Riding for Lupus Awareness Month: Danielle's Story
I was diagnosed with Lupus shortly after my 21st birthday—nearly 3 years ago from today. Lupus is an inflammatory disease and causes the immune system to attack its own tissue. Because there is no known cure, I will live with Lupus for the rest of my life. Every day is different and my disease has gone through many changes throughout the short amount of time that I’ve had it. Regardless, I will always say that it is one of the best and most eye-opening things that has happened to me.
Here’s my story:
It was my freshman year of college at Oregon State University when I knew something wasn’t right. I started to notice inexplicable bruises appearing all over my body. I would wake up with nosebleeds and sores in mouth and knew I had to do something.
After a visit to the doctor, my blood work showed that I had 7 thousand blood platelets. A healthy count typically shows anywhere from 200 to 400 thousand. Platelets help clot your blood, which explained the bruising. I was hospitalized to receive a steroid treatment to boost my platelet level and the treatment helped initially, but it wasn’t a long-term fix. The doctors decided to give me a bone marrow biopsy in order to rule out leukemia. It was the worst pain I had ever experienced but thankfully, I tested negative. At that time, I also tested negative for Lupus. It was concluded that I had Idiopathic Thrombocytopenic Purpura (ITP).
In order to treat the ITP, I found myself at the doctor’s office once a week for 6-8 hours for an entire month, surrounded by cancer patients who were also waiting to get their treatments. It felt like I was getting a glimpse into what my dad my have gone through during his battle with cancer, three years prior.
The treatment worked and all of my blood work was normal for almost two years, until the summer before my senior year of college.
I began to experience an unusual level of fatigue. I would wake up to the sun blearing through the blinds, but when I tried to open my eyes, they would immediately shut and I would fall back into a deeper sleep. I didn’t think much of this until I developed a “butterfly rash.” The rash was in the shape of butterfly wings across my cheeks and nose.
After hearing my symptoms of fatigue and looking at my rash, my doctor concluded that I was having an allergic reaction to ultraviolet rays and that I had Lupus. Despite knowing how this would affect my day-to-day life, I wasn’t scared or upset. I was just relieved to finally have an answer.
At first, they diagnosed me with Cutaneous Lupus (Lupus of the skin) but it was later concluded that I had developed Systemic Lupus. My kidneys started leaking protein, my white and red blood cells showed abnormalities, I experienced major hair loss, and I suffered from headaches and joint pain on a daily basis. To me, those are the easiest things to deal with. I have control over my mindset and I can decide how strong I want to be for the day when I am not feeling my best. The hardest part is the physical changes you see in yourself—like the hair loss, the puffy face, and the weight gain from so many steroids—You just begin to wonder if other people notice. I wore hair extensions for a year due to all of the hair loss, but I was able to take them out last November it was the most freeing feeling ever. Simple things like that I had previously taken for granted.
All of this said, this is the lifestyle that I have become accustomed to. To me, I am strong, happy, and healthy. I got Lupus during college, a time where you really form into your own person. I saw others struggling with who they were or wanted to be but I never felt that way. I have always felt content and confident; Lupus steered me where I needed to be at the right time, rather than feeling pressure to act or be different than my own unique self.
I will never know why I developed Lupus when I did but I strongly believe that everything happens for a reason. I cringe at the thought of people feeling badly for me because in reality, we all go through challenges in life and we all have different experiences. This just happens to be mine.
BurnCycle has played a huge role in my ability to feel strong and healthy. I love what I do as an instructor. People rely on me to show up. And every time, I feed off the energy of this community to feel powerful. Although my disease is still active and I hope to one day be in remission, the constant support of my friends, family, and this community have been exceptionally important to my outlook on this beautiful life I have!
If you’d like to learn more or donate to support Lupus research to find a cure, visit Molly’s Fund.