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

HealthEVoices_logo_outlines

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

 

 

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.

HealthEVoices_logo_outlines

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.

Roadmap to Health in 2015

roadmap to health 2015

For many of us, myself included, 2014 was a tough year healthwise. While it was nothing the year of my PE, I’ve faced some new challenges that were unexpected. I know many of you share in my struggle and still many more are battling the aftermath of a DVT and/or PE for the first time. You are not alone in your fight, as evidenced by the stories and people here – both those people who have shared their stories and those who are suffering quietly. Your journey may be one you take by yourself, but you are not alone in the obstacles, setbacks, hardships and even triumphs you encounter. We are all on the same type of journey, just taking different paths to get there.

Where is there, you wonder. For me, my journey is seemingly unending, but I am hoping to continue down a path that leads to optimal health and wellness for my individual body. I was diagnosed in 2012 with Antiphospholipid Syndrome, which is believed to be the main cause behind my DVT and subsequent PE. I take Coumadin/warfarin daily and probably will for the rest of my life as there is currently no cure for APS; and my risk of future clotting, including stroke, is too great to risk without medication at just 32 years old. Do I like that I take blood thinners now or forever? No, but it is the best course of treatment at this time. My journey includes continuing to work with my hematologist to ensure I am receiving the best care possible, regain control of my diet and start implementing a not only doable, but sustainable fitness plan back into my daily life.

Achieving ultimate health is like any other journey – full of hills, bumps, detours, closures and even spin-outs along the way. If we’re lucky (which, let’s face it, I’m not), we’ll avoid any major crashes along the way and have to deal with just the occasional stall or engine failure. I like to think of health as a journey and I would like to provide you with a Roadmap to Health in 2015.

Roadmap to A Healthy

Print it out, share it, bookmark it for future reference. Do whatever you can right now to take control of your health.

From me to you, have a very happy holiday season and beautiful New Year.

Reader Writes In. What is included in your Roadmap to Health in 2015? Share it in the comments below!

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Thank you to the American Recall Center for providing this Infographic and the opportunity to include my own insight. Connect with ARC on Facebook today.

You Survived a Blood Clot…Now What?

 

When I suffered from a DVT and PE in May 2012, it was completely unexpected and unlike anything I had ever experienced before. I had never been ill, never been to the hospital or had surgery. I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. But, now that I survived a blood clot, what was next? Here are a few things I have discovered during the recovery process that are important for recovering, healing and ultimately moving on with the gift of life we, as Survivors, have been given.

Do not let anyone tell you what you should or shouldn’t do.

The words should and should not have become a detrimental necessity of the English language so it seems. It’s toxic, it’s invasive and it seems we all do or say it to some extent. I know I am guilty of often thinking “I shouldn’t feel this way,” “You should find out about,” or “I should have.” What’s the big deal with shoulding, you ask? (Yes, I made up a word, just now). It’s a one-way fast-track guilt-trip seeded in self doubt, to say the least. By dwelling on our shortcomings and failures (which is what we do when we say should), we tend to not look for solutions or take the necessary steps for action to improve our situation.  Do not let anyone, including yourself, tell you what you should or should not be doing when it comes to your health. If you wish you would have  done something differently (for example, ask more questions from your doctor in the beginning), you may say “Next time I will” or “In the future I plan to” or “At my next appointment I will ask what this means for my overall health.” Not shoulding yourself will allow you to take steps that help you to ultimately feel better about yourself and your health. And when it comes to someone else and his or her treatment – you are not them and he or she is not you. We may face common issues or diagnoses’, but at the end of the day, only you and your medical team can decide what is right for you.

Find a medical team.

While I do believe that one doctor can make a difference – even save a life – I also believe it is important to have a medical team to treat your after surviving a blood clot. And, in reality, you probably already have a team forming. Treating a blood clot is not simple by any means and while your hematologist or general practitioner or vascular surgeon may be your main point of contact for follow-up care, keep a team of professionals at your disposal. This way, when something comes up (or goes wrong) you have a team of varied specialties and therefore hopefully talents) at your fingertips already.

Here is what my medical team currently looks like as an example. I have a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management and anything new that may pertain to my blood or ongoing condition. For everyday problems (or what I think are everyday problems (like a sore throat), I start by seeing my Primary Care Physician who is a DO. I regularly visit the outpatient lab at the hospital to have my blood drawn to check my INR levels. I also have a rheumatologist to handle any current or new autoimmune concerns (at the direction of my hematologist) and I have an endocrinologist to monitor what has been a lifelong thyroid condition. I also have a pharmacy that I use consistently and am comfortable asking the pharmacists there questions about over-the-counter or prescription interactions. Even though I do not see all of these specialists all of the time, they are there if I need them or have a concern. I have built a team I am confident relying on if I need something or have a concern.

Find and build a team of doctors you trust your health to. For a list of common specialists seen after a blood clotting incident, visit here.

Gather your resources.

Just like building a medical team is important, it is also important to have a pool of resources to help you through the recovery process. This could include things like books, websites, personal contacts and in-person or online support groups; not to mention things like assistance with food, housing, insurance, prescriptions and medical expenses. What people often do not understand is that the effects of a blood clot are devastating and often far-reaching.

When I suffered from a blood clot in 2012, I was not prepared for the fallout. I lost my job, my insurance, my income – everything – and I was not prepared for the financial, emotional, physical and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from. I began gathering my resources from the beginning. I inquired about financial aid at the hospital (you would be surprised most people qualify for something), searched for prescription assistance programs, asked for help in searching for jobs, let my family help when they were able, cut the cable and phone bill, etc. Anything that I thought would make a difference in my situation and relieve the pressure of trying to live with a debilitating injury/illness, I did. Resources exist and yes, many are hard to obtain, but there are some out there. If you can’t buy food, visit a local food pantry or church. If you need help keeping a roof over your head, search for a housing assistance program in your area. If you can’t afford your medication, ask your doctor’s office if they have a social worker available to help you navigate the hurdles. This is not to say any of this is easy, but it is at least worth gathering what resources you can, when you can.

Build a support network.

I will be the first to tell you, people generally do not understand first, what a blood clot is and second, what the recovery is like. It is important to start building a support network early on. Searching for my own support during my recovery is how Blood Clot Recovery Network began. It is crucial that you reach out to other people who can relate to what you have been through – because they have been through it too. But, even if you are not comfortable reaching out to people you do not know, build a support network of people who care about you be it family, friends, fellow survivors and/or an online support group. You can join BCRN’s private Facebook group, or find more online support resources here. Having at least one other person to support you unconditionally in your recovery is important. If you don’t have that person in your life, please find support here, at BCRN.

Recognize your recovery is expansive. And listen to your body.

Recovery does not happen overnight – or sometimes even days, weeks or months after a PE and/or DVT. Physical recovery from a blood clot take anytime up to two years (or more or less, depending on the individual) and sometimes the emotional recovery from a blood clot can taken even longer. Physical and psychological complications can be long lasting and far-reaching. In the beginning of my recovery, I wanted to “get better” right away, and it was hard for me to understand why I didn’t feel better in a week or two – or even a month or six months or a year down the line. Recovery takes time. And your body is very good at telling you exactly what it needs – or does not need. Throughout your recovery, listen to your body. If you try to go back to work, walk around the block or go back to the gym and you are struggling with fatigue, more complications or pain – your body is probably telling you to rest. A DVT and especially a PE causes micro-damage, sometimes to organs like the heart or lungs,  that the body has to heal. Healing takes a tremendous amount of resources and energy from the body.

Put yourself first.

For the first time in maybe my whole life, I had to learn to put myself first during my recovery – and that was not easy to do. I had to say no to things like meeting up with friends for dinner, a phone call to catch-up, cooking, cleaning the house and running errands. I had to say no to things that made me unhappy or uncomfortable – including people who did not support me during my recovery. It was very hard to put myself first, but it was a necessity. You have to come first during your recovery. Learn to say no and if you have things that need to get done in a given time period, ask your support network for assistance or advice. As you begin to heal, you can start to do things that you used to do or take on more tasks, but in the beginning, don’t be afraid to say no, or yes, and focus on yourself.

Work on finding your new normal.

Everything changed after I survived a blood clot and finding my new normal is an adjustment I am still working on to this day. Even more so than adjusting to what is the new normal, though, is recognizing that things can no longer be the same as they were – because I am not the same person coming out of this survival as I was going in. I have faced more pain, fear, uncertainty and failure than I ever thought possible. I have survived something many people do not. I have to live with the burden of a lifelong and complicated illness that I am still unsure of what the outcome will be. Do I have to give up the life I loved and the things that made me happy? No, I do not believe I or anyone does, but I do have a new perspective on life that is different than the one I had before. I have different limits, different expectations, different fears and a new appreciation for the life I have now. A blood clot changes everything. Give yourself the time and patience you deserve to adjust to that fact.

Never, ever, ever give up.

There is hope for recovery. Just over two years out from my blood clot, I consider myself physically recovered although I still face complications from time to time and will always have to manage my medication and risks that come with that. I still face the emotional burden of what happened to me, but I am working on it little by little. I wanted to give up so many times during my recovery, but somehow, I always managed to hope for a better tomorrow. I am passing that hope on to you. You can recover. You can make improvements. You can find support and love. Find something you are passionate about and keep your sights on a goal. For me, if I can help one other person going through the struggle of recovery, I know my own struggle was worth it. Find what makes you happy, what drives you – your children, your family, your career, your pets, your love of music or art, your creativity, your friends – anything – and hang on to the hope that in that happiness, you will succeed.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

World Thrombosis Day Giveaway!

WTD Giveaway

Happy World Thrombosis Day 2014!

In recognition of this special day and the global movement to “Stop Blood Clots, Save Lives,” I am hosting a World Thrombosis Day Giveaway! It is my hope that you wear these bracelets to raise awareness about blood clots including causes, risk factors, signs and symptoms.

Don’t want to wait to see if you win? You can order these bracelets in the shop, including the new “Have-A-Heart” Bracelet for World Thrombosis Day. During the month of October, 100% of the proceeds from the sale of a “Have-A-Heart” Bracelet will be donated to World Thrombosis Day.

Blood Clot Awareness Bracelet Pack Giveaway

bracelet giveaway pic

The Blood Clot Awareness Bracelet Pack Includes:

  • 1 Red Stretch Band Bracelet with Faith Love (side 1), Hope Courage (side 2) and Red Ribbon Charms
  • 1 “Have-A-Heart” for World Thrombosis Day Red Stretch Bracelet
  • 1 Stretch Burgundy Ribbon Bracelet (for Blood Disorder Awareness)
  • 1 Stretch Red and White Ribbon Bracelet (for PE Awareness)
  • 1 Stretch Red Ribbon Bracelet (for Blood Clot and DVT Awareness)
  • 1 Red and White Silicone Awareness Bracelet (for PE Awareness)

Enter through Rafflecopter below and please note, I will be selecting two (2) winners to receive the Blood Clot Awareness Bracelet Pack containing the six (6) bracelets listed above. The World Thrombosis Day Giveaway runs from midnight on today, October 13 through midnight on Saturday, October 18, 2014. Winners will be announced on the Rafflecopter Widget (found here) and be notified via email and will have 48 hours to claim their prize before a new winner will be drawn. Good luck and thank you for entering!

a Rafflecopter giveaway

Raising Awareness with Everyday Health

Everyday Health is a website dedicated to helping others live a healthy and well-rounded life by providing a variety of resources and personalized wellness tools. Topics range in topic from depression to diabetes to vitamins to weight-loss to beauty to recipes and many more, including Deep Vein Thrombosis and Pulmonary Embolism. Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS and motor vehicle accidents combined (Source). Sadly, blood clots are also a leading cause of preventable hospital deaths in the United States (Source) and are often misdiagnosed simply because people do not know the signs, symptoms and/or risk factors associated with them. Recently, I had the privilege of raising awareness with Everyday Health by sharing my story of DVT diagnosis, treatment and recovery.

Here’s a small excerpt of my interview with Jennifer Acosta Scott at Everyday Health:

A Mission to Raise Awareness of DVT

Now that Wyen’s life has stabilized, she devotes much of her time to educating the public about DVT and helping others who are going through a similar situation. A few months after her diagnosis, she started Blood Clot Recovery Network. The site provides links to medical resources and shares personal stories of people living with deep vein thrombosis.

“When it happened to me, I didn’t know the [DVT] symptoms. I didn’t know what to look out for,” Wyen says. “I want to spread the word that you can be young or old, you can be any body size, any body type. You can read the site and file the symptoms and signs away. If it ever does happen to you, hopefully something will trigger in your brain — I should get this checked out. [Read More]

Please read the entire story and share in your networks. Raising awareness saves lives!

Also be sure to connect with Everyday Health on Facebook and Twitter.

Thank you to Jennifer and Everyday Health for sharing my story and most importantly, for raising awareness about DVT and PE, including the signs, symptoms and dangers associated with blood clotting.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA