Why We Walk

Having lupus means twenty different medications trying desperately to manage the savagery of lupus in my body, having my esophagus removed because after 8 surgeries to try and save my esophagus, it is futile. It means long stays in the hospital, waiting to be strong enough to have my stomach pulled up into a new esophagus — leaving me with less than 25% of a stomach. To those who are my heroes; daily striving to find new drugs to fight lupus; tediously working with genes and tiny parts that I don't even know, to find a cure for someone you don't even know - thank you. Your commitment to the millions of us who are trying desperately to live with lupus does not go unnoticed or unappreciated. Our best efforts to say thanks lay in the annual Lupus Walks where we personally raise as much money as we can to support your work. It's not much compared to the funds you need, but it is what we can contribute and it is how we can say thank you for your brilliant minds, your unseen dedication and your unwavering commitment to someone like me whom you will never know. Candi Dabney, living with lupus

I was diagnosed with lupus in December 2011. I live in West Deptford, NJ with my husband Mark, our 4 sons Michael, Patrick, Nicholas, and James. I primarily have lived a healthy life with no major health issues other than a minor heart murmur. I have watched my father struggle with lupus for many years. I never thought that it would be me. When I first found out, I have to admit, I was dismayed. It took a while to get used to the idea of having to see a rheumatologist and take medication on a regular basis. The feeling of being a burden to my family made me sad. Unfortunately, I know a lot of people with this disease and some that are no longer with us because of it. A lot of people are ignorant to what it is, what it does, how it affects you and so on. I have now dedicated my time to the hope for a cure and to educate more people about it.  Those with lupus have a motto, “I have lupus, but it does not have me.” I will continue to fight for more medication to treat this disease. I firmly believe if we stay focused and fight for what we believe in, that “together we can be lupus strong!” I am the type of person who has always done for others and will continue to do so, however, maybe now it is time to do something for me. I am going to enjoy my life with my family and watch my children grow up. After all, life is short and taken for granted by so many. I truly believe we are here to make a difference and for a purpose. Sick or not, I plan on doing just that. Jennifer Richardson, living with lupus

I walk because it is a proactive, positive way I can help my son, Alex, who is 20 now but was diagnosed at age 16. I wasn't able to suffer through chemo treatments for him or blood transfusions or high doses of prednisone. I can't take his daily medication for him. I can't feel his extreme exhaustion. I can't feel his anger or frustration but I can walk. I can walk and will walk to raise awareness, to raise funds for research to deal with this disease the only way I know how. Fran Tsimoyianis, mother

I am walking because I am able to walk. I was diagnosed with lupus in 2003 and have been blessed, so far, to not have any of the major ill-effects of the disease. I am walking because unlike so many others once my symptoms appeared I did not have to spend years wondering what was wrong with me. With the type of insurance I have I did not have to beg my primary care physician to send me to this doctor and that; I went directly to the specialists I thought I needed to see. I am walking because my medication has so far not caused me any side effects. I am walking for the many people I have come to know and know about who have suffered and even died because of lupus and for those who have become disabled and had to leave their jobs. I am also walking for supportive families and friends. I am walking because God has blessed me to be able to walk for those who can't and I am grateful. Hilary Wilson, diagnosed in 2003

I was diagnosed with lupus when I was only 15 years old. Every day is a constant struggle for me, but it is an even greater struggle for people much sicker than me who are unable to work or even walk. I joined the Walk for Lupus Now, because I want to raise funds for those living with lupus that are unable to help themselves and raise awareness about this lesser known condition. It is a blessing to be able to share this sense of community with others who understand exactly how I feel each and every day. Carolyn Sayre, SLE, diagnosed 1998

There is no greater test of faith than to witness someone battling a disease for which there is no cure. I walk because my friend's son was diagnosed with lupus. Each step I take increases awareness about this disease and gives hope to my friend, her son, and all of the people whose lives have been affected by lupus. Meredith O'Connell, concerned friend

"Walking with Butterflies" We are free Free from pain Free from worry Free from stress We are butterflies Our wings stretch across many states, countries and fields We walk together not just for a cause or a cure But because we are a family That bonds together We reach to find new areas of growth, coming out of our cocoons To learn from each other To grow together To heal together We walk together to encourage and strengthen But I walk with you in love Mellonee Walker, SLE, diagnosed in 2004

Why I walk...I walk for a CURE Why I walk...I walk for Awareness Why I walk...I walk for those who never had a chance I am one of the many faces of Lupus. I was diagnosed at the age of 12. Years following my diagnosis, a number of medications were prescribed by my doctors to manage my illness. I was told that medicine would help to calm the "volatile creature" living inside of me. Our immune system is supposed to protect our body from viruses and foreign matter; not attack it. I am on my second year of chemotherapy treatments as well as high doses of prednisone therapy and various other medications. I experience intolerable pain, swelling and extreme exhaustion daily. I am one of the lucky ones. I walk for a Cure....I walk for Awareness....I walk for those of you who never had a chance Rasheda Maria Thomas

Why do you walk?

Whatever your connection to Walk for Lupus Now, we want to know. Send your story to info@lupustristate.org.