diagnosed diagnosis flare lupus

My Journey – The Short Version

Lupus hit me in a strange (and quick) way. I had just graduated from grade 8 and was on top of the world. I was voted class president and had been selected by my peers to address my graduating class as the valedictorian. There wasn’t a sport or a club that I wasn’t involved in. As a graduation gift, my parents bought me a brand new bike, which I rode throughout the city every single day of that summer. Who knew that the November following that very summer I’d be so paralyzed with fatigue that I had to crawl from my bed to the washroom?

I had only been in high school for 2 months when I got ill. I told my dad that I was going to stay home from school, something that I did NOT like doing. But I was so weak, so tired, that I literally had no choice.

As the days went on, I grew weaker. While I was barely eating anything, I seemed to be gaining weight. After 3 days, my parents decided that it was time to take me to the emergency room. After several tests, I was finally diagnosed with Lupus Nephritis. I was put on dialysis right away. All of the weight I had gained was water weight due to my ailing kidneys. Little did I know what else was in store for me.

After much discussion amongst my doctors at Sick Children’s hospital, it was decided that it would be beneficial for me to receive a medication called cyclophosphamide. This medication has proven to be beneficial in people with autoimmune diseases. Unfortunately, it wasn’t beneficial for me. Soon after receiving the medication intravenously while in my hospital bed, I remember having a terrible, terrible stomach ache. Then…darkness.

I woke up 3 days later. The first person I saw was my father, sitting on the edge of my bed, smiling that huge smile of his. I noticed a bandage on his lip. When I opened my mouth to ask him what happened to his lip, I felt a terrible pain throughout my entire tongue. I came to realize that 3 days before, I had a bad reaction to the cyclophosphamide and I had a seizure. While the seizure only lasted a few moments, during the course of the seizure, I managed to bite my tongue several times without even knowing it, and I also managed to hit my dad in the face while he was trying to hold my thrashing arms down.

I managed to recover from that episode. In fact, I got so much better that I was able to get off of dialysis. I went on to finish high school and college with only a few hitches along the way. I decided that I wanted to go back to school and study business, so I enrolled in university and was ready to go. Just one week before I was to start university, I had another bad Lupus flare. This flare was so serious that my previously surviving kidneys had begun to fail again. They failed to the point where I had to resume dialysis.

Months had passed and dialysis had become a fact of life for me, so I started to organize my life around it. I continued to go to school part time and work part time as well. I did this for a year…until I got ill again.

My sister took me to the emergency room in the evening where they did all sorts of tests. Before the sun rose, I could no longer walk. I couldn’t move my arms. I was completely paralyzed on both arms and legs.

I was scared. I wasn’t necessarily scared because I couldn’t walk, but I was scared because I seemed to be losing control of my own body. I couldn’t feed myself, nor could I answer my own phone. When I spoke, I couldn’t seem to speak quickly. My speech was slow and slurred. I drooled when I spoke. After much testing, I was told that a growth had developed on my brain, most likely to Lupus.

I began aggressive drug treatment with a steroid called prednisone. In the meantime, I had to learn to do everything again. I had to learn to walk. I had to learn to use my arms. I had to learn to eat by myself, to go to the washroom by myself. I had to re-learn everything.

After a month, I was allowed to go home. I was also put on a waiting list to go to rehab in order to help me learn to walk again. The waiting list was about 2 months long.

I wasn’t prepared to wait 2 months to learn to walk properly again. When I got home, I did my own physiotherapy everyday. I walked up and down the stairs in my house. I did strength training. I did everything. Much to the shock of all of my doctors, I can do everything that I was able to do before. A month and a half after I became able to walk again, I received a letter in the mail telling me that a space had become available for me in a rehab clinic. I threw the letter in the garbage.

So here I am today. I’m 25 years old now. I’m on dialysis and I’m waiting for a kidney transplant. I work part time and I go to school part time too. I’m also actively involved with Step by Step organ transplant association. According to many people I know, I don’t “look sick”. Well, I’m glad I don’t look sick, because I’m not. I may have Lupus, but as you can see, while Lupus may try, it DEFINITELY doesn’t have me.

1 comment on “My Journey – The Short Version

  1. Thank-you for sharing your story. I may not have Lupus but I do have Type 1 diabetes. I can’t understand what it’s like to have Lupus but your blog is helping me. I have a roommate that has Lupus and I’m trying to understand it a bit better. Thanks.


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