Because if you have an autoimmune or chronic condition, the likelihood is that I have been where you are.
When you were diagnosed, were you scared? Bewildered? Confused? Angry? Numb? Did you feel helpless or stupid? I was too young to understand completely, but I remember clearly how angry I was. Very angry. Furious. I didn't know then that it was a defense to cover helplessness. It was so big. DIABETES (it always seemed weird that it's never capitalized in print). I didn't know what it was, how it worked, or what it meant for the rest of my life. Everything was changing. I thought, what do I do now?
There was other stuff, too -- subconscious stuff. I didn't realize it until recently, but I also felt a deep sense of betrayal. It makes sense. What's worse than when you betray yourself? And what else can you call it when your body turns on you and literally attacks itself? You are supposed to be able to trust yourself more than anyone else on the planet, right? But you can't. Nothing works like it's supposed to anymore.
My situation was made even worse by the fact that I thought I had already paid my medical "dues." You know those commercials for the meningitis vaccine? I had that. Eight years before my diabetes diagnosis, I got B strep meningitis. I was the only kid who survived it that year, and even then I ended up in a wheelchair for 18 months. It was only through my family's support and sacrifices that I won that vicious, ugly war.
It was a real slap in the face to realize that wasn’t the end of it, that instead of winning a war, it had just been the opening salvo, a mere battle in a conflict that would last the length of my life.
Decades later, it makes me sad sometimes to think about who I might have been if I had been healthy. Then I think about how far I've come. Yes, my conditions (I have several now) are hard. Inconvenient. Time-consuming. But I like the life I have and the person I have become. I am proud of the strength that came from the crucible of my medical issues. I am grateful for the relationships I have, every one of which is worthwhile and valuable (you tend not to waste time on superficiality when your time and energy are limited). And maybe, just maybe, I have learned enough to trust myself again.
So, why this blog? I want to use my experience and contacts to arm you with the tools you will need to navigate both your condition and our ridiculously complicated healthcare system. I figure that if I can help just one person avoid my mistakes or come through the low points better than I did, I can consider this a successful venture.