Re: Newbie offers column for your approval

[Guest guest]

Gloria, I enjoyed reading your column on Lupus very much. Thank you for sharing. Loving hugs, MM

[Guest guest]

Gloria, I enjoyed reading your column on Lupus very much. Thank you for sharing. Loving hugs, MM

[Guest guest]

Gloria, I enjoyed reading your column on Lupus very much. Thank you for sharing. Loving hugs, MM

[Guest guest]

Hi Gloria,

I enjoyed your column .......you are in a position to bring more attention to the raveges of Lupus .....and I hope you continue to do so.......We need all the attention we can get......for research funding ...and just to let the general public know that Lupus is a real disease .....and not all in our heads......

Let them know that next time they see someone with a` Red mask of 'The Wolf 'on their face...... or the notorious `Fat deposits '....caused by long time use of Steroids needed to fight the disease......This may be a person suffering from Lupus.......not just an overweight person who doesn't care about his or her appearance......and look more at the person inside with a little more understanding and compassion.

Keep up the good work......and I ,for one would love to read more of your columns that you usually do......We need the humor.......Please share.

Newbie offers column for your approval

I realize this is kind of long but I thought you might like to see it as a way of getting to know me a little better. As I said in my intro, I am a freelance writer and have had a column as well in my town's little paper for the past 8 years. Recently I wrote this one. Hope no one is offended by the levity, I usually write a lot of humor, though this one was toned down a bit.Gloria(From my monthly column called My Front Porch)Up until recently, Lupus has not been what you'd call a highprofile disease. You probably haven't seen any fundraising telethons orhad someone call you or come to your door collecting and my reasoning for this is, the name. Lupus. It sounds goofy. Like it ought to be spelled Loopus. And saying the complete term is too much of a mouthful, Systemic Lupus Erythematosis. Go ahead, try it. I'veeven heard medical professionals mispronounce it.But the derivation of the words is interesting. Lupus comes from the Latin meaning wolf, signifying the ravaging effects the disease can have on a body. And erythematosis, meaning redness, for the bright red butterfly-shaped rash that some get across the bridge of the nose. One story goes that the rash resembles a wolf's bite. But where ever the names come from, you have to admit, Lupus is a goofy word.This is the kind of stuff I think about and jot down while I do my time in the waiting room of my doctor's office. I'm here formy check-up with the immunologist. These are good folks to see if you happen to have Lupus or some other disease of the autoimmune system. We're trying to get the pain in my joints and muscles undercontrol without resorting to the Big Gun medicines. Steroids or immuno-suppressants. So far, in my almost 20 years with Lupus, I have been able to manage the symptoms with the use of a drug that is primarily given to those unfortunate enough to contract malaria. Quinine basically. Seems some poor schmoe with Lupus was traveling in some mosquito-infested geography and came down with a ripping good case of malaria, as if having Lupus wasn't bad enough. Well, lo andbehold, after a while on quinine, the drug of choice for malaria, the aforementioned Schmoe's Lupus symptoms quieted down as well. Icould be wrong about some of the details of this amazing scientific find but the gist of it is pretty accurate.My original point was telling you that you probably have not heard too much about Lupus in the past. But that's changing. Iapplaud the members of the SUNY sorority that "looped the bear" onMain St. in Geneseo, NY as a fundraiser for Lupus research and awareness. Even though one disgruntled citizen thought it was in poor taste and said so in a cranky letter to the editor of one of our county papers.Lighten up, lady.You need some big names to bring any cause to the public's attention. Former New York Yankee, Tim Raines has spoken out as someone who is living with Lupus. In an interview he gave to The Miami Herald, he talked about never having heard of Lupus before his diagnosis in 1999. My introduction was similar. After ten years of doctor after doctor the proper tests were finally conducted. My physician walked into the exam room where I sat in my lovely paper outfit, announced in monotone that I had SLE, handed me a pamphlet with some cheery title like, "So Now That You Have Lupus!",gave me my paperwork and told me to see the receptionist. All this as he was turning to leave. Fortunately, he was soon to retire (I suspect he had "retired" months before) and was replaced by someone muchmore sympathetic to my cause. I had to call the 1-800 number on the bottom of the pamphlet to find out what Lupus was. I had never heard of it before either.In the past 20 years I have seen great advances in most of the well-known diseases and illnesses. But research and awareness in the area of Lupus and its companion diseases, sometimes known as orphan diseases because they have no supporters or advocates, has lagged behind. Until the last few years, that is. I recall one episode of ER that dealt with Lupus and I'm sure that that had something todo with one of the main characters having a relative, in real life, who suffered from it.So I hope you will begin to see this goofy word, Lupus, more often and respond when asked to support its research causes. Over the years the motto for Systemic Lupus Erythematosis has been"Someone You Know Has Lupus". Now you know one more.©Gloria Slater. 2002"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies