Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Hi everyone, It's been awhile since I've posted. Sounds like you all had a great time at the Sarc convention, Rose, I loved the pictures! Aisha, your in my thoughts, hope you get to feeling better soon. I think some of you have already tried this, but for me it is really helping. When ever my pain starts to get worse, I take a 100 mg neurontin, that is in addition to the 800mgs three times a day, I already take. But I have found it to help more then the vicodin does. It one neurontin is not helpful, I take it with a vicodin, but have only had to do that once! Like I said I think some of you have already tried that, but it not, it's sure working for me! Lots of Love to you all, Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Marla, my neuro said to have an extra neurontin when I felt the pain was too great to just control it too. I find that helps when I'm in the agony stages also. You're not alone! Love isha. -- Pain better Hi everyone, It's been awhile since I've posted. Sounds like you all had a great time at the Sarc convention, Rose, I loved the pictures! Aisha, your in my thoughts, hope you get to feeling better soon. I think some of you have already tried this, but for me it is really helping When ever my pain starts to get worse, I take a 100 mg neurontin, that is in addition to the 800mgs three times a day, I already take. But I have found it to help more then the vicodin does. It one neurontin is not helpful I take it with a vicodin, but have only had to do that once! Like I said I think some of you have already tried that, but it not, it's sure working for me! Lots of Love to you all, Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Marla - Thanks for the suggestion on the neurontin. Although I haven't been on it too long, I have tried it when I feel one of those " sarc headaches " coming on and it seems to help. I only take little doses right now - 700 mg spread out over the day, but the neurologist is slowly increasing the dosage every 5 days. I was so happy when he finally prescribed it for my headaches and neck pain. It was like he finally LISTENED to me! It might sound crazy, but it felt like I finally had a " breakthrough " with a doctor, does that make sense? Well, enough about me. I hope you are doing well. Luv, Debbie T. > Hi everyone, > It's been awhile since I've posted. Sounds like you all had a great time at the Sarc convention, Rose, I loved the pictures! > Aisha, your in my thoughts, hope you get to feeling better soon. > I think some of you have already tried this, but for me it is really helping. When ever my pain starts to get worse, I take a 100 mg neurontin, that is in addition to the 800mgs three times a day, I already take. But I have found it to help more then the vicodin does. It one neurontin is not helpful, I take it with a vicodin, but have only had to do that once! > Like I said I think some of you have already tried that, but it not, it's sure working for me! > Lots of Love to you all, > Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Debbie, It is difficult to get the docs to listen believe me. I wish they would of listened to me sooner too. But I did finally get my local Pulm to listen, he is great! I hope you can get your neurontin dose up, but do go slow. it made me feel very heavy and light headed when I went up too fast, so I had to slow down. But now that I am at 800mgs three times a day, what a difference, and like I said the extra 100 mgs as needed is great!! Good luck. As for me, so far I'm having a good day, of course only been up about 15 mins! But I'm so excited, today I am going to a " Tea Party " . There is this place that is called Miss Addies Tea House, and she does real tea parties. The nurses where I worked a the hospital are giving me this going away Tea Party, it will be fun. Thinking of you, Marla Re: Pain better > Marla - > Thanks for the suggestion on the neurontin. Although I haven't > been on it too long, I have tried it when I feel one of those " sarc > headaches " coming on and it seems to help. I only take little doses > right now - 700 mg spread out over the day, but the neurologist is > slowly increasing the dosage every 5 days. I was so happy when he > finally prescribed it for my headaches and neck pain. It was like he > finally LISTENED to me! It might sound crazy, but it felt like I > finally had a " breakthrough " with a doctor, does that make sense? > Well, enough about me. I hope you are doing well. Luv, Debbie T. > > > > Hi everyone, > > It's been awhile since I've posted. Sounds like you all had a great > time at the Sarc convention, Rose, I loved the pictures! > > Aisha, your in my thoughts, hope you get to feeling better soon. > > I think some of you have already tried this, but for me it is really > helping. When ever my pain starts to get worse, I take a 100 mg > neurontin, that is in addition to the 800mgs three times a day, I > already take. But I have found it to help more then the vicodin does. > It one neurontin is not helpful, I take it with a vicodin, but have > only had to do that once! > > Like I said I think some of you have already tried that, but it > not, it's sure working for me! > > Lots of Love to you all, > > Marla > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 I hope you have a good time at your going away tea party. That sounds like fun. I hope you are doing okay adjusting to the " leaving work issue " . I know how hard it was for me too. It takes a while to get used to. That's nice that your coworkers are giving you the party. I hope you have a good time. Luv, Debbie T. > > > Hi everyone, > > > It's been awhile since I've posted. Sounds like you all had a great > > time at the Sarc convention, Rose, I loved the pictures! > > > Aisha, your in my thoughts, hope you get to feeling better soon. > > > I think some of you have already tried this, but for me it is really > > helping. When ever my pain starts to get worse, I take a 100 mg > > neurontin, that is in addition to the 800mgs three times a day, I > > already take. But I have found it to help more then the vicodin does. > > It one neurontin is not helpful, I take it with a vicodin, but have > > only had to do that once! > > > Like I said I think some of you have already tried that, but it > > not, it's sure working for me! > > > Lots of Love to you all, > > > Marla > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives and Digest Attachment Pictures:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Bookmarks:- > > Add a website URL you have found useful. > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > Personal Complaints or problems:- > > Please email the moderators > > mailto:Neurosarcoidosis-owner > > > > Subscription Details:- > > 1) Individual email - means that every email sent to the list you receive. > > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > > To modify your subscription settings please visit:- > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > To subscribe email neurosarcoidosis-subscribe > > To unsubscribe email neurosarcoidosis-unsubscribe > > > > The moderators will not be doing it for you! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > Come stand by my side where I am going, > > Take my hand if I should stumble and fall, > > It's the strength and love that you share, > > That gives me what I need most of all. > > - Hoyt Axton > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 Debbie, We had a great time! We had a real tea party with hot tea and finger sandwiches, and we wore old fashion hats. it was great and they gave me special going away gifts. You know what the hardest thing for me is, I was so happy and touched I was crying on the inside, but because I am " so dry " between Sarc and meds, my eyes just don't cry anymore, so it seems the heart just swells! They are the best group of nurses to work with!! I will miss working, but hope to stay in touch with them all. I hope you have a great weekend!. Marla Re: Pain better > I hope you have a good time at your going away tea party. That > sounds like fun. I hope you are doing okay adjusting to the " leaving > work issue " . I know how hard it was for me too. It takes a while to > get used to. That's nice that your coworkers are giving you the > party. I hope you have a good time. Luv, Debbie T. > > > > > > Hi everyone, > > > > It's been awhile since I've posted. Sounds like you all had a great > > > time at the Sarc convention, Rose, I loved the pictures! > > > > Aisha, your in my thoughts, hope you get to feeling better soon. > > > > I think some of you have already tried this, but for me it is really > > > helping. When ever my pain starts to get worse, I take a 100 mg > > > neurontin, that is in addition to the 800mgs three times a day, I > > > already take. But I have found it to help more then the vicodin does. > > > It one neurontin is not helpful, I take it with a vicodin, but have > > > only had to do that once! > > > > Like I said I think some of you have already tried that, but it > > > not, it's sure working for me! > > > > Lots of Love to you all, > > > > Marla > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives and Digest Attachment Pictures:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Bookmarks:- > > > Add a website URL you have found useful. > > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > > > Personal Complaints or problems:- > > > Please email the moderators > > > mailto:Neurosarcoidosis-owner > > > > > > Subscription Details:- > > > 1) Individual email - means that every email sent to the list you > receive. > > > 2) Daily Digest - sends you 25 messages in one single email for you to > > browse. This is an excellent option if you receive alot of email. > > > 3) Web only/No mail - means that you can pop into eGroups at your > > convenience and receive no email. > > > To modify your subscription settings please visit:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > > > To subscribe email neurosarcoidosis-subscribe > > > To unsubscribe email neurosarcoidosis-unsubscribe > > > > > > The moderators will not be doing it for you! > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > Come stand by my side where I am going, > > > Take my hand if I should stumble and fall, > > > It's the strength and love that you share, > > > That gives me what I need most of all. > > > - Hoyt Axton > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 isha, I'm glad I'm not alone, but I take the extra neurontin at the first sign of extra pain! Take care and have a great week. Love, Marla Pain better > > Hi everyone, > It's been awhile since I've posted. Sounds like you all had a great time at > the Sarc convention, Rose, I loved the pictures! > Aisha, your in my thoughts, hope you get to feeling better soon. > I think some of you have already tried this, but for me it is really helping > When ever my pain starts to get worse, I take a 100 mg neurontin, that is > in addition to the 800mgs three times a day, I already take. But I have > found it to help more then the vicodin does. It one neurontin is not helpful > I take it with a vicodin, but have only had to do that once! > Like I said I think some of you have already tried that, but it not, it's > sure working for me! > Lots of Love to you all, > Marla > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 Marla - I'm glad you had a good time. It sounded like fun! Just think of it this way, at least your eyes didn't get all red and puffy from crying! LOL Luv, Debbie T. PS And your eye makeup didn't run (if you wear it)! -- In Neurosarcoidosis , " Marla Bramer " <mbramer@c...> wrote: > Debbie, > We had a great time! We had a real tea party with hot tea and finger > sandwiches, and we wore old fashion hats. it was great and they gave me > special going away gifts. > You know what the hardest thing for me is, I was so happy and touched I was > crying on the inside, but because I am " so dry " between Sarc and meds, my > eyes just don't cry anymore, so it seems the heart just swells! > They are the best group of nurses to work with!! I will miss working, but > hope to stay in touch with them all. > I hope you have a great weekend!. > Marla > Re: Pain better > > > > I hope you have a good time at your going away tea party. That > > sounds like fun. I hope you are doing okay adjusting to the " leaving > > work issue " . I know how hard it was for me too. It takes a while to > > get used to. That's nice that your coworkers are giving you the > > party. I hope you have a good time. Luv, Debbie T. > > > > > > > > > Hi everyone, > > > > > It's been awhile since I've posted. Sounds like you all had a great > > > > time at the Sarc convention, Rose, I loved the pictures! > > > > > Aisha, your in my thoughts, hope you get to feeling better soon. > > > > > I think some of you have already tried this, but for me it is really > > > > helping. When ever my pain starts to get worse, I take a 100 mg > > > > neurontin, that is in addition to the 800mgs three times a day, I > > > > already take. But I have found it to help more then the vicodin does. > > > > It one neurontin is not helpful, I take it with a vicodin, but have > > > > only had to do that once! > > > > > Like I said I think some of you have already tried that, but it > > > > not, it's sure working for me! > > > > > Lots of Love to you all, > > > > > Marla > > > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > Live Group Chat:- > > > > Mondays & Fridays 10pm EST USA > > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > > > Message Archives and Digest Attachment Pictures:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members Database:- > > > > Listings of locations, phone numbers, and instant messengers. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Bookmarks:- > > > > Add a website URL you have found useful. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > > > > > Personal Complaints or problems:- > > > > Please email the moderators > > > > mailto:Neurosarcoidosis-owner > > > > > > > > Subscription Details:- > > > > 1) Individual email - means that every email sent to the list you > > receive. > > > > 2) Daily Digest - sends you 25 messages in one single email for you to > > > browse. This is an excellent option if you receive alot of email. > > > > 3) Web only/No mail - means that you can pop into eGroups at your > > > convenience and receive no email. > > > > To modify your subscription settings please visit:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > > > > > To subscribe email neurosarcoidosis-subscribe > > > > To unsubscribe email neurosarcoidosis- unsubscribe > > > > > > > > The moderators will not be doing it for you! > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > > > Come stand by my side where I am going, > > > > Take my hand if I should stumble and fall, > > > > It's the strength and love that you share, > > > > That gives me what I need most of all. > > > > - Hoyt Axton > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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