My Lupus Story

I was diagnosed 31 years ago with pSLE.

Here is my story.

I was diagnosed with lupus in June 1992. It took me six years to get diagnosed. I was 15 at the time of diagnosis. I grew up in Korea, Saudi Arabia, and Malaysia (near the equator). So you can imagine the sun exposure I got. I started having ankle pain at the age of 9. I thought I sprained my ankle while playing in the playground. I started developing red spots on my legs, and eventually, my arthritis pain spread to other joints. At the age of 12, I was having constant nose bleeding and shortness of breath.

Numerous doctors saw me, but they treated my symptoms individually without coming to a proper diagnosis.

My family moved to Malaysia in 1992, and in April 1992, I developed a butterfly rash on my face. A dermatologist saw me. The first thing she blurted out was, “Oh, it looks like SLE!” then she ordered all the labs and sent to see a doctor who can treat lupus. By then, I saw my arms and legs turning purple from Livedo reticularis.

I remember anxiously waiting my turn at the doctor’s office, wondering what I had.

I met an excellent doctor who took the time to explain to me that I had SLE, I shouldn’t go out in the sun. I should carry an umbrella, wear long-sleeved shirts, wear sunscreen, and from then on no more PE class for me. He told me that he would prescribe me some medications and I shall never skip, stop or taper it on my own but take it exactly as instructed. Once I notified my school and classmates that I could not go out in the sun, I became a vampire to my classmates with a monster face and purple limbs. However, my friends stood by me and helped me a lot. It was not easy living in a foreign country in a local school carrying an umbrella. I had to overcome hostility and ridicule.

My parents took me to the university hospital for a second opinion, and they recommended that I stay there. They told me that I had trace proteinuria and that there wasn’t much they could do if I developed lupus nephritis with the medicine at that time. My parents consulted my doctor, who diagnosed me first, and he said they could send me back to school under his care. So, my parents had me dispatched from the hospital and sent me back to school. My doctor encouraged me stating medicine will advance in the future, that there will be better treatments available for lupus and that I should be able to live my full lifespan, so he supported me in going back to school for my career. From then, my dad collected information about lupus from his friend, a medical school professor. I studied lupus on my own and listened to my doctors verbatim. It was a rough time at school with constant fainting. However, with the support of my classmates, teachers and doctors, I was able to make it. All my doctors were very friendly, educating me on lupus and lupus-related issues.

I then went to college. I attended my first two years in Malaysia, then transferred to a university in the US. I came to the US alone with my Malaysian friends I met in college. It wasn’t easy to adapt, and the whole new healthcare system and health insurance threw me into awe. Plus, the cold weather made my arthritis pain worse. After my first semester in the US, I seriously considered dropping out of college. However, I decided to try another semester. Then, I met a professor who motivated me, and I thought I wanted to be like her that semester. I took the courage to stay, graduated college, and made it to graduate school.

I met an excellent team of doctors at the university hospital when I went to graduate school. My rheumatologist was so dedicated and passionate. He encouraged me to get my PhD. All my doctors were so supportive; I felt like they were my family. In July 2005, I defended my PhD dissertation and just deposited my dissertation. I was the happiest girl in the world. I had my ophthalmologist visit for the last time before I moved to my new job. I went in very happily. Then, moments later, I was told the news that I had hydroxychloroquine retinopathy. I spent the whole day doing multiple tests, from OCT to an angiogram. You name it, I did it…. Then, there was a big discussion with my ophthalmologist and rheumatologist on whether to stop hydroxychloroquine. My brain stopped working. I just wanted to go home and sleep as I spent the whole night revising my PhD dissertation.

I discontinued hydroxychloroquine and was instructed to see a retina specialist three months later. So, I moved to a new location to start my new job as a professor. Then, I had to see a rheumatologist at the new hospital. They carefully watched me to make sure I didn’t have a flare after stopping Hydroxychloroquine. The details of my retinopathy story are written in another post.

After stopping hydroxychloroquine, I was miserable and experienced pain all over my body. I became more sun sensitive, etc. I tried all sorts of NSAIDs, painkillers, etc. Then I had an upset stomach. Several side effects appeared. I started exercising more and ended up taking immunosuppressants. I also tried Benlysta, which didn’t work for me. My lupus is finally under control with two immunosuppressants. I take numerous medications, have more than ten doctors that I see, and my doctor’s appointments and tests keep me busy.

I call myself a professional patient.

But thankfully, I do not have any organ involvement. My kidneys are okay so far. I am doing well. I’ve been blessed with excellent doctors, friends, colleagues, and family. They touched my life, and I touched their lives.

We cannot fight lupus alone.

We must collaborate with our doctors, family, and friends. It takes time and effort to educate your friends and family. Be patient. We indeed get sick and tired of being sick and tired. It seems like we have to be patient all the time as a patient, waiting in the waiting room, waiting for the medications to work or find the right medication for us, etc. However, I came this far from pSLE, and many others did.

We are more than lupus!

Written By: "M"

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October 2023