My name is Katie Thompson, I am 25 years old, and I have Systemic Lupus Erythematosus.
My first symptoms began when I was in high school. I noticed that my fingers and toes would turn purple and go numb from time-to-time. When my adrenaline went up, my blood would travel away from my extremities, which made it difficult for me to use my hands and feet. Eventually, I was able to meet with a Rheumatologist, and was diagnosed with Mixed Connective Tissue Disease. Mixed Connective Tissue Disease has signs and symptoms of a combination of disorders, one of them being Lupus. It is referred to as an overlap disease. I go for routine blood work check-ups every couple of months to keep an eye on my blood levels. The one in particular that would drop low are my platelets. To treat my low platelets and get them back up to normal levels, I was on and off the steroid prednisone for many years. Dealing with the side effects of this drug alone was very difficult at times for me.
As the years went on, I made sure to adapt to my symptoms the best that I could. I would wear warm mitts and socks during the fall and winter months to decrease the numbness in my fingers and toes. My fingers would often swell and the joint pain would disallow me to make a fist, so I would try to stay out of the humidity as it would cause this symptom to worsen. And because I would get so fatigued so often, I would rest as much as I could so my body could heal.
In February 2014, I had an antibodies test done and it was discovered that I have smith antibodies. This, in turn, meant that my Mixed Connective Tissue Disease had evolved into Lupus.
Just like everyone else with Lupus, I have good days and I have bad days. It doesn’t just affect my body, but it affects my emotions as well. I would to get “down” on myself when I deeply thought about the disease, sometimes going into a depressed state of mind. I kept this medical information to myself and my immediate family, as I didn’t want others to feel bad for me, or look at me differently.
I would regularly sit at my computer and search for information about Lupus, that’s when I came across the Walk for Lupus. I decided that I wanted to get a team together to participate alongside with me. I had asked my parents and my boyfriend if they would be willing to join my team and help me raise awareness about Lupus. They easily agreed to join and at that point, I received pledge forms and “got to work” on awareness.
One question I had asked myself was how am I going to spread awareness and ask for pledges? I had written up two different memos to send out. The first write up was very open, directed at the facts of the disease and how it affects a person’s abilities. The second write up was a very personal and direct memo, as it was aimed towards “my personal story”. I contemplated for a couple weeks on which memo to send out to everyone. I was very nervous about telling people that I live with this disease. Since I hadn’t let anyone know of my medical condition, I had a very tough time to convince myself that it was ok for others to know.
After discussing the two memos with a close friend, I decided that it wasn’t only good for me to open up about this disease and how it affects me personally, but also, it was the best way to spread awareness. After I sent the memo, I received more positive replies than I had expected. Donations flooded in from family, friends, and coworkers. It was an amazing feeling to receive the support that I did. Along with donations, some would also include notes of encouragement and acknowledgement.
Today, I work with my doctor to continue to monitor my health and take the necessary measures to ensure that I am doing all that I can to lead and maintain good health and a positive attitude. I am glad that I opened up to everyone about living with Lupus. I stay healthy by exercising, eating well, and resting my body when needed. I can now live happily with who I am, and know that this disease does not define who I am as a person.
I have since been asked to serve as Secretary on the Lupus SK’s Board. I have accepted this position and will start at the September 12, 2015 meeting.