Question:
definitely! Leslie "Shelagh" <valleylu…@telus.net> wrote in message
news:RHCi8.4891$%6.173458@news2.telusplanet.net… – Hide quoted text — Show quoted text -> Don’t you mean the 1000 faces of the enemy?? > — > Shelagh at ‘Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus/index.html > Lupus Information and Support Contact for Everyone. > "Chaos Hill" <mrsmu…@hotmail.com> wrote in message > news:u8kq2rkl9n1obf@corp.supernews.com… > | Hello Laura, and welcome. I am new here, but need to come more often > because > | these folks are a link to what ails me and they make me laugh. > | I have SLE, but do have scrambled words and clumsiness that is a > | nuisance…. It does help to simply know what you are dealing with! I > | thought I was totally insane and just falling apart, then things fell into > | place and got my Dx…. not much improvement – but it is nice to know the > | face/name of the enemy. > | > | > | Leslie > | discombobulated thoughts of an adelpated mind. > | > | > | "Barbara Petty" <bwpe…@att.net> wrote in message > | news:Xzsi8.24131$106.2005426@bgtnsc05-news.ops.worldnet.att.net… > | > Glad you found your way back here :) > | > Many of us here have the CNS problems. > | > Aint it the pits sometimes? ha > | > When in a flare, I mix words up, and forget what I am saying even in the > | > middle of a conversation, Can’t remember the correct words, or what I am > | > doing even. ha! Poor Pitiful me…. > | > > | > Although sometimes mixing up words can make for a "funny" conversation. > | > For instance when I tell the g’kids to put their dirty clothes in the > | > dishwasher…….ha > | > Keeping a good sense of humor about things seems to be a big help……. > | > > | > Now that you found your way back……stick around…. > | > barbtoo > | > east tennessee > | > > | > > | > |
Response:
Hello Laura, and welcome. I am new here, but need to come more often because these folks are a link to what ails me and they make me laugh. I have SLE, but do have scrambled words and clumsiness that is a nuisance…. It does help to simply know what you are dealing with! I thought I was totally insane and just falling apart, then things fell into place and got my Dx…. not much improvement – but it is nice to know the face/name of the enemy. Leslie discombobulated thoughts of an adelpated mind. "Barbara Petty" <bwpe…@att.net> wrote in message
news:Xzsi8.24131$106.2005426@bgtnsc05-news.ops.worldnet.att.net… – Hide quoted text — Show quoted text -> Glad you found your way back here :) > Many of us here have the CNS problems. > Aint it the pits sometimes? ha > When in a flare, I mix words up, and forget what I am saying even in the > middle of a conversation, Can’t remember the correct words, or what I am > doing even. ha! Poor Pitiful me…. > Although sometimes mixing up words can make for a "funny" conversation. > For instance when I tell the g’kids to put their dirty clothes in the > dishwasher…….ha > Keeping a good sense of humor about things seems to be a big help……. > Now that you found your way back……stick around…. > barbtoo > east tennessee
Response:
Don’t you mean the 1000 faces of the enemy?? — Shelagh at ‘Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Lupus Information and Support Contact for Everyone. "Chaos Hill" <mrsmu…@hotmail.com> wrote in message
news:u8kq2rkl9n1obf@corp.supernews.com… | Hello Laura, and welcome. I am new here, but need to come more often because | these folks are a link to what ails me and they make me laugh. | I have SLE, but do have scrambled words and clumsiness that is a | nuisance…. It does help to simply know what you are dealing with! I | thought I was totally insane and just falling apart, then things fell into | place and got my Dx…. not much improvement – but it is nice to know the | face/name of the enemy. | | | Leslie | discombobulated thoughts of an adelpated mind. | | | "Barbara Petty" <bwpe…@att.net> wrote in message | news:Xzsi8.24131$106.2005426@bgtnsc05-news.ops.worldnet.att.net… | > Glad you found your way back here :) | > Many of us here have the CNS problems. | > Aint it the pits sometimes? ha | > When in a flare, I mix words up, and forget what I am saying even in the | > middle of a conversation, Can’t remember the correct words, or what I am | > doing even. ha! Poor Pitiful me…. | > | > Although sometimes mixing up words can make for a "funny" conversation. | > For instance when I tell the g’kids to put their dirty clothes in the | > dishwasher…….ha | > Keeping a good sense of humor about things seems to be a big help……. | > | > Now that you found your way back……stick around…. | > barbtoo | > east tennessee | > | > | |
Response:
Glad you found your way back here :) Many of us here have the CNS problems. Aint it the pits sometimes? ha When in a flare, I mix words up, and forget what I am saying even in the middle of a conversation, Can’t remember the correct words, or what I am doing even. ha! Poor Pitiful me…. Although sometimes mixing up words can make for a "funny" conversation. For instance when I tell the g’kids to put their dirty clothes in the dishwasher…….ha Keeping a good sense of humor about things seems to be a big help……. Now that you found your way back……stick around…. barbtoo east tennessee
Response:
Hi Laura, Welcome back. I am fairly new here, so we likely haven’t met. I live in Saskatchewan. I complain about the cold weather. It is -29 here this morning. I am sure the rest of the group just roll their eyes because they get tired of me whining about it. I have CNS involvement with my lupus. I was tested for MS too. I do have some neurological deficite even when I am "well." When I am in a flare I get weak, poorly co-ordinated, and suffer from hallucinations. I have to think through even simple tasks. I think that is the worst part of my lupus. There are others here who also have CNS problems. They will talk to you about it too. How does it present itself in your case? Talk to us often. I find the group helps me a lot. It is the only place that I feel free to discuss anything that is on my mind. We have fun too. BJ-freezing in Canada–Whine, whine. "Laura Roseboom" <roseb…@in-tch.com> wrote in message
news:3C89A9F9.72099BC6@in-tch.com… – Hide quoted text — Show quoted text -> Hi everyone, > Its been a long time since I have posted here….a year or more. I had a > tough time finding you when I was using AOL so I am really happy that I > got irritated with them and switched servers. > Anyways, I am a 34 year old woman with CNS Lupus but I am still trying > to figure out what exactly that is. I spent 4 years being treated > primarily for MS and lupus as a secondary disease. The doctors had a pow > wow last fall, ran a bunch of tests and found out that we spent a ton of > money on medications that did nothing to help me. On the positive side > at least I finally know what I am faced with. > I look forward to getting to know all of you and forming a support > foundation. > Laura
Response:
Hi everyone, Its been a long time since I have posted here….a year or more. I had a tough time finding you when I was using AOL so I am really happy that I got irritated with them and switched servers. Anyways, I am a 34 year old woman with CNS Lupus but I am still trying to figure out what exactly that is. I spent 4 years being treated primarily for MS and lupus as a secondary disease. The doctors had a pow wow last fall, ran a bunch of tests and found out that we spent a ton of money on medications that did nothing to help me. On the positive side at least I finally know what I am faced with. I look forward to getting to know all of you and forming a support foundation. Laura
Response:
Hi Laura: I’m glad you found your way back to everyone here. At least now knowing what you have you can continue on with treatment. I can’t help you out with CNS Lupus. I’m 27 and I have Lupus Anticoagulant(blood disease). I pop in and out and try and give support when I can. I don’t have a lot of information about Lupus, but there are a lot of people here that will offer support and help. Lorie
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