Are you who you want to be?


Are you who you want to be?

Avid reader, I must confess, I’ve lost my mojo. Not sure what my deal is, but for someone whose career did a 180 (or came to a complete halt, as the case may be), I am BUSY. Like, CrAZy busy. I’m not complaining, but I look at my (kick ass) planner and just wonder how any of this would be even possible if I were working full time.

It’s been a whirlwind of amazing opportunity after amazing opportunity, and somewhere in between there have been SOOO many doctor’s appointments, sometimes 2 in one day. I’m exhausted, but still managing to keep on truckin.

You may recall in early June, I participated in a roundtable event, Medical Marketing and Media Leadership Exchange: How can pharma think more like a patient? as the patient voice at the table, bringing perspective and opinions on what I feel pharma is both excelling in and lacking on to be better “patient centric.”

The event was hosted by Artcraft Health, and a few weeks ago they reached out and asked me to SPEAK AT THEIR ANNUAL COMPANY MEETING. Yeah, you read that right. The girl with tampons up her nose and who drops f-bombs entirely more than any one person should, was asked to be a guest speaker.

Mind. Blown.

I won’t get into the road rage induced anxiety caused by the TWO (separate accidents) over turned tractor trailers I encountered on my 80 mile drive up (and I left two and a half hours early!), or the fact that I wore heels much too high for someone with osteoporosis in her hips and spine (beauty is pain, people!), but rather about my talk. They wanted to know about ME, my experiences and journey, if you will, as a patient. The good, the bad, the ugly. And goodness we know there is a lot of ugly!

I was upset I arrived late, but, the show must go on and the meeting was in progress by the time I finally got there. Before I knew it, I was introduced by Marc, the Executive VP and General Manager, and all eyes were on me.

As I said, my talk was about ME. Sometimes, it even blows my mind that I have spent my entire life as a patient, so there was a lot of ground to cover – twenty-nine thirty-two years, to be exact. I have no recollection if I spoke too fast, not loud enough, or if I stuttered every other word (lupus brain!), but every sentence or two, I would look up and meet the eyes of someone, and I was shocked to discover everyone was engrossed in my words. Listening intently on what I had to say, and I can’t express how empowering it was for me.

I said my last sentence, and one by one, they stood on their feet and clapped. A standing ovation. For me. And I’m almost certain there wasn’t someone behind me (were you, Shuana?) holding up a cue card that said “APPLAUSE.”

Again, I was floored. I wasn’t sure if I was supposed to bow, curtsey, or do my best Kate Middleton wave. Instead, I sat there like a deer in headlights, a big grin on my face and blushing profusely!

There was time for questions and answers, and I expected maybe one question. Well, color me stunned, there must have been at least 10 questions. Insightful questions that could have only been asked if one truly listened to what I had to say. I think my favorite question asked was how I keep track of everything, to which I laughed and replied, “I have no idea.”

Jokes aside, I have a very good planner and an OCD method of recording any new symptoms and/or questions for my physicians, all 9 of them and counting. That said, it gets rather daunting.

A woman about my age raised her hand and told me her best friend was recently diagnosed lupus, and has spent a lot of time extremely ill and in and out of the hospital. She asked if she could pass along my blog to her friend.

And that right there made it all worth it, to be able to reach that one person in my same situation. This shitty disease has taken away so much from me, so many experiences, and has rewritten every single chapter in my adult life. Am I bitter? Of course, to a point, yes, I’m human. I don’t ever think anyone has it “sooooo much easier,” but, I get green around the edges when I see someone enjoying all the things in life that I wanted for myself. But there’s no point to dwell, because I can’t change anything.

So, I find myself making light of all of this. To make jokes (hello, tampons up the nose.. are funny), to empower, to educate, to have a hand in making changes, to inspire, to share my story to anyone crazy enough to listen, and to show that is all doesn’t have to be so bad.

To everyone at Artcraft Health, thank you for allowing me to be a part of your meeting, I consider it a huge honor, and I hope I was able to bring insight on how to better reach the patient. Marc, thank you for being so incredibly welcoming. Shauna, thank you for having the confidence in me to get up and do this. And the chocolate, where can I get that chocolate? Katie and Lynn, I’m certain you had a hand in this. Thank you.

Love you all!

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