My Team, Butterfly Beauties, has been participating in the NYC walk since 2015. It has been a success and it was because of YOU and YOUR generous support and donations! We are “Walking to End Lupus” again and we could use YOUR help!
2014: My Story- The shortest version: After several years my symptoms started to progress and get worse in 2014. I was at the doctor’s office twice a month with “flu like symptoms” as the doctor called it. I was at the dermatologist once a month. I knew something was not right. Doctor after doctor I was told I was stressed and needed a vacation. I started to actually doubt myself, was I really going crazy??? Was it really all in my head??? I finally did some research online and came across the Lupus.org website. Symptom after symptom matched. Story after story understandable and relatable. I made an appointment and insisted my doctor check my blood work. I was referred to a rheumatologist. Thanks to a doctor that sat with me for two hours and actually listened to my symptoms and ran various tests, I was diagnosed in 2014 with Lupus, Mixed Connective Tissue Disease and Raynaud's Disease.
2018/2019: Was a difficult year. Several flares, new symptoms, new doctors and new things trying to slow me down. For several weeks I had no choice but to use a knee brace and cane and even a wheelchair due to excruciating pain and arthritis in my joints and knee. Due to the daily pain I have every day I have built a high tolerance for pain. So I know when I actually have a pain that I can't deal with, then it's something really wrong. Turned out I sprained my LCL (with a partial tear), have patellar knee arthritis, bursitis and tendonitis. Some would say that's not that bad, people deal with that all the time. SURE, but does that happen out of nowhere, for no reason? My Dr asked if I was running or jumping or playing a sport and I explained to her very simply "all I did was get out of bed". And seriously, that's all I did. Just woke up one day and couldn't use my leg. That's the frustrating part of Lupus, there's no rhyme or reason, there's nothing you can do to stop it, it can just happen out of nowhere, no specific time. Just one day, poof, you can't use your leg for 3 months.
Lupus was also attacking my digestive system. Thanks to my new gastroenterologist, we were able to get that under control and now have new medicine to add to my daily pill supply. It's hard and it's frustrating. I always feel like once we get one thing under control, something new pops up. But I will continue to fight, I will not give up. I will NOT let Lupus win!
2019/2020: This past year I have been dealing with new issues. For instance, I was recently diagnosed with Dupuytren's Contracture and Rheumatoid Arthritis. Learning to deal with these new issues on top of everything else has been exhausting. My knees/joints are doing better, however now whenever I have a Lupus flare up it affects my joints so extreme that I'm back to knee braces and a cane. Been learning to ask for help and acknowledge when I need to take breaks.
I still suffer from symptoms (Extreme exhaustion & Fatigue, Insomnia, Neuritis, Painful & Swollen Joints, Temporomandibular Joint Disorder, Edema, Arthritis, Fevers, Anemia, Vitamin Deficiencies, Butterfly Rash, Allergy to Sun/UV Rays, Hair loss, Several Skin and Breathing Issues, Raynaud's phenomenon, blood circulation issues, and DVT/Thrombophilia are just to name a few).
I’m still learning how to manage them better. Still have doctor appointments. Still have Lupus. But with the help of my amazing husband, my wonderful family and my fabulous friends, I can manage it a little better. One day at a time, one pill at a time, one spoon at a time.
Thanks to Lupus.org I was educated on the symptoms of Lupus and found similar stories. I was not alone. I am walking to help fund education, research, advocacy, support and one day…a cure!
Please consider making a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus. Any donation is greatly appreciated. Every dollar counts.
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.
Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
THANK YOU FOR YOUR GENEROSITY AND SUPPORT!
Chrissy, Team Captain
Team ~ Butterfly Beauties
If you would like to join the team, please contact me for more information.