(Julie is webmaster of The Lupie Bin, a worthy web information resource and a compassionate haven. She is a dedicated person and a precious gem in the chain that links us all together.)
LUPUS. What a long, strange trip it's been! The first time I heard the word Lupus was in 1987. I was 22 years old and taking three allergy shots twice a week in an effort to get control of my asthma-causing allergies. One day I just happened to mention to my allergist the amount of pain I was suffering. I've had pain since I was a child and just assumed it was 'normal'. But, this day, it caught the attention of my allergist and he suggested running a panel of lab tests.
At my follow-up appointment, I was stunned to learn that some of the testing had come back "positive", in particular the ANA (antinuclear antibody). The doctor said to me "I think you may have Lupus." Well, that just about floored me! The only person I had ever known with Lupus, a schoolmate's mother, had died young and suddenly!
This revelation started me on a path looking for the "right" doctor with the "right" answers and the "magic cure". Consequent tests all proved "negative" and the diagnosis was different with each doctor. I've heard everything from MS to fibromyalgia to depression to brain tumor!
Upon introduction to my local Lupus support group, I learned I was not alone in my symptoms. Here there were actually people who felt just like me - young and old. My current physician was a speaker at that first meeting. When I mentioned my symptoms to her, she was not at all surprised. It would still be several years of bouncing around from doctor to doctor before tests, symptoms and criteria confirmed Lupus.
Looking back to my adolescence, it is obvious now that Lupus may very well have been lurking in the shadows. The sudden and dramatic weight loss in high school after prolonged exposure to the sun. The days in bed, too weak to function, but not really "sick". The intense and unexplainable raised sunburn - I'd always been a tan sunbather before. And then there was always the rash on my face, looking more like "too much sun" rather than a "rash".
As the illness progressed, my social life plummeted. I felt that nobody would want to saddle themselves with a sick partner. I also found that people I thought were my friends quickly vanished when the going got tough. Boy, you sure find out fast who your true friends are in the face of illness!
Any idea of career aspirations suffered, too. Too sick to work full-time any longer in 1992, I started working part-time at the local hospital in data processing/reimbursement. September 1998 saw the end of my working life when I had to resort to disability in order to preserve what "energy" I had left.
Lupus has affected my central nervous system, making it difficult to function "normally" most days. Memory loss, headaches, irrational behavior, visual disturbances, increased intracranial pressure, neuropathy, and confusion are just a few of the symptoms I experience, along with the usual fatigue and pain of Lupus. Not to mention the effect the medications have - that's a whole other ball of wax! Nonetheless, I have hope for a cure in the future and, for myself, a return to better days. The Lupie Bin
was born February 2001 in an effort to help other lupies find the real lowdown on lupus and to get the sense that they are not alone. So many of the people, primarily women, that I get letters from tell me that they felt so alone in their disease until they happened upon The Lupie Bin.
Not only do these lupies feel alone, but are so hurt and disturbed by their friends and family members who do not understand lupus and label them "crazy"! They so often express to me their relief in knowing that they are not crazy and that they feel they have something tangible to show their loved ones, to help them to understand. This has been an amazing gift - one I could never have anticipated when first starting The Lupie Bin.
September 2003 saw the addition of The Lupie Bin's MSN Group
. This group was started after I received numerous letters from fellow lupies searching for pen-pals. Some wrote looking for a forum to connect with other folks living with lupus.
The membership is growing daily and the members are amazing. They support and understand each other, and in doing so give and receive strength. I am humbled to be able to provide a place where lupies can come together and share, teach, learn and connect! The Lupie Bin's MSN group is a moderated message board forum for individuals diagnosed with Lupus and is directly linked to The Lupie Bin website.
Living with lupus can feel like an isolated journey. Not everyone has unconditional support from friends and family. Here you will find understanding, comfort and friendship with fellow lupus survivors. Join us; learn and share with lupie "veterans" and "newbies" alike. To quote one of our amazing members "...What you are really doing is singing in a choir. Because although we may have symptoms at different times, we are all on the same song."
I do not spend as much time on The Lupie Bin as I would like, as it is a never-ending battle to keep the wolf at bay. But I dedicate what time I can (and what my brain and body allow) to keeping the site up-to-date and running smoothly. I appreciate so much the kind words from friends and fellow lupies who like the site and find it to be a source of information and help. After all, that is the foundation of The Lupie Bin - to inform, assist, and lend support.
©2004 Julie SilvaE-mail