#HealtheVoices16: Making Connections that Count

HealtheVoices16 Group

I have been thinking about what to say about #HealtheVoices16 since I got back two weeks ago and the wholehearted truth is, I don’t know what to say. I have tried to write this post a handful of times – I’ve started it six different ways, changed the layout twice and deleted it each and every time. I’ve selected pictures, re-selected pictures and then changed my mind on those pictures, yet again. In addition to all of that, I’ve felt a surmounting anxiety along the lines of “Why can’t I say what I want to say?! What is wrong with me?!” It’s no secret – I get into writing slumps like any other blogger – but this time I actually have something to say, and I can’t find the words.

So, I’ll simply start at the beginning. HealtheVoices is a revolutionary conference for online patient advocates and if you’re here, I’m sure know blogs, online support groups and social media are changing the way we address, treat and live with illness and disease. HealtheVoices was created by the thought leaders at Janssen Pharmaceuticals to bring advocates from a variety of illnesses and conditions together, in one place at one time, to talk about the issues we face as advocates, supporters, doers and thinkers and to give us the tools we need to do our job better – our job being to support, nurture, help and give hope 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 to Chicago, Illinois for this year’s event.

Chicago City

Being on the Advisory Panel really pushed me out of my shell, even more than I thought possible (yes, I have a shell when it comes to real-life interactions). Here’s me talking a little bit about my story – which is a lot hard to do than write it down. It’s also hard to share pictures of myself, just so you know.

Me speaking

As a panel member, not only did I get to give my insights in the planning of this conference, I was able to take more of a leading role in Chicago and really help people who I knew were, well, feeling just like I was – nervous, alone and unsure exactly of what to do, what to say or where to go and when. It’s hard to manage chronic illness, anxiety and hey, life, at home – let alone in a strange place with people you don’t know. I am grateful for the opportunity to help others, above all else.

The theme for this year’s conference was “Deeply Rooted Connections” and aside from some of my favorite learning sessions – which included learning about video blogging with Josh Robbins, legal issues when it comes to sensitive material with Jimmy Nguyen, content creation with Amy O’Connor and the power of social media to transform the medical field with Dr. Kevin Pho – I have been spending the majority of my post-conference time thinking about my deeply rooted connections.

Friends

These people – and so many others who are not pictured here – are my strength and source of inspiration when my job gets a little tough. And before HealtheVoices – as an advocate – I had nowhere to turn when the job got tough. I was the lone blood clot blogger and I never thought of reaching out to other health bloggers for support because I did not know they existed. Now, because of HealtheVoices, I do.

Most notably, I got to meet a fellow VTE advocate and influencer in the blood clot support community: Lisa Wells of Surviving A Silent Killer (SASK).

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Lisa and I connected early on in my journey as an advocate and she has been a source of strength and inspiration to me ever since. We each run a private Facebook Support Group and while they are different, we rely heavily on one another to ensure our groups run smoothly by sharing information and resources and supporting one another in triumphs and challenges. To meet her in person was more than I ever could have hoped. Having Lisa attend the conference with me furthered my sense of community and connection to the VTE community and I know this connection – and friendship – will continue throughout this year and the years to come.

I also met a local (to me) health advocate who represents the HIV community, Kevin Maloney. Even though Kevin and I were on the planning committee together, we did not meet before the conference; although, we did have plenty of time to talk – for six months – leading up to it. At first, we talked mainly about planning committee things like, “Wait, what were we supposed to do this week?” and “Did you turn in your thoughts yet?” From there, we started talking about advocacy in general and our communities. Then, I found myself talking to Kevin about my personal story, about his personal story and about living my everyday life.

As luck would have it, we shared the same flight out to Chicago and I can say without a doubt – because we were not so lucky to be on the same flight on the way back – flying with Kevin made all the difference in the world for my anxiety for two reasons: I realized I wasn’t alone in my travel worry and well, I wasn’t alone on my flight. I know Kevin will remain a friend of mine in the weeks, months and hopefully years to come.

Avisory Panel Group Hug

In summary, I have some pretty deeply rooted connections now from attending #HealtheVoices for the last two years and I can’t to see where those roots – grow – from here.

There is hope for healing and you are not alone,

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Reader Writes In: Did you see #HealtheVoices16 trend on Twitter? Have you ever traveled to Chicago? What did you do there? Tell me in the comments.


HealtheVoices16 Intro CoverThank you to the teams at Janssen, Everyday Health and Tonic Communications for an incredible weekend at #HealtheVoices16.

To learn more about #HealtheVoices16 read #HealtheVoices16 (Why it’s kind of a big deal).

To be a part of the private Facebook community, go here, and ask to join the group. Chat with you there.

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.

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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,

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From Make-A-Wish Employee to Making One of My Own Wishes Come True

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After my blood clot in my leg (DVT) and blood clot in my lung (PE) in the summer of 2012, I felt pain, fear and isolation with a degree of finality that I had never felt before. Physically, I had never felt as much pain as I did then and after losing all normal aspects of my life, I had never felt as hopeless and alone. I spent my days worrying about my health, my career, my ability to do the things I loved again and ultimately, my future. I did not know what I would be able to do with my life after blood clots, but I knew in regards to my personal and professional endeavors, it was always been important to me make a difference in the lives of others.

In searching for a way to get my life back on track after my diagnosis, I began working at Make-A-Wish Ohio, Kentucky and Indiana in hopes of finding a place where I could once again make a difference, this time in the lives of children facing life-threatening illnesses. From the beginning, I found I could relate to the Make-A-Wish mission to provide hope, strength and joy to those families going through unspeakable hardship, because I had been through a similar experience in my own life. Make-A-Wish gave me hope when I had all but given up on my future, strength to stand on my own two feet again, and joy in the opportunity to bring happiness to others.

When I launched Blood Clot Recovery Network in the early 2013, it was my goal to create a place where people could come together to share, learn, discuss and ultimately gain hope that, as a Survivor of blood clots, there is life and wellness. That while the pain, fear and isolation was the worst I had ever encountered, these feelings wouldn’t last forever and even more importantly, they didn’t have to be endured alone. While I hoped to make a difference once again in the lives of others, I feared that no one really cared about blood clots at the end of the day. Still, I said to myself, if I could help just one other person out there, I had done my job and I continued to pursue my advocacy work through BCRN.

Since that time, I know from your emails, posts, messages and tweets that I have reached countless people – far more than I ever thought possible. In fact, it was this community that gave me hope through some of my darkest days when I realized that I wasn’t going to be well in a week or two, or even six. Through it all, I kept writing and as this community expanded, so did my desires and dreams for raising even more awareness and elevating my work to another level that would give me the opportunity to reach an even greater number of people or make an even greater impact in the VTE community.

In light of those dreams, it is with great excitement that I have accepted a full-time position with the National Blood Clot Alliance as part of the Communications and Health Marketing team. In this role, I am excited to now be able to fully dedicate my days and my work to what I enjoy most, raising awareness about VTE. I am able to better pursue my passion and focus singularly on raising awareness and making sure people get the information they need to know about blood clots. Working with the National Blood Clot Alliance, and given the organization’s resources and unparalleled reach in the VTE community, I am confident I have an amazing opportunity to reach an optimal number of people, both those already affected by blood clots and those who don’t know what a blood clot is or how it might affect them.

It is without doubt that BCRN and the community you have helped create will continue. I look forward to continuing to blog and interact with you here. Your support, encouragement, stories and thoughts have made a difference, not only in my life, but in the lives of one another — in the lives of those who have survived, those who have lost a loved one, those who are scared, those who are recovering, those who are in pain, lonely and afraid, and those who are learning to live again. While I have provided the resources, it is you who has nurtured this community to make it what it is today.

To you I am grateful, and I hope you will continue on this journey of hope and healing with me, both here at BCRN and in my wonderful new relationship with the National Blood Clot Alliance.

There is hope for healing and you are not alone,

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Three Years of Recovery from a Blood Clot

Three Year Recovery Cover

Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.

I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.

In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.

And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.

Physically

Out of the woods and into…another woods. Critical Care Becomes Longterm Care.

At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.

Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.

Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.

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Lifestyle

Don’t sweat the small stuff…because it is really the big stuff!

Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.

What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.

What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.

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Psychologically and Emotionally

Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real. 

The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.

What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.

What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.

Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.

There is hope for healing and you are not alone,

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Get Your Recovery on Track with INRTracker

Get your recovery on track with INRTracker

Being diagnosed with a blood clot is scary. It’s confusing, it’s overwhelming and all too often, patients are discharged from the hospital with little to no support from their doctors and medical providers. While I had a doctor who was very supportive of me and my recovery, I did not have a positive experience with the physicians who treated me in the hospital. I was handed a paper detailing instructions that made little to no sense of me between all the confusion, pain and medications I was taking. I asked a lot of questions prior to discharge, but can’t remember or didn’t fully understand the answers. In addition, the doctors who discharged me where clearly irritated that I asked so many questions. I left feeling frustrated, confused and very much alone.

One of the things I found most complicated about my diagnosis and then treatment was first understanding and then managing my INR. For starters, I didn’t even know what an INR (or international normalized ratio) was or why it mattered what my numbers were. I soon found out that INR is a measure of how long it takes for blood to clot and it mattered because if my INR was too low, it could mean I had a tendency to clot again or if it was too high, I could run the risk of bleeding internally. From there, I wondered about things like vitamin k and diet consistency; when to take my medication and how much to take; what kind of risk I was facing for clotting again and what to do about things like exercise. Nothing was the same – and everything was an issue since my diagnosis. Nothing was simple, easy, clear-cut or obvious. It was like learning to live all over again.

Even just a few years ago, there were not as many resources about DVT and PE recovery as there are today. I like to think that as resources grow and become more readily available, it must also been we are raising awareness about blood clots. One of the resources more recently developed to help with blood clot recovery is INRTracker.com.

INRTracker.com is free and personal online app to help Warfarin patients manage their INR, medication dosages, vitamin K, doctor appointments, compression stockings and more. In fact, there are 13 different health variables you can manage with INRTracker.

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And, when everything else seems really complicated during recovery, the information at INRTracker is really straightforward to input.

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While it isn’t necessarily ideal for me to log in everyday and note whether or not I have taken my medication, INRTracker would be really helpful to note a medication adjustment, and so far, I have been using it to track my exercise, menstrual cycle, blood pressure and upcoming appointments. Once you start tracking information, you can view your information through concise, customizable charts, which is a feature that I really like. You can also generate your own reports to take to your doctor, a feature that is invaluable when you are trying to remember something or have a question.

Screen Shot 2015-05-18 at 4.58.52 PMINRTracker also has some other great tools that may be helpful during recovery and adjusting to living with the complications of DVT and PE. They are the INR Levels Tool, Vitamin K Food Database and DVT Calculator.

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The INR Levels Tool is designed to help you understand your desired INR value and read about the impact that INR level will have on your Warfarin treatment. And, for any patients who are taking warfarin, it is important to understand the impact of vitamin K on your medication. The Vitamin K Food Database is a comprehensive listing of over 4,500 and their vitamin K content to help ensure you are getting enough vitamin K in your diet. The DVT Calculator and PE Calculator are two tools I also find very useful, particular if you are concerned about another blood clot. While these calculators could help determine if you or someone you know is experiencing a DVT or PE with a specific set of doctor-recommended questions, it is also important to note medical attention should be sought in either case and especially in the case of a PE, which can be life-threatening. INRTracker also offers some very important articles to help educate you about blood clots, including medical terms, diagnosis and tests run by doctors.

What I love about INRTracker is it was created by people who have real-world knowledge of DVT and PE, it’s free, completely customizable and offers a wealth of information all in one, easy to navigate place. What I wish it had is a mobile component so that I could keep track of all of my information on the go (like when I am getting my INR results from the lab) and per the creators, a mobile app is in the development stages.

Connect with INTracker on Facebook and Twitter for more information and updates.

Reader Writes In: How do you manage your life after a blood clot? Have you used INRTracker? Will you give it a try? Have you found any other successful programs to keep you on track?

There is hope for healing and you are not alone,

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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,

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