I figure I should take a moment to tell a little about myself, my story and why I’m asking for your support on my Lupus Walk.
First, the facts. Lupus is a chronic, potentially life threatening autoimmune disease that can cause damage to virtually any organ in the body, especially the skin, joints, blood, and kidneys.
I’m a 37 year old female who has had Lupus for 21 of those years. My support of this cause started even earlier then that time because my Mother, Sandy, discovered she had Lupus when I was born. Until that time she was blissfully ignorant of the disease lurking in her body. I was an only child (or so I thought) and I grew up quickly because my childhood was filled with the trappings of the disease. Mom was sick, a lot. In the late 70’s and early 80’s (to champion my Mom’s cause) my Father became the President of the local chapter of Lupus Foundation. That entailed much travel to host local meetings, attend conferences and lobby congress. My Mom passed away in 1983 after fighting hard for nine years. It was eventually kidney failure that got her (caused by Lupus) but there were many more ailments that plagued her at the end.
Fast forward to me at 16, I was sitting on a porch talking with my friend (who’s now a priest that I still adore) and my nose started bleeding out of no where. We aren’t talking a trickle here… Prior to this I had issues with anemia, pneumonia and a few other kid illnesses (chicken pox, mono, etc). At that time I had been getting HUGE softball sized bruises from injuries I couldn’t remember, little red spots on my extremities (petechiae) and I was constantly tired. The next day I was hustled to the doctor to be told my platelets, which help your blood clot, were at 3,000. Here’s some perspective – in an adult, a normal count is about 150,000 to 450,000 platelets per microliter of blood.
Needless to say, everyone started freaking out around me because I could potentially bleed out at any moment. Bless their hearts, they didn’t hospitalize me (thank you Dr. Dravid) but they did begin pumping me so full of steroids I couldn’t see straight. This gave me a whole new appreciation for Mom because she suffered on steroids for ages. In the end, they called it ITP – idiopathic thrombocytopenic purpura which occurs when certain immune system cells produce antibodies against platelets. At that time, my ANA (anti-nuclear antibody) levels weren’t high enough to officially consider it Lupus but this is a symptom. This was just the beginning of my journey.
I was officially diagnosed with Lupus in my early 20’s and have had some serious flare ups over the years. Thankfully, I haven’t had to spend any time in the hospital. I have ITP (my platelet count usually hovers around 30,000 these days), rheumatoid arthritis, sun sensitivity, fatigue, etc… Yet as an adult, I have been very lucky all things considered. I remain un-medicated (partially by choice), my pain levels aren’t too bad most days but I don’t live an aggressive life either.
I like the The Spoon Theory by Christine Miserandino to explain the way Lupus makes me feel on a daily basis. Some days are better then others but I am constantly reminded of my limitations. This Walk allows me to do something for my cause without being too taxing. It’s a 5K and I have a team of family & friends who will join me on the big day which is wonderful! So that’s my story and why I support the Lupus Walk.
This disease has surrounded me for a lifetime and if I should be alive to see a cure or even better treatments I will jump for joy! You can help me reach my goal by making a donation online. Click on the link below and you will be taken to my personal donation page where you can make a secure online credit card donation. I set $500.00 as an “impossible goal” figuring there was no way I’d reach this amount yet I’m currently up to $420.00! The funds are going to The Lupus Foundation of America, Greater Cleveland Chapter. These funds will assist the chapter in achieving it’s mission to be the nation’s leading non profit voluntary health organization dedicated to finding the cause and cure for lupus. They also provide support and services to all people affected by lupus. These are also the same folks my Father led way back when… =)
Thank you for your support.
Donation Site:
http://walkforlupusnow.kintera.org/faf/donorReg/donorPledge.asp?ievent=460624&lis=0&kntae460624=B1EF1F1E6AEF41FA9761A2CBBFF439D8&supId=332960708 21 months ago