As a teenager we all expect to go to school be with our friends and have fun, figure out who and what we want to be. You know what they say those should be the best years of our lives, high school; parties, dating choosing a college and a career path, and just having a great time experiencing everything a teenager should. Well for me things became a little complicated and things definitely did not go the way I thought they would. Shortly after my 17th birthday I developed a rash on my face that looked like well butterfly wings, that’s where everything just went downhill. Trips to the doctor, countless tests. Then results had confirmed I had or have S.L.E. I do have lupus. It’s not easy to live with but I learned to deal and live my life with its ups and downs.
The next year another big flare hit and i was unable to graduate high school when I should have. However I held my head high and finished school a year later and actually got a job doing what I love and it happened to be my co-op placement. It was a job at a face salon, caryl baker visage doing make up, facials, and waxing. Make up is the best part though I love it. Working there was the best thing to ever happen to me at that point and I was doing well for a while, no big flares. I did their special training, it was a month long course, but the stress from it ended up giving me shingles really bad on my face, I had to get a personal portable pump to get my meds to get the virus taken care of. I got over that and continued to work. Then I went on a vacation to Cuba, and I wanted to drink, so I did, and well as lupines we shouldn’t do that, not too much any way or not at all. I got Pancreatitis, and was in the hospital when I came back for a week and a bit. Other than that my flares were just pain every so often coming but nothing I couldn’t handle.
Then lupus reared its ugly head and I began to feel sick all the time, my hand would cramp up and seize up while trying to do my job. I was having flare, a bad one that ended up taking me away from work and on disability. I was waking up unable to move, not able to get out of bed, go to the bathroom sometimes. But when I had good days I was able to work on the side for my old boss but could never get back to it without ending up in some sort of lupus flare, small or big. I was also diagnosed with lupus nephritis a couple years after my initial diagnosis and in 2011 things got really bad. My whole body started to swell, I was retaining a lot of water, my feet were so bad I couldn’t wear shoes, they looked like elephant feet. I had horrible cough and I started getting bad shortness of breath after taking a few steps, or climbing a few stairs. I was using a puffer for pneumonia and was treated earlier that year, early summer. In September I found out I was in mild Kidney failure, and had to start chemo. The start of October 2012 I did my first round. Then by the next weekend, thanksgiving weekend in Canada, I just couldn’t catch my breath anymore after a shopping trip with my friend. My parents called the ambulance and I went to the ER on Sunday. Monday, on Thanksgiving I just stopped breathing as they tried to put a catheter in me so I wouldn’t get up to pee. I was put on life support. They induced a coma, and were doing 24 hour dialysis. The doctors told my family to prepare; they didn’t think I would survive.
My family and friends filled the waiting rooms, support from strangers and friends on Facebook, praying for me. I woke up Halloween, surprised the doctors, they called me a miracle. My muscles and nerves were damaged and I couldn’t move. I had to learn to do everything again, rebuild muscle. Muscle I still don’t have coming on 6 years later. I got out of the hospital almost 4 months later on Valentine’s Day. It has been a rough road to try and get back to where I use to be. For my 25th Birthday I decided to have a fundraiser birthday party and raised just over $2000 for Lupus. Unfortunately I didn’t enjoy the party the way I could have, feeling sick, I was getting shingles for a second time. I hate shingles, what a horrible, excruciating pain! After that things were just up and down, flares here there. I wake up in pain every day. Most days I manage, but there are days I just can’t. Physically and emotionally. At age 26, Close to the end of the year, I fell and hurt myself only to find out I have a vascular necrosis of the hips, and need a replacement right away for the left side.
Just before my 28th birthday I had my replacement, which was last year January 2016. I ended up staring a YouTube channel, Living Lupine, to follow my fight, and my journey through surgery. The recovery was rough, but I made it through, better than ever. I am lucky to have a wonderful support system to get me through tough times, which is so important. The new hip has been like a whole new world for me. So much freedom to move around, I haven’t had that in a long time. Finally I started trying to get back to being me, before lupus, trying to all that prednisone weight, and just get fit and healthy. That was until now, which I am currently trying to get over a flare that put me back on steroids. I did find out I have been experience fibromyalgia pain, suck painful stuff, my goodness. It really sucks, I had gone 2 years without any big flares, but now lupus is trying to knock me down, but I am fighting back with all my strength! Right now I am organizing the Walk for Lupus Ontario in Mississauga, trying to do whatever I can to raise awareness. Lupus won’t win!
#lupussurvivor #lupusfighter #livinglupie