Hope for Healing After Blood Clots

I have talked about hope for healing since I first started writing this blog, Blood Clot Recovery Network. I also talk a lot about not being alone during recovery from blood clots. It seems that these thoughts have always been a part of this space, but honestly, I didn’t have hope that I would heal when I started this blog, and I was entirely alone. Not many people were talking about blood clot recovery and if they were, I hadn’t found them yet. Still, I couldn’t get these words out of my head, and they became a founding focus of the work that I do here. I said them all the time – out loud and in my writing – perhaps believing that if I said them enough times, they would in fact become truth.

Throughout my personal recovery, I often heard, “You’re so positive,” and “You’re handling this so well.” In reality, my world was falling apart. My job, my relationships, my health, and my self-esteem where all in jeopardy, and there was not a whole lot that I could do about it. It was all out of my control. I don’t routinely consider myself positive – because I am not happy and outgoing all of the time – but most people would consider me an optimist. What I realized after I healed from my blood clots was that even though I wasn’t happy – and I certainly wasn’t optimistic – I was always hopeful for what the future held. I never stopped believing that better days were coming. I realized that I didn’t have to be happy to be positive. In fact, I was downright distraught over my situation. Having hope, though, even when I was hurting inside, was a positive way to handle a difficult situation. Looking back, I have handled most difficult situations in my life by remaining hopeful for a better future.

From where I am today, the words “there is hope for healing” make more sense than ever before. Without my blood clot experience, I would not be where I am today. Now, I am not sorry that my blood clot happened to me, but it has taken me years to understand that, and it wasn’t an easy conclusion to come to. After all, it’s incredibly difficult to be grateful for something that almost ended my life and caused many years of hardship and heartache.

Despite all the pain I went through, I still choose gratitude for my situation.

Without my blood clot, I would not have had the chance to share my story, and with it, to share life-saving information about blood clots. I would not have the opportunity to meet all of you. Without my blood clot, I would not be able to pursue my passions as a writer and as a communications professional. I would not have the career I do, or the opportunity to give back to the community that has helped me heal. Ultimately, without my blood clot, I would not be able to share hope for healing with the people, who find themselves as alone as I felt when I was recovering from blood clots. I am grateful for what happened to me, because of where I am today, and because I can work each day to make a difference in the lives of other people who are suffering and hurting.

Gratitude, though, didn’t happen overnight, and it doesn’t make everything effortless, either. I still struggle to this day from time to time. I wish I didn’t have to deal with the long-term consequences of a serious health condition. I still have anxieties and fears that will always be present to some degree. What if my blood thinner doesn’t work? What if I have another blood clot? What if a bigger, scarier health crisis happens to me that I am unprepared for? Those thoughts are still present in my mind from time to time, but I have hope that I can handle whatever comes my way, because I have already handled this.

Gratitude for my experiences took years to happen, and it was very much a part of my healing process. In the beginning, I hated what happened to me. I was angry. I thought the pain would never, ever end. I wondered “why?” for years, before something finally shifted in my mind.

That shift was towards hope. I began thinking about what was ahead, not behind, for me. I began to hope that there was something out there for me. I began to hope that the pain and suffering I was experiencing was not my final destination. I stopped asking “why,”and I started hoping for a different outcome. In time, why didn’t matter so much anymore. How began to matter more. How was I going to feel better? How was I going to deal with it if I didn’t feel better? And ultimately, how was I going to take what I went through and make a difference?

I didn’t know how, nor did I have an answer to any of my questions, but I started to have hope that I would find the answers, or perhaps that the answers would find me.

To my complete amazement, things started to turn around, for the better. I didn’t believe it at first (it was too good to be true). As I built this space and this blog, I started to realize that I was not alone. I received countless messages from people who said they were going through the exact same things that I was. People began sharing their pain, and their heartaches with me. People also shared their successes and progress with me. People started telling me that they hoped because I had hope. They said because of me and my experiences, they didn’t give up.

I began to see how, and then one day I understood why.

It became immediately clear to me why I went through what I did: I was meant to make a difference in the lives of people who were suffering with blood clots as I had. The more I gave, the more I received in return. The cycle of hope and healing has unveiled some unbelievable outcomes for not only myself, but for many of you as well. I know because you tell me each and every day how something I have written, something you read in the BCRN Facebook Group, or on the BCRN Facebook Page, has made a difference for you. Time and time again, you have told me that the stories of hope and healing have cleared the path for these same gifts in your own lives.

Hope and healing from blood clots can be yours, and you do not have to suffer in silence, and alone. Honor where you have come from, and what you have been through, because you have been through a lot. Your body may be broken, but it is strong. Your mind may be devastated, but it is resilient. Be kind to yourself. Love yourself. Love your body because you’re still here, and it’s still healing. Healing is a process, it takes time, and it must be respected.

Have hope for the future and what will be. Have hope for better days, less pain, clarity, confidence, dreams come true, and yes, have hope for healing. Have hope because you are a valuable individual, who has something to give and get from this world. Hope is a gift that you all have access to right now, in this very moment, simply by changing the course of your thoughts.

If you can’t hope for yourself, I hope for you. I hope for better days ahead. I hope for healing, and I hope that you will be reminded that you are not alone on this journey.

There is hope for healing, and you are not alone.

 

 


Reader Writes In: How have you found hope for healing after your blood clot? What words of encouragement can you share with others?


A special message for you: That’s Called Hope


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Focus on Blood Clot Awareness Month

March is Blood Clot Awareness Month, or BCAM, and if you or someone you care about has been affected by blood clots, you might be wondering what you can do to make a difference. Often times raising awareness starts with simply sharing your story with the people that you already know. You can share your story verbally with friends and family, in a written note, or more publicly on your Facebook Page or Instagram account. Social media – and our online connections – make it easier than ever to share important information with people in our communities, and with people all over the world.

If you don’t know where to start with sharing information about blood clots, or if you’ve never shared your story before, I’ve outlined four specific things you can focus on to easily help make a difference during Blood Clot Awareness Month, or anytime you want to raise awareness: Blood clot risk, blood clot signs and symptoms, blood clot recovery, and blood clot prevention.

Blood clot recovery is not often a focus of blood clot awareness, but it’s still a very important thing to discuss. This month, I’ll be sharing some of my thoughts about my personal recovery from a handwritten journal I kept for the first month of my recovery. I’ve never shared these thoughts before, but now I want to share them with you.

I’ll also be sharing some of your personal thoughts about how having a support system like Blood Clot Recovery Network has made a difference during your recovery. If you’re not already, connect with me on my public Facebook, Instagram and Twitter channels to hear my thoughts. Plus, if you’re a member of my private Facebook Community, I’ll be sharing some special things there, that I won’t be sharing anywhere else. If you’re not a member yet, join for free today.     

Are you ready? Let’s get focused on Blood Clot Awareness Month.   

Focus on Blood Clot Risk Factors

Blood clots can happen to anyone, no matter who you are. They affect about 900,000 people a year, and about 100,000 people a year die due to blood clots, in the United States alone. In some cases, people may have been able to prevent blood clots by knowing puts them at risk for one.

I had no idea that I could be at risk for a blood clot, so I didn’t think one could ever happen to me. One of the most important things you can share with the people you know is information about blood clot risks.

Know the major blood clot risk factors.
  • A family or personal history of blood clots
  • Recent major surgery or hospitalization
  • Total knee or hip replacement surgery
  • An inherited or acquired clotting condition
  • You have cancer, or are undergoing treatments for cancer
  • You are immobile for a long time (confined to bed, long-duration plane or car trip)
  • You are pregnant or have recently given birth
  • You use estrogen-based birth control methods or estrogen for the treatment of menopause symptoms

That’s not all. Learn more about blood clot risk factors.

Focus on Blood Clot Signs and Symptoms

Just like knowing your risk for blood clots, it is important to be able to recognize blood clot signs and symptoms. Looking back, what was most striking about my situation is that I had symptoms of a blood clot in my leg (pain) and in my lung (shortness of breath, chest pain) at the same time. I also had these symptoms for several days, and they got worse as time passed, not better. Eventually, I called my primary care physician who recognized my symptoms as blood clots and told me to go to the emergency room immediately. This month, take time to share the symptoms of blood clots with the people that you know.

Know the symptoms of a blood clot in the leg or arm, also known as deep vein thrombosis or DVT.
  • Swelling, often in one limb
  • Pain or tenderness, not caused by an injury (sometimes feels like a cramping, or “charley horse”)
  • Skin that is warm to the touch
  • Changes in your skin color, such as turning white, red, blue or purple
Know the symptoms of a blood clot in the lung, also known as pulmonary embolism or PE.
  • Shortness of breath
  • Chest pain or discomfort, especially if it worsens when you take a deep breath, cough or lie down
  • Feeling light headed or dizzy, or fainting
  • Fast or irregular heart rate, or a rapid pulse
  • Coughing, or coughing up blood
  • Some people experience severe anxiety or feel like “something is really wrong”

When they occur together, DVT and PE are known as venous thromboembolism, or VTE. Blood clots in the lungs can cause death by obstructing blood flow, so if you or someone you know experiences these symptoms, do not delay emergency medical treatment.

Learn more about what blood clots might feel like.

Focus on Blood Clot Recovery

Recovery from blood clots is different for everyone. It can take weeks, months or years to recover fully, and some people live with long-term complications from blood clots, such as post-thrombotic syndrome, chronic shortness of breath, or even debilitating anxiety. If you have experienced a blood clot, it’s important to let people know what you are going through … and it’s also important for you to realize that they might not understand what you are going through.

Throughout my recovery, I had many people – some of them close to me – who did not understand how I felt, or understand why I was still in pain so many months after my PE. Sometimes, it was hard to talk about because it was so personal. How much – or how little – you share about your recovery is entirely up to you. During my recovery, I often found that sharing less was more. I found out pretty quickly that all I could do was share information about my situation, and if the people in my personal life didn’t understand, I moved on to talking with a community of my peers who knew exactly what I was going through.

Sometimes, sharing just a few general things about blood clot recovery can be helpful.
  • It’s different for everyone, and can include physical and emotional healing
  • Recovery can take a long time, but there’s no set time line
  • It’s not like a healing from a cold or a broken bone, it’s more like healing from major trauma
  • Some people require ongoing treatment for blood clots, which may involve taking medication and going to frequent doctor visits
  • Sometimes, people who are recovering may look normal on the outside, but they’re still healing on the inside
  • Blood clots are painful

Read more important things about what recovery from a blood clot can be like.

Focus on Blood Clot Prevention

It is true that not all blood clots can be prevented. About 30 percent of all blood clots that occur do not have a cause, or a known risk factor. However, there are several important things that you can do to prevent blood clots from happening, or from happening again.

The most important things that you can do to prevent blood clots are simple, and sharing them is an important part of blood clot awareness. If I had known or done these things in my situation, it may not have been as bad as it was.

Everyone can take simple steps to help prevent life-threatening blood clots.
  • Know your risk for blood clots. If you know your risk for blood clots or know when you might be in a situation that puts you at risk for blood clots like surgery or pregnancy, you can take additional steps to prevent blood clots. It is true that knowledge is power, or key, even when it comes to preventing blood clots. If you don’t know if you could be at risk, talk to your doctor about your concerns.
  • Know the signs and symptoms of blood clots. If you know the signs and symptoms of blood clots, you can seek help, hopefully before you find yourself in a life-threatening situation.
  • Know when to seek medical attention. If you think you might have a blood clots, seek help from your doctor or the hospital immediately. Don’t wait to see if it gets worse – or better. Get checked out sooner rather than later.

Learn more about how to prevent blood clots.

If you have already had a blood clot, there are some important things you can do to prevent future blood clots.
  • Take your medication as prescribed. The most common cause of blood clot recurrence is not taking your medication. If you’re struggling with your treatment plan, or side effects, talk to your doctor about your treatment options.
  • If you are going to be having surgery or a medical procedure, talk to your doctor about your risks for blood clots, and your risk for bleeding. Doctors have to carefully balance your bleeding and clotting risks. Don’t assume everyone knows your health history if you haven’t told them, and plan ahead if you can.
  • If you are pregnant or planning a pregnancy, talk to your doctor too. It is possible for women with a history of blood clots, or clotting condition, to have successful pregnancies. Connect with your doctor ahead of time, if you can, to talk about ways to prevent blood clots, such as taking blood thinning medications for the duration of your pregnancy.

Sharing information is the most important thing any of us can do to raise blood clot awareness, and Blood Clot Awareness Month provides the perfect opportunity to do so. If you’re not sure where to start, tell your own story and as you do, make sure to include the focus points above. Together, we can make a difference.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What plans do you have to help raise blood clot awareness this month? Share in the comments.


Do you want to do more? Discover your personal plan for raising blood clot awareness.


March is Blood Clot Awareness Month and the BCRN bracelets are back! Visit my Amazon Influencer Shop to get your gear. #sponsored


 

 

Sharing Success as an Online Health Blogger

online health blogger

When I started this blog five years ago, I had no idea that it would become what it is today. I had no idea how much it would mean to people, how much it would help them, or how vital it would be for some people. I had no idea that I would become the leading patient resource on blood clots and recovery. I actually had no idea that I would become an online health blogger. Back then, I was just a person, writing about my experience with blood clots, with the hope that someone, somewhere out there wouldn’t feel alone during recovery, like I did. If my words reached one person, I would be happy. Now, I know that my words have reached thousands of people, in every corner of the world, and have undoubtedly helped just as many. All those years ago, I had no idea I would meet so many people, share so many stories, or take part in many of the wonderful opportunities that have come my way.

A New Direction

I’m not new to blogging – nor was I ever – and I have background as a fitness blogger, which stems from my talent for writing. One could argue that I am not even new to successful blogging in terms of followers, readers, and opportunities. Technically and strategically, I knew what I was doing when I started this blog, and my passion to help make a difference in the lives of blood clot patients guided me from there. What I was new to, though, was online health blogging, and providing support for people who are going through a really, really difficult health crisis, perhaps the worst crisis of their entire lives. What I was new to was the amount of time and energy it would take to not only write about my experiences, but help other people through their experiences.

Providing Reliable Patient Support

Soon into my journey, a transition happened. I was catapulted –at lightning speed – from the role of blogger into a support and advocacy role that I never intended to be, and one that I never knew existed. Probably because I had never dealt with a significant health crisis before my DVT and PE, which almost ended my life at 29 years old in 2012. I never anticipated the time, energy and dedication that would come with this transition. I work a full-time job – in the same space, often providing patient support – and I spend hours every single day here answering questions, messages, comments and emails. I spend hours researching resources for people, compiling tools, telling my story, and sharing information. I’m not a doctor, and I’m not a healthcare professional, yet Blood Clot Recovery Network is often the first place someone turns for answers and support. I mostly can’t provide those answers – I’m not medically trained – but I can provide connection, community, encouragement, and I can lend an ear free of judgment and full of understanding.

Clinical empathy – or the skill of understanding what a person says and feels, and effectively communicating this understanding back to that person so that they too understand – is a gift that I am fortunate to have, and to share with all of you. I believe it is one of the reasons why I am so successful here. Clinical empathy – or even empathy – can also be a burden, if not properly harnessed. I am a compassionate and open-hearted person by nature. “No” or “I’m not able to do that right now” are hard phrases for me to insert into my vocabulary. I am more of a “drop everything and do it right now” person who wants to be all things, to all people, always. However, that’s not realistic, and it’s certainly not sustainable.

Being an Online Health Blogger is Not Easy

Creating consistent and reliable blog content that people can relate to, understand and appreciate is not easy. I may be a good writer, but a blog post does not come about without a lot of effort and forethought – it’s why so many bloggers simply do not stick around. Social media fatigue is real. On average, people check their phones 150 times a day. I am sure I exceed that on many days. The Internet never stops – for any of us. Online, people instantly notice if you are off your game, or are absent for any length of time. People sometimes don’t realize that there is a real person behind the screen, that struggles with the same things they do. We are all judged online for what we do and don’t do, more so I believe than we are in person. Demand for personalized attention and communication can be draining. Sharing our stories about such intimate matters as our health is both draining and demanding, and our energy reserve functions exactly like the bank where we keep our money. You can’t withdraw what you don’t have. It simply does not exist.

Sharing Success as an Online Health Blogger

As an online health blogger, I thrive on providing support and encouragement, and on sharing experiences, but I also need to make it a priority to replenish my reserves. I would not be happy, or fulfilled, if I didn’t have somebody to help through recovery – and let’s face facts – I probably could not live without the internet for any lengthy amount of time, but I have in lived through worse, so who knows. It’s a delicate balance – when helping is both your give and your get.

The truth is, you have helped to make this space what it is today by following along in the first place, and together, we are sharing success. You put the money in the bank, and now, you replenish my energy with your well wishes, positive comments, and willingness to go above and beyond to help one another. You support one another, and step in on social media, and in blog comments when I am not here. Above all else, you share your stories, just like I did all those years ago. For every note I receive about how much I have helped to make a difference in someone’s life, I also receive one about how wonderfully supportive you are.

I would not be where I am today without you and for that, I am extremely grateful. It is because of you that I continue to do what I do here, despite long hours and extensive work. You are the reason I put so much of myself into this, and you are the reason I will continue fostering healing, community and yes, even awareness about the life-altering effects of blood clots. My work here is far from over. Your work is far from over. We all have a story to tell, and we all have something to invest in the bank.

To you I say thank you. Thank you for being a part of Blood Clot Recovery Network, and for reminding me every day of why I began this work, why I do this work, and why I will continue this work.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How has BCRN helped you through your recovery? How do you make a difference online?


This post is a reflection of my thoughts after attending HealtheVoices 2017, an in-person conference that brings together online advocates from a variety of health conditions for an opportunity to learn, share and connect. For daily conference happenings, search #HealtheVoices17 on social media.


Janssen paid for my travel expenses to attend the conference. All thoughts and opinions expressed are my own.

How to Raise Blood Clot Awareness: Discover Your Personal Plan

March – Blood Clot Awareness Month – has been a very eventful month for our community. This month has provided us with an opportunity to come together as one not only to raise blood clot awareness, but to share stories, ideas, and life-saving information about blood clots. This month, I have read countless stories from you. There have been stories from people who are celebrating survival and stories from people who grieving the loss of a precious loved one. I have spoken to people who had no idea that a blood clot could affect them, and I have spoken to people who work hard every day to share information about blood clot risks and signs and symptoms. I have spoken to people who are newly diagnosed with a DVT and/or PE, and I have spoken to people who have been battling blood clots for years. Some people have reached out for reassurance and support, while others have reached in to give back to the community that has helped them. Some people are scared, hurting, and overwhelmed, and others are joyful and reassuring. Some people are healed, some people are not. Some people are at the beginning of their journey, while others have not even stopped on their journey to look back until now.

What this month has done is brought us all together, in one place at one time, to raise a united voice about an issue that has deeply affected us all, in one way or another. And believe it or not, people are listening. You can see it in the comments, the shares, the likes and the readership here, and in all the other communities you are all a part of. If you doubt, simply type #BCAM into a social media or internet search bar, and see all the conversations that are have taken place this March, and are taking place right now (it’s not too late to jump in on any of them, either).

On this last day of Blood Clot Awareness Month, I want to leave you with something everlasting, something that you can take with you into the days, weeks, months, and even years ahead. Just because March is over, does not mean we should stop communicating, connecting and sharing about blood clots, or how they have impacted our lives. In fact, it is my hope that we use the momentum this month has created to continue talking about the issues that affect us all, and to continue alerting people who don’t know, about how dangerous blood clots are. Not only that, it is my hope that we continue to bring awareness to blood clots, and we continue to support the organizations, groups and communities that can effect change to ensure no one ever stops talking about blood clots, an often-overlooked public health concern. It is a concern that indeed affects us all.

Along with these thoughts, I am leaving you with a personalized plan for raising blood clot awareness. Anyone can do it, and anyone can make a difference. In fact, you already have. These are the things I did to start talking about blood clots, and today, my work here reaches over 25,000 people a month. Over 1,000 people a month receive my newsletter, and nearly 5,000 people connect with our community on Facebook every day. The good news is, you don’t have to start a blog or have a thousand followers to raise awareness. You can raise awareness where you are right now, with what you already have, regardless of what month it is, in just three simple steps. Here’s how:

 Step 1: Find your passion

After my blood clot, it seemed that my entire life fell apart. Everything in my life suffered – my job, my relationships, my health, and my happiness. I lost everything, and I had no idea how to get it back. I felt alone, scared, worthless, and even self-destructive at times. I was fighting a losing battle, and nothing anyone said or did, including myself, could make it better. It was the worst I have ever felt in my life.

I spent a lot of time trying to figure out what purpose any of my suffering had, and what my purpose in life was. My attempts to discover this was futile, leading me to one dead-end answer after another. There was no justification for the suffering I was going through. There was no explanation for why I had lost everything. There was nothing I could possible give back to a body – and a world – that had treated me so cruelly.

Then one day, I stopped looking for a purpose, and I started listening. I wasn’t the only one who had been through a DVT and PE diagnosis. As it turned out, there were a lot of people out there who had also lost everything, just like me. There were a lot of people out there who had no idea what had happened to them, or why. Things started to shift in my mind, and I began to focus on what I believed was my passion: Helping other people through a blood clot diagnosis and recovery. I became determined to be the guide that I wished I had after my experience. I started Blood Clot Recovery Network – not even sure if anyone would read it. But, people did read it, a lot of people, and my work here continued to grow. Over the years, my work here has led to speaking engagements, freelance writing opportunities, advocacy events, and eventually, my career in the same field.

When I look back from where I am now, to where I was then, I still cannot believe one thing sometimes: My passion to lead me to my purpose.

If your passion leads you to blood clot awareness, you can: Talk about your experience, write about your experience (publicly or privately), tell everyone you know about blood clot signs and symptoms, tell everyone you know that they could be at risk for a deadly blood clot (and tell them why), educate other people about how to prevent blood clots, and get involved with patient advocacy groups programs and services. With the far-reaching impact of social media today, anyone can make a difference, and anyone can share their story. By sharing our stories, we share facts about blood clots. Facts that matter. The possibilities are virtually limitless. Use your social media platforms – and your voice – to make a difference. Do as much – or as little – as you can or want to.

Step 2: Let nearly everything that you do be to help someone else   

After my blood clot diagnosis, I felt worthless. It is hard for me to describe just how worthless I felt, in fact. It was unlike anything I had felt before, or anything I have felt since. I thought it would never get any better, and I thought there was nothing I could ever do to feel self-worth again. To sum it up, I couldn’t figure out what I had not died, because I had no reason to live anymore, I felt so hopeless.

Slowly, and not without pain and heartache, I started to realize that I was not worthless, and there were things I could do. These things came primarily in the form of helping other people, and were things I was already starting to do. Whether it be sharing my story, sharing my experience in an online forum, telling someone about what my PE felt like, or simply letting someone else know I felt the same, hopeless way that they did – I was helping someone else. How do I know that? People started to tell me, even a simple “Thank you,” is evidence that you have made a difference. People would say, “I didn’t know this could happen to me!” I started to realize, that because of me, now they did know a blood clot could happen to them. Never underestimate the power of helping another human being, especially during their darkest hour.

Ways you can help other people: Share your story, share information about blood clots, share information about recovery, tell your friends and family about what you are going through (if they don’t listen – that’s okay – they can save this for later), get involved in online support groups and forums, and tell your doctors about what you are experiencing after a blood clot diagnosis.  

Step 3: Always remember that there is hope for healing from blood clots

Each day, I talk to numerous people who are at different stages of their recovery. Some people are at the very beginning – they don’t even know they have recovery to do – and some people are far, far removed from the horrible things that happened to them – yet, they still have a story to tell. Some people have been recovering for a week, while others have been recovering for three years. Each of us is different.

I am often asked, “How far are you in your recovery from blood clots?” It has been four, almost five, years since my DVT and PE, and now, I consider myself healed. Sure, I will always have medication to manage and things to take into consideration that I never did prior to my diagnosis, but I am through the hard part, and I have seen that there is life – and purpose – on the other side of blood clots. There is beauty and healing and compassion and freedom from pain and suffering.

For some people, healing takes a lot longer, and still some people seem to struggle their entire lives. I don’t believe everyone moves through recovery with the same outcomes, but I do believe there is hope for healing. That healing might not look the same for all of us, but it is there.

What helped me heal more than anything, was helping other people heal. Each day, I try to remember that in the work that I do. Helping other people is healing – for me and hopefully, for them too.

What you can do to help people heal: Share your experience, share your struggles, share your joy, let other people know they are not alone, invite them to join you in the online groups and communities, set up a weekly check-in email or message with someone you have connected with, and learn as much as you can about blood clots.

There you have it, your personal plan to raise blood clot awareness and to share life-saving information about blood clots. Take this information, think about it, and begin making a difference when and where you can. You are a valuable person, you have a lot to contribute on this subject. We all do. When you have been affected by something like blood clots, awareness is ongoing. There is not right or wrong way to do it, when it comes to your personal story. I know you can and will make a difference, because you already have.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How are you going to raise awareness? What is a part of your personal awareness-building plan?


That’s Called Hope: A special message for you during Blood Clot Awareness Month


Want more BCAM information? Find out why blood clot #AwarenessMatters.

 

“The Patient’s Playbook” Review

patients-playbook-cover

I have been given this product as a part of a product review through the Chronic Illness Bloggers Network. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

Often times throughout my recovery, I wished for a guide to get me through the situations I was facing. I went from never being sick to facing a health crisis that nearly ended my life – and I had no idea what to expect or how to deal with it. It felt like around every corner throughout my hospitalization, diagnosis and recovery, there was something I needed to be prepared for – only I had no idea what those things were, so I couldn’t be prepared. It was just one devastating blow after another. I was frightened, alone and unsure of the future. If only I could have read a book that said, “do this,” or “understand this,” and I would have felt just a little bit more in control of what was the most out-of-control situation of my life – navigating a health crisis that should have killed me.

As we know, there is no guide to understanding a blood clot diagnosis or recovery from blood clots, aside from the growing number of internet resources and support groups, often patient-led and patient-run. However, there is a guide to help you save your life during a medical crisis – or the life of someone you know – and ensure you are receiving the best medical care available.

The Patient’s Playbook by Leslie D. Michelson is that guide. It can help you change the way you manage your health – for the better. Each year, too many Americans die as a result of preventable medical error, such as mistakes, complications and even misdiagnosis. Many more people are not receiving the best care possible, simply because we don’t know to get it – or we are too afraid or overwhelmed to ask for it. The Patient’s Playbook can help you change that.

Leslie D. Michelson, the founder, chairman, and CEO of Private Health Management, and former CEO of the Prostate Cancer Foundation, is devoted to helping people achieve superior medical outcomes at every stage of their lives. His real-life stories and relatable examples in The Patient’s Playbook provide expert advice to help you choose the best doctors, select the right treatment plans, do better research online, organize and utilize your support team and ultimately prevent medical errors.

I’ll admit – I was skeptical about reading this book. I didn’t think there was anything I could possibly gain from it. After all, I had already been through and (narrowly) survived a medical crisis – it felt like a gigantic waste of time to read something that could have helped me then, not now. The truth is, I read this book very quickly and felt like a sponge while doing so – I couldn’t get enough of the information inside. Even though I have already been through the exact type of medical situation that Michelson seeks to prepare me for, this book is now an invaluable resource for me, should I ever face another medical crisis, or should my family ever have to go through something like I did. Everyone should read this book.

I could easily – and gladly – tell you about everything that I learned in this book, but that would get really long and really boring for you. Michelson uses some great examples to get his points across – many of which reminded me of my own situation – which is one of the things I loved about the book, and something you just have to experience for yourself. Instead, I am going to share the key points that struck me as invaluable. While I highly encourage you to read this book – if you don’t, or can’t – I want you to at least have some knowledge from reading my insights. These are three topics I see on a regular basis in the Blood Clot Recovery Network discussion forum, on Facebook and around the web – and they’re good ones to discuss.

Your primary care physician (PCP) is everything. And if he or she is not, do something about it – NOW.

Your PCP should be the foundation for everything in regards to your care. If he or she is not, find someone who is. You have the right to search for a PCP like an employer would search for an employee. If your PCP is not providing you with care that is helpful or knowledgeable, or care that you are comfortable with – get a new PCP. I cannot stress that enough. You have the right to look for a PCP that is a partner in your care. He or she should be an expert in you. He or she should be finding problems before they become bigger problems – and helping you get to where you need to go if the problem is out of his or her hands. I see time and time and time again, people become complacent with the care provided by their PCP, are afraid to speak up, or don’t think they can, and that is hurting you, the patient, in the long run. Please, consider your relationship with your PCP and determine if you are receiving the best care out there, with the help of The Patient’s Playbook.

You need a to see a specialist – and your PCP should help you get to one.

Now that I have made the case for a good PCP – your PCP cannot solve everything, but he or she should be able to direct you to where you need to go to continue your care with a specialist. Your PCP should have a network of specialists that he or she trusts to help you, should you face the worst situation. Rely on your PCP to get you to a specialist, but not to provide specialized care. You might have to see a specialist – like a hematologist for your blood clots and/or blood clotting disorders – discuss who to see with your PCP, and find a plan for seeking our specialized care in The Patient’s Playbook.

Second opinions are really, really okay – and so is questioning your diagnosis.

If you have questions about your diagnosis, treatment or care – ask them, ask them. Even if you have to get a second opinion, get one. That is okay….it is okay to ask for a second opinion. You are not going to hurt anyone’s feelings, but you might hurt your health by not asking. You deserve the right opinion from the right expert. The Patient’s Playbook provides lists of where to go to seek reliable information about illnesses and specialists to help you with this part.

Michelson’s work is packed with examples and resources – packed. There are even some valuable tips that I know you all discuss every day in our support communities, such as how to stay safe in the hospitals, how to stay connected with your support systems, and how to get in sooner when you need to see your doctor or specialist – it’s all in this book.

Michelson wraps up The Patient’s Playbook with two thoughts that resonated with me beyond belief (and don’t worry, I am not spoiling it for you, if you decide to read it).

The first point is when he writes –

“Anyone who’s conquered a potentially fatal illness comes back a changed person. The crisis of confidence you may go through can take years to process.”

Just let that sink in for a moment – I had to. And then I read it again, and again. Michelson “gets it,” he really does. After all, the changed person that I am, and the years of processing, is a large part of why Blood Clot Recovery Network exists. Surviving a near-fatal blood clot changed me, it changed you, and together, we’re trying to process it and heal.

And secondly, he writes –

“If you have come through a life-threatening illness, the best was to do something with your survival is simple: Use your experience to help someone else.”

It was at this point that I had to set the book down for a while and take a deep breath (good thing it was towards the end). Think about it, the best way to do something with your survival – with my survival – is to help someone else. Every single day I try to take what has happened to me, and reach out to someone else who is scared, suffering, hurting or alone, because that is how I was when I first got out of the hospital and for weeks and months after that. And each and every day, at least one other person asks me what he or she can do to help. That’s it. That’s all you, me, we have to do – we have to help someone else. The very best way to do that, that I have found, is so simple – and Michelson agrees – just reach out. Tell your story, talk about what you have been through, share what you did or learned, and let someone else know they are not alone.

 

There is hope for healing and you are not alone,

 

 


Reader Writs In: Why do want to read The Patient’s Playbook by Leslie D. Michelson?


You Survived a Blood Clot…Now What? If you’re newly diagnosed, read this.


Heading to your first follow-up appointment? Take these questions to your doctor’s appointment.

#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.