Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 hey rose, the damn ringing in my ears are getting worse and driving me crazy listen(can you hear it) im on nuronton for nerve pain and also elivil, they also have me on some sort of anti seasure med, i have gone back to work and i find im not the same person, i used to be the best at what i do but now i find myself stearing into space, my mind feels full of holes, i walk into the kitchen for something specific and have know idea what it is when i get there(that is intil i go sit back down) i have developed a limp now and wonder what from, i just got home so im going to cut this short and eat and sleep, love to all... tonyRose wrote: Hi, . Are you on anything for the nerve pain (the burning, tingling, etc.)? Has your hearing been evaluated? The ringing may be from 8th nerve damage. Do you also have vertigo? I have bilateral hearing loss from NS. I have ringing in the right ear only. At first I thought it would drive me insane, but after awhile I didn't notice it much. I know how difficult it is to contemplate losing a career you love. I was a nurse-midwife for 20 years, but had to give it up 2+ years ago. Between hand tremors, balance problems, muscle weakness & memory problems, it became unsafe. I'm still just going around in circles like a moth. (Actually, I don't think I've ever seen a moth go in circles around a light. Hmm.) I have started a business degree, but can't concentrate enough to even pay my bills, let alone do coursework. Right now I'm using the perspective of land needing to lie fallow every few years, to recuperate the nutrients. You guys know what I'm trying to say. Anyway, I included a couple of messages from our very own, very wise (because she's really a gnome) Tracie! regarding this issue of careers & identity. I hope you find it interesting & helpful. This first one, in blue, was written 7/1/03. The second one, in purple, was written 4/8/05. The archives are full of valuable resources like this. DebbieI know that when i lost my job last summer and went on SSDI and fortunately, long-term disability that the change and loss was as big an insult as this disease is. Like you, I can't go thru the newspaper without reading the help wanted section. I still wrestle daily with the concept that I probably won't work again. My work was a big part of "who" I was. I found companionship, friendship, exhilaration, frustration, empathy, compassion, socialiazation, all of those needs were met by working. Not only were so many emotional needs met, but the paycheck afforded us a relatively nice lifestyle. So finding ways to play was easier.Now comes the loss of the social circle, the income, the freedom to make spontaneous choices, and the change of my personal character from Tracie the professional to Tracie. My life script, as written in my mind, changed completely.So, what now? Rewriting that identity script we have about ourselves is the toughest part. I don't have the new me done yet. Not sure I ever will. I'm not sure that I really even want to rewrite it. I say that from both the point of I liked who I was, and since I don't yet know who I am-- it's damn scary to "make" a new me. Debbie, know that you are supported in where-ever this journey is taking you. I know that my husband actually has come to accept the fact that I won't be working again alot easier than I am. If your husband can support you in this transition, let him. Snuggle into his arms, and let him hold you thru this. (yep, that's the part can't do). Be kind to yourself.Love, Tracie I've been spending some time just trying to figure out why it is that I need to spend so much time looking for answers for my sarcoidosis, when I know what it is, how it works, and that it is serious, even life threatening for me. This self-investigation is leading me to a place where I'm ready to put my energy to better use. Instead of frantically racing around, reading everything I can on sarcoidosis, and giving all my energy away to solving something that is not yet solvable-- I'm missing out on the beautiful things that are going on all around me. Don't get me wrong-- I'm not giving up, and I'm not walking into my MD's offices unarmed and uninformed. That would be the equivelent to suicide. I'm just really ready to plant some flowers, and keep them watered so they can grow. I'm ready to make a car to play with out of crystals. I'm ready to laugh, and be happy. I know that I will need oxygen supplementation to take the walk thru the mall, and down the road, I may need the wheelchair or scooter. When that time comes, I hope that I can find a friend that wants to race down the mall in our "buggies." I know that I may lose my vision, and my hearing is starting on the way out-- so I want to sit in the park, and watch the little kids play. I want to hear their laughter, and ingrain the sound in my mind. So many times when we are faced with chronic illness-- we lose track of all that is important. We lose our identities, as wives, as husbands, as mothers, as women and men, as the child we are to our parents, as the coach we are to the soccer team. Those losses come with great expense. They can, and rightfully do - steal our joy. We don't need to feed ourself huge doses of guilt because of these changes. We don't need to stay stuck in the pain of these losses, because when we do-- then we become emotionally dead-- even while we're still very much alive. The season is changing, for those of us in the states, it's Springtime! It's time to start anew. Even if you've just been diagnosed with sarcoidosis, or are waiting for a diagnosis-- you can still celebrate the victories of today. Maybe it's the tulip poking through, or maybe it's already blooming, following the sun's path thru the day-- opening so very wide so every inch of it's surface can be warmed. I saw my first butterfly of the season today! I also saw rain, and sleet, and hail, and a rainbow, and snow, and the blackest clouds, and the whitest clouds, all in the space of 30 minutes. All while sitting on my couch. This disease is a bitch-- pure and simple. But it does not have to take my spirit, and it doesn't have to take your's either.So grab ahold of the grapevine, and pull yourself up-- we'll hang on to the other end, and it will be good. Ramblin' Rose Moderator Make FREE PC-to-PC calls with MSN Messenger. Get it now! Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Tony I don't know how much Neurontin they started you on or how long you've been taking it but it made me " spacey " at first (OK my friends would say " spacier " than my normal LOL) but I adjusted after a bit. Hang in there kiddo we're always here. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Tony I don't know how much Neurontin they started you on or how long you've been taking it but it made me " spacey " at first (OK my friends would say " spacier " than my normal LOL) but I adjusted after a bit. Hang in there kiddo we're always here. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Tony I don't know how much Neurontin they started you on or how long you've been taking it but it made me " spacey " at first (OK my friends would say " spacier " than my normal LOL) but I adjusted after a bit. Hang in there kiddo we're always here. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hi Tony, The piece that Rose quoted earlier was a post that Tracie had posted to me in 2003 about 4 months after I had to quit my job that I loved after 17 years of working there. I was lost and very, very upset feeling displaced in the world . Also I was very angry at the world and how my illness was changing my life so much. I, too, thought eventually I would get better enough to return back to the job that I loved so. But here I am 3 years later on Soc security disability probably not working ever again. My memory is gone, my cognitive skills are trashed, and my energy is no longer there. I am on several types of antidepressants because I was getting so depressed.It took a long time, but I have finally come to have come to accept that I will never be that same working mother of 3 who could work 45 hours a week, keep a house and raise 3 kids all at the same time. I know I still think about it from time to time. I miss my old life terribly and I grief for it. But I try to stay positive and try to accept this is what I am now and things could be worse for me. At least I can still walk and talk and I am not as bad as others are. I feel for you because I know what you are going through right now. It's hard, I know to loose your old identity. It's like changing to a whole new person. I know these words Tracie had passed onto me helped me a lot. I hope they help you too. Anytime you want to talk about it, I am here to listen. Hope you feel better soon. Hugs, Debbie<This first one, in blue, was written 7/1/03. The second one, in purple, was written 4/8/05. The archives are full of valuable resources like this. DebbieI know that when i lost my job last summer and went on SSDI and fortunately, long-term disability that the change and loss was as big an insult as this disease is. Like you, I can't go thru the newspaper without reading the help wanted section. I still wrestle daily with the concept that I probably won't work again. My work was a big part of "who" I was. I found companionship, friendship, exhilaration, frustration, empathy, compassion, socialiazation, all of those needs were met by working. Not only were so many emotional needs met, but the paycheck afforded us a relatively nice lifestyle. So finding ways to play was easier.Now comes the loss of the social circle, the income, the freedom to make spontaneous choices, and the change of my personal character from Tracie the professional to Tracie. My life script, as written in my mind, changed completely.So, what now? Rewriting that identity script we have about ourselves is the toughest part. I don't have the new me done yet. Not sure I ever will. I'm not sure that I really even want to rewrite it. I say that from both the point of I liked who I was, and since I don't yet know who I am-- it's damn scary to "make" a new me. Debbie, know that you are supported in where-ever this journey is taking you. I know that my husband actually has come to accept the fact that I won't be working again alot easier than I am. If your husband can support you in this transition, let him. Snuggle into his arms, and let him hold you thru this. (yep, that's the part can't do). Be kind to yourself.Love, Tracie >anthony duquette wrote: hey rose, the damn ringing in my ears are getting worse and driving me crazy listen(can you hear it) im on nuronton for nerve pain and also elivil, they also have me on some sort of anti seasure med, i have gone back to work and i find im not the same person, i used to be the best at what i do but now i find myself stearing into space, my mind feels full of holes, i walk into the kitchen for something specific and have know idea what it is when i get there(that is intil i go sit back down) i have developed a limp now and wonder what from, i just got home so im going to cut this short and eat and sleep, love to all... tonyRose wrote: Hi, . Are you on anything for the nerve pain (the burning, tingling, etc.)? Has your hearing been evaluated? The ringing may be from 8th nerve damage. Do you also have vertigo? I have bilateral hearing loss from NS. I have ringing in the right ear only. At first I thought it would drive me insane, but after awhile I didn't notice it much. I know how difficult it is to contemplate losing a career you love. I was a nurse-midwife for 20 years, but had to give it up 2+ years ago. Between hand tremors, balance problems, muscle weakness & memory problems, it became unsafe. I'm still just going around in circles like a moth. (Actually, I don't think I've ever seen a moth go in circles around a light. Hmm.) I have started a business degree, but can't concentrate enough to even pay my bills, let alone do coursework. Right now I'm using the perspective of land needing to lie fallow every few years, to recuperate the nutrients. You guys know what I'm trying to say. Anyway, I included a couple of messages from our very own, very wise (because she's really a gnome) Tracie! regarding this issue of careers & identity. I hope you find it interesting & helpful. This first one, in blue, was written 7/1/03. The second one, in purple, was written 4/8/05. The archives are full of valuable resources like this. DebbieI know that when i lost my job last summer and went on SSDI and fortunately, long-term disability that the change and loss was as big an insult as this disease is. Like you, I can't go thru the newspaper without reading the help wanted section. I still wrestle daily with the concept that I probably won't work again. My work was a big part of "who" I was. I found companionship, friendship, exhilaration, frustration, empathy, compassion, socialiazation, all of those needs were met by working. Not only were so many emotional needs met, but the paycheck afforded us a relatively nice lifestyle. So finding ways to play was easier.Now comes the loss of the social circle, the income, the freedom to make spontaneous choices, and the change of my personal character from Tracie the professional to Tracie. My life script, as written in my mind, changed completely.So, what now? Rewriting that identity script we have about ourselves is the toughest part. I don't have the new me done yet. Not sure I ever will. I'm not sure that I really even want to rewrite it. I say that from both the point of I liked who I was, and since I don't yet know who I am-- it's damn scary to "make" a new me. Debbie, know that you are supported in where-ever this journey is taking you. I know that my husband actually has come to accept the fact that I won't be working again alot easier than I am. If your husband can support you in this transition, let him. Snuggle into his arms, and let him hold you thru this. (yep, that's the part can't do). Be kind to yourself.Love, Tracie I've been spending some time just trying to figure out why it is that I need to spend so much time looking for answers for my sarcoidosis, when I know what it is, how it works, and that it is serious, even life threatening for me. This self-investigation is leading me to a place where I'm ready to put my energy to better use. Instead of frantically racing around, reading everything I can on sarcoidosis, and giving all my energy away to solving something that is not yet solvable-- I'm missing out on the beautiful things that are going on all around me. Don't get me wrong-- I'm not giving up, and I'm not walking into my MD's offices unarmed and uninformed. That would be the equivelent to suicide. I'm just really ready to plant some flowers, and keep them watered so they can grow. I'm ready to make a car to play with out of crystals. I'm ready to laugh, and be happy. I know that I will need oxygen supplementation to take the walk thru the mall, and down the road, I may need the wheelchair or scooter. When that time comes, I hope that I can find a friend that wants to race down the mall in our "buggies." I know that I may lose my vision, and my hearing is starting on the way out-- so I want to sit in the park, and watch the little kids play. I want to hear their laughter, and ingrain the sound in my mind. So many times when we are faced with chronic illness-- we lose track of all that is important. We lose our identities, as wives, as husbands, as mothers, as women and men, as the child we are to our parents, as the coach we are to the soccer team. Those losses come with great expense. They can, and rightfully do - steal our joy. We don't need to feed ourself huge doses of guilt because of these changes. We don't need to stay stuck in the pain of these losses, because when we do-- then we become emotionally dead-- even while we're still very much alive. The season is changing, for those of us in the states, it's Springtime! It's time to start anew. Even if you've just been diagnosed with sarcoidosis, or are waiting for a diagnosis-- you can still celebrate the victories of today. Maybe it's the tulip poking through, or maybe it's already blooming, following the sun's path thru the day-- opening so very wide so every inch of it's surface can be warmed. I saw my first butterfly of the season today! I also saw rain, and sleet, and hail, and a rainbow, and snow, and the blackest clouds, and the whitest clouds, all in the space of 30 minutes. All while sitting on my couch. This disease is a bitch-- pure and simple. But it does not have to take my spirit, and it doesn't have to take your's either.So grab ahold of the grapevine, and pull yourself up-- we'll hang on to the other end, and it will be good. Ramblin' Rose Moderator Make FREE PC-to-PC calls with MSN Messenger. Get it now! Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. What are the most popular cars? Find out at Yahoo! Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 im on nuronton for nerve pain and also elivil, they also have me on some sort of anti seasure med, i have gone back to work and i find im not the same person, i used to be the best at what i do but now i find myself stearing into space, my mind feels full of holes, i walk into the kitchen for something specific and have know idea what it is when i get there(that is intil i go sit back down) i have developed a limp now and wonder what from Tony, Talk to your MD about going up on the Neurontin 100mg at a time. When I first started on it-- they put me on 300mg tabs 3 -4x a day. My legs felt weak, and I couldn't count on them being there for me. It also made me incontinent. So we switched to 100mg tablets, and I found that I could take 1200mg a day--but just 2 tabs at a time. Neurontin is an anti-seizure medication-so if you're taking a second one--I'd check to see if the Neurontin was supposed to replace the other one. Also--check with the pharmacist--and see if any of your meds when combined with each other, would cause the ringing in the ears. You may also find that by taking the Elavil at night before bed (if it makes you sleepy or disoriented) will help so that you can function better in the daytime. Do they have you on the Elavil for depression, or for pain control. (It works on the Seratonin levels)? You may need to change to a different med--but that's between you and your MD. This is a good site for pain medication info. http://www.theacpa.org Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Tony, you really have a lot going on. It must seem scary and overwhelming. You said you are on an anti-seizure med; is it for actual seizures or for neuropathy? There are several anti-seizure meds used for neuropathy, headaches, etc. But maybe they are interacting. Have you seen an ear specialist for the ringing? One thing that helped mine was a hearing aid that masked some of the noise. If you don't have hearing loss, there still might be something to help the tinnitis. I can relate to the blanking out. If I go to another room to get something, I have to chant out loud what I'm getting or I'll forget by the time I get there. Same with writing stuff down. I'll think of something I need to do & by the time I pick up a pen & paper, I've forgotten it. So it's not unusual for me to walk into the house saying, "Dogfood, toilet paper. Dogfood, toilet paper. Dogfood, toilet paper." I am actually in the process of tapering off one of the meds for my neuropathic pain in my feet, to see if that clears up any of the brain fog. This disease is so frustrating because you are always trying to balance the symptoms & damage from the sarc with the side effects from the drugs. It can be very difficult to figure out which is sarc & which is drugs. And it's impossible to know what would have happened if you hadn't taken a particular drug. You really need a team leader, a doctor who is up to date on sarc & treatment options & can coordinate your treatment. Otherwise, you've got docs here & there treating different symptoms & no one looking at the whole picture. Hang in there. Tracie once said that each of us alone may have only a thin thread to hold on to, but if we braid them together it becomes a strong cord. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: work & identityDate: Thu, 16 Feb 2006 15:16:11 -0800 (PST)hey rose, the damn ringing in my ears are getting worse and driving me crazy listen(can you hear it) im on nuronton for nerve pain and also elivil, they also have me on some sort of anti seasure med, i have gone back to work and i find im not the same person, i used to be the best at what i do but now i find myself stearing into space, my mind feels full of holes, i walk into the kitchen for something specific and have know idea what it is when i get there(that is intil i go sit back down) i have developed a limp now and wonder what from, i just got home so im going to cut this short and eat and sleep, love to all... tonyRose wrote: Hi, . Are you on anything for the nerve pain (the burning, tingling, etc.)? Has your hearing been evaluated? The ringing may be from 8th nerve damage. Do you also have vertigo? I have bilateral hearing loss from NS. I have ringing in the right ear only. At first I thought it would drive me insane, but after awhile I didn't notice it much. I know how difficult it is to contemplate losing a career you love. I was a nurse-midwife for 20 years, but had to give it up 2+ years ago. Between hand tremors, balance problems, muscle weakness & memory problems, it became unsafe. I'm still just going around in circles like a moth. (Actually, I don't think I've ever seen a moth go in circles around a light. Hmm.) I have started a business degree, but can't concentrate enough to even pay my bills, let alone do coursework. Right now I'm using the perspective of land needing to lie fallow every few years, to recuperate the nutrients. You guys know what I'm trying to say. Anyway, I included a couple of messages from our very own, very wise (because she's really a gnome) Tracie! regarding this issue of careers & identity. I hope you find it interesting & helpful. This first one, in blue, was written 7/1/03. The second one, in purple, was written 4/8/05. The archives are full of valuable resources like this. DebbieI know that when i lost my job last summer and went on SSDI and fortunately, long-term disability that the change and loss was as big an insult as this disease is. Like you, I can't go thru the newspaper without reading the help wanted section. I still wrestle daily with the concept that I probably won't work again. My work was a big part of "who" I was. I found companionship, friendship, exhilaration, frustration, empathy, compassion, socialiazation, all of those needs were met by working. Not only were so many emotional needs met, but the paycheck afforded us a relatively nice lifestyle. So finding ways to play was easier.Now comes the loss of the social circle, the income, the freedom to make spontaneous choices, and the change of my personal character from Tracie the professional to Tracie. My life script, as written in my mind, changed completely.So, what now? Rewriting that identity script we have about ourselves is the toughest part. I don't have the new me done yet. Not sure I ever will. I'm not sure that I really even want to rewrite it. I say that from both the point of I liked who I was, and since I don't yet know who I am-- it's damn scary to "make" a new me. Debbie, know that you are supported in where-ever this journey is taking you. I know that my husband actually has come to accept the fact that I won't be working again alot easier than I am. If your husband can support you in this transition, let him. Snuggle into his arms, and let him hold you thru this. (yep, that's the part can't do). Be kind to yourself.Love, Tracie I've been spending some time just trying to figure out why it is that I need to spend so much time looking for answers for my sarcoidosis, when I know what it is, how it works, and that it is serious, even life threatening for me. This self-investigation is leading me to a place where I'm ready to put my energy to better use. Instead of frantically racing around, reading everything I can on sarcoidosis, and giving all my energy away to solving something that is not yet solvable-- I'm missing out on the beautiful things that are going on all around me. Don't get me wrong-- I'm not giving up, and I'm not walking into my MD's offices unarmed and uninformed. That would be the equivelent to suicide. I'm just really ready to plant some flowers, and keep them watered so they can grow. I'm ready to make a car to play with out of crystals. I'm ready to laugh, and be happy. I know that I will need oxygen supplementation to take the walk thru the mall, and down the road, I may need the wheelchair or scooter. When that time comes, I hope that I can find a friend that wants to race down the mall in our "buggies." I know that I may lose my vision, and my hearing is starting on the way out-- so I want to sit in the park, and watch the little kids play. I want to hear their laughter, and ingrain the sound in my mind. So many times when we are faced with chronic illness-- we lose track of all that is important. We lose our identities, as wives, as husbands, as mothers, as women and men, as the child we are to our parents, as the coach we are to the soccer team. Those losses come with great expense. They can, and rightfully do - steal our joy. We don't need to feed ourself huge doses of guilt because of these changes. We don't need to stay stuck in the pain of these losses, because when we do-- then we become emotionally dead-- even while we're still very much alive. The season is changing, for those of us in the states, it's Springtime! It's time to start anew. Even if you've just been diagnosed with sarcoidosis, or are waiting for a diagnosis-- you can still celebrate the victories of today. Maybe it's the tulip poking through, or maybe it's already blooming, following the sun's path thru the day-- opening so very wide so every inch of it's surface can be warmed. I saw my first butterfly of the season today! I also saw rain, and sleet, and hail, and a rainbow, and snow, and the blackest clouds, and the whitest clouds, all in the space of 30 minutes. All while sitting on my couch. This disease is a bitch-- pure and simple. But it does not have to take my spirit, and it doesn't have to take your's either.So grab ahold of the grapevine, and pull yourself up-- we'll hang on to the other end, and it will be good. Ramblin' Rose Moderator Make FREE PC-to-PC calls with MSN Messenger. Get it now! Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Rose, I do the same trick/tool that you use by repeating things to myself so i don't forget. " ...brush my teeth, take pain pills, make a chore list..... "...and repeat it until I get each thing done before i lie down again. I'm sure it sounds abit odd to other people around the house but it helps me stay on track. I keep a notebook for things I order on-line or from catalogs so I don't forget and order something twice. I also write down everybody's sizes and fav colors, etc. in there for shopping. Another notebook/datebook and I write down all i spend. Unless I have a really bad week and then I just do my best. A small notebook with websites and passwords. I use a notebook as a journal...a notebook for bible study...a notebook for love scriptures...a notebook for a daily to do list and a clipboard for daily chore lists for my husband and son. As my memory has gotten worse my notebooks increase. Yes, by now you can gather I'm a type A personality...(but actually not as bad as some i know...). Frustrating doesn't begin to describe this disease. This week it's been exasperating! But thanks for always being there, Rose, cuz you regularly bring a smile to my face. hugs and have a great weekend mary S.Rose wrote: Tony, you really have a lot going on. It must seem scary and overwhelming. You said you are on an anti-seizure med; is it for actual seizures or for neuropathy? There are several anti-seizure meds used for neuropathy, headaches, etc. But maybe they are interacting. Have you seen an ear specialist for the ringing? One thing that helped mine was a hearing aid that masked some of the noise. If you don't have hearing loss, there still might be something to help the tinnitis. I can relate to the blanking out. If I go to another room to get something, I have to chant out loud what I'm getting or I'll forget by the time I get there. Same with writing stuff down. I'll think of something I need to do & by the time I pick up a pen & paper, I've forgotten it. So it's not unusual for me to walk into the house saying, "Dogfood, toilet paper. Dogfood, toilet paper. Dogfood, toilet paper." I am actually in the process of tapering off one of the meds for my neuropathic pain in my feet, to see if that clears up any of the brain fog. This disease is so frustrating because you are always trying to balance the symptoms & damage from the sarc with the side effects from the drugs. It can be very difficult to figure out which is sarc & which is drugs. And it's impossible to know what would have happened if you hadn't taken a particular drug. You really need a team leader, a doctor who is up to date on sarc & treatment options & can coordinate your treatment. Otherwise, you've got docs here & there treating different symptoms & no one looking at the whole picture. Hang in there. Tracie once said that each of us alone may have only a thin thread to hold on to, but if we braid them together it becomes a strong cord. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: work & identityDate: Thu, 16 Feb 2006 15:16:11 -0800 (PST)hey rose, the damn ringing in my ears are getting worse and driving me crazy listen(can you hear it) im on nuronton for nerve pain and also elivil, they also have me on some sort of anti seasure med, i have gone back to work and i find im not the same person, i used to be the best at what i do but now i find myself stearing into space, my mind feels full of holes, i walk into the kitchen for something specific and have know idea what it is when i get there(that is intil i go sit back down) i have developed a limp now and wonder what from, i just got home so im going to cut this short and eat and sleep, love to all... tonyRose wrote: Hi, . Are you on anything for the nerve pain (the burning, tingling, etc.)? Has your hearing been evaluated? The ringing may be from 8th nerve damage. Do you also have vertigo? I have bilateral hearing loss from NS. I have ringing in the right ear only. At first I thought it would drive me insane, but after awhile I didn't notice it much. I know how difficult it is to contemplate losing a career you love. I was a nurse-midwife for 20 years, but had to give it up 2+ years ago. Between hand tremors, balance problems, muscle weakness & memory problems, it became unsafe. I'm still just going around in circles like a moth. (Actually, I don't think I've ever seen a moth go in circles around a light. Hmm.) I have started a business degree, but can't concentrate enough to even pay my bills, let alone do coursework. Right now I'm using the perspective of land needing to lie fallow every few years, to recuperate the nutrients. You guys know what I'm trying to say. Anyway, I included a couple of messages from our very own, very wise (because she's really a gnome) Tracie! regarding this issue of careers & identity. I hope you find it interesting & helpful. This first one, in blue, was written 7/1/03. The second one, in purple, was written 4/8/05. The archives are full of valuable resources like this. DebbieI know that when i lost my job last summer and went on SSDI and fortunately, long-term disability that the change and loss was as big an insult as this disease is. Like you, I can't go thru the newspaper without reading the help wanted section. I still wrestle daily with the concept that I probably won't work again. My work was a big part of "who" I was. I found companionship, friendship, exhilaration, frustration, empathy, compassion, socialiazation, all of those needs were met by working. Not only were so many emotional needs met, but the paycheck afforded us a relatively nice lifestyle. So finding ways to play was easier.Now comes the loss of the social circle, the income, the freedom to make spontaneous choices, and the change of my personal character from Tracie the professional to Tracie. My life script, as written in my mind, changed completely.So, what now? Rewriting that identity script we have about ourselves is the toughest part. I don't have the new me done yet. Not sure I ever will. I'm not sure that I really even want to rewrite it. I say that from both the point of I liked who I was, and since I don't yet know who I am-- it's damn scary to "make" a new me. Debbie, know that you are supported in where-ever this journey is taking you. I know that my husband actually has come to accept the fact that I won't be working again alot easier than I am. If your husband can support you in this transition, let him. Snuggle into his arms, and let him hold you thru this. (yep, that's the part can't do). Be kind to yourself.Love, Tracie I've been spending some time just trying to figure out why it is that I need to spend so much time looking for answers for my sarcoidosis, when I know what it is, how it works, and that it is serious, even life threatening for me. This self-investigation is leading me to a place where I'm ready to put my energy to better use. Instead of frantically racing around, reading everything I can on sarcoidosis, and giving all my energy away to solving something that is not yet solvable-- I'm missing out on the beautiful things that are going on all around me. Don't get me wrong-- I'm not giving up, and I'm not walking into my MD's offices unarmed and uninformed. That would be the equivelent to suicide. I'm just really ready to plant some flowers, and keep them watered so they can grow. I'm ready to make a car to play with out of crystals. I'm ready to laugh, and be happy. I know that I will need oxygen supplementation to take the walk thru the mall, and down the road, I may need the wheelchair or scooter. When that time comes, I hope that I can find a friend that wants to race down the mall in our "buggies." I know that I may lose my vision, and my hearing is starting on the way out-- so I want to sit in the park, and watch the little kids play. I want to hear their laughter, and ingrain the sound in my mind. So many times when we are faced with chronic illness-- we lose track of all that is important. We lose our identities, as wives, as husbands, as mothers, as women and men, as the child we are to our parents, as the coach we are to the soccer team. Those losses come with great expense. They can, and rightfully do - steal our joy. We don't need to feed ourself huge doses of guilt because of these changes. We don't need to stay stuck in the pain of these losses, because when we do-- then we become emotionally dead-- even while we're still very much alive. The season is changing, for those of us in the states, it's Springtime! It's time to start anew. Even if you've just been diagnosed with sarcoidosis, or are waiting for a diagnosis-- you can still celebrate the victories of today. Maybe it's the tulip poking through, or maybe it's already blooming, following the sun's path thru the day-- opening so very wide so every inch of it's surface can be warmed. I saw my first butterfly of the season today! I also saw rain, and sleet, and hail, and a rainbow, and snow, and the blackest clouds, and the whitest clouds, all in the space of 30 minutes. All while sitting on my couch. This disease is a bitch-- pure and simple. But it does not have to take my spirit, and it doesn't have to take your's either.So grab ahold of the grapevine, and pull yourself up-- we'll hang on to the other end, and it will be good. Ramblin' Rose Moderator Make FREE PC-to-PC calls with MSN Messenger. Get it now! Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 I have trouble remembering everything too. My sister, who is my payee & makes sure I remember to pay my bills, got me a VISA gift card with the money leftover after the bills. It's not reloadable but it only cost $2.95 at the bank. There aren't any additional fees & you can use it anywhere you can use a VISA card. My favorite part is you can go online & it shows everything you bought. I tried keeping the receipts but that didn't work for me at all. I kept misplacing them & restaurants & church do not give them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 I have trouble remembering everything too. My sister, who is my payee & makes sure I remember to pay my bills, got me a VISA gift card with the money leftover after the bills. It's not reloadable but it only cost $2.95 at the bank. There aren't any additional fees & you can use it anywhere you can use a VISA card. My favorite part is you can go online & it shows everything you bought. I tried keeping the receipts but that didn't work for me at all. I kept misplacing them & restaurants & church do not give them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 I have trouble remembering everything too. My sister, who is my payee & makes sure I remember to pay my bills, got me a VISA gift card with the money leftover after the bills. It's not reloadable but it only cost $2.95 at the bank. There aren't any additional fees & you can use it anywhere you can use a VISA card. My favorite part is you can go online & it shows everything you bought. I tried keeping the receipts but that didn't work for me at all. I kept misplacing them & restaurants & church do not give them. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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