September is National ITP Awareness Month. I’ve known about this platelet disorder since 2005 when I was diagnosed with it (and I recently wrote about it here). But never have I been so keenly aware of my own lack of platelets than earlier this month after completing the Dirty Girl Mud Run.
The day was a ton of fun. My friend/fellow writer Amanda Usen and I formed the Dirty Word Girls Team and completed the non-competitive 5K mud and obstacle course in about an hour and 15 minutes. We ran, we laughed, we shivered in the cold rain and we brainstormed plot twists for our Works in Progress as we climbed a 14-foot cargo net, shimmied through mud pits on our bellies and scaled over slimy wooden walls of various heights. The backs of our shirts read WIP It Good, and for good reason!
As I waited my turn at the highest and hardest obstacles, I thought about the other women surrounding me. I knew some were breast cancer survivors. Although many of the height obstacles had lower, easier options with no lines, no waiting, I found it very telling that most of the Dirty Girls patiently lined up to challenge themselves to the biggest, the hardest obstacles in front of them.
I was no different. I have a disease, a quiet roller coaster of a disorder that zooms up and down with no rhyme or reason. Sort of like Space Mountain, because you can’t see it, and you don’t know when the drop is coming. I have to live with ITP, but I don’t want it to rule my life. My hematologist had given me the green light to complete the run. My most recent count was 39K, which is my average “normal”. (Normal counts for people without ITP: 125K – 450K) So up the walls I went. Over the top. Victory!
There was a high in crossing the finish line. Amanda’s awesome husband Ben had braved the rain and cold and was there to take pictures at the end. But as we were hosing off the mud, surrounded by other happily chatting victors, I noticed my shin swelling up: Hematoma City. Panic began setting in, as cold, thick and uncomfortable as the mud. Shit. I have ITP. I could’ve fallen on my head. What was I thinking?
The hematologist on call assuaged my fears. He listened patiently to my ramblings about my actions: I’d just done a fun-run for charity, a non-competitive 5K, etc. But there were obstacles, and I had banged myself up. I heard a pause on the phone line. “Were you a Dirty Girl?” he asked, humor in his voice. Yes, yes I was. A crazy Dirty Girl who was now a scared Dirty Girl. He assured me that at 39K, I was bound to see some bruising with that level of activity.
Ironically, my shin healed with barely a mark. My thighs, however, looked like Barney the Dinosaur’s. Well, maybe a bit more shapely. And darker purple.
Should I have aimed for the smaller obstacles? Maybe.
Am I sorry I did the race? Not really. It wasn’t the race that did this to me, it was myself. The courage, the doubt, the elation, the fear. It’s the same roller coaster, whether I am knee-deep in mud or sitting in front of this computer. It’s ITP. I have to live with it, but I have to respect it and be sensible about it. Ditto with life.
Tomorrow is Sport Purple for Platelets Day. Please consider wearing the color purple tomorrow to raise awareness of ITP. It’s a blood disorder way more common than hemophilia but way less people have heard of it. My bruises have healed…but I plan to wear purple on the outside, and tell people why.
I’m even more impressed now that you did the run than I was before. And your column is now bringing awareness to this disease. Kudos.
Thanks, Helen! I hope my ITP stories help those wanting to know more about living with this disorder – those who may have heard the stats and facts but just want to know about daily life with ITP.