Here we are once again... time for the 17th Annual Metro Beach Park Lupus Walk on Saturday, September 24, 2011!  Yes, I'm usually WAY on top of my fundraising page (in the past, its been up and active for 2 months before the event; unfortunately, this year has been a bit rougher and we've only got a week before the event.  HOWEVER, this site will be up and running for a few months after the event has concluded, so feel free to donate as you're able, even if you can't right now).

Because the economy is still tight, I don't expect anyone to "give until it hurts"; what I'd REALLY like anyone who knows me, is involved with this event, or knows anyone who has even heard of "lupus" take just a few minutes to understand what lupus is, and how it can be a lifechanging, and in some cases a life-threatening, disease that has no cure.

In the last year, those keeping up with lupus research know that for the first time in 60 years, there is a BRAND NEW TREATMENT FOR LUPUS!  It's fantastic for those with the most devastating symptoms of the disease - its also extraordinarily expensive, as its still considered an experimental drug, even though the FDA HAS OK'd it.  But that's another topic for another day.  Currently, we continue with the same medications we've had which are meant to either help with symptoms (e.g. joint pain, kidney failure, skin irritations, pain throughout the body, overwhelming fatigue, and many many more) or those medications meant to help shut the immune system down.

Lupus patients, like cancer patients or MS patients, need different treatments, depending on the severity of their symptoms and which organs or joints the illness has impacted.  They may no longer be able to drive, so they need rides to and from medical appointments; they may have difficulty with large or small muscle movements, so cleaning or cooking can be a challenge; they might be in constant pain, which is very wearing; they may  not be able to go out and do things as they once did, so they need understanding and friends who are willing to, as one of my friends says, "bring the party to you!"  Most of all, we need to know that whatever kind of support you can provide to us, you haven't forgotten us.

This year I also want to mention my friend, Donna, whose health has been ruined by lupus.  Although my disease has slowly progressed and each of the 7 years since I've been diagnosed have been worse, Donna's disease process is significantly worse than mine.  We were diagnosed at the same time (which is how we got to know each other), and we would commisurate with each other about symptoms, doctor's visits, how isolating the disease can be, how frustrating it is for our spouses and close family members, how terrible some of the side effects of our meds can be but how terrible the disease itself is when it goes unchecked.  A few years ago, Donna's disease went into overdrive.  We've both been hospitalized more times than anyone should have to be, and neither of our doctors like us to be in the hospital if we can help it as we are extremely at risk for catching WHATEVER is going around; Donna now has a visiting nurse so she can stay out of the hospital as much as is possible.  She gets around solely by wheelchair; her house has had to be reconfigured so that her wheelchair can get up the stairs and into the shower; she can do very little alone anymore.  There have been too many times when we've talked about wishing we could help each other more.  So I'm dedicating this year's walk to my friend, Donna.

Please, if you have the time or the means, please donate to the Michigan Lupus Alliance, or just come walk with us!  It's a fun day - bring the who family!

And if you have ANY questions about lupus in general, or my fight with lupus specifically, please just ask.