I want to express my gratitude to you for taking the time to visit my personal fundraising page and for hopefully taking the time to understand why this fundraising walk is so crucial to me.
I’m sharing my story not in search of sympathy, but to raise awareness about the realities of living with not only lupus but also a chronic and invisible illness. It's often challenging for people who see a person who appears "normal" on the outside to understand.
Lupus currently has no cure. It's a lifelong disease that can sometimes be fatal. That's why I'm here to support the Lupus Foundation and participate in the "Walk to End Lupus Now!" event for the very first time!
It's so crucial for us to support and uplift one another, and to raise awareness about lupus, especially for those of us who are often silently struggling to fight our own bodies. Together, let's continue to find hope, strength, and joy in the little things that make life worth living.
For years, I struggled with unexplained joint and body pains, enduring one misdiagnosis after another. Doctors would tell me that it was "just some sort of inflammation," but they were uncertain about the root cause of this inflammation, even after repeated medical imaging.
It wasn't until 2014, when a chiropractor told me he would no longer administer adjustments because I was developing worsening pain in my back, neck, and shoulder following adjustments. He mentioned the possibility of a cartilage disorder after I went through repeated bouts of costochondritis following my chiropractic appointments.
I continued on with "life as usual" until a major flare-up led me to the emergency room, with inflammation all over my body. This was the first time people could physically see the inflammation and took me seriously. They ran test after test to determine what was causing so much inflammation. The results showed that my inflammatory markers were high, and that I should have seen a rheumatologist months ago.
The ER doctor wrote up a referral for me to see a specialist. I didn't even know what a rheumatologist was at the time. This finally made my primary physician listen to me and help guide me in the right direction. She suggested a rheumatologist who she thought I would benefit from seeing and who I would probably really like.
After just one appointment and lab workups, the pieces began to fall into place. My rheumatologist was finally providing some answers to my symptoms. After going through years of misdiagnosis, he landed on a diagnosis for all of this: lupus.
Living with lupus has completely reshaped my life and physical appearance. One of the most significant challenges I face is learning to live with the diseases caused by having lupus. I've developed antiphospholipid disorder, which causes my heart to produce blood clots constantly, requiring me to take Warfarin, a highly monitored blood thinner. I have also experienced recurring myocarditis, inflammation of the heart muscle, and have even endured three mini-strokes. It feels like a never-ending cycle of "you also have..." and never a "actually, instead of ___ you have...", which can lead to feelings of frustration and hopelessness.
Adjusting to life with lupus has been a tiring journey. Simple pleasures like basking in the sun or taking part in my favorite outdoor activities have become distant memories. I miss the carefree days of enjoying everything about summer, but in reality, every season brings its own set of challenges.
Lupus flares can be triggered by weather-related pressure changes, stress, sun exposure, extreme temperatures, and even overuse of my body and muscles. It feels as if everything can trigger a severe flare-up if I'm not being mindful of what my body is telling me. However, lately, I've been able to start reincorporating adventures back into my life.
On top of these challenges, the consistent use of prednisone in the past has caused weight gain that affects my self-confidence. Over the years, after numerous medications, including anti-malaria and chemotherapy drugs, most with little to no success, and sometimes even anaphylactic reactions, I've had to adapt. Currently, I rely on a fairly new monthly infusion medication specifically for Lupus (SLE) to manage my symptoms, it’s been going really well!
Unfortunately throughout the years, I've become a pro at self-advocating and navigating the complexities of insurance coverage for medical treatments over the years. It's been a necessary yet exhausting battle.
Despite the hardships, I find hope and joy in the little things. Enjoying my time with my old man furbaby, Falkor, and cherishing weekend get-togethers with the people I hold dear brings me so much peace and happiness.
Since becoming a homebody not by choice, I've discovered that I really enjoy bringing out my inner "handywoman" to fix things around the house. It makes me feel significant and useful. No matter how small the task may be, finding joy in the small stuff is just as important as appreciating the bigger things.
Recently, I've even begun to slowly reincorporate my love for creative outlets such as writing poetry, doodling, and multimedia arts. These were hobbies I had to put on hold due to the pain and suffering caused by inflammation. It became difficult to type or hold a pencil or paintbrush for long enough to begin a project.
Thank you for taking the time to read this not-so-short portion of my journey and for supporting me with a donation (only if you're able to) and through continued encouragement in the fight to find a cure for lupus.
Sending love and positivity to all of you!
Xx— Chelsea
