Getting Out of the Deep End

Can you believe it? 2017 is almost over and I don’t know about you, but I am ready to say goodbye to this year. I don’t like to rush things, but I am ready for a new beginning. A lot of 2017 felt like holding my head above water as a struggled in the deep end on the sea of recovery.

Don’t get me wrong, 2017 was an amazing year, and I did some things that I never thought I would since my blood clot diagnosis. I conquered one of my greatest fears – traveling abroad on blood thinners – when I flew to London and toured the UK for 11 days. Among the highlights of things I saw was the stone circle at Stonehenge, the Roman Baths, countless castles and cathedrals (my personal favorite), and the city of Edinburgh in Scotland.

Traveling overseas was a great fear of mine, primarily because of, “what if something like a blood clot happened so far away from home?” From there, I could think of a thousand other things that could go wrong on an overseas trip. From the long flight, to a blood clot, to an unexpected injury, illness, or other unforeseen natural or planned disaster, the bad things that could happen added up quickly in my mind. I worried a lot about whether or not I should go, and about what I would do if the unthinkable happened. I planned and prepared as best I could, and finally decided I couldn’t pass up the opportunity of a lifetime to see things that I had only read or dreamed about. I almost regretted my decision to go after being delayed on the tarmac – on the plane – which turned my eight hour flight into a 12-hour ordeal, but once I made it to Europe, I was able to relax and have fun.

Until the second to last day of our vacation when I had a very scary – and my personal “this is the worst-case scenario”  – experience occur. Much to my own disbelief, I fell and hit my head against a stone wall at the Tower of London. I had an immediate goose egg, blurred vision, and headache. I knew I needed to seek medical attention, and I did, just as soon as the taxi could get me to the hospital. I think I was too terrified to act, but thankfully, I had my family with me throughout the entire process. I had a CT scan at the hospital and was partially admitted for observation for 11 hours. I did not have bleeding, or an internal head injury. The biggest worry was my flight back home due to potential not-yet-seen bleeding complications, which did not happen. The flight home ended up going a lot smoother than the flight there. Experiencing one of my worst-case scenarios – and having a good outcome, because I was prepared for the possibility – has definitely helped to ease my fear and anxiety. Bad things can happen, even far away from home, and I will be okay.

It was a great year for my personal growth, as well as a patient leader and blood clot advocate. I am thrilled to say I was able to speak to two very different audiences this year, both which challenged me to think about how I share my story in new and different ways. One audience was chemists and medical professionals in San Diego, California and another was women with diabetes in Washington, D.C. As a result of my experiences this year, I feel that I am better prepared to continue providing information and support to even more people. Blood clots can and do affect anyone, and I hope that by sharing my story, I am able to provide life-saving information to someone who may not have known about blood clots before.

For BCRN, 2017 was a great year, and I am extremely grateful for your support. This year, there were over 300,000 page views on my blog. Thanks to you, I have gained important insight into the issues you want to talk about most, as evidenced by my most popular posts about recovery: how long does it take and what does it look like? I wrote them so long ago, in the midst of my own recovery, and I am so glad to know they provide relief and understanding for you still today.

Like any year, 2017 also saw it’s fair share of challenges and setbacks. After a few years of normalcy, I experienced some health challenges this year that challenged my resiliency and positive outlook. In August, I had a major bleeding incident that landed me in the ER for treatment. I’m still recovering from that by trying to stabilize my INR and boost my iron levels. Yesterday, I had an ultrasound to check for a second blood clot in my left calf. There was not one, thankfully, but it scared me to think that there might have been. In addition, I watched someone very close to me suffer from a traumatic brain injury while on blood thinners, which was very different from my own experience in London. Thankfully, that person is now recovering, but there were some scary times in the last months of this year.

These experiences reminded me of what I have been through in the past, and of just how fragile health our health is. These events have impacted me more than I anticipated, and they have been difficult to share outside of my private group (you should join us there, if you have not already). I’m still reeling from my experiences in a lot of ways. I know, however, I’m not alone, and many of you have already been down this road of uncertainty too. Through it all, I remain grateful for my health and grateful for the health of my friends and family. In just one instant, everything can change, and the end of this year made no mistake about reminding me of that.

As I look ahead to 2018, I don’t want to stop growing, sharing, learning, and exploring. I want it to be the year of “new beginnings” and “big things.” I want it to be the year of smooth sailing, too, sailing above the water. I don’t quite know what that means yet, but I do know that I have big plans for BCRN, and I hope you will join me for the start of them. I want to write more, share more, and do more to continue to provide you with the best support available if you’re recovering from a blood clot. You, my readers, are the driving force behind the work I do here, and I can’t wait to see what’s in store for us in the year ahead. Let’s get out of the deep end and together, let’s forge ahead into what the future holds.

My wish for you is that you have a wonderful holiday season, with the people that matter the most to you. If you’re in pain, or you’re struggling with your health: you are not alone. No matter how hard it gets, don’t ever get up, and remember, it does get better in time. We’re still here, and we haven’t drowned yet. I wish you health, happiness, and a wonderful 2018.

There is hope for healing and you are not alone,

 

 

 

P.S. I couldn’t leave you without a few pictures from my adventures this year. Here’s a recap:

 


Reader Writes In: How was your year? What are you most looking forward to next year?


Does the new year have you worried about making commitments and promises that ultimately end in disappointment? Find out why I don’t make New Year’s Resolutions.


New: I was recently invited to be a part of the Amazon Influencer program to share some of my favorite products with you. These are products I personally use on a regular basis. They include things like bandages, pill cases, and medical IDs. {Disclosure: I may be compensated for  purchases made from my shop.}


 

Sharing My Patient Journey

When I was first asked to share my patient journey at the Diabetes Sisters Weekend for Women in Alexandria, Virginia I thought one thing: Why me? After all, I talk about my personal recovery from blood clots, and I don’t have diabetes. Excited as I was to explore the possibility, I returned the call to decline and said, “I think you have me confused with someone else. I don’t have diabetes.”

“No, we don’t,” was the answer I received, “We want you to speak because you do not have diabetes. We want to share a different perspective on the patient journey.” Excited by the possibility to speak to a different audience than the ones I am used to, I dove into preparing my presentation to talk about my personal journey from being a patient to being a patient advocate. I’ll be the first to admit, attending an event specific to a disease separate from the one I have was intimidating at first.

Before I went, I learned what I could about DiabetesSisters, a nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and advocate on their behalf. What I soon realized is, this resource – including the support and educational conference I would be attending – is the type of resource that the VTE community doesn’t have right now. We’re getting there, but we still have some progress to make.

Part of the support that DiabetesSisters offers is regular meetings, or in-person opportunities, to share information, experience, and support with people who have been there too. The Weekend for Women even offered support for partners of women with diabetes (Partner’s Perspective Program) and the Diabetes UnConference, which was exclusively to discuss deeply personal and sensitive issues such as the fear of the unknown when managing a lifelong illness. I soon realized how incredibly fortunate the people attending these sessions are to have this measure of support in their lives, and I immediately wanted to be a part of it.

At the conference, I shared my personal thoughts about how to navigate the path from patient to patient advocate through storytelling, and I shared my thoughts about how telling our stories can in fact lead to healing and empowerment. I also took some time to share important facts about blood clots, including risk factors, and signs and symptoms. I had several women come up to me after my talk to either share their personal blood clot story, or the story of a family member. I also had a few people tell me they had no idea they could be at risk for a blood clot, and about how they planned to discuss their risk with their doctors upon their return home.

I was invited to sit in on the workshops, in which I observed some thought-provoking discussions about how to support a spouse or loved on who has diabetes, and how to handle our worst fears when facing a chronic or long-term illness, like the fear of being incapacitated and left alone, or even the fear of death. I realized these are all thoughts I have had throughout my recovery from blood clots, and I still have some of them today. The fear of the unknown is a great obstacle for many of us, and it was encouraging to hear other people talking about it, face-to-face.

By now, you might be thinking, “Great, but I’m not diabetic, I have a blood clot, so why are you sharing this information with me? The answer is: Whether you have diabetes, have a blood clot, or have a clotting condition, we all share the same journey as a patient. We all must live day to day with an illness that might never go away. We have the same fears, the same struggles, and the same concerns. A person with diabetes might have to consider what he or she eats, and check his or her blood sugar. I have to consider what I eat and check my INR because I take warfarin. We both have to remember to take pills, go to regular follow-up appointments, be proactive in our health, and sometimes, we even have to miss out on things because our illness might take precedence over what we want to do.

What these people taught me is, no matter what the condition is, we all face the same fears, struggles, setbacks, triumphs and joys as a patient, and as a person. They taught me what I was supposed to be sharing with them: Sometimes it is easy to become fully consumed by our own disease and our own situation, but in fact, there are people all around us who can relate to what we have gone through, or what we are going through. As a blogger, and as a patient advocate for the VTE community, I become very consumed with that, because it is my passion, but it’s important to remember that I truly am not alone, even when I look outside of this community.

Below are some some resources that I want you to have. If you have diabetes, or if you want to begin your journey from patient to patient advocate, explore the links below for some essential tools.

Extra Diabetes Resources for You:

Did you know? Long-term diseases like diabetes are a risk factor for life-threatening blood clots. If you have diabetes, I would love to connect you with some of the resources and bloggers from the DiabetesSisters Weekend for Women.

DiabetesSisters
Blood Sugar Trampoline
Below Seven
Diabetes Mine
Yoga for Diabetes

Patient Advocacy Resources for You:

Did you know? Anyone can become a patient advocate just by sharing their story. Below are some resources to help you get started.

Charting Your Own Patient Journey (my slideshow from the conference)
How to Raise Blood Clot Awareness: Discover Your Personal Plan
Sharing Success as an Online Health Blogger
From Make-A-Wish Employee to Making One of My Own Wishes Come True

There is hope for healing and you are not alone,

 

 


Reader Writes In: Are you dealing with other health conditions besides blood clots? Where are you on your own patient journey? Where would you like your journey to take you?


Are you new here? Welcome to BCRN. Here is my story and more about me.


Are you worried that you might have a blood clot? Here is how to talk to your doctor.


Connect with BCRN on Facebook and in our private Group.

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.

 

Hope: A Special Message for You During Blood Clot Awareness Month

Nearly five years ago, my life changed forever when I suffered from a blood clot in my leg and in my lung. I went from being an active runner, to needing an oxygen tank to breathe. I spent several days in the hospital – my life in the balance – while doctors tried to figure out what was wrong with me. Up until that time, I thought blood clots only happened to old people who were sick, or who weren’t able to move around very much. I was 29 years old, not 89.

March – Blood Clot Awareness Month – serves as a prime opportunity to talk about blood clots. Each year, about 900,000 people a year are affected by blood clots in the U.S. alone. If a blood clot starts in your leg, like mine did – also known as deep vein thrombosis or DVT – and then travels to your lung – also known as a pulmonary embolism, or PE – it can kill you. About 100,000 people die every year due to a blood clot. t can also cause damage to your vital organs, like your heart and lungs. Blood clots – both in my leg and in my lung – were the most physically painful things I have ever experienced in my life. Quite frankly, it felt like I was dying – maybe because I was. The scary thing is, I didn’t even know that I was at risk for a blood clot, or that one could happen to me.

Know Your Risk for Blood Clots

Many things can place you at risk for a blood clot. Some of the major risk factors are hospitalization or surgery, hormonal birth control, pregnancy, treatment of menopause symptoms with estrogen, traumatic injury to the bone or muscle, a family history of blood clots, and sitting for long periods or best rest, just to name a few. Mine were caused by estrogen-based birth control and also the clotting condition antiphospholipid syndrome, which I will have to treat for the rest of my life. If you don’t know if you are at risk for a blood clot, find out right now. Speak with your doctor about your risk, and learn more about how you can prevent blood clots. Blood clots are preventable, and even treatable if detected early.

Know the Signs and Symptoms of Blood Clots

Just as important as knowing your risk for blood clots, is knowing the signs and symptoms of blood clots. I had no idea that the pain I felt in my leg – it felt like someone had the fleshy part behind my left knee in a vice that kept getting tighter – was a symptom of a blood clot. It hurt when I walked, the pain radiated down my leg to my foot. The pain did not go away with rest, elevation, ice, or even Tylenol. I did not know – and this is the scary part – that my inability to lay down flat, take deep breaths, or speak in full sentences was a sign of a life-threatening blood clot in my lung. Thank goodness, my primary care physician did, and he instructed me to the nearest Emergency Room without delay. I tried to live my life normally for two days before I went to the hospital, barely able to walk or breathe by that time. The admitting physician told me I would not have survived for a third day. If you don’t know the signs and symptoms of blood clots, learn about them right now.

I was in intensive care for several days as doctors worked to figure out why I was so sick. They worked to stabilize my heart, my lungs, my breathing and various levels and counts in my blood. I was discharged with a wheelchair and an oxygen tank, and I thought it was all over. What I did not know was that my journey had really only just begun. I spent a total of two years recovering from the physical damage that was done to my body, and nearly another year recovering from the emotional damage that was done to my mind.

Recovery: Not Just a Physical Journey

The emotional side of recovery is what I want to talk to you about this March. It’s the part that gets left out most often, if not entirely ignored in some cases. Sometimes, people don’t understand. Even people that we know and trust, like our family, our friends, maybe even our doctors.

People ask me all the time, “How did you survive?” To be honest with you, I have spent years thinking about my answer to this question. First, I had to ponder, did I really survive? People survive physical things that push them to their limits every day – floods, fires, animal attacks, being lost in the wilderness, and car accidents, for example. I believe some people even survive illnesses and diseases. After thinking about these types of situations versus my own, though, I don’t think I actually survived my blood clot – not in the same way. Surviving my blood clot was completely out of my hands. It was in the hands of my doctors, and perhaps even more importantly, a higher power – for me, it’s God – who wanted me to still be on this Earth. You see, I didn’t actually understand I might be dying, so in some respects, I couldn’t make the conscious decision to survive my ordeal.

What I did was overcome. After my pulmonary embolism, life became brutally unfair, and I dealt with a lot more than some people will ever have to deal with in their entire life. I lost a lot, nearly everything, and I experienced grief unlike any I had ever felt before. I lost my friends, my job, my medical insurance, my self-esteem, and my confidence – to name just a few things. I was in more debt than I could have ever imagined, more sick than I knew was even possible, and the blows just kept coming one after the other. I dealt with them one by one, battle by battle, fight by fight. Everything was a fight, it seemed. I tried my hardest to do what I could to improve my situation. Sometimes it did improve, sometimes it didn’t. Sometimes it got worse. Sometimes, I found, I had to accept the help of others to be able to help myself.   

What I did not do was give up, not completely. Now, this is not to say I didn’t throw in the towel on certain days, weeks, or even months, and swear I was done with it all. I did that. I did that a lot during my recovery. Yet, somehow, someway, I never gave up completely. I always found something to believe in. Even if that something was the thought that it couldn’t possibly get any worse. Then, when it did get worse, I thought, “It can’t get any worse than it is right now. Eventually it has to get better.” My dad told me the same thing, and I clung to that belief. He told me, “Someday, Sara, it all has to get better.” A few important things kept me going when I gave up on myself – my family, my dogs, music, and my writing. Without them, I would not be where I am today. 

Hope: A Special Message for You

Through all the loss and heartache and heartbreak, I always told myself there was something better on the horizon. The way I looked at it, if there wasn’t, then why was I still here? Back then – during those first weeks, months and years of recovery – you could have never convinced me that I would see better days. Yet, deep inside my heart, I believed there were better days ahead, even if it seemed like a child’s fairly tale at the time. That tiny, tiny ember never stopped burning, and I never stopped believing. I think that’s called hope. Hope for a better tomorrow, for less pain, for health, for wellness, for love, for peace, for forgiveness. Whatever it is that you need, there is hope that it will one day come to you. 

I am a different person than I was before my blood clot. I don’t think someone like me – or you – goes through a life-threatening illness and comes out the same on the other side. I also don’t think a person can understand that unless they have been through it themselves. This is the part of Blood Clot Awareness that is important for me to share: Surviving, overcoming or managing a blood clot is life-changing.

The second this that is important for me to share with you is: There is hope. There is always hope. Even when you hurt more than you ever thought possible, cry more than you ever thought you would, have reached the end of your rope, lost everything, are alone, or have a broken heart. Even when it’s all over and you have nowhere to turn – there is hope. There is always hope. Find something – no matter how small that something is – to cling on to, and cling to it with all of the strength you have left. Whether it be God, your spouse, your parents, your children, your pet, yourself, your garden, your journal, your favorite song, your favorite book, your home, your memories, your dreams – hold on to it and don’t let go. Don’t ever let go of hope. If you can’t find something to cling to, here it is: There is hope.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What is the hope that you hold on to? What is one thing you want to share during Blood Clot Awareness Month? How did you survive or overcome a blood clot?


March is Blood Clot Awareness Month (BCAM). Get the information that everyone needs to know.


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

Be Prepared for an Unexpected Health Crisis

Four years ago, I didn’t know the pain in my leg and in my chest, along with shortness of breath, were symptoms of life-threatening blood clots. I was incredibly lucky to get help for what I was feeling in time, and perhaps just hours before it was too late. This is especially true when you consider the fact that some people never experience symptoms of blood clots. They just don’t survive a blood clot in their lung, or pulmonary embolism. To say I survived what is an often silent, or invisible, killer is something that I think about quite often. Since my blood clot diagnosis and recovery, I have heard from countless people who have lost a friend of family member to a blood clot because they didn’t know they had one, they had no symptoms or they didn’t get medical care in time. It can feel impossible to be prepared for this type of unexpected health crisis.

To say I survived a silent killer is a large part of why I do the work that I do today. I hope that by sharing my story, I can help educate other people about not only the signs and symptoms of deadly blood clots, but also about their risk for one in the first place. I believe that knowledge is one of our best defenses against blood clots and knowing can help to save lives. Now that I know I am at risk for blood clots – and I know what they feel like – I will never delay seeking treatment for as long as I did. Two days of wondering what was going on nearly cost my life.

Carbon monoxide, also known as CO, is another often-ignored silent killer. It is a colorless, odorless, poisonous gas. Symptoms of carbon monoxide poisoning can include a dull headache, weakness, dizziness, nausea or vomiting, shortness of breath, confusion, blurred vision or loss of consciousness. CO poisoning is especially dangerous if you are sleeping or intoxicated, and is a medical emergency because symptoms can be subtle, but can also be deadly.

Those symptoms bring back some unhappy memories of what I experienced with my pulmonary embolism minus the severe pain. It was my hope to never feel anything that caused me great concern again. Yet, there I was on Saturday night, winding down and watching TV after dinner, when out of nowhere, I got a headache, felt dizzy, and felt nauseated. I shook my head around, trying to clear my eyes. The TV screen was blurry, and I suddenly felt out of place, or unsure of what was going on. Generally, my first thought would be “something is wrong with my INR,” but instead I thought, “It might be carbon monoxide poisoning.” I don’t know why I thought this. All I know is that I Googled the symptoms of CO poisoning (I know, never, ever do that) and the rest is history as we know it: I had carbon monoxide poisoning.

As it turns out, even more people experience CO poisoning that I realized. Per the U.S. Consumer Product Safety Commission Carbon Monoxide Info Center, more than 150 people in the Unites States die every year from accidental non-fire related CO poisoning. The U.S. Centers for Disease Control and Prevention states that an average of 430 people die in the U.S. a year due to CO poisoning and countless more are hospitalized due to symptoms. CO poisoning is often associated with consumer products, such as generators. Other products that can omit deadly CO include faulty, improperly-used or incorrectly-vented fuel-burning appliances such as furnaces, stoves, water heaters and fireplaces.

So, while I’m not exactly sure just how many people do die from carbon monoxide poisoning each year, I was exactly sure that I was going to be one of them. There was nothing that anyone could have said or done to convince me that I was not experiencing the symptoms of carbon monoxide poisoning. While I wasn’t running a generator, and I did not have a faulty or improperly installed stove, refrigerator, water heater, furnace or fireplace, I was certain I had missed something, somewhere, and one of these things was omitting odorless, tasteless, deadly gas directly into my bedroom. I was certain that when I went to sleep on Saturday night, I would not wake up on Sunday morning. The only thing the Internet could not tell me was if I had CO in my house.

When my husband came in from outside, shaking the snow off his boots, and proclaimed, “I feel funny in here, but fine outside,” that sealed my fate.

“I think we’re suffering from carbon monoxide poisoning,” I said. He promptly turned around and started lacing up his boots again.

“What are you doing?” I asked. He responded, “I know where this is going, you don’t have to tell me. We’re going to the store to buy a detector.”

Sure enough, at half past midnight on Sunday morning we were on our way to the closest store to find a carbon monoxide detector, but not just any carbon monoxide detector would do. We visited a total of three stores (thank goodness for 24-hour stores) before we found one that plugs in (and will therefore move when I am worried about another room in the house or work when the power goes out). Over an hour and over $40 later, I was back at home, eagerly reading the instructions to set it up. Much to my complete panic, it beeped wildly as soon as the back-up battery was installed, but soon settled on a “0” CO reading, and my sense of peace was restored. I must have been tired or dehydrated – or maybe I ate too much at dinner, much too late – and that’s why I didn’t feel good.

“So, we’re not dying of CO poisoning,” I said to my husband, thoroughly relieved. He replied, “I never thought we were,” equally relieved to be getting ready for bed. I proceeded to thank him profusely for trekking miles from home with me on a cold Saturday night just so I could have peace of mind. Okay, we didn’t trek – and I drove – but I am still grateful for his support in situations just like this.

I nestled into bed, a smile on my face, when one last thought crossed my mind: You’re crazy. I sat up like a lightning bolt, once again unable to relax. A thousand different thoughts entered my mind after that ranging from, “you don’t have every disease, ever” to “you might, you never know” to “you can’t tell anyone about this” to “that was probably a waste of $40” to “what if that $40 saves your life someday” to “you should probably have a CO detector in every room now” to “when was the last time you checked the smoke alarm.”

I only spoke one of them, “Do you think I’m crazy?” My husband answered from the darkness, “No, at least you know we aren’t dying of CO poisoning.” I waited for the “but,” the “and,” the “next time,” but nothing came.

Then he said, “Do you think you’re crazy?”

I didn’t answer him that night, but I laid awake for a while thinking about it before I came to one conclusion: No, I’m not crazy. But surviving something that can kill you – maybe even silently, with no warning – sure does change your perspective on things. I worry about more health-related things, I wonder if I have a health condition that isn’t easy to detect, I wonder if I am sick with something horrible I don’t know about, and yes, I sometimes think the tiniest inconsistency might mean something horrible is wrong with me. It can be maddening if I let it control me.

What I have also come to realize is that all I can do is be prepared, and if that means spending money to buy a detector so I don’t have to worry about carbon monoxide poisoning, then that is what it means. While having a CO detector might be pointless to someone else, it is invaluable to me to have peace of mind about one health condition I can’t otherwise control. Not unlike blood clots, I know my risk for CO poisoning, I know the signs and symptoms of CO poisoning, and I know how to protect myself and my family from it. This happens to be a health concern that was handled outside of a doctor’s office – my symptoms had subsided by the time we returned from the store – but even if it wasn’t: be prepared.

While the unexpected – and the unknown is scary – I think it is possible to be prepared for an unexpected health crisis. Talk to your doctor about your concerns, get your annual wellness and physical exams and tests, pay attention to what your body might be telling you, and take care of yourself to the best of your ability. If you do get sick or injured, have resources on hand to help you, know where to go to get the information you need. Know how your insurance works, how to get care if you don’t have any insurance, find a primary care physician you can rely on to help you get to the specialists you need to see, as soon as you need to see them. Whether you install a CO detector, quit smoking, start exercising, eat healthier, or wear a helmet riding a bike, be prepared to take care of the one and only you.

There is hope for healing and you are not alone,

 

 

 

 


Reader Writes In: Do you worry about health-related things more since your blood clot? How do you handle your anxiety?


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