Finally, I had an answer, but the worst was far from over.
Lupus is particularly vicious because it can affect every part of a patient’s body, from their skin to their organs to even their mind. It’s an autoimmune disease in which the immune system cannot tell the difference between foreign invaders, such as bacteria and viruses, and the body’s own tissue—so it attacks both, leading to systemic inflammation. This inflammation is often painful and sometimes disfiguring.
A few years after my diagnosis, I developed horrible joint pain. My doctors tried several treatments, but nothing seemed to work. I remember spending one birthday in the rheumatologist’s office crying because my hope for living even a semi-normal life was disappearing. Everything in my life got put on pause. I had to quit a job I loved because I couldn’t count on my body anymore.
But I did not give up.
Eventually, after consulting with my physician, I began a new treatment that has since greatly improved my quality of life. At the beginning, a good day was rare. Then, I began having one good day a week. Then two days. Then three days. According to my doctor, my bloodwork had improved as well. It was a strange mix of emotions: It seemed almost too good to be true, but I desperately wanted to believe it was happening. Then finally, after nearly accepting that I would be confined to a bed for the rest of my life, the good days were beginning to outnumber the bad.
I’ll be the first to admit that my life is far from perfect, and managing my lupus is essentially a full-time job. I don’t know how I will feel when I wake up each morning, as my body still swings wildly from “feeling good” to bedridden, often for no apparent reason. But the fact that there are swings at all is a massive improvement, and I feel I’ve been given a second chance at life. Activities that were previously off the table, such as travel, are options again. Last year I even went on cruise, which is something I had given up thinking about before my treatment routine, and now I travel more frequently and farther than I have in about a decade.
I’ve also had the opportunity to meet a few researchers who continue to search for treatments for lupus. These meetings opened my eyes to their passion, and I was overwhelmed when they shed tears at seeing the results of their work – my ability to return a small portion of the things I enjoy doing. I am so grateful to these researchers for their dedication, and I eagerly follow their efforts.