Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I never had a remission. Mine has been an un-remitting type of Sarcoid Barb J.Debbie wrote: I had mentioned in my previous post earlier that the drs thought I was in remission but I am still on types of medication like a duragesic patch, vicodin, topomax, cymbalta, ventolin, serevent, uniphyl (type of theophylin) Singulair, Ritalin for alertness. When you were in remission did they still have you on all types of meds like this? Just another question......... Debbie Yahoo! Groups gets better. Check out the new email design. Plus there?s much more to come. Do not ask the Lord to guide your footsteps if you are not willing to move your feet. Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I have not seen Remission NEVER , since i've gotten sick in 95. When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Blessings and hugs and lots of love & pain free day in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I have not seen Remission NEVER , since i've gotten sick in 95. When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Blessings and hugs and lots of love & pain free day in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I have not seen Remission NEVER , since i've gotten sick in 95. When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Blessings and hugs and lots of love & pain free day in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Debbie, When I was in remission I was off all drugs and felt just fine. I could always tell when my Sarc was becoming active, mostly due to the fatigue and muscle body aches. I have only been in remission twice since dx in 1994, but was in remission for a couple years, I have now been active for the past 6 years, I think heard once you’ve been active for over 3 years you stay active? Not sure about that one. Hope this helps, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Monday, June 19, 2006 4:56 AM To: Neurosarcoidosis Subject: RE: Remission of Sarc To all who have been told they are in remission: If you have been told by your drs. that you are in a state of remission , do you still have some of the muscle aches and pains , the fatigue, weakness, the rotten headaches especially when you over do it? Right now I am not on any immunosuppressants, because my drs. don't think I need them. But I still am having these symptoms. They say they maybe caused by Fibromyalgia. They don't seem to think my sarcoid is in an active phase. I was just wondering because I know a lot of you have had times in your past that you were in states of remission. Any feedback on this? thanks Debbie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Debbie, When I was in remission I was off all drugs and felt just fine. I could always tell when my Sarc was becoming active, mostly due to the fatigue and muscle body aches. I have only been in remission twice since dx in 1994, but was in remission for a couple years, I have now been active for the past 6 years, I think heard once you’ve been active for over 3 years you stay active? Not sure about that one. Hope this helps, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Monday, June 19, 2006 4:56 AM To: Neurosarcoidosis Subject: RE: Remission of Sarc To all who have been told they are in remission: If you have been told by your drs. that you are in a state of remission , do you still have some of the muscle aches and pains , the fatigue, weakness, the rotten headaches especially when you over do it? Right now I am not on any immunosuppressants, because my drs. don't think I need them. But I still am having these symptoms. They say they maybe caused by Fibromyalgia. They don't seem to think my sarcoid is in an active phase. I was just wondering because I know a lot of you have had times in your past that you were in states of remission. Any feedback on this? thanks Debbie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Debbie, When I was in "remission"-- I was only on a couple of inhalers. I had to take my 800mg Motrin 3x day for inflammation, and the flexeril for the muscle spasms-- but those weren't "sarcoidosis". They thought it was fibromyalgia. LOL! It was sarcoid induced arthritis-- but who knew. With you being on so much pain meds-- there's still alot going on-- just what is the question. Hugs- and thanks for holding down the fort! Love ya, 'Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Debbie, When I was in "remission"-- I was only on a couple of inhalers. I had to take my 800mg Motrin 3x day for inflammation, and the flexeril for the muscle spasms-- but those weren't "sarcoidosis". They thought it was fibromyalgia. LOL! It was sarcoid induced arthritis-- but who knew. With you being on so much pain meds-- there's still alot going on-- just what is the question. Hugs- and thanks for holding down the fort! Love ya, 'Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Debbie, When I was in "remission"-- I was only on a couple of inhalers. I had to take my 800mg Motrin 3x day for inflammation, and the flexeril for the muscle spasms-- but those weren't "sarcoidosis". They thought it was fibromyalgia. LOL! It was sarcoid induced arthritis-- but who knew. With you being on so much pain meds-- there's still alot going on-- just what is the question. Hugs- and thanks for holding down the fort! Love ya, 'Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Oh , I’m sorry to hear that, but I have to say that each time the sarc came out of remission was worse then the time before, now I’m told I may never see remission. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of anci3ntgoddess@... Sent: Monday, June 19, 2006 11:22 AM To: Neurosarcoidosis Subject: Re: RE: Remission of Sarc I have not seen Remission NEVER , since i've gotten sick in 95. When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Blessings and hugs and lots of love & pain free day in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Tracie, What an awesome way to end the night. Thanks for your beautiful words to Jessie. This is how we should all look at each day. I know for me it is hard sometimes to stay optimistic right now, but you put me right back on track. Thanks! Hugs from TX, Diane Re: RE: Remission of Sarc When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone.Jessie,My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will.Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it.This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing.For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is.I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses.Just for today, I will step outside, and listen for the laughter of a child.Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating.Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me.Blessings for us all,TracieNS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Tracie, Once again you have a way with words, words that are so true, so deep, we need to hear this. Even if I am or am not completely healed, or go into remission or not, I try to keep my life going, easier for some and harder for others, this I do know. But I will continue to do what I can when I can. Right now I am up because my legs are at war with each other in bed, so I get up and walk around, can only sit for a few mins. Then back to bed to try again. These things come and go and we deal, sometimes better, sometimes not so well. But it is important to enjoy each and every day like it’s the last day of your life, good or bad. I still feel blessed to have the family and good friends around me, to help remember what is and what isn’t important. I am blessed, I have a good husband and three good kids, my dogs are a little wacky, but they love meJ I am blessed, on my worse days I sleep a little more, hmm that’s nice too, and on my good days I do a little more, and that too is nice. Yes, I am blessed, I know God is healing me in his way and in his time, and I am thankful for what he gives me each day. And I am blessed to have friends like you, like Rose who keep us all going, she is a joy. A ray of sunshine, and Tracie who is so very good with words, like a beautiful sunset, and Ron with his faith, like the stars they are always there to light our way, we just know they will be there, that is faith. , with so much knowledge, like the giant redwoods, full of wisdom and beauty. So many here, that are here to give, and to help each other feel better, and have better days, because in doing this we in turn have better days for ourselves. Remission or no remission with the body does not mean we cannot go into remission with our mind from time to time. Remember shoot for the moon, the worse that can happen is you end up in the stars. Such beauty we have around us, I am blessed to see the Rocky Mtn’s every day, I am in awe of their beauty, and there are always there for me, each and every dayJ OK I’ve rambled on enough, Tracie you just touched me with your words and got me going, that makes you another blessing in my life, thank you. Blessings to all, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, June 19, 2006 9:29 PM To: Neurosarcoidosis Subject: Re: RE: Remission of Sarc In a message dated 6/19/06 11:24:41 AM Pacific Daylight Time, anci3ntgoddess@... writes: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive " one more day " -- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Tracie, Once again you have a way with words, words that are so true, so deep, we need to hear this. Even if I am or am not completely healed, or go into remission or not, I try to keep my life going, easier for some and harder for others, this I do know. But I will continue to do what I can when I can. Right now I am up because my legs are at war with each other in bed, so I get up and walk around, can only sit for a few mins. Then back to bed to try again. These things come and go and we deal, sometimes better, sometimes not so well. But it is important to enjoy each and every day like it’s the last day of your life, good or bad. I still feel blessed to have the family and good friends around me, to help remember what is and what isn’t important. I am blessed, I have a good husband and three good kids, my dogs are a little wacky, but they love meJ I am blessed, on my worse days I sleep a little more, hmm that’s nice too, and on my good days I do a little more, and that too is nice. Yes, I am blessed, I know God is healing me in his way and in his time, and I am thankful for what he gives me each day. And I am blessed to have friends like you, like Rose who keep us all going, she is a joy. A ray of sunshine, and Tracie who is so very good with words, like a beautiful sunset, and Ron with his faith, like the stars they are always there to light our way, we just know they will be there, that is faith. , with so much knowledge, like the giant redwoods, full of wisdom and beauty. So many here, that are here to give, and to help each other feel better, and have better days, because in doing this we in turn have better days for ourselves. Remission or no remission with the body does not mean we cannot go into remission with our mind from time to time. Remember shoot for the moon, the worse that can happen is you end up in the stars. Such beauty we have around us, I am blessed to see the Rocky Mtn’s every day, I am in awe of their beauty, and there are always there for me, each and every dayJ OK I’ve rambled on enough, Tracie you just touched me with your words and got me going, that makes you another blessing in my life, thank you. Blessings to all, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, June 19, 2006 9:29 PM To: Neurosarcoidosis Subject: Re: RE: Remission of Sarc In a message dated 6/19/06 11:24:41 AM Pacific Daylight Time, anci3ntgoddess@... writes: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive " one more day " -- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Tracie, Once again you have a way with words, words that are so true, so deep, we need to hear this. Even if I am or am not completely healed, or go into remission or not, I try to keep my life going, easier for some and harder for others, this I do know. But I will continue to do what I can when I can. Right now I am up because my legs are at war with each other in bed, so I get up and walk around, can only sit for a few mins. Then back to bed to try again. These things come and go and we deal, sometimes better, sometimes not so well. But it is important to enjoy each and every day like it’s the last day of your life, good or bad. I still feel blessed to have the family and good friends around me, to help remember what is and what isn’t important. I am blessed, I have a good husband and three good kids, my dogs are a little wacky, but they love meJ I am blessed, on my worse days I sleep a little more, hmm that’s nice too, and on my good days I do a little more, and that too is nice. Yes, I am blessed, I know God is healing me in his way and in his time, and I am thankful for what he gives me each day. And I am blessed to have friends like you, like Rose who keep us all going, she is a joy. A ray of sunshine, and Tracie who is so very good with words, like a beautiful sunset, and Ron with his faith, like the stars they are always there to light our way, we just know they will be there, that is faith. , with so much knowledge, like the giant redwoods, full of wisdom and beauty. So many here, that are here to give, and to help each other feel better, and have better days, because in doing this we in turn have better days for ourselves. Remission or no remission with the body does not mean we cannot go into remission with our mind from time to time. Remember shoot for the moon, the worse that can happen is you end up in the stars. Such beauty we have around us, I am blessed to see the Rocky Mtn’s every day, I am in awe of their beauty, and there are always there for me, each and every dayJ OK I’ve rambled on enough, Tracie you just touched me with your words and got me going, that makes you another blessing in my life, thank you. Blessings to all, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, June 19, 2006 9:29 PM To: Neurosarcoidosis Subject: Re: RE: Remission of Sarc In a message dated 6/19/06 11:24:41 AM Pacific Daylight Time, anci3ntgoddess@... writes: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Jessie, My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will. Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it. This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing. For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is. I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive " one more day " -- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses. Just for today, I will step outside, and listen for the laughter of a child. Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating. Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me. Blessings for us all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 , I've never been in remission either. The NS started in 1999 with my hearing loss & facial nerve palsy, even though it wasn't recognized. The official diagnosis & treatment were in 2002. Even on Pred/Imuran, then Methotrexate, I didn't have a remission. Some things got a little better, some got worse, and a few new symptoms showed up just to keep things interesting. In the past two years, I feel like I've had a slow, steady decline. That's why I agreed with Baughman to try Cytoxan or Remicade; I don't want to just cruise along & wait for cardiac arrest, seizures or something else. My local neuro isn't comfortable with managing the Cytoxan, so I'm going to Indiana Univ. Med. Ctr. Sarc Clinic 7/27. they don't have a great reputation for neurology, but they do work closely with Baughman. Ramblin' Rose Moderator From: anci3ntgoddess@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: RE: Remission of SarcDate: Mon, 19 Jun 2006 14:21:50 EDT I have not seen Remission NEVER , since i've gotten sick in 95. When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone. Blessings and hugs and lots of love & pain free day in pa Join the new Messenger beta now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 VERY well said, Tracie!!!!!! There is nothing I could add except to say that I believe the same way! Hugs, Darlene NS Co-Owner/Moderator > My opinion is that we can NEVER SAY NEVER. > I refuse to believe that this is forever. It is for today-- and it has > it's > limitations. But if we decide that this disease will take our life-- we > stand > a greater chance that it will. > Even if it cripples us, it will does not have the ability to take our > soul--our spirit --unless we let it. > This last year has been a huge lesson of learning about illness and > watching > several close friends pass away from cancers. The difference in their > personal journey and the quality of life they had-- was how they decided > to see their > disease progressing. > For me, it has been a lesson in humbleness. These people had end-stage > cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, > in > extreme pain-- and they would come around for minutes at a time in such > incredible > lucidness-- and crack some wise-ass joke, then smile and go back into > their > process-- and they lived each day as the gift it is. > I've been so blessed to get to go on the emotional journeys with them- > share > their pain and sorrow and joy- at being alive " one more day " -- and they > all > said that they wouldn't change any of the journey. > Their voyage opened their hearts in ways that I never knew existed-- and > in > many ways still am learning. > Will this be hard-- it may be. It'll be harder if we fight or fear it-- > and > even if we fight and fear the what if-- what a horrible waste of time and > energy that we lose-- if we stay in fear. > > Just for today- I will see the beauty of the spiders web on the roses. > Just for today, I will step outside, and listen for the laughter of a > child. > Just for today, I will open my heart to my fears-- the unknown of what > this > disease has in store-- and celebrate the fact my heart is still beating. > Just for today, I will tell someone that they are loved, truly loved. > Just for today, I will tell myself that I am loved-- by me. > > Blessings for us all, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 VERY well said, Tracie!!!!!! There is nothing I could add except to say that I believe the same way! Hugs, Darlene NS Co-Owner/Moderator > My opinion is that we can NEVER SAY NEVER. > I refuse to believe that this is forever. It is for today-- and it has > it's > limitations. But if we decide that this disease will take our life-- we > stand > a greater chance that it will. > Even if it cripples us, it will does not have the ability to take our > soul--our spirit --unless we let it. > This last year has been a huge lesson of learning about illness and > watching > several close friends pass away from cancers. The difference in their > personal journey and the quality of life they had-- was how they decided > to see their > disease progressing. > For me, it has been a lesson in humbleness. These people had end-stage > cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, > in > extreme pain-- and they would come around for minutes at a time in such > incredible > lucidness-- and crack some wise-ass joke, then smile and go back into > their > process-- and they lived each day as the gift it is. > I've been so blessed to get to go on the emotional journeys with them- > share > their pain and sorrow and joy- at being alive " one more day " -- and they > all > said that they wouldn't change any of the journey. > Their voyage opened their hearts in ways that I never knew existed-- and > in > many ways still am learning. > Will this be hard-- it may be. It'll be harder if we fight or fear it-- > and > even if we fight and fear the what if-- what a horrible waste of time and > energy that we lose-- if we stay in fear. > > Just for today- I will see the beauty of the spiders web on the roses. > Just for today, I will step outside, and listen for the laughter of a > child. > Just for today, I will open my heart to my fears-- the unknown of what > this > disease has in store-- and celebrate the fact my heart is still beating. > Just for today, I will tell someone that they are loved, truly loved. > Just for today, I will tell myself that I am loved-- by me. > > Blessings for us all, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 VERY well said, Tracie!!!!!! There is nothing I could add except to say that I believe the same way! Hugs, Darlene NS Co-Owner/Moderator > My opinion is that we can NEVER SAY NEVER. > I refuse to believe that this is forever. It is for today-- and it has > it's > limitations. But if we decide that this disease will take our life-- we > stand > a greater chance that it will. > Even if it cripples us, it will does not have the ability to take our > soul--our spirit --unless we let it. > This last year has been a huge lesson of learning about illness and > watching > several close friends pass away from cancers. The difference in their > personal journey and the quality of life they had-- was how they decided > to see their > disease progressing. > For me, it has been a lesson in humbleness. These people had end-stage > cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, > in > extreme pain-- and they would come around for minutes at a time in such > incredible > lucidness-- and crack some wise-ass joke, then smile and go back into > their > process-- and they lived each day as the gift it is. > I've been so blessed to get to go on the emotional journeys with them- > share > their pain and sorrow and joy- at being alive " one more day " -- and they > all > said that they wouldn't change any of the journey. > Their voyage opened their hearts in ways that I never knew existed-- and > in > many ways still am learning. > Will this be hard-- it may be. It'll be harder if we fight or fear it-- > and > even if we fight and fear the what if-- what a horrible waste of time and > energy that we lose-- if we stay in fear. > > Just for today- I will see the beauty of the spiders web on the roses. > Just for today, I will step outside, and listen for the laughter of a > child. > Just for today, I will open my heart to my fears-- the unknown of what > this > disease has in store-- and celebrate the fact my heart is still beating. > Just for today, I will tell someone that they are loved, truly loved. > Just for today, I will tell myself that I am loved-- by me. > > Blessings for us all, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Your welcome Debbie, Just hang in there; my positive thoughts are with you always. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Tuesday, June 20, 2006 6:50 AM To: Neurosarcoidosis Subject: RE: RE: Remission of Sarc Thanks Marla for the feedback. I appreciate the information and your history. Yours along with Tracie's helps me understand what my body is going through. Hugs, Debbie Marla wrote: Debbie, When I was in remission I was off all drugs and felt just fine.� I could always tell when my Sarc was becoming active, mostly due to the fatigue and muscle body aches.� I have only been in remission twice since dx in 1994, but was in remission for a couple years, I have now been active for the past 6 years, I think heard once you’ve been active for over 3 years you stay active?� Not sure about that one. Hope this helps, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Monday, June 19, 2006 4:56 AM To: Neurosarcoidosis Subject: RE: Remission of Sarc To all who have been told they are in remission: If you have been told by your drs. that you are in a state of remission , do you still have some of the muscle aches and pains , the fatigue, weakness, the rotten headaches especially when you over do it? Right now I am not on any immunosuppressants, because my drs. don't think I need them. But I still am having these symptoms. They say they maybe caused by Fibromyalgia. They don't seem to think my sarcoid is in an active phase. I was just wondering because I know a lot of you have had times in your past that you were in states of remission. Any feedback on this? thanks Debbie � Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1�/min.  Do you Yahoo!? Get on board. You're invited to try the new Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Thank you Tracie//////Connietiodaat@... wrote: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone.Jessie,My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will.Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it.This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing.For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is.I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses.Just for today, I will step outside, and listen for the laughter of a child.Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating.Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me.Blessings for us all,TracieNS Co-owner/moderator Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Thank you Tracie//////Connietiodaat@... wrote: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone.Jessie,My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will.Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it.This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing.For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is.I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses.Just for today, I will step outside, and listen for the laughter of a child.Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating.Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me.Blessings for us all,TracieNS Co-owner/moderator Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Thank you Tracie//////Connietiodaat@... wrote: When the Neuro Dr trys to wean me down on the Imuran i end up in the hospital.. He told me i had a good chance of not seeing remission at all. whats your opinion ??? anyone.Jessie,My opinion is that we can NEVER SAY NEVER. I refuse to believe that this is forever. It is for today-- and it has it's limitations. But if we decide that this disease will take our life-- we stand a greater chance that it will.Even if it cripples us, it will does not have the ability to take our soul--our spirit --unless we let it.This last year has been a huge lesson of learning about illness and watching several close friends pass away from cancers. The difference in their personal journey and the quality of life they had-- was how they decided to see their disease progressing.For me, it has been a lesson in humbleness. These people had end-stage cancers and lymphomas. They were incontinent, bed ridden, semi-comatose, in extreme pain-- and they would come around for minutes at a time in such incredible lucidness-- and crack some wise-ass joke, then smile and go back into their process-- and they lived each day as the gift it is.I've been so blessed to get to go on the emotional journeys with them- share their pain and sorrow and joy- at being alive "one more day"-- and they all said that they wouldn't change any of the journey. Their voyage opened their hearts in ways that I never knew existed-- and in many ways still am learning. Will this be hard-- it may be. It'll be harder if we fight or fear it-- and even if we fight and fear the what if-- what a horrible waste of time and energy that we lose-- if we stay in fear. Just for today- I will see the beauty of the spiders web on the roses.Just for today, I will step outside, and listen for the laughter of a child.Just for today, I will open my heart to my fears-- the unknown of what this disease has in store-- and celebrate the fact my heart is still beating.Just for today, I will tell someone that they are loved, truly loved. Just for today, I will tell myself that I am loved-- by me.Blessings for us all,TracieNS Co-owner/moderator Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
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