Question:
I feel good all over after those warm and fuzzies that were sent my way. Truly! <G> Thank You. Why don’t I post more? Because a lot of the time, mentally constructing a response is exhausting if not near to impossible. Mostly, I wait and see if someone else has posted whatever info I might have to share and usually someone has. Judith knows, the same is true with conversation – if I’m tired or stressed – forget it! It seems as tho’ after about a half an hour, the synaspses just give up the ghost. Recently I took a friend out to lunch to cheer here up (Yeah, right <g>). Halfway thru the soup, my brain quit – I just couldn’t keep up, couldn’t process input, etc. Sweet person that she is, she just carried on but was reduced to "Read any good books lately?" (with worried look on her face). Me, the constant reader, could not think of a single book to respond about. Funny thing is I seeem to have complete memory of what she said, what I was thinking, etc. Anyone else relate to this?? Considering that my professional forte was writing, proofing, editing, this is one h*ll of a comedown! Today I’m coherent (I think – LOL); tomorrow – who knows? When you don’t hear from me, know that the fog is just too thick to poke my way through. I’m most likely fine otherwise – you know, normal for a mild lupie <g>. By the way, this is why I have so much trouble communicating with doctors – even so, they just think I’m nuts – "Lupus doesn’t affect the brain." (Any comment regarding this might cause the post to be rejected!) It’s wonderful to have a place where I feel at home even when I just lurk. Even if you don’t hear from me, know that I follow all the posts and have sent many a prayer. Let’s hear it for ASL!! Jackie
Response:
Hi Jackie, I saw your post, and just had to answer before I go on to other things. I do understand why you don’t post more often. My brain works, or doesn’t work, in much the same way as you describe. It makes it difficult to talk to doctors. Often I can’t even tell them what is wrong when they ask me. I am better now, but am terrible when I am in a flare. I can’t form simple sentences then. There is no way I could even remember how to turn the computer on, let along type anything. It is tough, and frustrating. I always keep in mind that there is no one here who would be critical of my wording. They would only be warm and fuzzy. So post if you feel you can, even if it is only to say hello. We all care. BJ-Sk, Canada "Jackie K." <lkolb…@earthlink.net> wrote in message
news:Y5p9a.3664$wJ1.383508@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I feel good all over after those warm and fuzzies that were sent my way. > Truly! <G> Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost. > Recently I took a friend out to lunch to cheer here up (Yeah, right > <g>). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this?? > Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie <g>. By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!) > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!! > Jackie
Response:
In article <Y5p9a.3664$wJ1.383…@newsread2.prod.itd.earthlink.net>, Jackie K. <lkolb…@earthlink.net> wrote [] > By the way, this is >why I have so much trouble communicating with doctors – >even so, they just think I’m nuts – "Lupus doesn’t affect the >brain."
Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm [in case anyone wonders - the reason it's 'faqshets' not 'faqsheets' is that my web system hates folder names longer than 8 characters 
] — Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!
Response:
Hi Jackie I understand what you mean bout the fog and I am just wondering , have any of those Drs. heard of central nervous system involvement with Lupus ?? Is what I have had for a while now I would think that falls under effecting the brain. You just type when you want to we are all glad to hear from you. Cindy W. – Hide quoted text — Show quoted text -"Jackie K." wrote: > I feel good all over after those warm and fuzzies that were sent my way. > Truly! <G> Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost. > Recently I took a friend out to lunch to cheer here up (Yeah, right > <g>). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this?? > Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie <g>. By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!) > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!! > Jackie
Response:
"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message
news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… > In article <Y5p9a.3664$wJ1.383…@newsread2.prod.itd.earthlink.net>, > Jackie K. <lkolb…@earthlink.net> wrote > [] > > By the way, this is > >why I have so much trouble communicating with doctors – > >even so, they just think I’m nuts – "Lupus doesn’t affect the > >brain." > Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm > [in case anyone wonders - the reason it's 'faqshets' not 'faqsheets' is > that my web system hates folder names longer than 8 characters ] > — > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!
I would but "You can’t trust what you read on the internet, you know." I might benefit from the fact that my doc left town – no other docs to take his patients. There’s a rural health clinic with PAs. They KNOW they don’t know it all!
Response:
"Ward" <jcwar…@earthlink.net> wrote in message
news:3E66ADA9.C0459876@earthlink.net… > Hi Jackie I understand what you mean bout the fog and I am just wondering , > have any of those Drs. heard of central nervous system involvement with Lupus > ?? Is what I have had for a while now I would think that falls under > effecting the brain.
Hi Cindy, I’m sure they have but for the most part, I think I’m just not sick enough (lucky, I know!) to be taken seriously. It’s just easier to assume that I’m an inarticulate old lady. It’s the same that they just ignore me when I tell them that I have to be careful when walking because when I get tired (doesn’t take much <g>) I trip because my right foot tends not to pick itself up properly. This is a small thing that I can watch out for – there’s probably nothing that they can do. It’s nothing new. What counts is that DH understands and could not be more helpful and patient – we are able to joke about it. ((((((cindy))))))))) Jackie
Response:
In article <b0B9a.4701$wJ1.487…@newsread2.prod.itd.earthlink.net>, Jackie K. <lkolb…@earthlink.net> wrote >"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message >news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… [ >> Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm [ >I would but "You can't trust what you read on the internet, you know." I >might benefit from the fact that my doc left town - no other >docs to take his patients. There's a rural health clinic with PAs. >They KNOW they don't know it all!
Good point - but neither can they say "if it's on the internet it is automatically false"! Point them also at who wrote it: "LUPUS UK acknowledges with gratitude the assistance of Dr Graham Hughes (St Thomas' Hospital, London) and Dr Caroline Gordon and colleagues (Queen Elizabeth Hospital, Birmingham) in the provision of clinical information towards the production of these fact sheets" (Ie, the top UK consultants wrote the words, the LupusUK office did the layout and production, and I scanned & proofread the printed sheets on to my site) -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!
Response:
In article <A0B9a.4704$wJ1.487…@newsread2.prod.itd.earthlink.net>, Jackie K. <lkolb…@earthlink.net> wrote [ >It's the same that >they just ignore me when I tell them that I have to be careful when >walking because when I get tired (doesn't take much <g>) I trip >because my right foot tends not to pick itself up properly.
Small world - my wife (it's her who has the lupus) has the same problem - and the same lack of answer! -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!
Response:
On Wed, 05 Mar 2003 15:55:36 GMT, "Jackie K." <lkolb…@earthlink.net> wrote: >you know, normal for a mild lupie <g>. By the way, this is >why I have so much trouble communicating with doctors – >even so, they just think I’m nuts – "Lupus doesn’t affect the >brain." (Any comment regarding this might cause the post to be rejected!)
I don’t understand how any doctor can say that to be honest. Lupus CNS is a well-known condition and in fact, "cognitive dysfunction" is one of the 11 major criteria used by the ACR to diagnose Lupus (#8 – Neurological Disorder). I’d recommend copying pages from Dr. Wallace’s book as well as the UK lupus faqsheets (which were not written by us lowly no-nothings but by a medical doctor), Pages 100-115 of the Lupus Book by Dr. Daniel Wallace, MD are about the effects on the nervous system due to lupus. largely about the CNS but also about the peripheral nervous system. If you can’t get a copy of this from your local library, let me know and I’ll be glad to copy those pages and send them to you so you can send them to your doctors. >It’s wonderful to have a place where I feel at home even when >I just lurk. Even if you don’t hear from me, know that I >follow all the posts and have sent many a prayer.
well, I’m glad you’re out there and glad you delurked for a bit. Take care and know that you are in my thoughts and prayers. kcat KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message
news:gXNoR5DcGyZ+EwtZ@kitzbuhel.demon.co.uk… > In article <A0B9a.4704$wJ1.487…@newsread2.prod.itd.earthlink.net>, > Jackie K. <lkolb…@earthlink.net> wrote > [ > >It's the same that > >they just ignore me when I tell them that I have to be careful when > >walking because when I get tired (doesn't take much <g>) I trip > >because my right foot tends not to pick itself up properly. > Small world - my wife (it's her who has the lupus) has the same problem > - and the same lack of answer! > -- > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!
I have no doubt that you are as helpful and understanding as my DH. She and I are lucky. Jackie (chair warmer in mountain hideaway <g>)
Response:
I couldn’t agree more. In fact, it was ASL and this info which convinced DH and me to make loooong journey to find a rheumy which resulted in diagnosis after many years of run around and I sincerely thank you. But consider this. I tried to get my local doc to just look at The Lupus Book, to see Dr. Wallace’s credentials. Offered to lend it to him so he could give me his opinion. He would not look at it. That was prediagnosis, but still….. I don’t get into town enough to know if he left voluntarily or was run out on a rail! Either way, he was the "best" (??) doc in town. Please don’t get me wrong, my life has definitely changed for the better, much better, since I found ASL and all the corresponding info. Your hard work and KC’s are invaluable. Thanks again! Jackie "Andy" <a…@kitzbuhel.demon.co.uk> wrote in message
news:qnoqNcDLFyZ+EwO7@kitzbuhel.demon.co.uk… > In article <b0B9a.4701$wJ1.487…@newsread2.prod.itd.earthlink.net>, > Jackie K. <lkolb…@earthlink.net> wrote > >"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message > >news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… > [ > >> Point them at
http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm - Hide quoted text -- Show quoted text -> [ > >I would but "You can't trust what you read on the internet, you know." I > >might benefit from the fact that my doc left town - no other > >docs to take his patients. There's a rural health clinic with PAs. > >They KNOW they don't know it all! > Good point - but neither can they say "if it's on the internet it is > automatically false"! Point them also at who wrote it: > "LUPUS UK acknowledges with gratitude the assistance of Dr Graham Hughes > (St Thomas' Hospital, London) and Dr Caroline Gordon and colleagues > (Queen Elizabeth Hospital, Birmingham) in the provision of clinical > information towards the production of these fact sheets" > (Ie, the top UK consultants wrote the words, the LupusUK office did the > layout and production, and I scanned & proofread the printed sheets on > to my site) > -- > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!
Response:
KC, I couldn’t agree more!!! Please see my response to Andy, posted a few minutes ago. And, thanks again for all your work, research, and sharing – as I said to Andy, it has changed my life. Humbly, Jackie "KC" <kca…@newsguy.com> wrote in message
news:va1f6vo1elvm1o8b6sbf5cnd8sq7d088d3@4ax.com… – Hide quoted text — Show quoted text -> On Wed, 05 Mar 2003 15:55:36 GMT, "Jackie K." <lkolb…@earthlink.net> > wrote: > >you know, normal for a mild lupie <g>. By the way, this is > >why I have so much trouble communicating with doctors – > >even so, they just think I’m nuts – "Lupus doesn’t affect the > >brain." (Any comment regarding this might cause the post to be rejected!) > I don’t understand how any doctor can say that to be honest. Lupus > CNS is a well-known condition and in fact, "cognitive dysfunction" is > one of the 11 major criteria used by the ACR to diagnose Lupus (#8 – > Neurological Disorder). I’d recommend copying pages from Dr. > Wallace’s book as well as the UK lupus faqsheets (which were not > written by us lowly no-nothings but by a medical doctor), Pages > 100-115 of the Lupus Book by Dr. Daniel Wallace, MD are about the > effects on the nervous system due to lupus. largely about the CNS but > also about the peripheral nervous system. If you can’t get a copy of > this from your local library, let me know and I’ll be glad to copy > those pages and send them to you so you can send them to your doctors. > >It’s wonderful to have a place where I feel at home even when > >I just lurk. Even if you don’t hear from me, know that I > >follow all the posts and have sent many a prayer. > well, I’m glad you’re out there and glad you delurked for a bit. Take > care and know that you are in my thoughts and prayers. > kcat > KCat – I am not a medical professional. The contents of this post are
based soley on my experiences and opinions – Hide quoted text — Show quoted text -> http://www.ghg.net/schwerpt/mypage.htm > http://www.ghg.net/schwerpt/aslfaq30.htm > ("`-”-/").___..–”"`-._ > (`6_ 6 ) `-. ( ).`-.__.’`) > (_Y_.)’ ._ ) `._ `. “-..-” > _..`–’_..-_/ /–’_.’ ,’ > (()),-” (()),’ (((.-’
Response:
OMG! Ditto! on the right foot ‘dropsy’ and tripping! What the heck is it! (btw, my right leg is and has always been weaker than the left too… any takers on that one?) — Hugs from Shelagh http://continue.to/lupus "Andy" <a…@kitzbuhel.demon.co.uk> wrote in message > > Small world – my wife (it’s her who has the lupus) has the same problem > – and the same lack of answer!
Jackie K. <lkolb…@earthlink.net> wrote – Hide quoted text — Show quoted text -> >It’s the same that > >they just ignore me when I tell them that I have to be careful when > >walking because when I get tired (doesn’t take much <g>) I trip > >because my right foot tends not to pick itself up properly.
Response:
"Jackie K." <lkolb…@earthlink.net> wrote in message
news:Y5p9a.3664$wJ1.383508@newsread2.prod.itd.earthlink.net… > I feel good all over after those warm and fuzzies that were sent my way. > Truly! <G> Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost.
You should have heard our conversation when both of us "fogged out". We must have sounded as if we were speaking a foreigh language. > Recently I took a friend out to lunch to cheer here up (Yeah, right > <g>). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this??
<Raises hand> > Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie <g>. By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!)
BTDT, totally understand > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!!
OK, but please post more often – even if it’s just to say hello.
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