I remember the day I got the diagnosis. I remember the phone call, you have autoimmune vasculitis. Come back tomorrow and we set out a treatment plan. Gosh, I was so happy. It has a name! I am real! I will live!
All giddy, I called R at work and he took the next day off from work and after the appointment, we took the slow road home through the foggy winter wonderland along the river. We stopped for lunch somewhere fancy and laughed and he was all calm when I cried a bit.
I remember when the doctors explained the medicines and the side effects and what I needed to look out for and what I must avoid (trivial stuff like no grapefruit, no alcohol, no ibuprofen, no aspirin . . .) and so on. Oh, never mind, I thought. What's a bit of hair loss, weight gain, moon face, nausea, maybe liver damage, possibly gastritis and a lot of other stuff with complicated Latin names like gingivitis and stomatitis - compared to lung and/or kidney failure or death? You couldn't possibly argue with that.
Luckily, I am still waiting for the hair loss and the weight gain or the moon face. I have more or less accepted that bitchy gastritis and I let my GP worry about the liver values going up and down. But there are nights when I lie awake and consider my future life stretching ahead for years and years with painfully inflamed gums, always the taste of blood and the feeling of my mouth being on fire. And that, I admit, is the worst. At night anyway.
And now for some soppy music from the boy from Monkstown, a place that once was home: