Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Hi Sharon, I'm trying to hang in here. I am at the point that I think I will have to call the doctor. dang! I hate when this happens, but like someone in the group says, This too shall pass. You take care, Love Lu Hey Lu, take care of yourself and get well soon. Love, Sharon > Hey Everyone, > I'm sorry I haven't posted much in a while, I've had > a lot of stress on me, > and I have been having a flare with my ears like it > did when I first got d/x. > OUCH! That pain is bad, isn't it? > > Anyway, sorry I have let you guys down and not been > here for you. To all of > the newbies, I would like to welcome you to this > wonderful caring group of > folks. I hope you can find all the answers you need > here. I know it will take > me a little while to get caught up. But I look > forward to getting to know you > better. > > To all who had a birthday and I missed it, Please > forgive. Happy Belated > Birthday! Even though I may not be posting sometime, > I always pray for this > group and everyone in it. I think of you often and > still want to win the > battle for a cure or a solution for remission. > > Please take care, > Love you lots > Lu > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Hi Sharon, I'm trying to hang in here. I am at the point that I think I will have to call the doctor. dang! I hate when this happens, but like someone in the group says, This too shall pass. You take care, Love Lu Hey Lu, take care of yourself and get well soon. Love, Sharon > Hey Everyone, > I'm sorry I haven't posted much in a while, I've had > a lot of stress on me, > and I have been having a flare with my ears like it > did when I first got d/x. > OUCH! That pain is bad, isn't it? > > Anyway, sorry I have let you guys down and not been > here for you. To all of > the newbies, I would like to welcome you to this > wonderful caring group of > folks. I hope you can find all the answers you need > here. I know it will take > me a little while to get caught up. But I look > forward to getting to know you > better. > > To all who had a birthday and I missed it, Please > forgive. Happy Belated > Birthday! Even though I may not be posting sometime, > I always pray for this > group and everyone in it. I think of you often and > still want to win the > battle for a cure or a solution for remission. > > Please take care, > Love you lots > Lu > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 --- Lu1953@... wrote: Hey Lu, take care of yourself and get well soon. Love, Sharon > Hey Everyone, > I'm sorry I haven't posted much in a while, I've had > a lot of stress on me, > and I have been having a flare with my ears like it > did when I first got d/x. > OUCH! That pain is bad, isn't it? > > Anyway, sorry I have let you guys down and not been > here for you. To all of > the newbies, I would like to welcome you to this > wonderful caring group of > folks. I hope you can find all the answers you need > here. I know it will take > me a little while to get caught up. But I look > forward to getting to know you > better. > > To all who had a birthday and I missed it, Please > forgive. Happy Belated > Birthday! Even though I may not be posting sometime, > I always pray for this > group and everyone in it. I think of you often and > still want to win the > battle for a cure or a solution for remission. > > Please take care, > Love you lots > Lu > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 --- Lu1953@... wrote: Hey Lu, take care of yourself and get well soon. Love, Sharon > Hey Everyone, > I'm sorry I haven't posted much in a while, I've had > a lot of stress on me, > and I have been having a flare with my ears like it > did when I first got d/x. > OUCH! That pain is bad, isn't it? > > Anyway, sorry I have let you guys down and not been > here for you. To all of > the newbies, I would like to welcome you to this > wonderful caring group of > folks. I hope you can find all the answers you need > here. I know it will take > me a little while to get caught up. But I look > forward to getting to know you > better. > > To all who had a birthday and I missed it, Please > forgive. Happy Belated > Birthday! Even though I may not be posting sometime, > I always pray for this > group and everyone in it. I think of you often and > still want to win the > battle for a cure or a solution for remission. > > Please take care, > Love you lots > Lu > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Lu,.... You take care and STOP that flaring ... you hear me????? No one is allowed to be sick for the rest of this year... lOl You call the dr and take some pred if he says to... I know you hate it, but if it stops the flare don't be so stubborn... it will take the pain away... You take care and let me know how you are. I've missed you something awful... If I have to I'll come to 'bama and make you well myself... (then I'll get to go see Jo (mom ) too. LOL hurry back Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Lu,.... You take care and STOP that flaring ... you hear me????? No one is allowed to be sick for the rest of this year... lOl You call the dr and take some pred if he says to... I know you hate it, but if it stops the flare don't be so stubborn... it will take the pain away... You take care and let me know how you are. I've missed you something awful... If I have to I'll come to 'bama and make you well myself... (then I'll get to go see Jo (mom ) too. LOL hurry back Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Hello everyone, my name is jacqueline age 43, I live in Indiana and I was diagnosed with sarcoidosis in 1996 and it attacked my central nervous system 6 years ago, wow this is not a very nice disease, I was gonna say you wouldn't believe all I have been through but I know you would because we've all been through and is still going through a lot now my ankles are swollen and they itch so bad and my bones hurt so I go to the doctor next month about that I tell you if it wasn't for my faith haha I just don't know.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Hey, Jackie! Welcome from another Hoosier. Where do you live? I'm in , just NE of Indy. Where are you getting your sarc care? This is a place to vent, cry, cuss, ask questions, share info, give & receive support, laugh, learn about grits (and some stuff you might just as soon skip!). No question is too dumb or obvious. Just remember that we are also sick & sometimes it seems like everyone can hit a flare at the same time, so if responses are slow, just give it a day or two. At the bottom of each message to the group, including this one, are a number of links--to the message archives which have a wealth of info, the Links section, which provides a variety of resources,many of which can be printed out & taken to your doctors, shown to family/friends, etc. There is also information on the chatroom. Let us know how we can help you, or you can help us. I'm assuming that you know about elevating your feet; they have to be higher than your heart to help the edema significantly. You might not know that immersion in warm water can trigger diuresis (peeing out extra fluid) and improve the edema. The water needs to be chest deep, preferably for at least 30-45 min. If you have access to a pool or hot tub (the temp needs to be turned down to a level you are comfortable with, especially if you have hypertension or other health issues), that can do wonders. I've had a hot tub for over two years. The first year I kept it at 104 except when my grandkids were coming to visit. This past winter I couldn't stand it over 90-94, even if the outside temp was 30 degrees! Now I'm keeping it at 80! It's still warm enough to ease my back pain, relax me & help the neuropathic pain in my feet. Anyway, now you know why I'm known as . . . . Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "group" <neurosarcoidosis >Subject: Hey EveryoneDate: Fri, 18 Aug 2006 09:50:35 -0400 Hello everyone, my name is jacqueline age 43, I live in Indiana and I was diagnosed with sarcoidosis in 1996 and it attacked my central nervous system 6 years ago, wow this is not a very nice disease, I was gonna say you wouldn't believe all I have been through but I know you would because we've all been through and is still going through a lot now my ankles are swollen and they itch so bad and my bones hurt so I go to the doctor next month about that I tell you if it wasn't for my faith haha I just don't know.... Get real-time traffic reports with Windows Live Local Search Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 It's okay Rose, just ramble on, I love it! I live in Indianapolis and I receive treatments at IU, I've been on disability now since 2000, I tell you I wake up in the morning like what next, with this disease it's always somethings! Due to the nerve condition I have peripheral neuropathy in my hands and feet so I can't walk good and don't have full feeling, I have a scooter, after I fell and broke my arm in 2001 my mom thought it best to buy me one, I have 3 grown children 1 son age 25 and 2 girls ages 19 in college and 21, I am grandmother to 4 boys and I live alone which is good and bad know what I mean, because sometimes you just don't want to be bothered, but anyways, I'm glad to be here and thanks for having me. jackie Hey EveryoneDate: Fri, 18 Aug 2006 09:50:35 -0400 Hello everyone, my name is jacqueline age 43, I live in Indiana and I was diagnosed with sarcoidosis in 1996 and it attacked my central nervous system 6 years ago, wow this is not a very nice disease, I was gonna say you wouldn't believe all I have been through but I know you would because we've all been through and is still going through a lot now my ankles are swollen and they itch so bad and my bones hurt so I go to the doctor next month about that I tell you if it wasn't for my faith haha I just don't know.... Get real-time traffic reports with Windows Live Local Search Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi , Keep the Faith girl, it’s what gets many of us through our days. Yes this is not a very nice disease, but you will find a lot of really nice people here! We know what you’re going through! Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of jacqueline Sent: Friday, August 18, 2006 6:51 AM To: group Subject: Hey Everyone Hello everyone, my name is jacqueline age 43, I live in Indiana and I was diagnosed with sarcoidosis in 1996 and it attacked my central nervous system 6 years ago, wow this is not a very nice disease, I was gonna say you wouldn't believe all I have been through but I know you would because we've all been through and is still going through a lot now my ankles are swollen and they itch so bad and my bones hurt so I go to the doctor next month about that I tell you if it wasn't for my faith haha I just don't know.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Thanks Marla, taking it one day at a time but some days are worse than other days grrrr... Hey Everyone Hello everyone, my name is jacqueline age 43, I live in Indiana and I was diagnosed with sarcoidosis in 1996 and it attacked my central nervous system 6 years ago, wow this is not a very nice disease, I was gonna say you wouldn't believe all I have been through but I know you would because we've all been through and is still going through a lot now my ankles are swollen and they itch so bad and my bones hurt so I go to the doctor next month about that I tell you if it wasn't for my faith haha I just don't know.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 It's nice to meet you Jackie, although I wish it were under different circumstances. You will find more answers, support and friendship here, than anywhere else I know. If you have a problem, someone in this group has faced it before and either has answers or at least great suggestions. I look forward to getting to know you better....Connie (A Certified G.R.I.T.S. /Girl Raised in the South, born and raised I might add) --- jacqueline jackie3740@...> wrote: > It's okay Rose, just ramble on, I love it! I live in > Indianapolis and I receive treatments at IU, I've > been on disability now since 2000, I tell you I wake > up in the morning like what next, with this disease > it's always somethings! Due to the nerve condition I > have peripheral neuropathy in my hands and feet so I > can't walk good and don't have full feeling, I have > a scooter, after I fell and broke my arm in 2001 my > mom thought it best to buy me one, I have 3 grown > children 1 son age 25 and 2 girls ages 19 in college > and 21, I am grandmother to 4 boys and I live alone > which is good and bad know what I mean, because > sometimes you just don't want to be bothered, but > anyways, I'm glad to be here and thanks for having > me. > > jackie > Hey Everyone > Date: Fri, 18 Aug 2006 09:50:35 -0400 > > > > Hello everyone, my name is jacqueline age 43, I > live in Indiana and I was diagnosed with sarcoidosis > in 1996 and it attacked my central nervous system 6 > years ago, wow this is not a very nice disease, I > was gonna say you wouldn't believe all I have been > through but I know you would because we've all been > through and is still going through a lot now my > ankles are swollen and they itch so bad and my bones > hurt so I go to the doctor next month about that I > tell you if it wasn't for my faith haha I just don't > know.... > > > > > > ------------------------------------------------------------------------------ > Get real-time traffic reports with Windows Live > Local Search > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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