Lupus FAQ

Question:

I am willing to buy these bracelets and ship them if there are enough interested. The bracelets are similar to those that Lance Armstrong has made popular. Bracelets are 1$ and shipping wouldn’t not be over .50 If you are interested, let me know! Nicole — 3 of every 10 Americans Know Someone With Lupus Help find the cure.  www.lupus.org

Response:

I’m very interested. They didn’t say if the are a ribbon or if they are plastic. Do you know? Bev "Nicole H" <crimsonshedemonREM…@hotmail.com> wrote in message

news:ED5Dd.48843$Ew6.7642@twister.socal.rr.com… – Hide quoted text — Show quoted text -> I am willing to buy these bracelets and ship them if there are enough > interested. > The bracelets are similar to those that Lance Armstrong has made popular. > Bracelets are 1$ and shipping wouldn’t not be over .50 > If you are interested, let me know! > Nicole > — > 3 of every 10 Americans Know Someone With Lupus > Help find the cure.  www.lupus.org

Response:

I’m interested in a few, Nicole.— KCat For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network http://pagesperso.laposte.net/fpnet For Lupus Support and Info http://www.ghg.net/schwerpt/ASLFAQ/

Response:

In article <HffDd.11850$wi2.9…@newssvr11.news.prodigy.com>, KCat <kca…@sbcglobal.net> wrote >I’m interested in a few, Nicole.— >KCat

One for you, one for dawg, … — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

I’m guessing they are a form of rubber like the Lance Armstrong wristbands. "Beverley" <beverly.brow…@verizon.net> wrote in message

news:PReDd.26140$rL3.12304@trnddc03… – Hide quoted text — Show quoted text -> I’m very interested. They didn’t say if the are a ribbon or if they are > plastic. Do you know? > Bev > "Nicole H" <crimsonshedemonREM…@hotmail.com> wrote in message > news:ED5Dd.48843$Ew6.7642@twister.socal.rr.com… > > I am willing to buy these bracelets and ship them if there are enough > > interested. > > The bracelets are similar to those that Lance Armstrong has made popular. > > Bracelets are 1$ and shipping wouldn’t not be over .50 > > If you are interested, let me know! > > Nicole > > — > > 3 of every 10 Americans Know Someone With Lupus > > Help find the cure.  www.lupus.org

Response:

"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message

news:$o51tHWW7a3BFwCj@kitzbuhel.demon.co.uk… > One for you, one for dawg, …

Oh yeah – she’d love that – did I send you the pic of the "little devil" from Halloween?

Response:

I’d be interested in a few also.  Let us know if you get enough interest so we can get some money to you. Hugs, Sherry

Response:

On Thu, 06 Jan 2005 07:19:00 GMT, "Nicole H" <crimsonshedemonREM…@hotmail.com> wrote: >I am willing to buy these bracelets and ship them if there are enough >interested. >The bracelets are similar to those that Lance Armstrong has made popular. >Bracelets are 1$ and shipping wouldn’t not be over .50 >If you are interested, let me know! >Nicole

I would be very intrested in buying two. – Hide quoted text — Show quoted text ->>>—LDW—->

Response:

In article <lEjDd.12834$iC4.8…@newssvr30.news.prodigy.com>, KCat <kca…@sbcglobal.net> wrote >"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message >news:$o51tHWW7a3BFwCj@kitzbuhel.demon.co.uk… >> One for you, one for dawg, … >Oh yeah – she’d love that – did I send you the pic of the "little devil" >from Halloween?

Yup; and her-on-table. — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Hello….my daughter has Lupus and I would love to get 2 of the bracelets. Please let me know if you do this, and what to do next. I’m trying to get her to come to this site so she has someone in her situation to talk to.  You all seem so nice and friendly…and very helpful. Hopefully she will be along soon.  Thanks…… "Larry Walker" <larrydwal…@sbcglobal.net> wrote in message

news:9osrt0hufurkn5au0aibt748p3pnas6h1v@4ax.com… – Hide quoted text — Show quoted text -> On Thu, 06 Jan 2005 07:19:00 GMT, "Nicole H" > <crimsonshedemonREM…@hotmail.com> wrote: >>I am willing to buy these bracelets and ship them if there are enough >>interested. >>The bracelets are similar to those that Lance Armstrong has made popular. >>Bracelets are 1$ and shipping wouldn’t not be over .50 >>If you are interested, let me know! >>Nicole > I would be very intrested in buying two. >>>>—LDW—->

Response:

I am sorry to hear that your daughter has lupus. Tell her that she is most welcome to talk to us when she feels ready to do so. I have found that being here has helped me a lot. It took quite a while though, until I came forward and joined in the conversation. I just read the post to get a feel for things. I wish her all the best. It must be hard for you too. We worry so about our children. BJ-Sk. Canada "Pic" <jcni…@cbpu.com> wrote in message

news:41e21f85$0$12737$9a6e19ea@news.newshosting.com… – Hide quoted text — Show quoted text -> Hello….my daughter has Lupus and I would love to get 2 of the bracelets. > Please let me know if you do this, and what to do next. > I’m trying to get her to come to this site so she has someone in her > situation to talk to.  You all seem so nice and friendly…and very helpful. > Hopefully she will be along soon.  Thanks…… > "Larry Walker" <larrydwal…@sbcglobal.net> wrote in message > news:9osrt0hufurkn5au0aibt748p3pnas6h1v@4ax.com… > > On Thu, 06 Jan 2005 07:19:00 GMT, "Nicole H" > > <crimsonshedemonREM…@hotmail.com> wrote: > >>I am willing to buy these bracelets and ship them if there are enough > >>interested. > >>The bracelets are similar to those that Lance Armstrong has made popular. > >>Bracelets are 1$ and shipping wouldn’t not be over .50 > >>If you are interested, let me know! > >>Nicole > > I would be very intrested in buying two. > >>>>—LDW—->

Response:

On Thu, 06 Jan 2005 07:19:00 GMT, Nicole H wrote: > I am willing to buy these bracelets and ship them if there are enough > interested. > The bracelets are similar to those that Lance Armstrong has made popular. > Bracelets are 1$ and shipping wouldn’t not be over .50 > If you are interested, let me know! > Nicole

I would like 2 of these also. Vicki mcsegal at mchsi dot com

Response:

Hi BJ…gave my daughter the newsgroup addy, and she will be here shortly I’m sure…she was so excited….thanks for your thoughts and concern….I appreciate it!  Pic "BJ" <B…@sk.nojunk.ca> wrote in message

news:10u558rm088pne1@corp.supernews.com… – Hide quoted text — Show quoted text ->I am sorry to hear that your daughter has lupus. Tell her that she is most > welcome to talk to us when she feels ready to do so. I have found that > being > here has helped me a lot. It took quite a while though, until I came > forward > and joined in the conversation. I just read the post to get a feel for > things. I wish her all the best. It must be hard for you too. We worry so > about our children. > BJ-Sk. Canada > "Pic" <jcni…@cbpu.com> wrote in message > news:41e21f85$0$12737$9a6e19ea@news.newshosting.com… >> Hello….my daughter has Lupus and I would love to get 2 of the >> bracelets. >> Please let me know if you do this, and what to do next. >> I’m trying to get her to come to this site so she has someone in her >> situation to talk to.  You all seem so nice and friendly…and very > helpful. >> Hopefully she will be along soon.  Thanks…… >> "Larry Walker" <larrydwal…@sbcglobal.net> wrote in message >> news:9osrt0hufurkn5au0aibt748p3pnas6h1v@4ax.com… >> > On Thu, 06 Jan 2005 07:19:00 GMT, "Nicole H" >> > <crimsonshedemonREM…@hotmail.com> wrote: >> >>I am willing to buy these bracelets and ship them if there are enough >> >>interested. >> >>The bracelets are similar to those that Lance Armstrong has made > popular. >> >>Bracelets are 1$ and shipping wouldn’t not be over .50 >> >>If you are interested, let me know! >> >>Nicole >> > I would be very intrested in buying two. >> >>>>—LDW—->

Response:

I guess I should have at least 2 bands. ( I just broke my favorite bracelet and beads went everywhere!!) Guess I’m a little rough on things. Bev "Nicole H" <crimsonshedemonREM…@hotmail.com> wrote in message

news:QCjDd.51734$nP1.49717@twister.socal.rr.com… – Hide quoted text — Show quoted text -> I’m guessing they are a form of rubber like the Lance Armstrong wristbands. > "Beverley" <beverly.brow…@verizon.net> wrote in message > news:PReDd.26140$rL3.12304@trnddc03… > > I’m very interested. They didn’t say if the are a ribbon or if they are > > plastic. Do you know? > > Bev > > "Nicole H" <crimsonshedemonREM…@hotmail.com> wrote in message > > news:ED5Dd.48843$Ew6.7642@twister.socal.rr.com… > > > I am willing to buy these bracelets and ship them if there are enough > > > interested. > > > The bracelets are similar to those that Lance Armstrong has made > popular. > > > Bracelets are 1$ and shipping wouldn’t not be over .50 > > > If you are interested, let me know! > > > Nicole > > > — > > > 3 of every 10 Americans Know Someone With Lupus > > > Help find the cure.  www.lupus.org

Response:

I would like 8 or 10 of these so let me know when and how to get you some $ for them. . . Thanks~HUGS~Aim — ‘Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind’ – Dr. Suess -:

Question:

I do not watch much tv or ER that often.  Sad to have missed the show. Wonder if there is a way of getting copies.  Having a ton of doctors is certainly a pain.  No one seems to know what the other is doing.  Wish they would reincarnate Marcus Welby. Not so long ago they had a couple charity events in Orlando.  A walkathon and a dinner.  Well the tickets for the dinner were $125 each which am sure no one with Lupus can truly afford anyways but am sure most would love to hear what spokespeople would have to say.  Why is it that folks with the illnesses, can not afford the luxury of the benefits they have.  It takes a ton of money just to join Lupus Foundation let alone attend functions. Would this be just foir the well people? Did not mean to rant but certainly must be something can help those who suffer from such illness but can not afford the big $$$ it costs to join in. Forgive me for getting off track.  Just seem to know more poor folks then I do rich ones this holiday season.  Am speaking monetary and not riches of the heart. I think we all have the ultimate gift! Happy Blessed Holidays! Always, ..

Question:

Notice, your new LUPUS NOW magazine is out.  In that magazine there is a notice for Master Spas. NOW if you are in the area of a dealer, they are helping the Lupus Foundation of America out.  IF you purchase a rubber duck, YES rubber duck, all proceeds will go to the LFA.  THey are trying to raise $100,000. for the fight against lupus. if you want to find your nearest dealer? www.masterspas.com and  click on find a dealer in your area. Thank you all for your help in the fight against lupus. janers

Response:

"janers" <rojak…@bright.net> wrote in message

news:Y5ednT_EbNt-8krdRVn-sw@bright.net… – Hide quoted text — Show quoted text -> Notice, your new LUPUS NOW magazine is out.  In that magazine there is a > notice for Master Spas. > NOW if you are in the area of a dealer, they are helping the Lupus > Foundation of America out.  IF you purchase a rubber duck, YES rubber duck, > all proceeds will go to the LFA.  THey are trying to raise $100,000. for > the fight against lupus. > if you want to find your nearest dealer? > www.masterspas.com and  click on find a dealer in your area. > Thank you all for your help in the fight against lupus. > janers

Hi Janers! I could use a rubber duck! For what I don’t know, but I’ll think of something! lol How are you doing by the way? Have you gotten those headaches under control yet? Hoping for the best for you, Z

Response:

Hello Gary No the headaches are still with me but not as often.  I had to have two more injections of cortisone and xylocaine, into the back of the head. Apparantly the neuritis LOVES to attack this area then crawl up over the head.’ Gee ya think I could find something that would be "NICE" for me crawling LOL. How  you doing? and the rubber duck?  Attach it to your golf clubs and you will smile every time you pull out that "putter"   hahahahaha just me janers

Response:

> How  you doing? > and the rubber duck?  Attach it to your golf clubs and you will smile every > time you pull out that "putter"   hahahahaha > just me > janers

Hi Janers, Don’t think too many of us would do well crawling anymore, you may have to look elsewhere! I’m doing ok. Cut back on the lexapro to 15mg and am doing much better with it. 20mg was zombying me out. I’m still off all my pain meds most of the time. Tolerance has gone way up. I still have pain, but I don’t pay as much attention to it. The nerve block in my neck did help some. I still have a problem for a couple of days after I play golf. I think it is caused by a little extra inflammation on the nerves at the spine. It does pass though. Went for a follow-up on the nerve block and the pain clinic still had not recvd the final report from the neurologist appt on May 16. Called today and found they sent the report to my pcp instead of the pain clinic.  So they are sending again today. I’m curious to see it. I saw the prelim at the last appt. and my left arm which is by far the worst wasn’t even mentioned and he recommended a rt side block. wrong. So we shall see. Mike is gone to Scout camp this week and I just can’t imagine what to do with myself! hahahaha That gallivanting around sure gets tiring! I’m not in shape for it anymore. I will be by the time he returns, but then…. Have a good one, Z

Response:

Janers, i hope your headaches are doing better by now. I hope other things are going well for you too. Hugs and love to you. — Love and hugs to all Good thoughts coming your way too. Squirrely Jo "janers" <rojak…@bright.net> wrote in message

news:HsidnS22x-vEwUXdRVn-gw@bright.net… – Hide quoted text — Show quoted text -> Hello Gary > No the headaches are still with me but not as often.  I had to have two > more injections of cortisone and xylocaine, into the back of the head. > Apparantly the neuritis LOVES to attack this area then crawl up over the > head.’ > Gee ya think I could find something that would be "NICE" for me crawling > LOL. > How  you doing? > and the rubber duck?  Attach it to your golf clubs and you will smile every > time you pull out that "putter"   hahahahaha > just me > janers

Response:

Question:

Did you guys get your new magazine called Lupus Now sent out by the LFA? It is awesome and very well done.  It has pictures and stuff for the public as well as professional people. If you are a member of the LFA and  or your chapter, you get this magazine. IF you have not gotten it, contact your chapter or www.lupusnow.org There should be an introductory offer for the first issue Free but if not, then join the LFA and you get this magazine with it.  It is well worth the 25.00 a year to join, just getting these issues and keeping updated in progress that is going on around us. You can also call 202-349-115 the LFA in Washington DC.  If you are international, and I believe that is for our Canadian and Australian friends LOL, or anyone else not in the USA, it will cost 35.00 american money. Like I said it is great, and I can’t believe the exposure this is going to get for lupus patients.  Oh and there are articles from Dr Wallace in there and many others thanks much janers

Response:

Janers, Thanks so much for the info.  I belong to the Lupus Foundation, but didn’t get my copy.  I’m going to call on Monday! Gretchen

Response:

Question:

Hi! I am in the process of creating a website that will have several links to useful sites about Lupus. (a databank of organizations, information, research, netowrking, and support groups) I was wondering if anyone had any favorites they wanted to share. Email me with the link and a brief description or post it here. Thanks! Also, if you are interested in assisting with the research and write ups email me at lupus.onl…@verizon.net

Response:

Hi:   I am new to this.  I am the past president of my local chapter Lupus Foundation of America. I am also the editor of our newsletter.  I have quite a few website addresses that I would love to share. "Lupus.online" <lupus.onl…@verizon.net> wrote in message

news:530Na.15136$n%5.9030@nwrddc02.gnilink.net… – Hide quoted text — Show quoted text -> Hi! > I am in the process of creating a website that will have several links to > useful sites about Lupus. (a databank of organizations, information, > research, netowrking, and support groups) > I was wondering if anyone had any favorites they wanted to share. Email me > with the link and a brief description or post it here. > Thanks! > Also, if you are interested in assisting with the research and write ups > email me at lupus.onl…@verizon.net

Response:

Question:

Anyone heard of this? My gastro  dr has this on the endo report from last friday. It says consider canasa based on biopsies just curious. Cindy W.

Response:

Lupus wrote: > Anyone heard of this? > My gastro  dr has this on the endo report from last friday. > It says consider canasa based on biopsies > just curious. > Cindy W.

Hi Cindy.  I googled "canasa" + GI and found that it is a medicine used for ulcerative colitis. Found this link via google (Crohn’s and colitis foundation of america): http://www.ccfa.org/news/previous/news0427.htm HTH -Sharon — Clear your mind, relax and float downstream.

Response:

Cindy, I was reading the subject line and thought of Cards. Ha Ha . Seriously, no I haven’t heard of it, but I bet J will hook you up. She amazes me.  Thanks J for all your help.Is J a she? I am sorry that I don’t know the answer, I try to put faces on everyone, but she or he is so full of knowledge, I think of J as a wonder. "Lupus" <wish…@earthlink.net> wrote in message

news:3D460827.A3F81F3B@earthlink.net… – Hide quoted text — Show quoted text -> Anyone heard of this? > My gastro  dr has this on the endo report from last friday. > It says consider canasa based on biopsies > just curious. > Cindy W.

Response:

Thanks guys I found some info this morning my computer was tired last night and would not go anywhere. I found same stuff and I remember her say that it was suppository I was a little groggy. It does sound like a card game I laughed at that one. My mom and her sisters use to play it thanks again Cindy W – Hide quoted text — Show quoted text -Cindy wrote: > Cindy, I was reading the subject line and thought of Cards. Ha Ha . > Seriously, no I haven’t heard of it, but I bet J will hook you up. She > amazes me.  Thanks J for all your help.Is J a she? I am sorry that I don’t > know the answer, I try to put faces on everyone, but she or he is so full of > knowledge, I think of J as a wonder. > "Lupus" <wish…@earthlink.net> wrote in message > news:3D460827.A3F81F3B@earthlink.net… > > Anyone heard of this? > > My gastro  dr has this on the endo report from last friday. > > It says consider canasa based on biopsies > > just curious. > > Cindy W.

Response:

She, tall, blonde bombshell, yeah right ! <g> (before I got sick and/or maybe if I bothered with makeup and trying harder) Here’s the only Canasa I could find at Medline http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202351.html Hugs J PS You all amaze me too ! – Hide quoted text — Show quoted text -Cindy wrote: > Cindy, I was reading the subject line and thought of Cards. Ha Ha . > Seriously, no I haven’t heard of it, but I bet J will hook you up. She > amazes me.  Thanks J for all your help.Is J a she? I am sorry that I don’t > know the answer, I try to put faces on everyone, but she or he is so full of > knowledge, I think of J as a wonder.

Response:

Question:

Does everyone know about the Lupus Foundation Medical card.?????? If you are a member of the LUPUS foundation, and I am sure most of you are ""RIGHT?"   WELL this is an advantage for those of you in need of some help. You can save up to 20-50% some places. Free to all Lupus Foundation Members Savings on brand names and generic drugs Over 19,000 walk in pharmacies nationally Over 8,000 vision care providers Over 19,000 dental care locations No limits on purchase Discounts on all prescriptions for new and pre              existing conditions Quality monitoring to assure excellence Summary of all purchases and saving mailed to you quarterly Purchases charged to Visa, MCand Discover or bank debit card to assure low administrative costs and to complete transactions quickly Toll free customers service hotline. To activate your personal card now, call toll free 1=800-656-4566 Now "I" copied this from my Lupus  Friend News letter from my Chapter in North west Ohio. I have not called this number but intend to do so tomorrow. I have insurance card but am thinking YOU never know what this may help with. So Join your LUPUS chapter Or the LUPUS Foundation nearest you..and call that number for some help here.. HOW IS THAT KCAT? "GET IN THE LOOP PEOPLE" HUGS janers

Response:

On Wed, 24 Apr 2002 16:36:55 -0400, "Janers" <rojak…@bright.net> wrote: >Does everyone know about the Lupus Foundation Medical card.?????? >If you are a member of the LUPUS foundation, and I am sure most of you >are ""RIGHT?"   WELL this is an advantage for those of you in need of >some help. >You can save up to 20-50% some places.

cooool.  no one told me about this – well, you just did but I mean no one at the chapter office. I’ll check into it. Texas Gulf Coast chapter was still not up and running last I checked. I don’t want to say anything rude about the person who is creating the site – she is a very nice person and I’m sure the end result will be great.  But I can’t understand who made the decision to take the old site down while building the new site (which can be done entirely offline).  This means that anyone trying to get to the TXGCC through the web can’t do so.  they don’t even have an email addy up for contact – no telephone # or anything. I suspect this was a "management" decision.  probably based on some thought that having a site up elsewhere was costing money while they worked on the new site through a different provider. ““ KCat the OT and Witchy.

Response:

Question:

Orange is the new " GET IN THE LOOP "  campaign to raise awarenss to lupus amoung the population.  It just is the new campaign. But the ribbon represents the LFA, from what I understand.  I wear both.  I have had doctors ask what the LOOP was and they are simply taken back with it.  NO one sees many around. I am glad I can explain what it is to them, cause that means IT GETS THEIR ATTENTION>…. janers

Response:

Part of the reason to moving to the loop, other than the new campaign, was the fact that a purple ribbon is used for Parkinsonism as well (or some such illness – sorry I may have the wrong one) so they wanted something that was obviously different from other awareness symbols. The orange may clash with your outfit, but it will definitely get attention.  It’s small too – not obnoxiously loud just obvious. I love the butterfly pins but they are more "decorative" so people don’t necessarily see them as readily. On Sun, 10 Feb 2002 11:38:05 -0500, "Janers" <rojak…@bright.net> wrote: – Hide quoted text — Show quoted text ->Orange is the new " GET IN THE LOOP "  campaign to raise awarenss to lupus amoung the >population.  It just is the new campaign. >But the ribbon represents the LFA, from what I understand.  I wear both.  I have had >doctors ask what the LOOP was and they are simply taken back with it.  NO one sees >many around. >I am glad I can explain what it is to them, cause that means IT GETS THEIR >ATTENTION>…. >janers

Response:

On 6 Feb 2002 23:03:53 -0800, l…@gw.retro.com (Lee Thompson-Herbert) wrote: >So those orange loop pins are bought through the LFA, yes?  I just >trawled through their site and found no mention of the pins.  Does >anyone know where I can buy a couple of the loop or the purple ribbon >pins online that doesn’t require PayPal?

well, I know you can get them from my chapter but you’d have to send a check or credit card info by mail.  Or, you could ask me to pick them up for you and I can send them to you via USPS.  Probably easiest that way – and cheapest. I’ll double check but we typically have loops, purple ribbons and these wonderful butterfly pins… not sure if they are all available right now but will contact them and ask. I’d send you to our chapter URL but they’ve decided to revamp and have taken the entire thing down (grrrrrrr…. should at least keep the old stuff up there as it still applies with very minor exceptions).

Response:

Where did you get the stickers for your mail? I would love some Nicole "

Response:

In article <t0u56usuf1mu6j62ackhohv7niroe77…@4ax.com>, KCat  <kcdoc…@ghg.net> wrote: >I’d send you to our chapter URL but they’ve decided to revamp and have >taken the entire thing down (grrrrrrr…. should at least keep the old >stuff up there as it still applies with very minor exceptions).

Sigh.  It seems _really_ stupid that the LFA site doesn’t have any of that stuff.  I’ve found a couple chapters that offer everything, but they all seem to use evil PayPal.  File it all under ‘YOU WOULD THINK’ — Lee M.Thompson-Herbert        l…@retro.com            KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

> I ordered my pins from the New Hampshire chapter, and I got to use a money

order.  (Got the shirt, too!) > http://communities.msn.com/Lupusmemorabilia/lupusmemorabilia.msnw > "Lee Thompson-Herbert" <l…@gw.retro.com> wrote in message

news:a3t8sp$hms$1@gw.retro.com… – Hide quoted text — Show quoted text -> > So those orange loop pins are bought through the LFA, yes?  I just > > trawled through their site and found no mention of the pins.  Does > > anyone know where I can buy a couple of the loop or the purple ribbon > > pins online that doesn’t require PayPal? > > — > > Lee M.Thompson-Herbert        l…@retro.com       KoX 1995, SP4 > > Head Muso, White Rats Morris > > Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. > > "A head-on collision between Morticia Adams and Martha Stewart"

Response:

What is the significance behind the Orange "O" and the Purple ribbon?  I have long through lupus was represented by the Purple ribbon.  Where does the Orange "O" come from? CP

Response:

Lupus awareness pins, the loop; can be purchased through www.lupusohio.org I don’t think you have to use pay pal, but if not then you have to send money first and wait and wait. That is how I got mine but used to order them from my own chapter, then they could not get any. I do have the purple LFA ribbon pin.  Don’t ask me where I got it. Oh have an email of a fella from Cleveland that sends me stuff from their site.  They have lots of thing too. I have stickers I put on all my outgoing mail.  It has the toll free number of the Lupus foundation .  call 1-800-558-0121 and ask them about pins and ribbons.  See what they come up with. It is worth a shot.  but sometimes the Ohio site is out of stock.  Man must be alot of them out there LOL Just call the above number and ask them about the items. also Cleveland is    www.lupuscleveland.org  with phone number being 1-888-665-8787 Most chapters give you a loop if you are a new member.  They usually cost around $4.00   so get your loop.  I never leave home with out mine, and I got them for all my family too. even grand daughter who had to explain to a bunch of teachers as well as 4th graders, just what lupus is, and she does know. hope to find you well today. janers If this info does not help you, let me know.  I have some ties to more information.

Response:

So those orange loop pins are bought through the LFA, yes?  I just trawled through their site and found no mention of the pins.  Does anyone know where I can buy a couple of the loop or the purple ribbon pins online that doesn’t require PayPal? — Lee M.Thompson-Herbert        l…@retro.com            KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

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Question:

HELLO SYDONNA, FIRST THINGS FIRST LET YOUR MOTHER SOAK WHAT SHES  LEARNED ABOUT SELF.I KNOW YOUR EXCITED AND THING THE WORST.I’VE HAD LUPUS FOR OVER 15 YEARS.AND ITS BEEN HARD THE PAIN THAT YOU GO THROUGH.THE CRYING,THE WHINEING.EMOTIONALLY ROLLIER COASTER SHE’LL BE GOING THRU.BE THERE FOR HER AND THE WORST THING ON THIS EARTH IS TO SAY MOM YOU LOOK FINE BECAUSE ITS IN HER BODY.SHE’LL NEED YOU MORE THEN EVER NOW.SO HANG  TUFF BECAUSE YOU ALL HVE A BUMPY ROAD AHEAD OF YOU!!!SHE’LL NEED YOU MORE THEN SHE’LL EVERY LET ON MAY GOD BLESS THRU THESE TRYING TIMES,dont forget the brain fog ************ BEVERLY. – Hide quoted text — Show quoted text -SyDonna Harris wrote: > Hello, my mother was recently diagnosed with Lupus and we really have not > idea what this is.  I have been researching on the internet and came accross > this site.  IF any one can give some info please relpy to my regular email > at sydo…@email.com.  Any help would be greatly appricated.  Sy’Donna

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Hello, my mother was recently diagnosed with Lupus and we really have not idea what this is.  I have been researching on the internet and came accross this site.  IF any one can give some info please relpy to my regular email at sydo…@email.com.  Any help would be greatly appricated.  Sy’Donna

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Kcat recently posted FAQs.  That’s probably an excellent place to start learning about lupus.   You might also want to get in touch with the Lupus Foundation of America http://internet-plaza.net/lupus/.  They can put you in touch with a local support group.  They also have many books and pamplets available, as well as extensive, reliable information on the web.   Speaking of books, I highly recommend THE LUPUS BOOK, 2nd ed., by Dr. Wallace. This book is probably the most extensive and informative book on lupus ever written for the layperson.  It’s often been referred to as "the lupus bible." It’s also endorsed by the Lupus Foundation.  There are other excellent books as well.  Be careful though to stick with recent publications as over the years there have been changes in therapy. prognosis, and basis understanding of lupus.   You might also check out these websites Lupus Around the World (ONE OF MY FAVORITES! Great search function, Ask a Doc, and support groups.) http://www.mtio.com/lupus About.com (Literally tons of information and links on many other topics as well.) http://lupus.about.com/health/lupus/ North East Lupus Group Homepage (Andy Taylor’s Page–one of the best lupus websites around.) http://www.kitzbuhel.demon.co.uk/lupus/index.htm Lupus Labs Explained http://www.mtio.com/lupus/lfalt1.htm There are many other good websites as well.  However, these are some of my top picks for those new to lupus.  I suggest you start with these before branching out.  When you do branch out, keep in mind that personal websites are more likely to contain errors.  The most reliable are usually those run by physicians, universities, major research institutions and national/international foundations or associations.  There is a lot of helpful information you can glean here too, just be aware that none of the information offered here is guaranteed to be accurate nor is it a substitute for consulting with a physician. Sandra

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Question:

I’m not sure where you live Jo but if there is a Publix there, ask the pharm to order it.  They order it here in Florida for my husband.  If that fails, I’ll be at Mayo Clinic on the 25th and could pick some up for you.  Email me.  DianeW

– Hide quoted text — Show quoted text – I’ll have to try these.  I’m getting tired of living like a vampire. — Jo Firey I have problems with sunscreens and have only been able to use two. Bain de Soil is one of them and the other I just found this year is made by Mayo Clinic. You should be able to get your pharm to order it for you. Its base is a cream called Vanicream and the sunscreen comes in 15 and 30 and is totally non allergenic.  Vanicream is a base that dermototogists use to compound meds. DianeW dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents I’m with you on that.  I’ve had a terrible time finding a sunscreen that I can tolerate.  I have only tried the special non-allergic ones. Particularly for my face.  Last week my daughter got me one from Clinique that I’ve used once without problems but haven’t given it a real trial yet. Also, for those that are sun sensitive due to meds or disease, does a block really do the trick?  I could swear I’ve had reactions even when using a block and sun poison without sunburn. — Jo Firey

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Thank you, Larry, I’ll do it. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

– Hide quoted text — Show quoted text – Ow, my face!!  Is there any way to function without going outside at all? My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww! Hie thee to a Walgreens.  Tell the druggist you want to buy a bottle of "ST-37."  It will cost you about $10.00 for a pint sized bottle of the stuff but it, as the druggist should agree, is the greatest treatment for sunburn on the planet.  Doesn’t sting, doesn’t stain sheets or clothing.  Is a wonderful antiseptic.  Susan and I wouldn’t be without a bottle of it in our medicine cabinet. — Be Well, Larry

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Y’know, I think you’re right. Even when I use sunscreen, I can get burned. I have used sunscreen since I was first diagnosed with rosacea a few eons ago. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

– Hide quoted text — Show quoted text – dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents I’m with you on that.  I’ve had a terrible time finding a sunscreen that I can tolerate.  I have only tried the special non-allergic ones. Particularly for my face.  Last week my daughter got me one from Clinique that I’ve used once without problems but haven’t given it a real trial yet. Also, for those that are sun sensitive due to meds or disease, does a block really do the trick?  I could swear I’ve had reactions even when using a block and sun poison without sunburn. — Jo Firey

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<hanging head Yes, ma’am. No, ma’am. I’ll remember, ma’am. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

– Hide quoted text — Show quoted text – Aloe’s great, yes.      Anytime there’s sun burn or sun poisoning around me, I always say the same thing. Baby Oil On, Asprin In. Baby Oil lubricates to stop the dry patches from iching, asprin eases the inflammation. They now have baby oil in gel form…but pure aloe is better. Sarah knows. <g Both Baby oil and aloe feel even nicer if chilled in the fridge, first.       BTDT haven’t ya, Dee Tee. Not gonna do dat no more, are ya, Dee Tee. " No, Rosie…not out in the sun for hours without a big hat or a huge beach umbrella, no way, not I."       Sorry yer goin’ thru it, Dee Tee. I learned the hard way, myself. Damaged Skin Hugs from Rosie — "If you wanna get it done, you gotta fight for yourself." — Meat Loaf, Bat Outta Hell II My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday. Get a bottle of aloe and put it on the spots.  It helps take the sting out heals it faster.  Even better, break off a piece of an aloe plant and use that. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

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LOL!! BIG Huge Gentle Hugs for Dee Tee from Rosie — "If you wanna get it done, you gotta fight for yourself." — Meat Loaf, Bat Outta Hell II

– Hide quoted text — Show quoted text – <hanging head Yes, ma’am. No, ma’am. I’ll remember, ma’am. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html Aloe’s great, yes.      Anytime there’s sun burn or sun poisoning around me, I always say the same thing. Baby Oil On, Asprin In. Baby Oil lubricates to stop the dry patches from iching, asprin eases the inflammation. They now have baby oil in gel form…but pure aloe is better. Sarah knows. <g Both Baby oil and aloe feel even nicer if chilled in the fridge, first.       BTDT haven’t ya, Dee Tee. Not gonna do dat no more, are ya, Dee Tee. " No, Rosie…not out in the sun for hours without a big hat or a huge beach umbrella, no way, not I."       Sorry yer goin’ thru it, Dee Tee. I learned the hard way, myself. Damaged Skin Hugs from Rosie — "If you wanna get it done, you gotta fight for yourself." — Meat Loaf, Bat Outta Hell II My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday. Get a bottle of aloe and put it on the spots.  It helps take the sting out heals it faster.  Even better, break off a piece of an aloe plant and use that. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

I’ll have to try these.  I’m getting tired of living like a vampire. — Jo Firey

– Hide quoted text — Show quoted text – I have problems with sunscreens and have only been able to use two.  Bain de Soil is one of them and the other I just found this year is made by Mayo Clinic. You should be able to get your pharm to order it for you. Its base is a cream called Vanicream and the sunscreen comes in 15 and 30 and is totally non allergenic.  Vanicream is a base that dermototogists use to compound meds. DianeW dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents I’m with you on that.  I’ve had a terrible time finding a sunscreen that I can tolerate.  I have only tried the special non-allergic ones. Particularly for my face.  Last week my daughter got me one from Clinique that I’ve used once without problems but haven’t given it a real trial yet. Also, for those that are sun sensitive due to meds or disease, does a block really do the trick?  I could swear I’ve had reactions even when using a block and sun poison without sunburn. — Jo Firey

Response:

{{{{{DeeTee}}}}},   Ughhhh…sunburn/poisoning are awful I know. A couple of aspirin will help take the ‘fever’ out of the skin. A cool soak in an oatmeal bath will help with the itchies. Aloe is wonderfully healing and soothing. Cool compresses soaked in Domesboro solution will help with itching, peeling and healing. Wish I could help more. Sending prayers and positive thoughts that you are feeling ‘normal’ again quickly!                                             Be well,  Patty *~A friend is someone who reaches out for your hand, and touches your heart.~*

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Diana Try plain natural yoghurt,  spread it on, let it dry and wash off gently.  It takes the stinging, burning, away, repeat as required.  Do not wear to work. (g) love Hildagh – Hide quoted text — Show quoted text – Ow, my face!!  Is there any way to function without going outside at all? My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday.  High SPF sun screen, thick moisturizers, it still burns, itches, and hurts. Whine Whine Whine Whine……   I guess the itching means some healing is taking place, but ….. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

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Diana Taggert-Keep your butt inside!!

Keep your face inside, too  IF you must go out, wear a  big wide brimmed hat.  It may not be a fashion statement, but could save you some grief. And see your doctor about it. Feel better soon sugar. Char "Remember, I’m pulling for ya’. We’re all in this together."  Red Green

  <<<<http://members.home.net/karensears<<<< – Hide quoted text — Show quoted text –

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*snort* wiping the monitor screen. Duckie [still muttering "do not wear it to work" ROFL] – Hide quoted text — Show quoted text – Diana Try plain natural yoghurt,  spread it on, let it dry and wash off gently.  It takes the stinging, burning, away, repeat as required.  Do not wear to work. (g) love Hildagh

Response:

I have problems with sunscreens and have only been able to use two.  Bain de Soil is one of them and the other I just found this year is made by Mayo Clinic. You should be able to get your pharm to order it for you. Its base is a cream called Vanicream and the sunscreen comes in 15 and 30 and is totally non allergenic.  Vanicream is a base that dermototogists use to compound meds. DianeW

– Hide quoted text — Show quoted text – dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents I’m with you on that.  I’ve had a terrible time finding a sunscreen that I can tolerate.  I have only tried the special non-allergic ones. Particularly for my face.  Last week my daughter got me one from Clinique that I’ve used once without problems but haven’t given it a real trial yet. Also, for those that are sun sensitive due to meds or disease, does a block really do the trick?  I could swear I’ve had reactions even when using a block and sun poison without sunburn. — Jo Firey

Response:

(((((DeeTee))))) hope you feel better soon. Please stay coved up. Sherry

Response:

Can you say big floppy brimmed hat? Duckie – Hide quoted text — Show quoted text – Ow, my face!!  Is there any way to function without going outside at all? My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday.  High SPF sun screen, thick moisturizers, it still burns, itches, and hurts. Whine Whine Whine Whine……   I guess the itching means some healing is taking place, but ….. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

Response:

Ow, my face!!  Is there any way to function without going outside at all? My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!

Hie thee to a Walgreens.  Tell the druggist you want to buy a bottle of "ST-37."  It will cost you about $10.00 for a pint sized bottle of the stuff but it, as the druggist should agree, is the greatest treatment for sunburn on the planet.  Doesn’t sting, doesn’t stain sheets or clothing.  Is a wonderful antiseptic.  Susan and I wouldn’t be without a bottle of it in our medicine cabinet. — Be Well, Larry

Response:

Dee Tee, I know what you mean, and found a thing that works real good.  Go to www.dermadoctor.com and look into the Total Block.  It makes a foundation for your loverly face and you can mix it to your skin tone.  Then they make a Sun Block that is clear and does not stain for the neck or for that matter use it on your pretty face too.  I use oil of olay first, smooth and then apply one of the other above.  It stops those nasty sun rays and patches from forming on your face or neck.  It is a little expensive, about $22.00 for 2 ounces but it is Total Block at 65 and I think it is great.  I have lupus and the rheumy told me about this stuff.  I know some people believe that suncreen or block over 30 is worthless,   I think not.  I should know being a red head, and with lupus that is 2 points not in my favor. You can also go to your search engine and put in Total Block…that would get you right into the main site to buy it also. So clear up that nasty itch and patches now then get some of this stuff. Plus wear a pretty hat. janers

Response:

Diana Taggert-Keep your butt inside!!  IF you must go out, wear a  big wide brimmed hat.  It may not be a fashion statement, but could save you some grief. And see your doctor about it. Feel better soon sugar. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents

Response:

dee tee, sun screen often makes my skin burn and sting as though i have a sunburn. that may be part of your problem. diane and her 2 cents

I’m with you on that.  I’ve had a terrible time finding a sunscreen that I can tolerate.  I have only tried the special non-allergic ones. Particularly for my face.  Last week my daughter got me one from Clinique that I’ve used once without problems but haven’t given it a real trial yet. Also, for those that are sun sensitive due to meds or disease, does a block really do the trick?  I could swear I’ve had reactions even when using a block and sun poison without sunburn. — Jo Firey

Response:

My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday.

Get a bottle of aloe and put it on the spots.  It helps take the sting out heals it faster.  Even better, break off a piece of an aloe plant and use that. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

Aloe’s great, yes.      Anytime there’s sun burn or sun poisoning around me, I always say the same thing. Baby Oil On, Asprin In. Baby Oil lubricates to stop the dry patches from iching, asprin eases the inflammation. They now have baby oil in gel form…but pure aloe is better. Sarah knows. <g Both Baby oil and aloe feel even nicer if chilled in the fridge, first.       BTDT haven’t ya, Dee Tee. Not gonna do dat no more, are ya, Dee Tee. " No, Rosie…not out in the sun for hours without a big hat or a huge beach umbrella, no way, not I."       Sorry yer goin’ thru it, Dee Tee. I learned the hard way, myself. Damaged Skin Hugs from Rosie — "If you wanna get it done, you gotta fight for yourself." — Meat Loaf, Bat Outta Hell II

– Hide quoted text — Show quoted text – My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday. Get a bottle of aloe and put it on the spots.  It helps take the sting out heals it faster.  Even better, break off a piece of an aloe plant and use that. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

Ow, my face!!  Is there any way to function without going outside at all? My sun poisoning is not healing fast enough for me. Every time I step outside in the daytime, owwwwwwww!  My nose and a dime-sized patch on each cheek and my forehead all have sun poisoning spots from last Saturday.  High SPF sun screen, thick moisturizers, it still burns, itches, and hurts. Whine Whine Whine Whine……   I guess the itching means some healing is taking place, but ….. — DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/DC/DC.html

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