My lupus story

Summer 1997

I was diagnosed with lupus the summer after my freshman year in college. The diagnosis came relatively quickly, considering that people can wait almost six years after having symptoms before they are properly diagnosed with lupus. My case was fortunate because of my unfortunate family history of lupus. My mother has lupus, and after telling her about all my aches and pains that I was having around my joints in my hands, she knew I needed to see a rheumatologist. I thought I had carpal tunnel syndrome since I was furiously working on my finals, typing non stop day after day, but as soon as finals were over, she got me to see a rheumatologist in NYC who soon provided the lupus diagnosis after taking my family history, medical history and several lab tests.

Did I show signs of lupus earlier? Probably. I always ‘joked’ that I was allergic to the sun, and playing sports all throughout high school, I always had joint swelling, water on the knee, unexplained aching legs etc. I chalked it all to the rigours of playing soccer, not knowing that these could have been first glimpses into what was to unfold years later.

October 1997

Returning to campus after my diagnosis didn’t scare me one bit. I was still new to lupus and had no idea what I would be in for. I was on medicine, so that was a new experience, for sure, but it wasn’t until I had my first flare in October 1997 that I got a frightening introduction to lupus.

Just before Columbus day break, I was having joint pains again. My hands hurt and were so puffy that I affectionately called them bear paws (school mascot also a bear, so that was oddly appropriate). I couldn’t open doors with knobs because my hands couldn’t grasp a knob and turn with the grip and force required to do so. I found interesting ways to get dressed and brush my teeth. Pants were a challenge, so I wore a lot of track suits and sweats (thank goodness for campus living). I vigourously shook my head to brush my teeth as i loosely closed my bear paw around the toothbrush and used elbows to turn faucets on and off and opened the doors with levers or handles (screwed if there were knobs involved). With all these challenges, I still had no idea things were going to get much worse.

I can’t put on my socks

One day, I woke up and could barely move. This was before the time of cell phones and instant communication on campus. My suite mates were out and I was all alone. I needed help to get dressed since I knew I probably needed to go to the doctor. I (slowly and painfully) called a friend on the phone who lived on the other side of campus and she came over (bless her) to help me get dressed and call the campus ambulance. I called my parents and my awesome dad began a four hour drive to pick me up from school and take me home for the long weekend. When the ambulance came, there were no elevators and the stretcher couldn’t go up the stairs (so now I am hyper aware of places that are not accessible). I had to try to walk to the ambulance using all these people as my crutches, stretchers and Emotional support beams.

When I arrived at student health services, I met with a doctor there and told her everything about how I was feeling and my lupus diagnosis. She called my doctor in NY and they began a relationship that would continue throughout the rest of my college years. I had never felt so vulnerable in my life. I was barely able to do anything for myself. When my dad arrived and basically hoisted me into the minivan, I was so exhausted, confused, concerned and scared.

Bedridden

At home, I soon deteriorated to the point that I had to stay upstairs in my parents’ room so they could take care of me. Like a child, I was frustrated and upset that I could not do things for myself, and I know it was probably also frustrating and upsetting for my parents, especially my mom, to see me suffer. It was at this time that I remembered when my dad used to carry my mom up the stairs. I knew she was sick sometimes, but it wasn’t something that we talked about. Now, I understood what had happened to her and she understood what was happening to me.

I didn’t need to take much time away from school, about a week later, I was back on campus, feeling much better with eyes opened to the life changing diagnosis I had received months earlier.

April 1998

While I continued to have issues, nothing compared to that first flare. I learned more and more about my body, beginning to take note of things that might clue me in to a bigger issue. More educated and more aware, I settled back into ‘normal’ campus life. I told a few more friends about what happened to me, but I was feeling so much better!

Around my 20th birthday, it was a lovely spring day on campus. I was out and about, enjoying the glorious spring weather. I remember feeling a bit odd and decided that I would stop by the friendly doctor at health services on my way to the dorm to see if I needed to have her get in touch with my rheumatologist and adjust some meds. I never made it to the dorm.

What’s happening to me?

I spent the rest of the semester at the campus infirmary as an in patient. That day, I was worse than before. I cried almost every day for the first week or so because I needed to have someone push me around in a wheelchair and into an elevator. I couldn’t get into the hospital bed on my own or use the bathroom without assistance. Now THIS was the most vulnerable I’d ever been. Having strangers undress me, assist me in the bathroom, give me a shower, feed me food and meds. It was humiliating! I didn’t even have the chance to tell anyone where I was. Remember, this was before cell phones and instant phone numbers that you didn’t have to memorise. Other than the hospital phone I shared with (nonexistent) hospital roommates, there were no computers or devices to say “hey friends! I’m in the hospital!” No one on campus knew where I was. My parents were obviously called, but there was no pick up this time. I was better off where I was, at the hospital under constant medical care.

The doctors and nurses and health services were wonderful. They’d never had an inpatient like me before. Usually people stay a night or two for being sick, too drunk, you know, the usual. But they had to go to the grocery store to get food for me, stock up the pharmacy with special drugs like imuran and get me a desk and computer (no laptops here, folks, this is 1998) so that I could eventually do my homework and keep up with courses. It was lonely. I could hear campus life going on outside, but I was walled in.

When I was finally able to move enough to make phone calls (and get the campus facebook…not THE Facebook everyone knows now), I received visitors who would occasionally be allowed to bring me food from the cafeteria. Real food. HA!

High doses of steroids, physical therapy and dedicated hospital staff made it possible for me to eventually go to classes after a few weeks. I was behind, but it was great to feel like a real student and join the community again. I was able to get some real clothes from my dorm room and hang out with friends, but I was on a curfew and had to return to the infirmary every night until the end of the school year. I need to avoid stairs, the cold, damp dorm I lived in was not conducive to getting better, and I had a medical staff that needed to watch me.

And that’s how my lupus story begins…

All in all, while it was a hard year, I learned a lot about myself, that I was a strong person, and that lupus, while it can be scary, can be managed with good care, self- awareness, education and a good attitude. I’ve had many flares since college and different manifestations, but none that have taken me to the point I was in 1998. I’ve been an advocate for my own health and for health education in general ever since. I urge anyone I speak with who has health issues to educate themselves and take their lives seriously (but not too seriously!)