The story of Julie
For the past 11 years my morning ritual started with opening the cupboard door and taking out my packet of immunosuppressants. For the first five years after being diagnosed with Pemphigus vulgaris it was Ciclosporin. When prolonged use started potentially to cause liver damage I was moved on to Azathioprine. It’s hard to explain the relationship one has with a drug that is keeping you alive but also potentially damaging parts of your body. It’s a love/hate relationship. I need you. Please keep working. The alternative is pain so excruciating it’s beyond words. A four night hospital stay showed me that, when my mouth, nose and airway was so swollen and riddled with open sores it was getting difficult to breathe.
Today I open my cupboard and you aren’t there. I’ve been in remission, drug-free, almost a year now. You aren’t completely out of my life. You have been demoted to another cupboard, tucked away in a bag with boxes of Prednisolone, also now not needed…just in case…because remission does not mean cured. Pemphigus vulgaris is a life sentence.