Walk for Lupus Now 2011

It’s official! I’ve completed my first ever 5K walk!!  Naturally, I’m a bit knackered after all that but not from the walking itself. No, I had to go and be a smartypants and walk the whole thing barefoot. If it was all soft dirt or grass, no prob. But it was a paved trail of concrete, albeit cleared of most debris that might hinder wheelchairs, a bazillion pairs of feet and doggy paws. Now mind you, I did bring a pair of tennies and carried them in my makeshift backpack, and had a comfy pair of flip-flops on my feet because the temp was forecasted to be 90*F.  But for whatever reason (Divine perhaps?), I decided since I couldn’t walk a mile or three in my mother’s actual shoes (they were donated  after she passed away) then I would just do it barefoot and deal with the consequences later. Yeeeaaaaahhhh, probably wasn’t a brilliant idea…BUT…I don’t recall her complaining too much about having lupus so who am I to grouse about a few blisters I get walking in her memory? My dear family friend also suffers and was in hospital last time I spoke with her. Nothing with lupus is ever simple. If you get a cold, kidney infection or just about any kind of malaise, lupus will complicate it, sometimes seriously.

 Ouch!

Now here’s the sad part: lupus patients finally have a drug specifically developed to treat their disease (Benlysta) after waiting 52 years!! I don’t want to detract from other serious and debilitating diseases but to grow up with a parent having lupus and knowing there is no cure and no medication to treat it specifically…well, it just sucks. I mean, we all gotta deal with our own mortality, as well as our parents’ and that anything can happen at any time sans medical reasons. But to know that something eats away at the person who gave you life, potty trained you, wiped your nose when you had a cold and told you everything would be okay when you cried and there’s nothing…NOTHING you can do to help? That’s like a punch in the gut.

My intention here is not to get all weepy and “oh-hey-feel-sorry-for-me”. Quite the opposite. I want to bring attention to an auto-immune disorder that affects an estimated 1.5 million Americans, and at least five million people worldwide but doesn’t quite get the attention that many other diseases do. Systemic lupus erythematosus (SLE) is the most aggressive form of the disease and the one my mother was diagnosed as having. Other forms of lupus are discoid (which is cutaneous) and drug induced, which may not be as aggressive  but serious, nonetheless. While I don’t have data on lupus by comparison to other serious illnesses (i.e. HIV/AIDS, cancer, MS) I can tell you that it doesn’t get near the press it deserves, nor the funding for research that it should. And that’s why we walk…to raise awareness and money for research. Although I only have FM, and while it is a rheumatic condition, I’m genetically predisposed to lupus because my mother had it. About 5% of the children born to lupus patients will develop the illness. Doesn’t seem like much but I sure as heck don’t want to be in that 5%.

In relating all this to you, I’m going to post a picture of me and my mom about 7 mos. before she passed away. My husband, son and I had driven from Texas to Missouri to visit and it happened to be around Mother’s Day, in May of 2001. Though she knew her body would give out due to complications of her illness, I had a feeling when I left there that I would never see her again. Well, that and she told me one of the family secrets I’d always wondered about but never asked and we covered every subject under the sun. She also asked me if I would deliver her eulogy when it was time. Wow…daunting. Of course, I said yes.

Not too long after we returned to Texas from our visit (end of September maybe?), my eldest brother called and told me that mom was in hospital. Apparently, her neighbor she visited with all the time, found her unconscious on her bathroom floor and called 911. I remember he was a really nice guy but mentally challenged, so he lived in the same subsidized housing complex as my mother. Her lupus had progressed to the point that she could no longer walk and was in one of those Hoveround things. I think we found out what made her pass out in her bathroom was pancreatitis (she was diabetic) and anyway, she was in hospital where she used to work but then had to be transported to another facility about an hour or so away in Joplin, MO.  I wanted to go see her there because I felt like it would be the last time…and it was.

But y’know what?? I NEVER missed an opportunity to tell her how much I loved her and apologized many times for being such a pain when I was little. LOL  Picking out a casket tore me up but oddly, I was at peace by the time we had the service. I didn’t cry one time reading the eulogy I wrote for her. I was just happy she didn’t have to hurt anymore.  I miss her just as much now as I did then, only is doesn’t hurt as bad. I’m at peace with her absence…bodily, anyway. She’s always with me in spirit.  : )

Below is a picture of me and my mom taken in May of 2001. (my cornrows and extension phase) If you look closely, you can see how lupus had ravaged her poor body. And yet she still smiled. That’s my mama!!

http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60

Please click on the link above and read about lupus and what you can do to help us. It would mean a great deal to me and all the other patients and their families if you could donate to help fund research or maybe volunteer at one of the many fundraising events at your local chapter of the Lupus Foundation of America, or in your country of origin. I thank you from the bottom of my heart!! Mmmmmuah!!!

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