13 Oct YOU ALWAYS HAVE A CHOICE

“Life is 10 percent what happens to you and 90 percent how you react to it.” – Lou Holtz

When I think about my life, I think of it as chapters of a book. Some chapters I want to read over and over again, such as getting engaged, getting married, and completing my Master’s degree, but some I want to skip over and never open again.

May 18, 2014 – I married my best friend, the love of my life, Jonathan. That summer I was completing my Master’s and ready to embark on my future as a wife and as a professional. A few months before our wedding, I started developing sensitivities in my mouth, had extremely red gums and cut up lips. This discomfort came and went and was thought to be associated with the stress of finishing school. That winter, my gums were not healing and I was developing cuts in my mouth. Nothing made sense. Then, in February, I noticed blisters on my back, which was a sign that something was definitely wrong. Weeks later, these two blisters multiplied and eventually spread to cover my scalp. In April, I had a skin biopsy and was diagnosed with a rare autoimmune skin disorder called Pemphigus Vulgaris (PV), where blisters form all over your body. As a result, I was put on a high dose of prednisone with the hope of gaining access to a biological infusion treatment.

My life had thus been significantly altered. Blisters forming all over my back and scalp, as raw sores, resulted in a loss of autonomy. I lost close to 30% of my hair and I was no longer able to wash on my own due to the pain. I had to cover my back with bandages and cortisone cream.

My husband couldn’t hug me. My family and friends couldn’t touch me.

By June, blisters covered my face. This became debilitating to my regular routine, as I was susceptible to serious infections with these open wounds. The prednisone caused my body to swell, and I developed a moon face. Fortunately, at the end of July, I was eligible for my first infusion, and my second treatment two weeks later.

While prednisone enables me to combat my illness, it is actually not an ally due to its effects on my body. Having to take prednisone is like living with a monster inside of you: a virus that robs you of your happiness and deflates your self-confidence. My mood on prednisone is like a fast-paced roller coaster; a nauseating ride that you want to come to an end.

Some days have been harder than others and although I am on the path towards recovery, my journey is not yet over. Since very few people actually understand how I’m feeling, it sometimes seems easier to cry or stay in bed and abandon myself, but I know that doing this would not change my illness, my circumstances, or my reality.

I knew I had to react to PV with a positive attitude, despite my limitation of having to stay away from crowded places filled with people and germs.

I could have succumbed to this illness, used it for pity, and isolated myself from the world. Little me is now totally blown up and distorted, but I have chosen to view PV as a life experience. Although no newlywed couple should be impacted by an unfortunate disease, I believe it has only made my marriage stronger. Jonathan says I have been a trooper, but he has been a saint for dealing with me. In addition, it has enhanced my relationship with my parents, especially with my mother, as she had to physically care for me when my blisters were impossible to bear. It has also enabled me to value my friendships. Without this support system, this experience would have been that much more difficult. Most importantly, it has changed my perspective on life and has opened my eyes to what my true priorities are and should be. Without my health, I can’t do anything. It has enabled me to develop requisite coping strategies for my anxiety and stress. PV gave me the opportunity to grow into a stronger and better person.

According to Wayne W. Dyer, “With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose”.

-Tara Saxe