Re: [TMIC] relationships with TM
You are welcome as sunshine! j ---Original Message--- From: Catherine Date: 6/19/2009 12:00:45 PM To: jrushton Subject: Re: [TMIC] relationships with TM Thank you Jeanne. Since I have been reading the email regarding relationships and all that many of you have been through...my situation is not that bad at all. I thank everyone for sharing. Catherine . From: jrushton jrush...@columbiaenergyllc.com To: Catherine camoa...@yahoo.com Sent: Thursday, June 18, 2009 9:27:59 PM Subject: Re: [TMIC] relationships with TM You are in my prayers big time...both of you..Jeanne ---Original Message--- From: Catherine Date: 6/12/2009 6:59:49 PM To: ladyno...@aol.com Cc: Transverse Mylitis Group Subject: Re: [TMIC] Oh Naomi, My hearts hurts so bad for both of us. The physical rejection is more than anyone can bare!! I married my husband loving him with all my heart .. a second marriage for both of us. Since we were not children there was no sense in waiting till we got married. We were very happy in everyway .. we have 3 children between us, none together. Twenty years ago on our wedding day ... the marriage died. I will pray for you and all that are suffering this horrific loss. Catherine From: ladyno...@aol.com ladyno...@aol.com To: jan...@centurytel.net; tmic-list@eskimo.com Sent: Friday, June 12, 2009 4:18:07 PM Subject: Re: [TMIC] Janice, My marriage has really deteriorated since my TM. My husband and I have been together for 25 years, and our lives were just perfect, before TM. We had just built a new home, our children are adults and taking care of their families, I took an early retirement from my job, but was back working there as a contractor making twice as much money, my husband had just got a promotion to a management position, on his job. Our physical relationship was the best it had ever been. It was banging (if I may use that expression) Things were great! Then TM struck! Initially, my husband was by my side every second of the day. He was off work the first two months, because I was, initially, in intensive care. Because I was totally paralyzed, he felt he had to be there all the time. After being in rehab, nursing homes, and hospitals, it was a year and two weeks, before I returned home again. Because I did not have an aide, and did not know how to go about getting one (not to mention we could not afford one), he took off work again, to care for me. My mom came to live with us to help out. She's nearly 80 years old. She can prepare meals and call 911 if needed. I keep my phone on at all times, in case I need to call 911 for her Otherwise, he makes sure we both have our medicines, buys grocery for the house, pays the bills, and keep the house running. As for us, there's not much there. We're not intimate at all! He has no desire for me in that capacity. He assures me he loves me and he'll take care of me until the day he dies, but I guess there will be no affection shown until then. He may kiss me on the forehead, but that's it. He really does not like performing the duties of an aide and he reminds me of that every time he has to put me to bed. We did get an aide to come in the mornings and get me up, but we cannot afford one to come in the evenings also. I am looking into going into an assisted living or group home. Our home does not have an assessable bathroom for me. All of our bathrooms are upstairs and there is no room on the first floor, to put a bathroom. As much as I love this house, it just doesn't make any sense for me to stay here. My husband will not be going to the assisted living facility with me. We now live at least an hour away from our friends and family. When I move into a facility, it will be closer to friends and family. Hopefully, that will enabled me to get out more often. Right now I am at home daily just me and my mom. I have a wheelchair van, but my mom is unable to drive it. I don't even feel comfortable going down the ramp with her, so I'm stuck in the house all day, every day. On the weekend, my husband wants to play golf If I say I want to go somewhere or do something else, he will go or do it, but I will know he doesn't want to. He feels he doesn't get to do what he wants to do. Which is not true, because he plays golf all the time. It just makes for a bad situation. I think it's gotten to the point where he resents me. He would never say that. His actions sure shows that. Which is too bad, because I love him with all my heart. He has been there for me when the rest of my family has failed me. I pray for us constantly. I ask you all to do the same. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Shop Dell's full line of Laptops now starting at $349! tile12.jpgstat01.gif
Re: [TMIC] Relationships
Oh, Kevin, I wish things were better for you. I don't know how old you are but there are many, many people out there that would be so good with and for you. Sometimes you just have to go to the right places to meet them. And you ALWAYS have us but many of us have no 'faces' so you can connect with us better! But we're always here for you through the good and the bad. Jeanne ---Original Message--- From: Kevin Wolfthal Date: 6/12/2009 8:06:34 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? tile12.jpg
Re: [TMIC] relationships with TM
You are in my prayers big time...both of you..Jeanne ---Original Message--- From: Catherine Date: 6/12/2009 6:59:49 PM To: ladyno...@aol.com Cc: Transverse Mylitis Group Subject: Re: [TMIC] Oh Naomi, My hearts hurts so bad for both of us. The physical rejection is more than anyone can bare!! I married my husband loving him with all my heart .. a second marriage for both of us. Since we were not children there was no sense in waiting till we got married. We were very happy in everyway .. we have 3 children between us, none together. Twenty years ago on our wedding day ... the marriage died. I will pray for you and all that are suffering this horrific loss. Catherine From: ladyno...@aol.com ladyno...@aol.com To: jan...@centurytel.net; tmic-list@eskimo.com Sent: Friday, June 12, 2009 4:18:07 PM Subject: Re: [TMIC] Janice, My marriage has really deteriorated since my TM. My husband and I have been together for 25 years, and our lives were just perfect, before TM. We had just built a new home, our children are adults and taking care of their families, I took an early retirement from my job, but was back working there as a contractor making twice as much money, my husband had just got a promotion to a management position, on his job. Our physical relationship was the best it had ever been. It was banging (if I may use that expression) Things were great! Then TM struck! Initially, my husband was by my side every second of the day. He was off work the first two months, because I was, initially, in intensive care. Because I was totally paralyzed, he felt he had to be there all the time. After being in rehab, nursing homes, and hospitals, it was a year and two weeks, before I returned home again. Because I did not have an aide, and did not know how to go about getting one (not to mention we could not afford one), he took off work again, to care for me. My mom came to live with us to help out. She's nearly 80 years old. She can prepare meals and call 911 if needed. I keep my phone on at all times, in case I need to call 911 for her Otherwise, he makes sure we both have our medicines, buys grocery for the house, pays the bills, and keep the house running. As for us, there's not much there. We're not intimate at all! He has no desire for me in that capacity. He assures me he loves me and he'll take care of me until the day he dies, but I guess there will be no affection shown until then. He may kiss me on the forehead, but that's it. He really does not like performing the duties of an aide and he reminds me of that every time he has to put me to bed. We did get an aide to come in the mornings and get me up, but we cannot afford one to come in the evenings also. I am looking into going into an assisted living or group home. Our home does not have an assessable bathroom for me. All of our bathrooms are upstairs and there is no room on the first floor, to put a bathroom. As much as I love this house, it just doesn't make any sense for me to stay here. My husband will not be going to the assisted living facility with me. We now live at least an hour away from our friends and family. When I move into a facility, it will be closer to friends and family. Hopefully, that will enabled me to get out more often. Right now I am at home daily just me and my mom. I have a wheelchair van, but my mom is unable to drive it. I don't even feel comfortable going down the ramp with her, so I'm stuck in the house all day, every day. On the weekend, my husband wants to play golf If I say I want to go somewhere or do something else, he will go or do it, but I will know he doesn't want to. He feels he doesn't get to do what he wants to do. Which is not true, because he plays golf all the time. It just makes for a bad situation. I think it's gotten to the point where he resents me. He would never say that. His actions sure shows that. Which is too bad, because I love him with all my heart. He has been there for me when the rest of my family has failed me. I pray for us constantly. I ask you all to do the same. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Shop Dell's full line of Laptops now starting at $349! tile12.jpg
Re: [TMIC] Relationships
I agree with Jeanne. We could probably drive you nuts with some of the tangents we talk about, but you know you always have our heart. Not everyone out there is like your family and friends. Don't be afraid to get out and find people. You are really a hero - you saved your mother's life. I bet she is so proud. Janice - Original Message - From: jrushton To: Kevin Wolfthal ; tmic Sent: Thursday, June 18, 2009 8:23 PM Subject: Re: [TMIC] Relationships Oh, Kevin, I wish things were better for you. I don't know how old you are but there are many, many people out there that would be so good with and for you. Sometimes you just have to go to the right places to meet them. And you ALWAYS have us but many of us have no 'faces' so you can connect with us better! But we're always here for you through the good and the bad. Jeanne ---Original Message--- From: Kevin Wolfthal Date: 6/12/2009 8:06:34 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? tile12.jpg
Re: [TMIC] Relationships
I don't believe in Karma.We are living on earth, not heaven. Therefore, life will not always be perfect. If you follow that line of thinking, Karma, then what did the little children do to deserve abuse?, etc. Karma doesn't make sense to me. Things will be perfect when we reach heaven and, I believe, those who suffer on earth, will reach heaven. Just remember, God has to choose our time, not us. Janice - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: kimr1...@bellsouth.net; tmic-list@eskimo.com Sent: Monday, June 15, 2009 1:44 AM Subject: Re: [TMIC] Relationships I believe in Karma, but it makes me ask myself..did I do something bad and my Karma caused me to get TM? I've tried to live my life with the Golden Rule, but I've made lots of mistakes. Anyway..I figured out what John Lennon's song 'Instant Karma' meant, awhile back. Kevin kimr1...@bellsouth.net wrote: Karma, Karma, Karma gets um back! -- Original message from Janice jan...@centurytel.net: -- You are right. Those of us who have not had to fight society and family are extremely fortunate. Couldn't help but notice that the people causing you two so much grief ended up with worse problems. Wonder where that came from?! Janice - Original Message - From: Kevin Wolfthal To: ; Sent: Saturday, June 13, 2009 6:05 AM Subject: Re: [TMIC] Relationships When TM hit me, I kept working until I no longer could. In fact I pushed myself even harder than before..probably a mistake. My boss said once, what's with all the sick, never asking what was my DX. He subsequently found out what sick was when he lost his only two sons, one to cancer and the other to a heart attack. Instead of making him more understanding, he treated me even worse. He was eventually pushed out, but his replacement wasn't much better. After I left, they found out just how much work i was doing, even with TM, and it took them a year to replace me. They also cheated me out of my private disability benefit. Now there are many layoffs there because of the economy. What goes around comes around. But I miss working and loved my job. I'm glad for you that you are happy and still able to work. Kevin rj_ran...@yahoo.com wrote: Been there. I was diagnosed with ms. Year later tm. I was engaged when tm hit. The future mom n law became the embodiment of hell. I still hate her. So didn't marry. Work was a problem. After I lost my bladder I had to self cath only problem I teach and the bosses made us call to leave the room. I had to explain my situation and he cut me off in anger and said he didn't wanna hear it. It was hard enough to build up guts to tell him and for him to walk out in that manner was really upsetting. But a year later his wife had a heart attack and his second in charge, who also treated me badly, had a stroke and is in worse shape than me. I transfered and am much happier. --Original Message-- From: Kevin Wolfthal To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Sent: Jun 12, 2009 8:06 PM Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together
Re: [TMIC] Relationships
Kevin, I also believe in Karma and also tried to live my life according to the golden rule. Which makes me wonder, if I did something so bad to someone, that I would end up in this situation. If I made any mistakes that warrant this, I would remember. It's hard to say that people reap what they sow when I'm in the condition I'm in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis **An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! (http://pr.atwola.com/promoclk/100126575x1221322979x1201367215/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072hmpgID=62bcd=Jun eExcfooterNO62)
Re: [TMIC] Relationships
I believe karma is strictly an interpersonal thing and that there are many factors in the world which are driven by the nature of our universe. Good and bad things happen with out regard to who it affects. Karma had nothing to do with the plague, the 2004 tsunami, the 1918 flu pandemic, there is a chaos to our world and we are subject to it. Especially when it comes to illnesses! I believe we all are survivors of a random event of viral chaos. In fact everyone (and for that matter every living thing) on earth who lives long enough will experience some form of debilitation. Karma, the golden rule, turning the other cheek--- they're just philosophies we can chose to aid us in our learning to cope and they are great ideas that can enrich our lives significantly. I hate the phrase things happen for a reason Some things do but I think many more things do not and I believe Not one of us brought this upon ourselves because we were bad! Our creator loves us just as much as those who are whole in body. remember: Blessed are the poor in spirit for theirs is the kingdom of heaven The key is that we have an opportunity to give reason to what has happened to us. Or, we can be crushed by our circumstances. This choice is our free will in action. Looking for blame in ourselves or others allows us to pass the buck and not move forward. I had a period of suicidal thinking right after High school and when I told a friend, rather than expressing concern or sympathy she launched in and verbally whooped my ASS for having so many blessings and thinking my life was something I could just throw away. Angels come in many forms and I thank God for that memory. Mindy the Artist Down to the half dose level in my Cymbalta weaning and doing great! On Jun 15, 2009, at 9:26 AM, ladyno...@aol.com wrote: Kevin, I also believe in Karma and also tried to live my life according to the golden rule. Which makes me wonder, if I did something so bad to someone, that I would end up in this situation. If I made any mistakes that warrant this, I would remember. It's hard to say that people reap what they sow when I'm in the condition I'm in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!
Re: [TMIC] Relationships
Dan, Bless you for your kind words. May you find the strength to get through this difficult time. You and your family remain in my thoughts and prayers. Kevin montzma...@aol.com wrote: oh kevin. i can not think of the words to speak to you. that's terrible. may god bless you to find the strength. your in my thoughts and prayers pams hubby dan Shop Dell's full line of Laptops now starting at $349! http://pr.atwola.com/promoclk/100126575x1221881320x1201406166/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B215218036%3B37264217%3Bz
Re: [TMIC] Relationships
When TM hit me, I kept working until I no longer could. In fact I pushed myself even harder than before..probably a mistake. My boss said once, what's with all the sick, never asking what was my DX. He subsequently found out what sick was when he lost his only two sons, one to cancer and the other to a heart attack. Instead of making him more understanding, he treated me even worse. He was eventually pushed out, but his replacement wasn't much better. After I left, they found out just how much work i was doing, even with TM, and it took them a year to replace me. They also cheated me out of my private disability benefit. Now there are many layoffs there because of the economy. What goes around comes around. But I miss working and loved my job. I'm glad for you that you are happy and still able to work. Kevin rj_ran...@yahoo.com wrote: Been there. I was diagnosed with ms. Year later tm. I was engaged when tm hit. The future mom n law became the embodiment of hell. I still hate her. So didn't marry. Work was a problem. After I lost my bladder I had to self cath only problem I teach and the bosses made us call to leave the room. I had to explain my situation and he cut me off in anger and said he didn't wanna hear it. It was hard enough to build up guts to tell him and for him to walk out in that manner was really upsetting. But a year later his wife had a heart attack and his second in charge, who also treated me badly, had a stroke and is in worse shape than me. I transfered and am much happier. --Original Message-- From: Kevin Wolfthal To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Sent: Jun 12, 2009 8:06 PM Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? Sent from my Verizon Wireless BlackBerry
Re: [TMIC] Relationships
Akua, I am sorry that you are going through these difficulties. I had to get my state involved to get a wheelchair curb cut put in front of my condo complex. The building resents me because it cost money, even though they were breaking the law. Kevin Akua wrote: My relationships, most friends disappeared. For me, too and the few that stepped up flew in from far far away and couldn't stay. One saved my life. But so so so sad that she could fly across country to help and my family, in the same state, didn't. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin I agree. I think I will knock the teeth out of mouth of the next person who tells me about advocating for myself. No one else has done it. No one is here to do it. I blogged about my latest hellish experience. I was invited to perform this evening and went through so much to prepare: change eating schedule so my body will be ready, have the aide who i only have once a week to shop, instead find makeup, tweezers, clothes ( meaning she couldn't do other things i needed), find someone to bring the drummer to me because there was no way for me to get to him, mediate annoyances, rehearse, create a new work, exercise, find transport--- which was going to cost $75 come from the other city , get me, bring me home. And on Tuesday I was told there was no ramp on the building--- the Community Arts Center-- so I couldn't perform. The physical l therapist told me she is closing my case out as there is nothing she can do for me. What she proposed was that i spend a couple hundred dollars to get my (unused) motorized wheelchair adjusted so that i might possibly be able to transfer to it without help. I said i couldn't gamble away money... if had some assurance or preview or trial then i would do it. What about standing, leg manipulation, etc? No answer. Case closed. Akua (furious)
RE: [TMIC] Relationships
TM HIT ME ON OUR 45TH WEDDING ANNIVERSARY. THAT IS A DATE NEIGHER OF US WILL FORGET. MY HUSBAND WHO NEVER DID ANY COOKING, LAUNDRY, ETC., HAD TO TAKE OVER ALL THE HOUSE WORK AND THE OUTSIDE WORK. WHEN I FIRST CAME HOME FROM THE HOPITAL AFTER 6 WEEKS, I WAS FORTUNATE THAT MY SISTER, NIECES, AND DAUGHTERS LOADED US UP ON MEALS WE COULD PUT IN THE FREEZER WHICH TOOK CARE OF US FOR ABOUT A MONTH. BILL, MY HUSBAND, HAD TO LEARN TO DO THE LAUNDRY, SOME COOKING AND EVERYTHING ELSE. AFTER A MONTH, A WAS ABLE TO HELP WITH THE COOKING IF I SAT IN MY WALKER WITH THE SEAT. I AM ALSO LUCKY THAT NOW I AM ABLE TO WALK AROUND THE HOUSE WITH NO WALKER OR CANE, SO I AM NOW DOING ALL THE COOKING, AND EVEN THE DISHES AFTERWARD. BILL STILL STARTS THE LAUNDRY, AND I CAN STEP IN AND FINISH AND DO ALL THE FOLDING. I AM NOT ABLE TO DO MUCH IN THE WAY OF CLEANING SO HE DOES THAT TOO. I ALWAYS THOUGHT I WOULD BE THE ONE TO TAKE CARE OF HIM, BUT THE LORD WORKS IN MYSTERIOUS WAYS. AFTER BEING MARRIED SO LONG, OUR RELATIONSHIP HASN'T CHANGED. I KNOW HE IS THERE FOR ME AND I AM THERE FOR HIM, SO WE ARE TWO VERY LUCKY PEOPLE. MY HEART GOES OUT TO ALL WHOSE RELATIONSHIP HAS CHANGED AND NOT FOR THE BETTER. PATTTI - WISCONSIN - TIAD From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Friday, June 12, 2009 3:01 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Relationships TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
RE: [TMIC] Relationships
Frank does so much..he makes certain I don't overdo, he's kinda like my conscience, cause I think I can do more than I'm really capable of.Patti, you mention your walker with a seatI use mine for carrying stuff, i.e. laundry, dishes etc, Frank says it's been worth much more than we paid for it!!! janh !TIAD !!! --- On Sat, 6/13/09, Patricia Cooley patticoo...@wi.rr.com wrote: TM HIT ME ON OUR 45TH WEDDING ANNIVERSARY. THAT IS A DATE NEIGHER OF US WILL FORGET. MY HUSBAND WHO NEVER DID ANY COOKING, LAUNDRY, ETC., HAD TO TAKE OVER ALL THE HOUSE WORK AND THE OUTSIDE WORK. WHEN I FIRST CAME HOME FROM THE HOPITAL AFTER 6 WEEKS, I WAS FORTUNATE THAT MY SISTER, NIECES, AND DAUGHTERS LOADED US UP ON MEALS WE COULD PUT IN THE FREEZER WHICH TOOK CARE OF US FOR ABOUT A MONTH. BILL, MY HUSBAND, HAD TO LEARN TO DO THE LAUNDRY, SOME COOKING AND EVERYTHING ELSE. AFTER A MONTH, A WAS ABLE TO HELP WITH THE COOKING IF I SAT IN MY WALKER WITH THE SEAT. I AM ALSO LUCKY THAT NOW I AM ABLE TO WALK AROUND THE HOUSE WITH NO WALKER OR CANE, SO I AM NOW DOING ALL THE COOKING, AND EVEN THE DISHES AFTERWARD. BILL STILL STARTS THE LAUNDRY, AND I CAN STEP IN AND FINISH AND DO ALL THE FOLDING. I AM NOT ABLE TO DO MUCH IN THE WAY OF CLEANING SO HE DOES THAT TOO. I ALWAYS THOUGHT I WOULD BE THE ONE TO TAKE CARE OF HIM, BUT THE LORD WORKS IN MYSTERIOUS WAYS. AFTER BEING MARRIED SO LONG, OUR RELATIONSHIP HASN’T CHANGED. I KNOW HE IS THERE FOR ME AND I AM THERE FOR HIM, SO WE ARE TWO VERY LUCKY PEOPLE. MY HEART GOES OUT TO ALL WHOSE RELATIONSHIP HAS CHANGED AND NOT FOR THE BETTER. PATTTI – WISCONSIN - TIAD From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Friday, June 12, 2009 3:01 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Relationships TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
RE: [TMIC] Relationships
JAN I USE MINE TO CARRY ALSO. BUT, I ALSO HAVE A TRAY THAT I CAN PUT ON MY REGULAR WALKER TO CARRY STUFF. IN THE BEGINNING, I HAD TO SIT ON THE SEAT IF I WANTED TO DO ANY COOKING. NOW SINCE I AM ABLE TO WALK WITHOUT A WALKER OR CANE (I SHOULD SAY WADDLE LIKE A DUCK) I DON’T USE THE SEAT ANY MORE. I AM ALSO ABLE TO STAND AT THE STOVE AND SINK. I FEEL THE MORE I WALK AND STAND THE MORE EXERCISE I GET AND HOPEFULLY THE STRONGER I WILL BECOME. EVEN WITH ALL THE HELP WALKERS GIVE , I THANK THE LORD EVERYDAY FOR MY HUSBAND. I DON’T WANT TO THINK I WOULD DO WITHOUT HIM AND MY DAUGHTERS. TAKE CARE AND TIAD PATTI - WISCONSIN From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Saturday, June 13, 2009 12:24 PM To: 'transverse myelitis'; Patricia Cooley Subject: RE: [TMIC] Relationships Frank does so much..he makes certain I don't overdo, he's kinda like my conscience, cause I think I can do more than I'm really capable of.Patti, you mention your walker with a seatI use mine for carrying stuff, i.e. laundry, dishes etc, Frank says it's been worth much more than we paid for it!!! janh !TIAD !!! --- On Sat, 6/13/09, Patricia Cooley patticoo...@wi.rr.com wrote: TM HIT ME ON OUR 45TH WEDDING ANNIVERSARY. THAT IS A DATE NEIGHER OF US WILL FORGET. MY HUSBAND WHO NEVER DID ANY COOKING, LAUNDRY, ETC., HAD TO TAKE OVER ALL THE HOUSE WORK AND THE OUTSIDE WORK. WHEN I FIRST CAME HOME FROM THE HOPITAL AFTER 6 WEEKS, I WAS FORTUNATE THAT MY SISTER, NIECES, AND DAUGHTERS LOADED US UP ON MEALS WE COULD PUT IN THE FREEZER WHICH TOOK CARE OF US FOR ABOUT A MONTH. BILL, MY HUSBAND, HAD TO LEARN TO DO THE LAUNDRY, SOME COOKING AND EVERYTHING ELSE. AFTER A MONTH, A WAS ABLE TO HELP WITH THE COOKING IF I SAT IN MY WALKER WITH THE SEAT. I AM ALSO LUCKY THAT NOW I AM ABLE TO WALK AROUND THE HOUSE WITH NO WALKER OR CANE, SO I AM NOW DOING ALL THE COOKING, AND EVEN THE DISHES AFTERWARD. BILL STILL STARTS THE LAUNDRY, AND I CAN STEP IN AND FINISH AND DO ALL THE FOLDING. I AM NOT ABLE TO DO MUCH IN THE WAY OF CLEANING SO HE DOES THAT TOO. I ALWAYS THOUGHT I WOULD BE THE ONE TO TAKE CARE OF HIM, BUT THE LORD WORKS IN MYSTERIOUS WAYS. AFTER BEING MARRIED SO LONG, OUR RELATIONSHIP HASN’T CHANGED. I KNOW HE IS THERE FOR ME AND I AM THERE FOR HIM, SO WE ARE TWO VERY LUCKY PEOPLE. MY HEART GOES OUT TO ALL WHOSE RELATIONSHIP HAS CHANGED AND NOT FOR THE BETTER. PATTTI – WISCONSIN - TIAD From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Friday, June 12, 2009 3:01 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Relationships TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC] Relationships
Akua, The laws regarding handicapped parking don't go far enough imo, and there should be state inspections of buidings like mine, (a high-rise condo complex), to make sure they are meeting code. There is exactly ONE handicapped parking space on my street for approx. 200 condominiums. I have learned that there should be at least THREE spaces, still not that many. I have been forced to park a block away, and as a result have not been able to access my car for a very long time. I used to be able to walk to my car with a cane, now it's too far, and I can only get to it with a power wheelchair, which I can't get in my car. It sounds like you live in a private home? It seems the ADA laws do little for private residences than public buidings, but there shouldn't be people blocking your access. That's just wrong. Kevin Akua wrote: Ah Kevin: curb cuts After a year and half of lettert writing and countless calls, the city manager and a cop are meeting with me to review my request for a handicapped parking sign in front of my house. I have a curb cut right in front of my house, but some idiots park there, blocking it. Despite the fact that it is in front of my house and my ramp. I was initially refused the sign because I was told there are LOTS of places to park in my single-family home neighborhood. I said that's my point! There are lots of other places for able bodied people to PARK( like their own homes and driveways) and I need access to my house. I was told that handicapped parking signs are not for homesarhhh but they're coming to meet with me to understand what it is I am saying. Akua Akua, I am sorry that you are going through these difficulties. I had to get my state involved to get a wheelchair curb cut put in front of my condo complex. The building resents me because it cost money, even though they were breaking the law. Kevin
Re: [TMIC] Relationships
Ok not the same issue but here one of my gripes I am in a wheel chair on a business trip in LA, the hotel puts me on the 16th floor in a ‘wheel char accessible room” ok now tell me how am I to get to the ground floor if something were to happen? Can’t use the elevator, hum am I supposed to fly? Went to complain to manager and he looked at me like I just grew a third eye!! Then had the nerve to tell me “Oh if something were to happen, we would send someone to come get you” I just laughed at him… and demanded to be put on the ground floor, room was difficult to get around in but felt safer. To date hotel has yet to make any kind of change in “wheel chair accessible rooms” I wrote a letter to the corporate office but never heard back from them. Kim -- Original message from Kevin Wolfthal wolft...@optonline.net: -- Akua, Yes, there are other people with disabilities in my building. They are afraid to fight for their rights, and I don't have the energy to organize them. I have gotten small things done (curb cut) by emailing a state Senator who contacted the Fair Housing Association for my state. As the population ages, I think the ADA laws need to be re-examined or we are going to be stepped on even more. Have you contacted local TV stations? Sometimes they have advocates that help people. Best wishes, Kevin Akua wrote: Kevin, I remember your tales of struggle with your condo. I was in exile at the time, waiting for my home to be rehabbed. Now I'm home-- private house-- and everytime I want to invoke the ADA, I'm told it doesn't apply--- from the ramps that don't meet ADA specs to being able to be dropped off in front of my house where there is one concrete break in the grassy median. My house is on a corner.., neither my neighbors across the street nor next door to me park in front of my house. It's the illogic that gets me... there is plenty of room. okay. so why can't I reserve the space in front of my house, which i starved and suffered to retain and continue to pay taxes on for the handicapped in this case me? There are signs warning of Children at play and Deaf children, why is my request resisted? Are there other handicapped folks in your condo? Can you get them to ask? I wrote well crafted letter after letter to the newspapers about lack of paratransit. My drummer wrote a rant about not being able to get a bus to see me ( he can walk and could, but it would be extremely arduous) and they published it! Sometime, I guess they need to hear more than one voice, no matter how clear and lucid that one voice is. Thanks for sharing. Akua Akua, The laws regarding handicapped parking don't go far enough imo, and there should be state inspections of buidings like mine, (a high-rise condo complex), to make sure they are meeting code. There is exactly ONE handicapped parking space on my street for approx. 200 condominiums. I have learned that there should be at least THREE spaces, still not that many. I have been forced to park a block away, and as a result have not been able to access my car for a very long time. I used to be able to walk to my car with a cane, now it's too far, and I can only get to it with a power wheelchair, which I can't get in my car. It sounds like you live in a private home? It seems the ADA laws do little for private residences than public buidings, but there shouldn't be people blocking your access. That's just wrong. Kevin Akua wrote: Ah Kevin: curb cuts After a year and half of lettert writing and countless calls, the city manager and a cop are meeting with me to review my request for a handicapped parking sign in front of my house. I have a curb cut right in front of my house, but some idiots park there, blocking it. Despite the fact that it is in front of my house and my ramp. I was initially refused the sign because I was told there are LOTS of places to park in my single-family home neighborhood. I said that's my point! There are lots of other places for able bodied people to PARK( like their own homes and driveways) and I need access to my house. I was told that handicapped parking signs are not for homesarhhh but they're coming to meet with me to understand what it is I am saying. Akua Akua, I am sorry that you are going through these difficulties. I had to get my state involved to get a wheelchair curb cut put in front of my condo complex. The building resents me because it cost money, even though they were breaking the law. Kevin
Re: [TMIC] Relationships
Kim, what would happen, if anything, if we all bombarded the senator in your state complaining about that hotel and the probable others that treat handicapped people the same way? That is an awful position to put anyone in - where they do not feel safe. Janice - Original Message - From: kimr1...@bellsouth.net To: Kevin Wolfthal ; Akua ; tmic-list@eskimo.com Sent: Saturday, June 13, 2009 9:08 PM Subject: Re: [TMIC] Relationships Ok not the same issue but here one of my gripes I am in a wheel chair on a business trip in LA, the hotel puts me on the 16th floor in a ‘wheel char accessible room” ok now tell me how am I to get to the ground floor if something were to happen? Can’t use the elevator, hum am I supposed to fly? Went to complain to manager and he looked at me like I just grew a third eye!! Then had the nerve to tell me “Oh if something were to happen, we would send someone to come get you” I just laughed at him… and demanded to be put on the ground floor, room was difficult to get around in but felt safer. To date hotel has yet to make any kind of change in “wheel chair accessible rooms” I wrote a letter to the corporate office but never heard back from them. Kim -- Original message from Kevin Wolfthal wolft...@optonline.net: -- Akua, Yes, there are other people with disabilities in my building. They are afraid to fight for their rights, and I don't have the energy to organize them. I have gotten small things done (curb cut) by emailing a state Senator who contacted the Fair Housing Association for my state. As the population ages, I think the ADA laws need to be re-examined or we are going to be stepped on even more. Have you contacted local TV stations? Sometimes they have advocates that help people. Best wishes, Kevin Akua wrote: Kevin, I remember your tales of struggle with your condo. I was in exile at the time, waiting for my home to be rehabbed. Now I'm home-- private house-- and everytime I want to invoke the ADA, I'm told it doesn't apply--- from the ramps that don't meet ADA specs to being able to be dropped off in front of my house where there is one concrete break in the grassy median. My house is on a corner.., neither my neighbors across the street nor next door to me park in front of my house. It's the illogic that gets me... there is plenty of room. okay. so why can't I reserve the space in front of my house, which i starved and suffered to retain and continue to pay taxes on for the handicapped in this case me? There are signs warning of Children at play and Deaf children, why is my request resisted? Are there other handicapped folks in your condo? Can you get them to ask? I wrote well crafted letter after letter to the newspapers about lack of paratransit. My drummer wrote a rant about not being able to get a bus to see me ( he can walk and could, but it would be extremely arduous) and they published it! Sometime, I guess they need to hear more than one voice, no matter how clear and lucid that one voice is. Thanks for sharing. Akua Akua, The laws regarding handicapped parking don't go far enough imo, and there should be state inspections of buidings like mine, (a high-rise condo complex), to make sure they are meeting code. There is exactly ONE handicapped parking space on my street for approx. 200 condominiums. I have learned that there should be at least THREE spaces, still not that many. I have been forced to park a block away, and as a result have not been able to access my car for a very long time. I used to be able to walk to my car with a cane, now it's too far, and I can only get to it with a power wheelchair, which I can't get in my car. It sounds like you live in a private home? It seems the ADA laws do little for private residences than public buidings, but there shouldn't be people blocking your access. That's just wrong. Kevin Akua wrote: Ah Kevin: curb cuts After a year and half of lettert writing and countless calls, the city manager and a cop are meeting with me to review my request for a handicapped parking sign in front of my house. I have a curb cut right in front of my house, but some idiots park there, blocking it. Despite the fact that it is in front of my house and my ramp. I was initially refused the sign because I
Re: [TMIC] Relationships
To date hotel has yet to make any kind of change in wheel chair accessible rooms I wrote a letter to the corporate office but never heard back from them. This sounds like a good one for the Disablity Coalition or Reeves Foundation to take on... Ok not the same issue but here one of my gripes I am in a wheel chair on a business trip in LA, the hotel puts me on the 16th floor in a 'wheel char accessible room ok now tell me how am I to get to the ground floor if something were to happen? Can't use the elevator, hum am I supposed to fly? Went to complain to manager and he looked at me like I just grew a third eye!! Then had the nerve to tell me Oh if something were to happen, we would send someone to come get you I just laughed at him and demanded to be put on the ground floor, room was difficult to get around in but felt safer. To date hotel has yet to make any kind of change in wheel chair accessible rooms I wrote a letter to the corporate office but never heard back from them. Kim --
Re: [TMIC] Relationships
My relationship with my husband is a cross between you two, Jan and Patti. We celebrated our 39th wedding anniversary while I was still in the hospital and now it is 41 years. He is truly my hero. Life-changing illnesses really seem to be able to make or break a marriage/relationship and TM is no exception. Some of us have been so fortunate and others have really suffered through a bad break-up while dealing with TM. We all are at such different levels of TM, yet we all are able to communicate, comiserate, and identify with each other.No matter what our situation is, I think we all fill a void for each other that TM leaves in that we are the only ones we can talk to that understand the disease and how it leaves you to deal with it's damage. Janice - Original Message - From: Patricia Cooley To: 'Jan Hargrove' ; 'transverse myelitis' Sent: Saturday, June 13, 2009 2:04 PM Subject: RE: [TMIC] Relationships JAN I USE MINE TO CARRY ALSO. BUT, I ALSO HAVE A TRAY THAT I CAN PUT ON MY REGULAR WALKER TO CARRY STUFF. IN THE BEGINNING, I HAD TO SIT ON THE SEAT IF I WANTED TO DO ANY COOKING. NOW SINCE I AM ABLE TO WALK WITHOUT A WALKER OR CANE (I SHOULD SAY WADDLE LIKE A DUCK) I DON’T USE THE SEAT ANY MORE. I AM ALSO ABLE TO STAND AT THE STOVE AND SINK. I FEEL THE MORE I WALK AND STAND THE MORE EXERCISE I GET AND HOPEFULLY THE STRONGER I WILL BECOME. EVEN WITH ALL THE HELP WALKERS GIVE , I THANK THE LORD EVERYDAY FOR MY HUSBAND. I DON’T WANT TO THINK I WOULD DO WITHOUT HIM AND MY DAUGHTERS. TAKE CARE AND TIAD PATTI - WISCONSIN From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Saturday, June 13, 2009 12:24 PM To: 'transverse myelitis'; Patricia Cooley Subject: RE: [TMIC] Relationships Frank does so much..he makes certain I don't overdo, he's kinda like my conscience, cause I think I can do more than I'm really capable of.Patti, you mention your walker with a seatI use mine for carrying stuff, i.e. laundry, dishes etc, Frank says it's been worth much more than we paid for it!!! janh !TIAD !!! --- On Sat, 6/13/09, Patricia Cooley patticoo...@wi.rr.com wrote: TM HIT ME ON OUR 45TH WEDDING ANNIVERSARY. THAT IS A DATE NEIGHER OF US WILL FORGET. MY HUSBAND WHO NEVER DID ANY COOKING, LAUNDRY, ETC., HAD TO TAKE OVER ALL THE HOUSE WORK AND THE OUTSIDE WORK. WHEN I FIRST CAME HOME FROM THE HOPITAL AFTER 6 WEEKS, I WAS FORTUNATE THAT MY SISTER, NIECES, AND DAUGHTERS LOADED US UP ON MEALS WE COULD PUT IN THE FREEZER WHICH TOOK CARE OF US FOR ABOUT A MONTH. BILL, MY HUSBAND, HAD TO LEARN TO DO THE LAUNDRY, SOME COOKING AND EVERYTHING ELSE. AFTER A MONTH, A WAS ABLE TO HELP WITH THE COOKING IF I SAT IN MY WALKER WITH THE SEAT. I AM ALSO LUCKY THAT NOW I AM ABLE TO WALK AROUND THE HOUSE WITH NO WALKER OR CANE, SO I AM NOW DOING ALL THE COOKING, AND EVEN THE DISHES AFTERWARD. BILL STILL STARTS THE LAUNDRY, AND I CAN STEP IN AND FINISH AND DO ALL THE FOLDING. I AM NOT ABLE TO DO MUCH IN THE WAY OF CLEANING SO HE DOES THAT TOO. I ALWAYS THOUGHT I WOULD BE THE ONE TO TAKE CARE OF HIM, BUT THE LORD WORKS IN MYSTERIOUS WAYS. AFTER BEING MARRIED SO LONG, OUR RELATIONSHIP HASN’T CHANGED. I KNOW HE IS THERE FOR ME AND I AM THERE FOR HIM, SO WE ARE TWO VERY LUCKY PEOPLE. MY HEART GOES OUT TO ALL WHOSE RELATIONSHIP HAS CHANGED AND NOT FOR THE BETTER. PATTTI – WISCONSIN - TIAD From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Friday, June 12, 2009 3:01 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Relationships TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again
Re: [TMIC] Relationships
Todd, Sounds like you are in a strong relationship. It will help to only make you better to withstand TM's damages. Janice - Original Message - From: Patricia Cooley To: 'Jan Hargrove' ; 'transverse myelitis' Sent: Saturday, June 13, 2009 2:04 PM Subject: RE: [TMIC] Relationships JAN I USE MINE TO CARRY ALSO. BUT, I ALSO HAVE A TRAY THAT I CAN PUT ON MY REGULAR WALKER TO CARRY STUFF. IN THE BEGINNING, I HAD TO SIT ON THE SEAT IF I WANTED TO DO ANY COOKING. NOW SINCE I AM ABLE TO WALK WITHOUT A WALKER OR CANE (I SHOULD SAY WADDLE LIKE A DUCK) I DON’T USE THE SEAT ANY MORE. I AM ALSO ABLE TO STAND AT THE STOVE AND SINK. I FEEL THE MORE I WALK AND STAND THE MORE EXERCISE I GET AND HOPEFULLY THE STRONGER I WILL BECOME. EVEN WITH ALL THE HELP WALKERS GIVE , I THANK THE LORD EVERYDAY FOR MY HUSBAND. I DON’T WANT TO THINK I WOULD DO WITHOUT HIM AND MY DAUGHTERS. TAKE CARE AND TIAD PATTI - WISCONSIN From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: Saturday, June 13, 2009 12:24 PM To: 'transverse myelitis'; Patricia Cooley Subject: RE: [TMIC] Relationships Frank does so much..he makes certain I don't overdo, he's kinda like my conscience, cause I think I can do more than I'm really capable of.Patti, you mention your walker with a seatI use mine for carrying stuff, i.e. laundry, dishes etc, Frank says it's been worth much more than we paid for it!!! janh !TIAD !!! --- On Sat, 6/13/09, Patricia Cooley patticoo...@wi.rr.com wrote: TM HIT ME ON OUR 45TH WEDDING ANNIVERSARY. THAT IS A DATE NEIGHER OF US WILL FORGET. MY HUSBAND WHO NEVER DID ANY COOKING, LAUNDRY, ETC., HAD TO TAKE OVER ALL THE HOUSE WORK AND THE OUTSIDE WORK. WHEN I FIRST CAME HOME FROM THE HOPITAL AFTER 6 WEEKS, I WAS FORTUNATE THAT MY SISTER, NIECES, AND DAUGHTERS LOADED US UP ON MEALS WE COULD PUT IN THE FREEZER WHICH TOOK CARE OF US FOR ABOUT A MONTH. BILL, MY HUSBAND, HAD TO LEARN TO DO THE LAUNDRY, SOME COOKING AND EVERYTHING ELSE. AFTER A MONTH, A WAS ABLE TO HELP WITH THE COOKING IF I SAT IN MY WALKER WITH THE SEAT. I AM ALSO LUCKY THAT NOW I AM ABLE TO WALK AROUND THE HOUSE WITH NO WALKER OR CANE, SO I AM NOW DOING ALL THE COOKING, AND EVEN THE DISHES AFTERWARD. BILL STILL STARTS THE LAUNDRY, AND I CAN STEP IN AND FINISH AND DO ALL THE FOLDING. I AM NOT ABLE TO DO MUCH IN THE WAY OF CLEANING SO HE DOES THAT TOO. I ALWAYS THOUGHT I WOULD BE THE ONE TO TAKE CARE OF HIM, BUT THE LORD WORKS IN MYSTERIOUS WAYS. AFTER BEING MARRIED SO LONG, OUR RELATIONSHIP HASN’T CHANGED. I KNOW HE IS THERE FOR ME AND I AM THERE FOR HIM, SO WE ARE TWO VERY LUCKY PEOPLE. MY HEART GOES OUT TO ALL WHOSE RELATIONSHIP HAS CHANGED AND NOT FOR THE BETTER. PATTTI – WISCONSIN - TIAD From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Friday, June 12, 2009 3:01 PM To: transverse myelitis; Janice Subject: Re: [TMIC] Relationships TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC] Relationships
You are right. Those of us who have not had to fight society and family are extremely fortunate. Couldn't help but notice that the people causing you two so much grief ended up with worse problems. Wonder where that came from?!Janice - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com Sent: Saturday, June 13, 2009 6:05 AM Subject: Re: [TMIC] Relationships When TM hit me, I kept working until I no longer could. In fact I pushed myself even harder than before..probably a mistake. My boss said once, what's with all the sick, never asking what was my DX. He subsequently found out what sick was when he lost his only two sons, one to cancer and the other to a heart attack. Instead of making him more understanding, he treated me even worse. He was eventually pushed out, but his replacement wasn't much better. After I left, they found out just how much work i was doing, even with TM, and it took them a year to replace me. They also cheated me out of my private disability benefit. Now there are many layoffs there because of the economy. What goes around comes around. But I miss working and loved my job. I'm glad for you that you are happy and still able to work. Kevin rj_ran...@yahoo.com wrote: Been there. I was diagnosed with ms. Year later tm. I was engaged when tm hit. The future mom n law became the embodiment of hell. I still hate her. So didn't marry. Work was a problem. After I lost my bladder I had to self cath only problem I teach and the bosses made us call to leave the room. I had to explain my situation and he cut me off in anger and said he didn't wanna hear it. It was hard enough to build up guts to tell him and for him to walk out in that manner was really upsetting. But a year later his wife had a heart attack and his second in charge, who also treated me badly, had a stroke and is in worse shape than me. I transfered and am much happier. --Original Message-- From: Kevin Wolfthal To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Sent: Jun 12, 2009 8:06 PM Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? Sent from my Verizon Wireless BlackBerry
Re: [TMIC] Relationships
Karma, Karma, Karma gets um back! -- Original message from "Janice" jan...@centurytel.net: -- You are right. Those of us who have not had to fight society and family are extremely fortunate. Couldn't help but notice that the people causing you two so much grief ended up with worse problems. Wonder where that came from?! Janice - Original Message - From: "Kevin Wolfthal" <wolft...@optonline.net> To: <rj_ran...@yahoo.com>; <TMIC-LIST@ESKIMO.COM> Sent: Saturday, June 13, 2009 6:05 AM Subject: Re: [TMIC] Relationships When TM hit me, I kept working until I no longer could. In fact I pushed myself even harder than before..probably a mistake. My boss said once, "what's with all the sick", never asking what was my DX. He subsequently found out what "sick" was when he lost his only two sons, one to cancer and the other to a heart attack. Instead of making him more understanding, he treated me even worse. He was eventually pushed out, but his replacement wasn't much better. After I left, they found out just how much work i was doing, even with TM, and it took them a year to replace me. They also cheated me out of my private disability benefit. Now there are many layoffs there because of the economy. What goes around comes around. But I miss working and loved my job. I'm glad for you that you are happy and still able to work. Kevin rj_ran...@yahoo.com wrote: Been there. I was diagnosed with ms. Year later tm. I was engaged when tm hit. The future mom n law became the embodiment of hell. I still hate her. So didn't marry. Work was a problem. After I lost my bladder I had to self cath only problem I teach and the bosses made us call to leave the room. I had to explain my situation and he cut me off in anger and said he didn't wanna hear it. It was hard enough to build up guts to tell him and for him to walk out in that manner was really upsetting. But a year later his wife had a heart attack and his second in charge, who also treated me badly, had a stroke and is in worse shape than me. I transfered and am much happier. --Original Message-- From: Kevin Wolfthal To: tmic-list@eskimo.com Subject: Re: [TMIC] Relationships Sent: Jun 12, 2009 8:06 PM Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most "friends" disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, " Do you want to stay together or not ? " He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /<jan...@centurytel.net>/* wrote: From: Janice <jan...@centurytel.net> Subject: [TMIC] To: "transverse myelitis" <TMIC-LIST@ESKIMO.COM> Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner? Sent from my Verizon Wireless BlackBerry
Re: [TMIC] Relationships
TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC] Relationships
Never having been married, but always wanting a family, TM took away even my desire for that. My relationships, most friends disappeared. Relatives act like TM is contagious. Only my Mom has stayed constant. I help her the best I can, (she'll be 86 next week), and this has been a scary year. My Mom collapsed several months ago. I somehow got to her and gave her CPR, and she started to breathe again. She then spent 6 weeks in a nursing home. The rest of my family just wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin Todd Tarno wrote: TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On *Thu, 6/11/09, Janice /jan...@centurytel.net/* wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC] Relationships
My relationships, most friends disappeared. For me, too and the few that stepped up flew in from far far away and couldn't stay. One saved my life. But so so so sad that she could fly across country to help and my family, in the same state, didn't. Those of you who have had family and friends stick by you, consider yourself fortunate. Kevin I agree. I think I will knock the teeth out of mouth of the next person who tells me about advocating for myself. No one else has done it. No one is here to do it. I blogged about my latest hellish experience. I was invited to perform this evening and went through so much to prepare: change eating schedule so my body will be ready, have the aide who i only have once a week to shop, instead find makeup, tweezers, clothes ( meaning she couldn't do other things i needed), find someone to bring the drummer to me because there was no way for me to get to him, mediate annoyances, rehearse, create a new work, exercise, find transport--- which was going to cost $75 come from the other city , get me, bring me home. And on Tuesday I was told there was no ramp on the building--- the Community Arts Center-- so I couldn't perform. The physical l therapist told me she is closing my case out as there is nothing she can do for me. What she proposed was that i spend a couple hundred dollars to get my (unused) motorized wheelchair adjusted so that i might possibly be able to transfer to it without help. I said i couldn't gamble away money... if had some assurance or preview or trial then i would do it. What about standing, leg manipulation, etc? No answer. Case closed. Akua (furious) --
