This is Abby’s Story

I was dealt a hand that has often made my life difficult - yet at no point have I ever felt like a "victim" of my psoriasis. I have a blessed life and part of my blessed life revolves around my psoriasis. In many ways, psoriasis has made me who I am and because it is the worst thing I have to deal with in my life, I am lucky! If I can tell my story and inspire just one person, it means I have helped at least one person and that means a lot to me.

I read the Quality of Life Assessment of Canadians with Psoriasis and it made me cry. I have very rarely in my life felt embarrassed by my psoriasis. Don't get me wrong, I am very emotionally affected by my psoriasis, but have never felt that I had something to be ashamed of, or something to hide. I am a beautiful person, as is everyone else in their own way - psoriasis or not - and to read that so many people are embarrassed by their psoriasis made my heart hurt.

When I was a kid, my grandfather would always tell me to put on long pants, or long-sleeved shirts and I would fly off the handle! This started from age ten. I would ask him, “Are you embarrassed of me?”, because for me, I had nothing to be embarrassed of! To my grandfather, this was his way of protecting me from all the people who didn’t know, all the people who stared. He was not embarrassed but desperate for me safe and “normal”.

My story begins in the summer of 1992. I try, even now, to think of what could have started my life with psoriasis, but there was no trigger. It started slowly, without much concern. It was summertime and I was a kid who loved to get dirty and hated brushing my hair. I’d ride bikes for hours, so the three spots on my hand that developed, could have been just about anything! When the spots started to spread, I told my mom that something was wrong and thus began the search for a diagnosis.

It was psoriasis, they said, guttate psoriasis - little bumps…itchy little bumps!

I was taken to the number one specialist in Winnipeg, which pleased me. However, it was because of this doctor that my psoriasis flared in a way that even now, when I think about it, makes me feel upset. I was given an alcohol-based lotion and sent to do UVB (ultra-violet B phototherapy). I went for the first treatment, which was thirteen seconds in the UVB machine. If only I had known then, what I knew a few years later. UVB treatments, especially for children, fair children, who have never been treated this way before, should start off at six to seven seconds. I was badly burned and became sick, as though I had sun stroke.

The only lotion I had from the specialist was an alcohol-based lotion, which was promptly rubbed on my aching flesh. I can still hear myself screaming if I think about it, but I don’t like to - no child should suffer like that. Almost immediately my skin reacted. I became feverish, my psoriasis became thick and hard with a layer of puss underneath it so that when I moved, my skin would break and weep. I couldn’t walk. If I wore clothes they would stick to my skin. I was in constant pain and agony. This was the first time I was admitted to the hospital.

I spent a week in the Children’s Hospital in Winnipeg. During that week, I spent most of my time in the bath or being lathered in petroleum jelly. FYI, petroleum jelly is not the most forgiving spread, and it would tear my skin when it was being applied; but, at the time, there was no alternative treatment. This was it and I dreaded it every time.

My mother is a rock! As I said before, no child should suffer and my mother had to watch her baby cry and scream in pain. I still have guilt about that. When you grow up and see that it truly hurts those who care about you more than it hurts you, it’s hard to think of how she must have felt.

My mother is the most amazing woman who has ever lived and to know that I have made her hurt so deeply is very upsetting to me - I know that she would give her life for mine. I always knew I'd be okay, but it was because of her that I fought so hard to be okay. I am grateful for her and lucky to be her child.

In the hospital I met other children and I believe that this is where my intense positive nature comes from. I spent much of my time with kids who were dying. I, on the other hand, was not dying - I was lucky. I spent time with a young girl who had been burned so badly that she had no fingers, no face, no ears, nothing. She was mangled by a fire. She taught me how to draw with my mouth and even at ten years old I knew that I was lucky. I knew that no matter what was thrown at me, I was lucky, and had nothing to be ashamed of. How could I feel sorry for myself if these children I was around were dying? The girl who was burnt never had visitors. My mother never left my side, and I knew I was lucky.

The next few months were spent at home because psoriasis ravaged my body. It went in cycles: first, my hands swelled and broke open, and then my nails fell out. Next, my feet became cracked and full of puss until I couldn’t walk. My skin was reproducing so fast that I was always tired and hungry. This is when I met the most amazing man, Dr. Richard Haydey. We ate carrots and ranch dressing together on my couch and watched ‘Full House’ on TV. He came to my house from then on until I was able to go to his office. He is the gentlest, kindest soul I have ever met to this day. He was the first person who truly helped me and my family with regards to my psoriasis. He helped me understand my disease. He spoke to me even though I was only ten. He would take my hand so gently and so softly to look at my nail beds and palms, and he would talk to me in the most soothing voice. I knew that this person wanted the best for me. He made me feel like I was his friend.

Two years later, he got me a spot at Women’s College Hospital in Toronto to see Dr. Ricky Schachter, which lead to two weeks of coal tar and UVB, many scalp treatments and repeated viewings of "Mrs. Doubtfire". When I came back to school after my hospital stint, my friends and teachers completely supported me. I was extremely lucky to have such incredible people in my life. I was always accepted and never made fun of. I was once called “Scabby Abby”, but my teacher, Mr. McIvor, heard the boys call me that and he went crazy! They were in big trouble and I thought it was the least creative name I’d heard. Everyone treated me the same, there was no difference. It was my regular same old life again, until I was outside of my community.

When I stepped outside my close-knit community of family, friends, neighbours and teacher, I was gawked at, pointed at, whispered about, and discriminated against - mainly by adults. This helped me develop many ways of dealing with this kind of stupidity. Or, I would politely try and explain what my ailment was, but sometimes I would yell at people for staring. These stares came from the psoriasis supporters as well, who were the funniest of the gawkers. The people who would say," Is that psoriasis? I know what will cure you!" or "Oh you poor thing, how do you live like that?” and ” How can you even stand it?" To them, my response was easy, "What choice do I have?”

After my first hospitalization, my doctor tried many things to get my psoriasis under control. I used coal tar, the stinky treatment which, really only makes you smell bad and turns your skin green. I was on sulfa drugs and anti-inflammatory drugs for many years and went for weekly blood tests to make sure my liver wasn’t failing. I went daily for UVB treatments, chauffeured by my grandfather. In the years that I spent going to UVB treatments, my grandfather and I developed an amazingly deep and connected relationship; without psoriasis, I would not have had that. He is one of my best friends and another person in my life who always made me feel beautiful. He was my advocate and in that way, I am again lucky.

I hated all the treatments. I stuck to them for as long as I could but usually I would give up. It was easier not to do the treatments that didn’t work anyway. As I got older my psoriasis grew with me. It never went away. In the summer it would be better, my legs were always the worst and even sunlight didn’t work on them. I tried many different "cures" but they never worked and sometimes made my skin worse. Old wives’ tales were big in my attempts at recovery. One was to wrap yourself in eggs or bathe in oil and vinegar - that one actually does help to soothe the skin (one cup vinegar and a quarter cup olive or vegetable oil). I also used sour cream or oatmeal. I drew the line when my grandmother told me that she had heard on the radio that if you put urine on your psoriasis it would go away. Yeah right! I actually tried it once, but it was so gross that there was no way I would do it again.

When I was 22, I lived in Israel for six months. Nearly instantly, my skin was better there. I just felt better. I spent two weeks at the Dead Sea and realized that if we could have places like this in Canada, people who suffer from psoriasis would at least have another option. It is not a cure but it certainly helps. Using Dead Sea minerals, and having the ability to relax and be pampered with treatments for your skin, can make a huge difference in your physical and mental state. This, in my opinion, is a huge part of psoriasis care.

I began seeing a naturopathic doctor in 2006. She was originally a medical doctor who had been practicing holistic medicine for many years. She gave me all these different tinctures to take and told me that we were going to drive the psoriasis out of my body. She said it had to come out before it would get better. I no longer used topicals; I used tea tree oil and baby oil. My skin got a little better and then stayed the same. All through the winter, my skin didn’t get worse - it was amazing! As spring came on, my skin was still amazing, until suddenly it flared so badly that I was out of commission for nearly six weeks. My sores were becoming infected; new ones were opening and weeping so badly that my clothes looked wet. I went to see Dr. Haydey and he was terribly upset. My skin was awful; it hurt, and was badly infected. I promptly went on antibiotics. When I told my naturopathic doctor what was happening, she told me that it would get worse before it got better. She said that because I had had it for so long, it would take a long time to get rid of it, probably with many flare-ups yearly. I thanked her for helping me and walked out of her office. I am no fool! It was hard enough living with psoriasis - I didn’t need a treatment to be even more detrimental to my health.

Tea tree oil is very soothing, but dabbing it on open wounds was really not helpful. After that, the flare-ups on my legs were terrible. At times they looked purple and I was getting small pustules. I often had pustules as a child, but as an adult I rarely had any, so their presence worried me. My skin improved slightly during the summer, clearing my upper body. I decided to go out of town and went on a camping trip with my friends. When I returned, I felt quite sick, but didn’t have anything specific. I often don’t feel well and have always assumed it was psoriasis-related. It was right before the August long weekend and I’d been feeling really crappy all week. I had swollen lymph nodes and was exhausted! My family went out to the lake for the long weekend and I joined them. I spent the day feeling sick and decided to go to the local hospital the next day. The doctor told me I had lymphitis (swelling of the lymph nodes), that I should take advil, take it easy and it would go away on its own. That night I was out with friends and one of my friends noticed that my psoriasis was literally climbing up my neck right in front of his eyes. Since I felt so sick, I decided to go home. My neck and forearms were covered in psoriasis when I got home. I had been clear earlier that day. I told my mom and we decided that if it was worse tomorrow; we're going to the hospital in Winnipeg.

That morning I woke up and my face was covered, and my arms were getting worse, so off to Winnipeg we went. By the time we got to the hospital, which was an hour away, my body was completely swollen and red and only getting worse. I have never felt so much pain in my life and believe me I am highly accident-prone, have been injured and have had my gallbladder removed - this was like fiery rakes scrapping off my flesh, literally. Within hours pustules developed on my hands. The doctors didn’t know what to do with me and had very little knowledge about psoriasis. My emergency doctor came in and told me that he'd never seen a rash like this, that I seemed to have what looked like an HIV rash, and asked if I was sexually active - amazing bedside manner. He then proceeded to tell me I was probably lying and took a punch biopsy of my leg. My skin was starting to fall off at this point and I was moved to a room.

They were so ill-equipped for me that I kept begging to go to the burn ward. At least there they have an idea of how to deal with me. It was a daily fight to get the doctors to give me pain medications. They put me in a room with another person, which was dangerous because at this point I was so infected and unstable that if it got worse it may have been fatal. They knew nothing of my condition and if it hadn’t been for my intern, who happened to be a childhood friend, I may not be here today. She went out of her way to make me comfortable. When psoriasis gets so bad, it needs moisture; however, there was no bath on my floor. I could barely walk and couldn’t sit in a wheelchair, so every day, my best friends Miles, Rachel and Heidi would take me to the bath with my mom. Sometimes Miles would come alone and take care of me so my mom could have a break. My friends supported me so wonderfully I am forever grateful to have such amazing people in my life.

Near the end of my stay in hospital I begged to go home. They weren’t helping me and everything was a production. I was sick and wanted to be at home. My skin was starting to blister and swell and sheets of flesh were peeling off. I say flesh because it wasn’t thin layers of skin, it was chunks. My skin was dying. The smell that I associate with my first hospital stay, the smell of rotting flesh, was present again and for quite some time thereafter. I looked like the walking dead.

After I was home for some time my skin continued to peel off very much like the first time I was in the hospital, so many years ago. It went in stages: my nails fell out, my palms and soles of my feet literally came off in thick hard pieces of skin, my hair fell out and my skin continued to fall off me. My doctor, Dr. Haydey, came to see me again. This time he said that, after 15 years of being my doctor, he wanted me to see Dr. Marni Wiseman. I was so sad. I felt like he was giving me away, but it was the best decision. He was doing what was best for me by giving me someone with a fresh perspective. Dr. Wiseman immediately put me on cyclosporine; however, it made me violently ill. During my treatment, I started the wonder drug Amevive. Although my struggle is still continuing, I have been on Amevive for nearly two years off and on and my skin is the most controlled and comfortable it has ever been. I now know better than ever before what my triggers are, which is a huge help. I have modified my diet and have started doing things proactively because I know that I am the one who controls my own life and destiny.

This is my life and giving up isn’t an option. When crappy things happen, you deal with them. That’s life and we learn to cope. For me, however, it went beyond coping, because coping isn’t good enough. I accept my psoriasis with an open heart - it’s a part of me like my eyes, elbows or toes. It doesn’t mean I have to like it. It doesn’t mean it defines me, but it is a part of who I am and I am thankful for being able to have experienced this, because it has made me a better person. It has made me funny, made me kind, made me gentle and compassionate. My life with psoriasis has been amazing, same as a life would be without psoriasis, just better. Better because I am truly grateful.

Tell Abby your story, here