an hour away and the price of gas is so high. We are blessed to have a hot tub so I can do water therapy and Jack, bless his heart, is making me a walking path so I can do a different type of PT. Sometimes at night if I have overdone the PT, I lay just writhing in pain from the spasms. I can't give up. If I do, I'll end up on my back and heck! I would miss out on too much!!! It's okay to feel blue and discouraged, Gerry, but that is where I hope all of us can kick in and help you back to blue skies and encouragement. We are here for you but most of all, our prayers are what will help you! God Bless You, dear one, Jeanne ---Original Message--- From: sal r Date: 3/24/2008 1:43:30 PM To: tm Subject: [TMIC] just another gloomy day Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer.. sorry if i sound negative but need to clear my head...no one else i can talk to that will understand... Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] Today's mail
You are welcome as sunshine!! Jeanne ---Original Message--- From: [EMAIL PROTECTED] Date: 3/24/2008 3:21:35 PM To: tmic-list@eskimo.com Subject: [TMIC] Today's mail Hi Everyone, Today's mail shows just what the list is all about.Someone vents,others respond and a warm feeling is generated throughout. I've had tm since 8/13/95 and this group has helped so much.I don't post often,but I read all the letters and get strength from them. So,thanks for being there,my family who truly understands what tm is. Cheryl in Easthampton,Mass. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] just another gloomy day
I think we all probably have a lot of 'potty-oops' stories, many humorous As a nurse, they are like talking about the weather! My little grandson told me while I was in the hospital, Hey, Nanny!!! Let's all go to Disneyland together and we'll all wear Nanny diapers then we'll never have to stop to go to the bathroom! We can just throw them in the trash and put on new ones! Heck, I still have the 'potty-oops' stories!!! Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 3:25:57 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] just another gloomy day been there had that; M y experience in ICU was over the xmas holidays. the ICU nurse was a god send. I was laying in bed. with tons of monitors; a catater up my penis paralyis from the lung cage down. My heart had stopped when they had tried to do a milogram. All of a sudden with two intravnous drip of demeral I felf I had to pee' The monitors went crazy; The nurse came over and asked me if I was okay; I replied that I wanted to pee. She smiled as if I was out of my mind. bearing in mind that until that moment I was parilize from the lung cage down; She said to go ahead. My caterter was not placed far enough in my pernis and I let go. The CAterter went out and I sprayed my pee like a hose. all over the machines ; She didn't know what to make of it. remember it is xmas time; no one is available. she cleaned me up and worked my legs for what seemed to be hours. I fell asleep. and remember waking up up with her at my side with a wet spnge on my lips. God bess her She did what no one else could do she gave me hope. From: jrushton [EMAIL PROTECTED] To: sal r [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] just another gloomy day Date: Mon, 24 Mar 2008 12:13:40 -0500 (Central Daylight Time) I remember when I was in ICU and we were just two months from a trip we had been planning to go to Costa Rica. Even in ICU as I lay there totally paralyzed from the chest down, a tube down my throat because nothing was working in my digestive system nor my potty parts so they had to pump my stomach but oh, no!! I was in this denial that anything was wrong and even if it was it wasn't going to last!! My brother-in-law came to see me and I was oh-so deniably up in spirits and he looked me in the eye and said, Jeanne, you are not going to be able to go to Costa Rica. That next morning about 1AM while it was so dark and in the room, I lay there with Jack asleep propped up in the corner and it hit me how serious this was. How it wasn't just going to go away. How no one knew what was wrong and I was at one of the best hospitals in Washington. How I may never be any different than flat on my back for the rest of my life. No, I wasn't feeling very positive then. All of the times I had to be cathed because nothing would work and the horrible pain it caused and the numerous times they had to change my (yes) diaper. How they had to pick me up holding me under my arms because everything below that was 'dead' just to put me on a bedside commode to 'try' to see if anything would work...which it wouldn't and then all of the 'accidents'. The weeks in PT/OT where I would be dripping wet after just trying to hold myself up on the bars...oh, myit was so very hard and it seemed like it would never, ever end. Now it's been a couple years and there hasn't been a whole lot of change. I do all of my own PT only because we live an hour away and the price of gas is so high. We are blessed to have a hot tub so I can do water therapy and Jack, bless his heart, is making me a walking path so I can do a different type of PT. Sometimes at night if I have overdone the PT, I lay just writhing in pain from the spasms. I can't give up. If I do, I'll end up on my back and heck! I would miss out on too much!!! It's okay to feel blue and discouraged, Gerry, but that is where I hope all of us can kick in and help you back to blue skies and encouragement. We are here for you but most of all, our prayers are what will help you! God Bless You, dear one, Jeanne ---Original Message--- From: sal r Date: 3/24/2008 1:43:30 PM To: tm Subject: [TMIC] just another gloomy day Have you ever just felt that no matter how positive you are, it just doesnt help? this may sound funny but at this point in my life, before i keep going i am very thankful for the recovery i have made so farbut like i was saying have u ever seen those cartoons where they put a carrot in front of the horse to get it to move and the poor horse however hard he tries he just cant get it even though its so close to him...well thats how i feel...i have so much recovery (again very thankful) but however hard i try i have felt ive reached a milestone life and will not recover more then this...then i ask myself...whats the point of ongoing rehab? and i have no answer.. sorry if i sound negative but need to clear my head...no one else i can talk to that
[TMIC] JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
I JUST GOT OFF THE PHONE WITH JUDE. THE DOCTOR SAID HE DID NOT THINK IT WOULD KILL HER DEPENDING ON THE TUNNELING.SHE HOPES HE IS NOT LYING TO HER. WE GOT DISCONNECTED BUT HER DINNER WAS THERE. SO HOPEFULLY SOME TRUE GOOD NEWS.SHE DOES HAVE MSRA AND STAPH IN HER BONES. HER BUTTUCKS ON BOTH SIDES ARE TUNNELING THE SORES ARE GOING DOWN HER LEGS. SHE SOUNDED BETTER. SHE WANTED ME TO ASK FRANK HIS OPINION AND TO TELL IT LIKE HE WOULD THINK. SHE SAID E-MAIL IT TO ME. SHE CANNOT HAVE HER COMPUTER THERE NOW. ITS SO UPSETTING THAT THE HOME TOLD HER THE SORES WHERE HEALING WHEN THEY WHERE NOT AND SHE KEPT TELLING THEM SHE WAS SO SICK.HOW COULD THEY DO SOMETHING LIKE THAT.IF SHE WILL NOT GET WELL SHE WANTS TO GO HOME AND HAVE HOSPICE. IF ANYONE HAS THE POEM I WROTE HER COULD YOU SEND IT TO ME, I DID NOT SAVE IT.HERS IS LOST .I AM GOING TO WRITE ANOTHER ONE BUT SHE WANTS THE FIRST ONE.WE ARE HER FAMILY LIKE PATTI SAID. THANKS FOR GOING TO SEE HER PATTI.SO MANY PEOPLE I CANNOT THANK YOU ALL BUT SHE TALKED ABOUT SO MANY OF YOU. GOD BLESS OUR JUDE AND TM FAMILY! **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom000301)
[TMIC] Hello Again
It's been a long time since I have written but I check the list often because I do not want to lose touch with this group.My computer crashed so I switched over to a Mac and a new e-mail address, I have my darling grandson, Declan and my oldest son (I have two adult boys and two adult girls) will be getting married to a beautiful teacher that I introduced him to and there's just all sorts of things going on . yada, yadayada. :) I tread carefully regarding religion politics... but for what it's worth... I am a believer in alife after death. where I will most definitely soar with eagles, dance with angels and rejoice at the banquet table with my family, my friends and my Triune Deity. I love to look at the pictures that come back from Space. what a universe!!! It's beyond anything we could ever imagine and some day in the not too distant future I will stand at the edge of dawn with complete knowledge of the mystery of life Trudy P.S. I am also a firm believer in pity parties... especially with ice cream and chocolates I think it's an Irish thing... I have written to Jude and keep up with her news. Has anyone heard how Bernard Pelow is doing?? I sent an e-mail but no reply
Re: [TMIC] So strange
HI ROB, I AGREE. I HAD 2 BAD MONTHS BUT SEEM TO BE ON THE UPSWING. EVERYDAY IS A NEW ADVENTURE. SOMETIMES IT IS GOOD TO VENT AND WE ALL KNOW HOW THIS CRAZY THING GOES, SO DON'T APOLOGIZE, WE ALL FEEL THE SAME WAY. LINDA IN PA **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom000301)
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] It's okay...
My two cents...I agree. It's OK to have the pity party. I have a recipe that never fails me in trying times. I sit where I can see a clock and I give myself 15 minutes to cry, rant or scream - fifteen minutes a day, always at the same time. The rest of the time, I chase away negative thoughts. I continue the 15 min. sessions for as many days as I need. Amazingly, after a few days, I have no more tears left and I start to feel a bit silly because I need fewer and fewer minutes to think about myself and my pain and my disability. Life is good again - difficult but good. Diane in Canada - Original Message - From: Heather Pieter To: Robert Pall ; jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 3:29 PM Subject: Re: [TMIC] It's okay... Rob, I have never counted the days since I got TM. I just go by years. For me it is now 4 1/2 yrs. I think if I counted the days I would probably curl up in a ball and not uncurl for a long time. Positive attitude is what we need but as I said to Jeanne it is okay to have a little 'Pity Party for One' every now and again. Now I'm going to figure out what 4000 days computes to. Have a good day Heather in Calgary - Original Message - From: Robert Pall To: jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 12:39 PM Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitudewe either continue living or chose to start dying! I choose life! Rob in New Jersey From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty', and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally until my spasm ends. You all know what these are. it is TM: life is never preditable. you have to roll with the punches. You just have to be thankful that the day you have no pain is a blessing. You have to make the best of it. Sorry if I am being
Re: [TMIC] It's okay...
Great idea, Diane!!! I do have to say that having a disability has its good points, though! By golly, when we get into the airport there is hardly a time when someone doesn't physically take me in my wheelchair right to the front of the line and walk me through! Plus the handicapped rooms at the hotels usually are larger and so easy to move around in! We've got to look at the brighter points every chance we get, don't we!!? Jeanne ---Original Message--- From: Diane Date: 3/24/2008 8:05:59 PM To: Heather Pieter; Robert Pall; jrushton; Gerry Surette; tmic-list@eskimo.com Subject: Re: [TMIC] It's okay... My two cents...I agree. It's OK to have the pity party. I have a recipe that never fails me in trying times. I sit where I can see a clock and I give myself 15 minutes to cry, rant or scream - fifteen minutes a day, always at the same time. The rest of the time, I chase away negative thoughts. I continue the 15 min. sessions for as many days as I need. Amazingly, after a few days, I have no more tears left and I start to feel a bit silly because I need fewer and fewer minutes to think about myself and my pain and my disability. Life is good again - difficult but good. Diane in Canada - Original Message - From: Heather Pieter To: Robert Pall ; jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 3:29 PM Subject: Re: [TMIC] It's okay... Rob, I have never counted the days since I got TM. I just go by years. For me it is now 4 1/2 yrs. I think if I counted the days I would probably curl up in a ball and not uncurl for a long time. Positive attitude is what we need but as I said to Jeanne it is okay to have a little 'Pity Party for One' every now and again. Now I'm going to figure out what 4000 days computes to Have a good day Heather in Calgary - Original Message - From: Robert Pall To: jrushton ; Gerry Surette ; tmic-list@eskimo.com Sent: Monday, March 24, 2008 12:39 PM Subject: RE: [TMIC] It's okay... Jeanne: What a wonderful e mail. You are so right in your thinking! I truly believe that only someone who has TM can appreciate what we are going thru. I have often said to my wife that I wish she could have my TM for just 5 minutes. Then perhaps she could or would understand the horror of having a condition which no matter how hard we try never really gets better.and is with us 24/7 always. For me that means that nearly the past 4000 days have been without relief! Yet I still try to maintain a positive attitude... we either continue living or chose to start dying! I choose life! Rob in New Jersey From: jrushton [mailto:[EMAIL PROTECTED] Sent: Monday, March 24, 2008 12:14 PM To: Gerry Surette; tmic-list@eskimo.com Subject: [TMIC] It's okay... You can be as emotional as you want, any time you want!! I think most of us try to be 'up' and 'positive' as often as we can but there comes a time when our old bodies just plain get bone tired and then it's time to take the time for ourselves to rest, both physically and emotionally. When I first came down with TM, I decided I was going to be old Mary Poppins and choose the positive over the negative which is the way I've always liked to live my life as often as I could...the 'cup is half full' not 'half empty , and laugh so I don't cry? Well, that can still work a good part of the time but by gosh, you just can't always make it! AND it's okay!!! Not too long ago I decided I was taking way too much Lyrica (approved by my provider) because I didn't like the side effects. Well, the first week was one of the worst and there were definite withdrawals both horribly painful and emotional. One day I was on the front porch swing just sobbing from my toes and who shows up but one of my daughters right out of the blue. (God's doing, for sure) and I just couldn't stop crying. It scared her to death because both my girls don't see me cry very often. I usually laugh just to hear myself laugh (true!). Well, this was a cleansing of the soul and a good way to get some of that 'stuff' out of my body, I would swear. After that, I felt better, got lots of good hugs from my daughter and Jack and I was back on my way. Sometimes we are so hard on ourselves. God wants us to be good to ourselves so we can also be good to others. Jeanne ---Original Message--- From: Gerry Surette Date: 3/24/2008 11:58:01 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] So strange many thanks; The procedure itself is not painful; the bone marrow retival for biopsy is uncomfortable. the side effects though of three days for five hours each day is to say the least NEVER AGAIN I had a high fever chills etc; on top of my leg and feet spasms. It was certainly a memerable week Thank God jesus was by my side as well as my wife who when I had my spams I tend to hypervenilate; the pain is so great. She is there to calm me down and help me breathe normally
Re: [TMIC] Hello Again
Oh, Trudythat is so beautiful! Thanks you so much for sharing with us. Jeanne ---Original Message--- From: Trudy Ogilvie Date: 3/24/2008 7:25:27 PM To: tmic-list@eskimo.com Subject: [TMIC] Hello Again It's been a long time since I have written but I check the list often because I do not want to lose touch with this group. My computer crashed so I switched over to a Mac and a new e-mail address, I have my darling grandson, Declan and my oldest son (I have two adult boys and two adult girls) will be getting married to a beautiful teacher that I introduced him to and there's just all sorts of things going on . yada, yadayada. :) I tread carefully regarding religion politics... but for what it's worth.. I am a believer in alife after death. where I will most definitely soar with eagles, dance with angels and rejoice at the banquet table with my family, my friends and my Triune Deity. I love to look at the pictures that come back from Space. what a universe!!! It's beyond anything we could ever imagine and some day in the not too distant future I will stand at the edge of dawn with complete knowledge of the mysteries of life But yes, now we must somehow get thru this life and it isn't easy... Feb. 7, 2002. and each day is never like the one before. And the only ones who understand completely are on this list . So do we have a date shall we meet in eternity and shall we P A R T Y... and we shall never run out of wine. because I know someone who can turn water into wine! :) Trudy P.S. I am also a firm believer in pity parties... especially with ice cream and chocolates I think it's an Irish thing... I have written to Jude and keep up with her news. Has anyone heard how Bernard Pelow is doing?? I sent an e-mail but no reply. ..
Re: [TMIC] just another gloomy day
You know what??? You can darn well vent all you want! We are here to hold you up when you need us as you would probably do the very same thing for us and know that we will also have those days when we are trying to keep all of our feelings and emotions under control. A lot of us are still trying to learn to walk. I've had many people look at me as I wobble and weave and smirk because I look so much like a 'drunk'. Some of the times I can handle it by laughing with my family and friends and other times I want to cry. So you hang in there and know that you have one heck of a lot of us that are here for you!! Jeanne ---Original Message--- From: sal r Date: 3/24/2008 6:48:49 PM To: [EMAIL PROTECTED]; tm 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] Fwd: Sweating
Hi, Ella! The banding sure isn't much fun, is it? I'm reading that a whole lot of us have the same thing along with the temperature problems. My legs feel like they're in buckets of ice water and when it gets too bad they start spasming which is so painful. I do find that the Lyrica really does help with that and the neuropathy. I don't know if you read earlier about how I had weaned myself off of it except for two low doses a day. I do find that when the pain gets too bad Ibuprofen or Tylenol does help. We were just talking about the splotches the other day! Another thing we have in common! What is it that your provider gave you? Is it something we can get over the counter? Sometimes the providers have samples they can give out to their patients. Take care, Ella! Good to chat with you! Jeanne ---Original Message--- From: [EMAIL PROTECTED] Date: 3/24/2008 12:52:32 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Fwd: Sweating My lesion is T6 -T10 and I am extremely sensitive at my banding area and from there to the toes my feelings are opposite (cold feels freezing and hot feels cool). That area is also hypersensitive but not as bad as bannding area. On my chest and left arm I get splotches about nickle size that look like bruises and my doctor gave me cream to put on them and theyclear right up. Ella in Ohio Create a Home Theater Like the Pros. Watch the video on AOL Home.
Re: [TMIC] Fwd: Sweating
Can someone please explain what the splotches are?
jrushton [EMAIL PROTECTED] wrote: v\:* { BEHAVIOR: url (#default#vml)
} v\:* { BEHAVIOR: url (#default#vml) }
FLAVOR00-NONE--- 0.00 ; Hi, Ella! The
banding sure isn't much fun, is it? I'm reading that a whole lot of us have
the same thing along with the temperature problems. My legs feel like they're
in buckets of ice water and when it gets too bad they start spasming which is
so painful. I do find that the Lyrica really does help with that and the
neuropathy. I don't know if you read earlier about how I had weaned myself off
of it except for two low doses a day. I do find that when the pain gets too
bad Ibuprofen or Tylenol does help.
We were just talking about the splotches the other day! Another thing we
have in common! What is it that your provider gave you? Is it something we
can get over the counter? Sometimes the providers have samples they can give
out to their patients.
Take care, Ella! Good to chat with you!
Jeanne
---Original Message---
From: [EMAIL PROTECTED]
Date: 3/24/2008 12:52:32 PM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: Re: [TMIC] Fwd: Sweating
My lesion is T6 -T10 and I am extremely sensitive at my banding area and from
there to the toes my feelings are opposite (cold feels freezing and hot feels
cool). That area is also hypersensitive but not as bad as bannding area. On my
chest and left arm I get splotches about nickle size that look like bruises and
my doctor gave me cream to put on them and theyclear right up.
Ella in Ohio
-
Create a Home Theater Like the Pros. Watch the video on AOL Home.
-
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Re: [TMIC] Monday visit with Jude
What a wonderful thing you have done for Jude by sharing all of this with us I read all of the way through and I feel so bad for her. I had to laugh when I read about her bracelet! She does have so much support from her TMIC friends and it's too sad about her in-laws. We choose our friends, not our family. Jeanne ---Original Message--- From: [EMAIL PROTECTED] Date: 3/24/2008 2:53:28 PM To: tmic-list-at-eskimo.com Subject: [TMIC] Monday visit with Jude I just came home from visiting Jude in the hospital: (Monday afternoon) Judy Hoops Room 4159 Genesys Health System One Genesys Parkway Grand Blanc, MI 48439 910-606-5000 - main switchboard Like the rest of us, Jude has her days of despair and her days of determination. Jude had signed do-not-resucitate papers in the past, but said she didn't want the purple DNR bracelet when they admitted her Saturday She was told she couldn't just go back and forth with this decision and the person insisted on putting the bracelet on her. Jude said as soon as she was able, she starting biting on the bracelet and chewed it off. She was pretty smug about it too! Jude greeted me with a smile when I walked in and we visited for over an hour. She had just finished a late breakfast and wasn't hooked up to tubes of any kind. When I left, her nurse was starting an IV antibiotic - I knew it was time leave - Jude's eyelids were drooping! Jude's news isn't good - she has been diagnosed with MRSA, the staph infection that is resistant to antibiotics. She was moved from the nursing home to the hospital Saturday morning after a culture that was taken Wed or Thurs came back positive for MRSA. The antibiotic, Vacomycin is hard on her veins so they are putting in a pic line today. Jude had a bone scan this morning to determine the depth of the infection that started as a pressure sore. There in tunneling and it might be in the bone. She got this info from the tech, but hadn't seen the doctor yet today The staff had given Jude a print-out of the MERK Manual definition of MRSA. You might be interested in reading what she and her husband were given to read about her diagnosis. It's harsh. The depth of her wound will be a detriment. Jude has given permission to share her diagnosis with the list as she feels we all need to know what the other is going thru so we can learn and maybe avoid some of the cruelties of TM. She wasn't familiar with MRSA and its life-threatening hold. I hope you will send cards and notes to Jude or send a post to me that I can print and take to her on my next visit. Pam has explained that Jude has no immediate family and her husband's family doesn't call or visit so she really does consider the TM family to be her REAL family. We were talking about many of you by name, but if I tried to recall I'd leave someone out and Jude wouldn't tolerate that! Patti - Michigan
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] JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
Patti and Pam, Thank you so much for keeping us up to date on our Jude. After reading what you have both written, it seems that there may still be some hope for Jude to make it through this. I know I'll keep her in my thoughts and prayers. It still amazes me how people who are there to care for those in need DO NOT DO THEIR JOBS!! Or, do not do them properly. You hear about it all the time on the news or in magazines. Boy, this really hits home for us though. We now know first hand why so many that go into the skilled nursing facilities do not ever make it back home again. Lack of proper care runs rampant. This is really a wake-up call for all of us. We have got to really keep the eyes open if any of us, or anyone that we care about is ever put into the situation of needing some care like this. Be well everyone, and hugs to all, Barbara A in Auburn, CA **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom000301)
Re: [TMIC] JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
Barbara has a pointI remember when i was in CCU, during the night hours when no family was allowedthat was the most scariest for me...I remember crying for hours cuz i needed my trache (sp?) suctioned cuz i was having a difficult time taking air in but the nurses would just stare and walk away...i would try to tell people but then the nurses would cover for each other and say its the medications hes hllucinating...no one is forcing these people to become nurses...where not in the hospital because we committed a crime we are in there because we need TLC...my two cents...All prayers go out to JUDE and TM family...GET WELL SOON!! take care SaL [EMAIL PROTECTED] wrote: Patti and Pam, Thank you so much for keeping us up to date on our Jude. After reading what you have both written, it seems that there may still be some hope for Jude to make it through this. I know I'll keep her in my thoughts and prayers. It still amazes me how people who are there to care for those in need DO NOT DO THEIR JOBS!! Or, do not do them properly. You hear about it all the time on the news or in magazines. Boy, this really hits home for us though. We now know first hand why so many that go into the skilled nursing facilities do not ever make it back home again. Lack of proper care runs rampant. This is really a wake-up call for all of us. We have got to really keep the eyes open if any of us, or anyone that we care about is ever put into the situation of needing some care like this. Be well everyone, and hugs to all, Barbara A in Auburn, CA - Create a Home Theater Like the Pros. Watch the video on AOL Home. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
