When you feel defeated, remember where you started

I remember this day as if it were yesterday, even though it happened almost ten years ago. The fact that I can remember this day so vividly is what constantly reminds me to appreciate life; every moment of every day, because you never know what is to unfold.

It was spring during my grade eight year of high school. I remember experiencing incredible stomach pains, it felt as though a knife was being stabbed into my abdomen and dragged around in circles. It came and went in waves and after being in a fetal position for hours, I knew it was time to go to emergency. Both my parents were out of town, my mom was in Vietnam and my dad was in Toronto. My parents separated when I was ten, so both my parents traveling became a normal occurrence during my teenage years. Once I arrived at the hospital with my aunt my pain only got worse. After being admitted into the ER, the doctors immediately suspected that I had appendicitis; they kept me off food and liquids in preparation for surgery. They were just waiting on my blood work to come back before confirming the diagnosis and starting surgery.

After a day in the ER and no markers in my lab results that showed signs of appendicitis, the doctors were quite taken back. They told me they did not know what was wrong with me and they were moving me to a longer-term unit at Children’s Hospital, and that I should expect to be here for a few days. At this point, I was pretty scared. I was only fourteen and staying in a hospital with my aunt who barely spoke english and who made it very clear she did not want to be here anymore than I did.

I got my blood drawn 3-4 times a day, the nurses would even wake me during my sleep to draw blood. On average, they were drawing anywhere from 15-20 tubes a day. During this time my stomach pain still persisted, I was on a lot of morphine to mask the pain. After five days of ongoing blood tests, different doctors coming in every hour to poke and prod at my stomach, and immense abdominal pain, it finally came.

My hospital room went from being cold and dismal to full of doctors and graduate students, in what seemed like a heartbeat. I remember seeing at least eight different faces in my room. They said my blood work was consistently showing abnormal results; I had a dangerously low platelet and red blood cell count, and a very high amount of white blood cells. My platelets and red blood cells were so low that the doctors would not let me leave my bed in case I bumped into something and bruised myself, they said I would bleed to death. Finally the diagnosis came. It was the first time I had ever heard of the word ‘lupus’. The doctor said they had very strong evidence to believe that I had lupus. It is crazy to think a decade ago I knew nothing about lupus or its existence, and now it is all I know. He continued by telling me lupus was an autoimmune disorder and it was something I was going to live with for the rest of my life.

My heart completely stopped. I did not react. It was all just too much for me to process. How could I come into the hospital with severe stomach pains and leave with a chronic disease? I just did not understand. To be honest, I don’t remember much after that. I must have blocked everything out because I did not want to believe it.

What I thought was going to be a quick trip to the ER turned into a two week stay at the hospital. I was put on very high doses of steroids to get my blood count up before they said it was safe to release me. I had missed two weeks of school, none of my friends or family really knew what was going on, I lost 15-20 pounds and returned to school looking sickly thin.

The first year of my diagnosis was the toughest year of my life. My whole life changed overnight and I was thrown into a world  of medical terminology I had never heard, I was doing blood work every other work, and seeing doctors and specialists weekly. The high doses of steroids I was on continued throughout the summer in hopes to get my lupus into remission. I went from being 105 pounds to 130 pounds over the course of the summer due to my medications. The steroids increased my appetite ridiculously, I was eating all day and my portion sizes had tripled. I was depressed and had absolutely no motivation to do anything about my weight gain and diet. I started my grade nine year of high school looking like a completely different person. I was the biggest I had ever been, my face was puffy and round, and I had terrible acne. I barely recognized myself. I had lost me and who I am. I came back to school only as a mere shadow of myself.

The next year I spent trying to learn everything there was to know about lupus. I wanted to be knowledgeable enough to go through this alone. I went to all my specialist appointments alone, I did not want anyone else involved. Like I have said in previous posts, when I started this blog a year ago that was when I finally let my family and friends in. This was the most they had known about my disease in ten years. I made myself believe that if I couldn’t do this alone, I was a failure, that my lupus controlled me and that I wasn’t strong enough. I can’t remember how many nights I cried myself to sleep to the point I could barely breathe or open my eyes the next day because they were so swollen. At such a young and naive age all I could obsess over was why me? What did I do to deserve this? I had this mentality for at least a year after my diagnosis. Anytime anyone would ask me about my lupus I would either breakdown or shut them out. Emotionally I just couldn’t handle explaining it to people. I felt as though every time I talked about it, it made it more real.

I never imagined I would be where I am today, both mentally and emotionally. I never thought I would have the courage or strength to share my story with my family, friends, and strangers. I honestly thought I would be doing this alone for the rest of my life. I never wanted people to think I wasn’t strong enough, or that my lupus was an excuse for anything. Through all my experiences in the last ten years, I have learned the true meaning of strength; it is the ability to face adversity with perspective, appreciation, and mindfulness. To know true strength is to be able to let yourself be vulnerable at times and to lean on others when you can’t find the strength within yourself. It takes more strength to get past your ego and self-pride then to face adversity alone.

Starting my blog has been the most freeing, rewarding, and eye opening experience I have ever had. I never could have imagined how much I would take away from this journey. I t has connected me with my loved ones and supporters in a way I never thought possible. I appreciate every aspect of my life and every obstacle I have overcome. It has made me the woman I am today and for that I am forever grateful. I always remind myself that there will always be someone out there who is in a better and worse position than I am. I have so much to be thankful for.

I wanted to write this blog piece today because people always ask me how I can be so positive about my health, as if it never affected me. Trust me, I went through a very dark, wallowing stage where I shunned everyone out. I have gotten past that now and am empowered to share my story and see it with a positive and optimistic outlook. Thank you to everyone who has given me the strength and courage to be open and share my life for the benefit of others, and most importantly myself.