I don’t know about you, but I think that not only is recovery brutally slow, at times painful and almost as scary as the blood clot itself, but also funny. Not funny in a laughing sort of way, but funny in a way that makes you see things differently and question the bigger realities in life. The things that once mattered, might not and the things you never paused to consider, now become the most important things to you. I like to call it a heightened since of awareness. Physically, emotionally, spiritually – good or bad – I feel like I am living in a constant state of heightened awareness. The bad is worse, the good is better and the fear is real. While some things are beneficial like a greater appreciation of the fragility of life, others wear on me like my short fuse and lack of patience with other people. I often find if I am talking to someone I either don’t know or haven’t seen in a while, I feel like I am talking from afar to them. The simple how-do-you-do’s and how-can-I-help-you-today just don’t add up. I don’t make small talk well anymore – maybe because there’s no time for it or maybe because it pains me to know there are bigger, more important things we could talk about. So, let’s talk about blood clots.
While I can’t just walk into a grocery store and tell the cashier to read up on the symptoms of DVT and PE (okay, let’s be honest, sometimes I really do wish I had a fact card to hand out to everyone I see), if you ask me how I am or what’s been on my mind, chances are it’s blood clots. Even if I were to tell some people, they don’t understand, won’t understand or can’t understand until (or if) it happens to them, which I hope it doesn’t. That is partly why I wanted to create BCRN, to build a community of survivors, advocates and loved ones to talk about blood clots and their effects (so, feel free to talk). Sometimes I do talk about what’s on my mind to the stranger or person I haven’t seen in a while (especially when they comment on my bracelets) and then I watch them fade away, undoubtedly wishing they hadn’t asked. The pedicurist was not thrilled to be a captive audience for 30 plus minutes while he scrubbed, washed and polished as I told my tale.
It makes me sad and angry. I feel like I can’t do enough and I wonder, does anyone else who has survived what I have feel this way?
Then, I happen upon an article or two – and see it is from a major media outlet – about DVT’s and think, slowly, but surely the word is getting out. Like this one from CBS online, posted yesterday:
I highly suggest you read the entire story, as the author’s experiences and sentiments echo several of my own.
Truth be told, I know people get tired of me personally talking about blood clots all of the time – if you tell me my toes look pretty I will tell you they are painted burgundy for APS Awareness #GoBurgundy Campaign. When – and if – you ask about the campaign, you will get a sermon about blood clots. That’s just the new me.
Share your story. Do you talk about blood clots often? Do you feel like you are doing any good? How can we help get the word out? What stories have you seen in mainstream media?
There is hope for healing and you are not alone,