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,

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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.

How to Get Inspired in 7 Steps

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9 Days Out. My leg hurts so much; I wish I could cut it off because that would feel better than this. What happened to my life?! This pain and discouragement make it hard to believe that God still cares. Maybe He forgot about me.

I started keeping a journal during my recovery and this is one of the first entries I have shared from it. Looking back, I can’t tell you exactly why I decided to keep a journal. I’ve always been a writer, though not a consistent journaler per say. As I’m flipping through the pages now, it appears to be a disordered collection of thoughts, feelings, get well cards, appointment reminder cards, daily activities and song lyrics. The pages are torn, wrinkled and things are stuffed in and falling out; taped, folded and stapled to the pages in every which-way.  It’s spiral-bound and thick with a frilly design etched from Easter-grass green, lacy white and sky blue. This passage graces the cover-

And God is able to make all grace abound to you, so that in all things and at all times, having all that you need, you will abound in every good work. – 2 Corinthians 9:8

Totally not like me – the disorganization, the lack of forethought, the frilly things, and the Bible passage. I don’t recognize some of the writing because it doesn’t sounds like me either.

Yet, for three and a half months in the summer of 2012 after my pulmonary embolism, it was me. And I wouldn’t change what is in it for anything.

Recovery is hard. Very hard. And there were – and still are – days I thought I may not make it through. Sometimes, it’s the small – or even big – things that remind us why we are here, why we keep pushing and why we shouldn’t settle for less than what we deserve. Upon reading through my journal, I found out how to get inspired in 7 steps.*

  1. You are better than you think!
  2. Hope sets success in motion.
  3. Times don’t stay tough. Easier days are ahead.
  4. You’re more important than your to-do list.
  5. Things can turn out even better than you’ve dreamed.
  6. You shine brighter than the sun, moon and stars!
  7.  Believe in the power of today!

Write them down, read them, save them to your desktop or snapshot them on your phone for inspiration when when you’re feeling blue. You can also pin, share, tweet or post how to get inspired in 7 steps with the graphic below-

Seven Steps to Inspiration listed out

Share your story. Have you kept a journal during your recovery? Are there any motivational steps you would like to share? Which of the above seven steps is most inspiring to you?

There is hope for healing and you are not alone,

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Please note, these seven steps originally appeared in the June 2012 issue of Women’s World Magazine as seven days. I adapted them to fit my own recovery. 

How To Share Your Story

 

Share Your Story

Storytelling is the essence of Blood Clot Recovery Network. After I survived a pulmonary embolism (PE or blood clot in my lung), I set out to tell others about my experience. My story was the first thing I wrote for this blog. While my story is ever-changing – and I bet yours is too – there is great value and release in sharing our experiences with others. As the author of this blog I have read hundreds, if not thousands, of stories and each of them has affected me in some way. Each one I remember, each one stands out. Each one reminds me that I am not, in fact, alone on this journey. I hope you find the same value in the Patient Stories here.

We all have a story to tell and every story is important. In fact, emerging research has shown the importance of and value in allowing patients to share their stories. It gives patients a voice – and I like to think a small purpose – after what they have gone through. If you would like to share your blood clot story with others, below are some simple guidelines to help you do so.

How to Share Your Story with the Blood Clot Recovery Network Blog:
  • Make it all about you (or your loved one) and make it original (please don’t submit the same story you have written for someone else).
  • As a general guideline, make it 500-800 words in length.
  • Give your story a title.
  • Include a picture, if you want to. It can be of yourself, your family, your pet, your hobby, your artwork or a place you love to go.
  • Submit your story and photo via email to sara@bloodclotrecovery.net and I’ll get back to you about publication details, including the best platform on which to share your story.

I can’t wait to hear from you. Please note, I receive a lot of patient stories, and it may take 4-6 months to publish your story on the blog. 

There is hope for healing and you are not alone,

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