I’m Walking to End Lupus. Join Me?
Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in Boston to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
A generous contribution of $25 or $50 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts. Every donation -even just $5.00...it all helps and is so deeply appreciated. I realize there are many wonderful causes to support and greatly appreciate contributions to one of my causes. But I am just as happy to accept your well wishes too!
My story started when I was 28 years old. I went on a trip to Aruba with a friend (woo hoo!) but my legs were swollen like sausages the whole time. This was the first memorable symptom I had that began a series of weird, unexplained symptoms that seemed to come and go with to reason. Multiple doctors, multiple specialists, multiple rheumatologists. So many diagnosis that never really seemed to fit. I felt like I was crazy. I thought the doctors were convinced I was just making it up. Finally, about 6 years ago, I met the rheumalogist I have today. Though she also had a long list of diagnosis that I didn't agree with...I mean seriously...how many ailments can one person have? At some point shouldn't we look at all of it and wonder what the common thread is?? Anyway- she decided to treat me for lupus as a way to exclude it. Excpet...I got better! For the first time in almost 20 years I didn't have pain. So while she still refused to call it lupus, I was getting the treatment I needed. Ad time passed she reluctantly decided it must be lupus or "lupus like". I still teason her and will say "it's so lupus-like you'd think it was lupus". So I still have a list of autoimmune diagnosis- autoimmunue connective tissue disorder, RS3PE, reynauds, colitis, and a bunch more that I just can't remember them all. All I know is that my immune system attacks mt body and causes trouble in my joints, bones, kideny and liver.
Today, I am on a new treatment plan because my symptoms came back and were a little worse than before. But, my wonderful rheumatologist understands that helping me be functional and pain free is the goal. I also have a wonderful primary care FNP who has been my savior though all of this the past 18 years- always helping me, never doubting me and trying to help me understand what was happening to my body. She would always say "one day this disease will manifest itself so completely we will know what it is then" and I would say through tears "but what if it's too late then?". Lupus is no joke. It's not just pain and fatigue. People die from it. That's pretty scary.
So I fight! Because I can, because I have children, because I have a grandchild and because I love living a full, fun and active life! I fight because I have a niece who has lupus and has an aunt from her mother's side of the family that died from lupus. So I am going to do what I can to have my best health and to raise money to find better treatments for this ugly disease. I am unbreakable!
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!