HealthEVoices16 (Why It’s Kind of a Big Deal)

HealtheVoices16 Intro Cover

It’s no secret — especially for those who know me in person — that I am terrified of flying on planes. It’s also no secret that my fear doesn’t stem from long periods of sitting that may contribute to my blood clot risk – I really don’t think about blood clots when I am flying, even thought I regularly stretch my legs and request a Pre-Boarding Pass so that I can get an aisle seat. My fear is rooted in the fact that I am not in control of the plane, nor am I in control about what happens to it. Lack of control — combined with the fear of the unknown — will keep me up for days prior to any plane travel I have scheduled.

ae945163-1d80-44d0-97b1-5bbb85604e2eYet, in less than one week, I will board a plane to travel to Chicago for the 2016 #HealthEVoices Online Patient Advocacy Conference – 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 be a part of the planning committee as well. Janssen is graciously paying for my travel (flight, ground transportation) and my hotel stay while I am there.

So, you might be wondering, aside from the plane trip, what’s the big deal?

Well, first let me tell you about HealthEVoices16. It is a conference created by Janssen in partnership with Everyday Health for people like me to make an even greater difference in the lives of people like you. Since you’re here, you probably have a good handle on the fact that social media (Facebook, Twitter, blogs, websites, online discussion forums) is largely shaping the way patients and caregivers make decisions about healthcare for themselves and for their loved ones. HealthEVoices is the only conference created exclusively for online health advocates across a broad spectrum of health conditions. The mission of the weekend is to provide the tools, resources and inspiration to improve online patient and caregiver communities and expand reach even more. Attendees will have the opportunity to interact with other health activists and learn from experts in health, social media and advocacy. You can find out more about this year’s event and watch a pretty cool video here: HealthEVoices16.com

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When I stared this blog almost four years ago, I felt very much alone in my recovery from blood clots. As I began to process and understand the difficult journey that was ahead of me, I wanted nothing more than to reach out to others who might be feeling the same. I wanted to give others who experiecned a blood clot guidance – and ultimately hope – in what might be the worst time in their lives, so I created Blood Clot Recovery Network. As time went on and I felt less alone in my recovery, thanks to the robust community that you have helped to create here, I started to feel alone again, but in a different way. I felt alone as one of the few DVT and PE blood clot advocates. When I attended HealthEVoices last year, I found myself at another low point in my life. I was turned down for a job I wanted then, I was struggling to continue making a difference here at BCRN and I felt like I had nowhere to run to (save for nature and a weekend away) when I was overwhelmed with inquiries, requests and stories. On top of it all, I started to feel guilty for thinking about myself, feeling like I was letting the community down. I went to HealthEVoices a wreck, and not just because of the plane ride.

I still cannot believe how much one weekend changed my outlook on patient advocacy and gave me the tools I so desperately needed to continue doing the work I do at BCRN – and do it happily. I gained some valuable isights to combat compassion fatigue, tools to handle patient inquires in a wise and legal manner and information to establish or maintain a successful entrepreneurship and not “just a blog.”

More so than the tools and information I gained, though, were the connections I made. I connected with other advocates from a variety of different health conditions (oh yeah, I have social anxiety too so that was hard) who were going through the exact same things I was – despite our different illnesses. I wasn’t alone after all, I just didn’t know it. I left the conference last year feeling immediately empowered, newly invigorated and re-committed to my work as an advocate here at BCRN. I had some extra time before I flew home and I even took the train by myself into NYC and crossed a dream off my bucket list — visiting Central Park. <<P.S. the worry on my face is the result of hoping a) I make it back to NJ on the subway b) I don’t miss my flight and c) I don’t get lost in NYC>>

HealtheVoices16 Intro post NYC Central Park

This year, I cannot wait to re-connect with people I met in New Jersey last year, many who have become a source of daily support to me since that time. They include Debbe of the AFib Support Forum, Jill of Get up and Get Moving and Brian of A Marine and HIV. I’m also looking forward to connecting with Kevin of Rise Up to HIV who is not only a neighbor of mine, but a source of support and laughter for me during the planning process – especially when it comes to addressing my flight anxiety.  

I cannot wait to meet new people. I am beyond excited to – finally – meet another VTE advocate in person, that person being Lisa of the widely recognized Facebook Patient Support Group Surviving A Silent Killer. Lisa and I met virtually a couple of years ago after facing similar diagnosis and we, along with a few others, work closely together in terms of keeping our Facebook groups a safe place for all of you to be. The fact that she and I will be at HealthEVoices together solidifies in my mind that we will be able to collaborate even more to provide you with the best support and patient resources available. And, of course, I cannot wait to meet even more advocates representing other communities.

<<< Insert future picture of Lisa and I here >>>  

I cannot wait to make BCRN the best online patient support and advocacy community it can be for people recovering from blood clots.

Reader Writes In: What do you wish you had in terms of patient support from BCRN? How can I strengthen this community for you?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

 

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

 

 

BCRN is Leaving on a Jet Plane to #HealtheVoices15

When I started this blog just about three years ago after suffering from DVT and PE that almost ended my life, I never imagined it would turn in to what it is today. I never imagined anyone would read it beyond a select few. I never imagined how my readership would grow to countries all around the world, including far away places like Australia and Israel, and that I would make friends in those far away places. I never imagined a Facebook community or the chance to connect with so many of you who have shared the same struggles as I have. I definitely never imagined it would lead to some great partnerships with people like NASCAR’S Brian Vickers and actor/comedian Kevin Nealon. And I never imaged I would be working in collaboration with the National Blood Clot Alliance and the International Society on Thrombosis and Haemostasis to raise awareness around the world in an effort to save lives.

I also never imagined my work here would bring me to a the HealtheVoices Conference in New Jersey this weekend, April 17-19.

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The conference geared at bringing together online patient health advocates (like me!) to help further grow and engage online patient communities. And, as you can imagine, I am really excited about that. Despite my fear of flying, I’m following these travel guidelines and leaving on a jet plane to New Jersey, and I am on my way there right now.

I’ll be learning about things like protecting against compassion fatigue (which is a very real concern and very pertinent for me right now), learning how to provide you with the best support through writing blogging and social media (which I already love to do), how to measure success online and things like how to provide the best support to an entirely virtual community, including changing the culture of medicine though social media. I’ve had a sneak peak of the other attendees and I am also very excited to connect with other advocates discussing other crucial health issues such as diabetes, lupus, mental health and rheumatoid arthritis among others.

You can follow me on social media this weekend using the hashtag #HealtheVoices15. Join the fun and be the first to see what;s happening on Facebook and Twitter.

Thank you all for your support, encouragement and for making this blog what it already is today. I can’t wait to learn some new skills, find out about new resources, connect with other online health advocates and share it all with you!

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

 

The HealtheVoices conference is hosted by Janssen and Everyday Health and Janssen paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.