The Power of HealtheVoices15

HealtheVoices 2015

HealtheVoices 2015, Photo Courtesy of Janssen

I started Blood Clot Recovery Network nearly three years ago after suffering from a DVT and subsequent PE that nearly ended my life. My doctors told me I was lucky to be alive. My family told me they loved me and most of my friends told me nothing except, “Get well soon.” I told myself that for all intents and purposes, my life might as well be over and it would never ever get any better than it was during those initial weeks and months of recovery. Everything hurt, everything was hard, I couldn’t do anything that I loved (like run) and to top it all off, no one understood what I was going through. No one understood me. As a result of my own frustration, fear, panic and isolation, I vowed to find a way to let others going through the same situation know they were not alone. And, I knew there had to be other people like me.

Little did I know, for all the success I had gained in helping others, I was becoming very isolated. It’s difficult to help others through recovery when I am still moving through it myself and managing a blog, a Facebook Page, Facebook Group, Twitter profile and countless messages (not to mention a full-time job and family) is time-consuming, often draining and sometimes heartbreaking. At times, it is like reliving the horror of what happened to me because I can relate to so many of you. I can’t move on completely, I won’t stop talking about it and it keeps me up at night sometimes. Still, I knew I didn’t want to give up, but I also felt like I had no tools to understand and process what I was feeling.

So, I stepped – uncomfortably at best and only with the encouragement of a waiter who was holding the most beautiful shrimp cocktail I have ever seen in my life – into a room full of other people I had never met, in a city I had never been to (naturally, right?!) and squeaked, “Hi, I’m Sara and I had a blood clot, what’s wrong with you?” Or, something like that. It was awkward, it was strange and it pushed me out of my shell, which is actually pretty prevailing in person. And, I never before had the chance to be Blood Clot Recovery Network in person. It was awkward, it was strange and it was uncomfortable, at best. What was I doing? I suddenly knew nothing about blood clots and was having trouble sharing my story out loud. What was I doing, again?

I was attending HealtheVoices15 Conference, hosted by Janssen and Everyday Health, which is an event that was created to bring together online health advocates – when did I become that in person – to discuss, share, learn and inspire one another to continue doing what we do every single day. And, when you think about it, what we do is pretty big, as Clare Martorana Executive Vice President at Everyday Health demonstrated in her opening speech during dinner. We bridge the gap between doctors visits, put health headlines into perspective, create patient advocates, help doctors give their patients better care, help caregivers as well as patients and connect with patients 24/7 – and we do it all with humor and for love, not money.

It hit me like a ton of bricks when Clare mentioned BCRN as an example of bridging the gap between doctors visits during her address. Maybe what I do really does matter. Actually, it hit me like 72 pairs of eyes around the room staring at me. I went to bed that night feeling grateful, content and excited for what was to come the rest of the weekend.

After breakfast Saturday morning, the event kicked off with an empowering and hysterical lecture (although one could hardly call it that) by ZDogg MD. Okay, if you have never heard of him (I hadn’t) you need to find out who he is now. In short, you will laugh – a lot. In length, Dr. Z (a.k.a ZDogg MD) is a doctor turned rapper who is changing the way we are thinking about medicine and patient care at Turntable Health in Las Vegas, Nevada, of which he is the founder. Turntable Health is knocking down barriers that make no sense by changing the way we treat patients by doing things for them, not to them. They’re scrapping traditional medicine to take care of the patients and make people say wow. You will, trust me. And, again, when ZDogg – diagnosed with a blood clotting disorder himself – recognized BCRN as an essential resource for patients recovering from blood clots or treatment (don’t worry, I tried to smile and waved uncomfortably back to him on stage this time), I suddenly knew I was making a difference. I was making a difference in the lives of people I didn’t even know about. Affirmation is a powerful thing. Community and strength in numbers are an even more powerful things. Putting people with aligned visions to make a difference in the lives of others in the exact same room is the most powerful thing.

I stopped being afraid after ZDogg’s session. I started talking to people. I started telling my story, for real, without barriers. I felt safe and among friends. People who got me, didn’t expect anything out of me and for once in my life, understood just what I meant when I said I needed a minute, needed to sit down, prop my leg up, stand up or take a walk around. In fact, maybe they didn’t even understand exactly why, but it didn’t matter. They were like me. They were hurting, they were broken and they were unimaginably unwavering in their battle to survive, prevail and make a difference in the lives of many. I met and shared an immediate connection with Jill of Get up and Get Moving; Beth of Invasive Duct Tales, Brian of A Marine and HIV as well as Debbe of Atrial Fibrillation Support and Melanie of StopAfib.org, who also represented the cardiovascular community with me.

Mellanie, Me, Debbie and Melissa

Mellanie, Me, Debbe and Mellisa

After I connected, I decided to learn as much as possible. My favorite small-group discussions were with Jenni of Chronic Babe (again, if you don’t know who she is, you need to) who has made a life and a business of surviving and thriving despite chronic illness and pain and is helping others understand how to do the same. She’s funny too and extremely empowering when she speaks. From there, I learned about compassion fatigue (emotional burnout of patient advocates, physicians and caregivers) with Dr. Brian Koffman and Six Until Me Blogger Kerri Sparling. I learned about the cost of caring (fatigue, depression and overworking to name just a few) and I learned that I am enough.

And, at the end of it all, I jumped on a [subway] train from NJ to NYC and made my way to Central Park, somewhere I have always wanted to go. Three years ago, I didn’t want to leave my house. Three years ago, I would have never of navigated the subway system by myself. Two weeks ago, I did. It was terrifying, it was beautiful, it was real and it was absolutely invigorating.

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South Central Park, NYC

There’s so much more to come about #HealththeVoices15. So much more. What I really want to say is I am extremely grateful for the opportunity to attend this conference. Janssen paid for all of my expenses, including travel, and took care of everything I needed while I was there. I was nervous about attending a conference hosted by a pharmaceutical company, mostly because I did not know what to expect or what was expected of me. This conference had absolutely nothing to do with medication or with pharmaceuticals at all. This conference had to do with a progressive and utterly compassionate company that chose to bring health advocates together, in the same room, to discuss health topics and diseases that are effecting lives on a broad scale. This conference was about recognizing and then addressing the need to provide online patients advocates with support, resources and connections needed to continue making a difference in the lives of patients. I always knew I wasn’t alone. What I didn’t know was that I was empowered to continue making a difference. I left HealtheVoices completely energized to keep doing what I do everyday – make a difference in the lives of those suffering from DVT and PE. I left HealtheVoices with a purpose, validation and the realization that I do matter and my work here matters – a lot.

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There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

 

Comments

  1. Cathy L says

    Sara, What a fabulous report on this conference. I’m going to go look at all the links you included and the people you think we should know about. That you were embraced by this group and they helped you feel that you are making a difference is gratifying. Everyone that has participated in BCRN in any way knows and will tell you you’ve made a difference in each of their lives starting with the relief one feels when you find this blog and continuing with the supportive comments and encouragement you give in just the right tone and words. It is also gratifying in this post to hear of a pharmaceutical company who is very caring. I worked for a Fortune 100 company that had very high integrity in everything they did so I know there must be pharmaceautical companys out there that have the passion of caring. Thank you for sharing your struggles with the parallel task of your own recovery and your sensitivity to what others are going through. Thank you on so many levels. Cathy

    • Hi Cathy! Thank you so much for your kind words, I really appreciate what you have to say! You are welcome. Thank you for reading and for encouraging me, and also for remaining an active member of this community. It is people like YOU who have made BCRN what it is today. So, it is me who is saying thank YOU. Talk to you soon.

  2. Sara,
    First: I want to say that you have made a huge difference in my life. Not just the forum, the network, the online info source and support that you’ve set up… but YOU, Sara, just the way you are, the way you operate — that has a profound impact. You bring kindness, lightness, substance, respectfulness, thoughtfulness and so much more. Thank you for being you.

    Second: I’m so glad you can lean into the support you got from the conference, and it sounds like you will continue to get. It’s so important to have allies when you are up to big things. (Which I believe you are!)

    So, really, I want to say: GO Sara! 🙂

    • Hello Martha! Thank you SO much for what you had to say. It really makes a difference in my life to hear you say that. I have a huge smile on my face this evening reading the comments on this post. Sometimes, you put a lot into a post and then it seems that no one reads it. I am so glad people are reading this post. Your words are thoughtful, caring and encouraging – thank YOU. I am so glad to have you here. Keep in touch, Martha!

Trackbacks

  1. […] – and I could not be more excited about going. I was fortunate enough to attend the inaugural conference last April as the only VTE patient advocate and this year, I was invited by Janssen to not only attend, but to […]

  2. […] to people just like you, who are reading this blog. I was fortunate enough to attend the inaugural conference last year and was on the Advisory Panel this year. Janssen graciously paid for my travel and accommodations […]

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