As you may have noticed, I have not bombarded you with a million emails about the lupus walk this year. For those who have supported us year to year, this is a very rare occurance. You may even have been wondering if our family was even walking this year. I am walking. Team Christine IS walking. The walk is only 2 days away. I just had a hard time writing my "annual lupus walk support" letter this year. Everytime I stared at the computer screen, I didn't know what to say.. for once in my life I had no words! :)
As most of you know I was diagnosed with Systemic Lupus Erythematosus, SLE 20 years ago. Can you believe it has been 20 years!!!? I live it every day, and trust me even on my best day there is not a day that I forget I have lupus. Imagine that, every single day for 20 years taking medicine, or being aware of the little battle going on inside my body! I was diagnosed at the young age of 15 and I am now 35 years old. I have been through the teen years with lupus, prom, college, sorority life, a promising career, dating, getting married, having a baby, and yes, even divorce. Lupus ruined a marriage, Lupus gave me an extremly difficult pregnancy, and Lupus has taken away many special moments from me. More importantly, this year alone I have lived through watching 5 of my "online lupus support friends" die because of this horrible disease. I am one of the lucky ones who have found the newly discovered drug Benlysta helpful. It is the only lupus drug available to lupus patients. I have lost friends and family because they could not understand why I "didn't look sick", or seemed fine one day and had to cancel the next. I have lost weight, gained weight, lost hair, grew hair... but somehow inside I am still the kick ass rockstar women and amazing mom that you all know and love! (I guess the past few months I just seemed to forget that.)
Lupus has taken away so many things from me, but it has also given me so much. I have bonded closer to my family than ever.I learned who my true friends are. I have learned that I am way stronger than I even knew and way stronger than most people expect! I have learned patience, compassion, and I have become more empowered as a patient as I dive in and learn as much as I can about Lupus. I discovered a love of writing and public speaking. I love helping others, it is something that fills my heart. I became not just a lupus fighter, but I have become a warrior! I write about lupus on many promenant blogs and websites, I have spoken across the country to other lupus patients, and I have even had the opportunity this year to be on television and talk about living with lupus with Toni Braxton. Lupus has given me a keen awareness of the incredible, enduring value of friends and family. I no longer take anything for granted and cherish everyday life has to offer.
Why did I loose my groove lately, when obviously I am doing just fine on the lupus front? Because 20 years is just too long. It is exhausting to be a patient sometimes. It is frustrating to sit by and watch as lupus does not get the media attention, grants, research funding etc that it needs. We need better medication options. We need a cure!
So without further adieu, It is that time of year (maybe a bit late to ask) again to rally up my friends and family to participate and support me in the Walk Along for Lupus this Sunday October 21st. Thank you for all your past support, our team "Team Christine" has been walking for 18 years. We pride ourselves on being one of the top fundraisers every year and try to raise more money then the year before. That's where I need your help! I know it is only 2 days before the Lupus walk, but it is NOT too late! In these tough economic times, I need you more than ever! Every donation helps to fund valuable lupus research – every dollar counts!
You can also mail me a check if that is better for you. Your donation is of course tax deductable. You can also help by passing this donation page link on to your family and friends, or post it to your websites, facebook etc. Let's see what kind of network of social givng and generousity we can create.
Thank you in advance for your support to fund research for this devastating disease that I and many others live with every day. Each step we take brings us closer to a cure and a world without lupus!
SLE is an autoimmune disease, which causes the body to attack its own tissue and organs. Lupus is a difficult disease to diagnose because most individual with lupus, including myself seem perfectly healthy. Lupus affects 1 million people in the United States. This disease affects mostly women in their childbearing years. To date doctors do not know what causes lupus and there is no cure.
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