I’m Walking to End Lupus. Join Me? Support me?
I am often asked how and when I was diagnosed. There was no one test or appointment where it was clear. It was actually years of several doctors, confusing tests and lots of frustrations. I was 28 the first time I remember having unexplained symptoms. Over the years the symptoms would come and go (which I now understand as being in remission) until the day came about 10 years ago when I could barely walk, could not dress myself...and the fatigue was so severe. I was scared. It took all I could do get through a work day - which wasn't an option...I had to earn a living. Finally, having met my current rheumatologist, she gave me a drug (the one Trump said would cure COVID - which is didn't) hydroxychloroquine or plaquenil by name brand and my life suddenly changed. By itself, with some cortisone shots and occasional prednisone for breakthroughs, I did well. Until I wasn't doing well. It's been over a year since I started Arava and it has turned my life around! While not 100% I am "normal" most of the time. I started having a flare up a few weeks ago (can't imagine why with the stress of everything!) and I'm on prednisone to get over it...which...attracts the COVID virus. So I'm being extra careful these days. My doctor is worried it's not a flare up but breakthrough lupus...which means more or different medications. I'm hoping like heck that's not the case!
It's a hard thing to live with. People say "eat healthy" "get more sleep" "exercise more" or whatever else you can think of...trust me...if there was something I could do to end the way I feel I would! It's a far more complicated disease than it looks on the outside. So on the outside what you see...is what I let you see. You can't see inside my body to see the inflammation that exhausts me and threatens the functioning of my organs, nor do you see me struggle to hold a pen and have such a hard time writing that I can't even read my own writing, and you won't know that 2 days ago I could barely stand in the shower and had to get out and lay on the bed soaking wet until I could get the strength to go finish. But- that is all what lupus is. So when you think I am being lazy...it's what you don't see and don't understand...but I am finally at a point where, most of the time, I don't worry about what anyone else thinks. I try hard to do what I need to do. And I truly am wrapped in love and support by many people - my family and wonderful friends!
Every dollar helps us get closer to a cure or a treatment. There has been some recent progress which is so exciting! Did you know the only clinically approved drug to treat this fatal disease is aspirin? Yeah...we need your money. Can you imagine if they only approved treatment for cancer was aspirin??
Thanks for any support you can offer! I appreciate every amount, if it's $1.00 or $100.00! It all get's put to good use and I am more grateful than you know. There are so many good causes that need support, so even if you don't choose to support financially...wear a purple shirt and make a shout out for lupus awareness! That helps too!