Blood Clot Awareness Month 2019: Awareness Matters

March is Blood Clot Awareness Month. Find out what it is, why it matters, and how you can help make a difference.

Why Blood Clots?

It will soon be seven years since I had a blood clot in my left leg (deep vein thrombosis or DVT) that traveled to my lung (pulmonary embolism or PE), causing damage to my heart and creating a life-threatening situation. I did not know that I was at risk, both because I had an underlying autoimmune clotting disease called antiphospholipid syndrome, and because I was taking birth control pills with estrogen.

I was only 29 years old then, and for me, life had just begun. I was recently married, healthy, and contemplating a future of kids and home with my husband. I was running one day, when a horrible pain started in my left calf. It felt like a pulled muscle and progressed to feeling like my knee was in a vice. Less than two days later, I had pain in my left side, near the bottom of my ribcage that eventually felt like someone was stabbing me and all the air was deflated from my lung. Being unable to breath or speak in full sentences is why I went to the hospital, at the urging of my primary care physician, who I called on a weekend for help.

I spent ten days in the hospital, where my life hung in the balance for several days. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and grueling journey. It took me two years to recover from the blood clots that ravaged my body, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and my clotting risk with medications and follow-up appointments.   

While I am not exactly sure why my blood clots happened when they did, to the severity that they did, I do know that my experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world.  

Blood Clot Awareness Matters

Blood clots kill more people each year than AIDS, breast cancer, and motor vehicle accidents combined, yet so many people don’t think blood clots can happen to them, or surprisingly, they don’t know they are dangerous. Blood clots can happen to anyone, at any time. I was 29 years old and an active runner when my blood clots happened to me. I never expected it, and because of that, I almost died.

If you think blood clots can’t happen to you or someone you care about – they can. Take time this month to learn – and share – more about blood clots. Nearly all of us have access to someone else. Whether it be your friends, your family, your colleagues, your social media channels, or your community – share, share, share. It seems simple, but it truly matters.   

Knowledge Saves Lives

Sometimes I think about how different my situation would have been had I known two things: That I was at risk for blood clots and what the signs and symptoms of DVT were. If I had known, perhaps I could have addressed my risk with my doctors earlier, or when I had symptoms of a blood clot in my leg (DVT), I could have got help before it turned into a life-threatening situation by traveling to my lung (PE). I didn’t know either, and I almost didn’t survive. While I can’t say for certain what might have happened then, I wish I would have known.

Knowing information about blood clots does help to save lives, and I have heard countless stories from people who have read my blog and avoided a life-threatening situation because they got help at the first sign of a problem:

Blood Clot Recovery: Snapshots of You

Information about blood clots is easier to find now than it was when I first started writing my blog here, but there is still information lacking about blood clot recovery. Although, recovery information is much more readily available than it once was, and there are great organizations and people working to share information, where once there was none.

Talking about my experience has been one of the things that helped me to heal. Writing about my experience has helped me process what happened to me. I believe strongly in the power of sharing our experiences, and this March, I want to focus on how sharing our stories – whether publicly or in private – helps with healing and recovery. No one wants to feel alone in this world or feel alone when going through a difficult experience. If you’re struggling physically, you’re not alone. If you’re struggling emotionally, you’re not alone. This month, I want to share insights – or snapshots – of my recovery from blood clots with you and give you the opportunity to share with me and with one another.

Make Your Connections Count

I will be sharing new content on social media for the month of March, as well as many of my most popular posts. I will be talking about blood clot risks, signs and symptoms, and all about recovery, including anxiety, depression, lifestyle issues, treatment, and more. There will also be weekly opportunities for you to share your thoughts and experiences with your own recovery from blood clots.

My two most popular platforms are Facebook and Instagram, so if you’re not connected with me there, I look forward to seeing you. You can connect with me on Twitter too. My private Facebook Group is growing each day, and it is a great place to chat with people in real time about blood clots and blood clot recovery. I am there every day, so I would love to chat with you too.

Hope for Healing from Blood Clots

My message is this: If you are recovering from blood clots you are not alone, and while it is life-changing and even unbearable at times, it does get better. There is hope for healing from blood clots.

www.BloodClotRecovery.net

A Note of Gratitude

I would be remiss if I didn’t stop to talk about what I am grateful for since my blood clots six years ago. While I don’t often refer to myself as a survivor, I did come out alive on the other side of something that kills 100,000 people a year. I am grateful for my life, and I am grateful for the chance to help make a difference. By sharing my story – and my recovery – I hope that I can honor the lives that were lost and hopefully save lives in the future by sharing important information.  

I am grateful for my family, who supports me day after day, even when my work takes priority over them. They are: my husband, Michael; my dad, Bill; my sister, Mollie; my in-laws; and my dogs, Grace and Sadie. Thank you for believing in me, and the work I do, every single day.

I am grateful for my medical team, because without them I wouldn’t be here today. They are: my hematologist, my primary care physician, and the nurses and lab staff and my hematologist’s office. Thank you for caring about me, and for helping me live my best life with antiphospholipid syndrome.

I am grateful for the BCRN community. You all make it possible for me to carry on my work here, day after day. You inspire me, and you keep me motivated to talk about my experiences, with the hope that my sharing will continue to help you. Thank you for reading, for commenting, for sharing, and for connecting.

Where to Go for More

I hope you also connect with the National Blood Clot Alliance, if you have not already, where I work professionally in Marketing and Communications. We have several projects that we are unveiling this March that I am very excited about. To make my passion my profession has been one of the most rewarding experiences of my life. Additionally, my job has provided me the opportunity to reach even more people with life-saving information about blood clots. For information you can share too, please visit www.stoptheclot.org.

Get Your BCAM Bracelets

Shop for Blood Clot Awareness Bracelets through my Amazon Shop: Shop BCRN.

There is hope for healing and you are not alone,


Reader Writes In: What plans do you have for Blood Clot Awareness Month? Share in your journal or in the comments below – I would love to hear about them!


Read More: Blood Clot Advocacy and Awareness


The First 30 Days of Blood Clot Recovery: My Notes

My Recovery Notes are entries from a handwritten journal I kept for 30 days – from the time when I first thought something was wrong with my leg to the end of my first month out of the hospital. My notes start with the day I went for a short run, and I thought I injured my knee again. They end with the last day of my first month out of the hospital. You will notice there are no writings on days 6-15. This is the time I spent in the hospital, and my thoughts from that time are mostly non-existent. I don’t remember much of anything from the days spent in the intensive care unit, and only small things from the rest of my time in the hospital. My doctors believe the memory loss is a combination of severe trauma, repressed memories, and also being on pain medications for the duration of my time there. Maybe someday, I will try to write about that time. It’s still difficult for me to think about, but I also know the power of writing to heal.

Talking about what happened to me helped me to deal with the trauma I experienced in more ways than one. From the scattered thoughts and illegible writing on white pages to the clean, crisp design of this blog site, I took my words from paper to screen when I began writing my blog. I began writing about my experiences, with the hope that it could one day help someone else through a difficult recovery from blood clots, that was often isolating and overwhelming.

I have talked a lot about journaling, and how helpful it was for me. To this day, it remains a central part of the work I do here. I always share a journal prompt with you, at the end of each blog post, to encourage you to write down how you feel. It’s different than thinking about it, because by writing things down, you get them out of your head (literally or symbolically) and put them somewhere else. My journaling and writing has helped me to heal in more ways than one. I am able to get my worst thoughts about what happened to me out of my head, and onto a piece of paper or computer screen, so they can stop floating around.

I also hope that my writing helps other people who are struggling with the things that I once did. Helping people helps me heal too. I hope that by reading these notes you feel less alone, and understand just how life-changing and scary recovery from blood clots can be. I also hope that you read them and realize that there is hope for recovery from blood clots. There is hope for better days ahead, and a return to the things you love. Don’t give up. You are not fighting alone, and for the vast majority of people, it goes get better.

The First 30 Days of Blood Clot Recovery

Here are my personal entries from a handwritten journal I kept right after my DVT and PE.

There is hope for healing and you are not alone,


Reader Writes In: Journal your thoughts, or share in the comments below. What were the most significant challenges during your first month of blood clot recovery?


Read More: Resources for people who have been recently diagnosed with blood clots.


Happy 36th Birthday to Me

I don’t know what I had planned for this post, but I think it was something different. I wanted to talk about my birthday – I’m 36 today – and I started working on this post like all of my other ones, by looking for images and artwork that inspire and motivate me. In doing that, I came to the sudden and very dramatic realization that I don’t think anyone cares about the big 36. If I was turning 21, 25, 30, or even 40, there seemed to be plenty of images to choose from, but not a single one for 36.

So, I started thinking about it, and against my better judgement, I decided to take inventory of what 36 looks like. I have grey hair at my temples. I have wrinkles around my eyes and around my lips. My upper arms are flabby. My thighs rub together – and jiggle – when I walk. My stomach flab is flabbier than I would like. I pulled a longer-than-I-would-like-to-admit hair off of my neck the other day. For the first time in my life, I purchased skin firming lotion. I think it fights the seven signs of aging, but I’m hoping it fights fat too.

I decided to take inventory of what 36 feels like, because I thought it felt the same. It doesn’t. Most days, I feel pretty good, but little things occur every once in a while, that never used to. I can’t wear contacts anymore without my eyes feeling like sandpaper. I’m much more sensitive to hot and cold temperatures than I ever used to be. My stomach no longer appreciates the hottest hot peppers on the planet. I can barely finish a half a glass of red wine or a half a bottle of beer. If I don’t get enough sleep, I get angry, really angry.

I guess I got old.

I let that thought sink in for quite some time, and I realized, I don’t like it at all.

I still have a lot of living to do. I want to see more of the world, continue to help people through my career, and maybe even have a family one day.

I survived something that many people do not, and on second thought, I realized I was thinking about this all wrong. My body – and my mind – have been through a lot of changes these past six years.

Maybe I have grey hair at my temples because I have been through, and come out on top of, a lot of health-related stress. I have wrinkles around my eyes and around my lips, because I try to spend a lot of time laughing. My upper arms are flabby, my thighs rub together – and jiggle – when I walk, my stomach flab is flabbier than I would like, and my husband still thinks I’m sexy. I pulled a longer-than-I-would-like-to-admit hair off of my neck the other day, and now it’s gone. For the first time in my life, I purchased skin firming lotion, and if it makes me feel good, why not?

I can’t wear contacts anymore without my eyes feeling like sandpaper, but I can rock a great pair of glasses. I’m much more sensitive to hot and cold temperatures than I ever used to be, so thank goodness for tank tops and super-soft wraps. My stomach no longer appreciates the hottest hot peppers on the planet, and to be fair, they were the hottest peppers on the planet. I can barely finish a half a glass of red wine or a half a bottle of beer, but I never really drank a lot any way. If I don’t get enough sleep, I get angry, really angry, so I need to make sure I get sleep.

Then, I came to another realization: None of my complaints about myself have to do with my blood clot, my recovery, or my long-term treatment. Taking blood thinners, going to monthly doctor’s appointments, and seeing four or five specialists are not things that make me feel old. If those things don’t make me feel old, what reasons do I have to feel old? The things I have survived, and the things that I do to take care of myself now, remind me of where I have been, how far I have come, and what I need to do to live a long life.

It has been six years since my DVT, and life-threatening PE. Now, as many of you know if you read my blog, I consider myself recovered. I still take anticoagulants (warfarin) and will for the foreseeable future. I get my INR tested about once a month to ensure my medication is keeping me safe from clotting and unwanted bleeding. I go to follow-up appointments with my hematologist every three months. I stay alert for signs and symptoms of blood clots, or changes to my health because of antiphospholipid syndrome. Physically, I am doing well. I don’t have regular pain or ongoing swelling in my leg. My breathing is back to normal, and I have been walking and jogging again without too much of a struggle. Emotionally, I am also doing well. My experiences – and my worry about future experiences – no longer plague my every thought. I will always struggle with anxiety (particularly related to my health), fear of the unknown, and fear of pain. I deal with it as it comes, and I try to treat myself with the same kindness and understanding that I show to others.

I don’t blog as much as I used to — and maybe I will change that now that I am 36 – but that doesn’t mean I’m not continuing my work. Nearly all of my time is spent providing information and support to people who are recovering from blood clots, both on a professional and personal level. This is the work that I do every day, and I am grateful for the love, support, and encouragement that I receive from you each day. Thank you for making the work that I do possible. I’m a real person on the other side of this platform, and your encouragement for me means just as much to me as my encouragement for you means to you. As always, if you need immediate support, the best place to connect with me is in my private group on Facebook: BCRN Facebook Support.

Birthdays are to be celebrated, and I am heading into my 36th year with a lot of expectations for the future. I have a lot left to do, experience, say and share. I want to share my travels, more about my daily life with antiphospholipid syndrome, and more about my life with blood thinners. If I do have a family in the future, I want to share that experience with all of you too. I want to write about some of the things that have happened to me, that I just haven’t had time to do yet. I want to build a life – and a legacy – with my husband. We are not meant to live this life alone, afraid, or in the dark. If sharing my experiences can continue to help someone else, that is what I choose to do. I have been given the experience, the tools, and the determination to do so, and I won’t stop here.

So, let the celebration begin. In honor of my birthday, I am giving you a gift. You read that right! One lucky blog follower will receive a silver “Not Alone” Mantraband for my birthday. Mantrabands are simple, elegant bracelets with an uplifting message; promoting a lifestyle of optimism, positivity, mindfulness. Mantras got me through some of my hardest days in recovery. Wear this bracelet as your daily reminder that you are not alone in what you are going through. You are not alone in your recovery from blood clots. There is hope for healing.

My 36th Birthday Giveaway Details

9/4/18: This giveaway has ended. Congratulations to Anita Jude! Please check your inbox for an email from me, or email sara@bloodclotrecovery.net to claim your Mantraband. 

Use the Rafflecopter widget below to enter. Only entries through Rafflecopter will be eligible. This is a service that I use to keep track of entries, and to ensure a fair contest. Giveaway runs from August 30, 2018 – September 3, 2018. BCRN will randomly select one (1) winner on Tuesday, September 4, 2018. Winner will be notified on social media and via email, and will have until Thursday, September 6, 2018 to claim his/her prize. A new winner will be selected on Friday, September 7, 2018, if original winner does not respond.

Although this is a gift to you in honor of my 36th birthday, the cost of the Mantraband plus shipping is coming out of my own funds. Please, U.S. shipping/delivery addresses only. Thank you! Silver “Not Alone” Mantraband is valued at $25, plus shipping.

a Rafflecopter giveaway

Good luck!

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

 

 


Reader Writes In: What is your favorite mantra, phrase or quote? If you want to enter the Mantraband giveaway, click on the Rafflecopter above to leave your comment. If you choose not to enter, or if the giveaway has ended, please share your favorite mantra in a comment below.


Hope for healing after blood clots is a gift that you all have access to right now. Find out how I did it, and how you can too.


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

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.