Why You Need A Medical ID

Disclosure: I was given a credit from American Medical Id® to select and engrave a medical ID product for review. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

As a child, I had a friend who wore a medical ID for a peanut allergy. I asked her about it once, “Do you like wearing a bracelet all the time?” She just stared at me, and then she said it didn’t matter. She said it was important because peanuts could really hurt her, and the bracelet let people know. I remember being afraid of peanuts for a little while, because I didn’t understand, and then I wondered what it was like to wear a big, shiny bracelet all the time, even in the swimming pool and to bed. I’ve never forgotten the image of that giant medical bracelet on her tiny wrist.

I never imagined that I would be in a situation of needing to wear a medical ID. For my childhood and a good part of my young adult life, I didn’t have allergies, health conditions, or medications that were important to know about in an emergency. However, a DVT and PE in 2012 changed all of that and I found myself on long-term treatment with the blood thinner warfarin indefinitely. For the most part, I view warfarin as something that I need to stay safe, if not alive, and I don’t hate it. It’s hard for me to think of it as life-saving, but I do know it helps to prevent another blood clot that I might not survive again.

Blood thinning medications do help save lives, but as with any medication, there are risks that come along with taking blood thinners. One of those risks is unwanted or uncontrolled bleeding, and usually, you can avoid bleeding risks by taking your medication as prescribed and keeping in good communication with your doctor. If you take warfarin like me, have your INR monitored regularly to ensure effectiveness.

Catastrophic bleeding – like from a car accident or injury – can produce life-threatening bleeding that requires emergency medical treatment. I don’t think about being on warfarin all of the time anymore, but it’s never too far from my mind, and one of my worst fears is that I will have an accident while I am on it and be unable to tell anyone that I am taking this medication. When I started thinking about all of the ways I could be injured without someone there to help me, or without someone who knew me, I realized that a medical ID was an essential part of caring for myself after a blood clot.

If you take an anticoagulant, you should consider wearing a medical ID so that emergency responders and medical doctors know how to best treat you in an emergency, or if you can’t share your medical history yourself. It is important that they not only work as quickly as possible to stop any life-threatening bleeding, but also that they understand you are at risk for blood clots.

There are numerous places to purchase a medical ID from, and I don’t believe they are all the same. I’ve had a few medical IDs that were not worth the money I spent on them. When I was given the opportunity to review a medical ID of my choosing from American Medical ID®, I was excited to give them a try. I chose the Sterling Silver Medallion Red Charm Bracelet for my medical ID.

Read more about Medical IDs for blood clots from American Medical ID®.

Front of my American Medical ID®:

What I love: The medical emblem is large, red and easy to identify in an emergency. The charm design is unique and feminine too, but it is still recognizable as a medical ID. The design I chose is sterling silver and it is of high quality.

What I wish was different: I wish the chain was heavier/chunkier. This is a lot more delicate than I thought it would be, so if you like delicate jewelry, you will definitely love this. I also wish it was easier to get on and off (I don’t sleep in it unless I am traveling away from home), but I think this is pretty standard with any clasp such as this one. I’m not worried about it coming off accidentally, it’s very secure.

Back of my American Medical ID®:

What I engraved:

My Name (first and last)
My Date of Birth (XX/XX/XXXX)
WARFARIN ASPIRIN
PROLONGED PTT W/
INHIBITOR INR
HX VTE

A note about my engraving: I talked to my doctor about my situation, and he suggested I keep this information regarding a prolonged PTT with inhibitor INR readily available in case of an emergency. He also said to let my family members know this information in case I am ever hospitalized or need surgery. I have an interesting and complicated set of circumstances. In short, this information means that a heparin (blood thinner) IV, should I need it, could be inaccurately dosed due to an INR inhibitor that I have. I have this information stored in my phone – and in my relative’s phones – and now on my new medical ID.

What I love: For the size of the charm, I could fit a lot on this ID. The type is large and easy to read.

What I wish was different: I wish the engraving was oxidized, or a little darker (it is still readable).

I consider a medical ID an investment, and it might be something you have with you for a very long time. Since I have been taking a blood thinner, I have had a few medical IDs. Some with different names of the different blood thinners I have been on, updated contact information, necklaces, bracelets, and even a keychain. I am a jewelry person, but I was annoyed and frustrated with always having to think about – let alone wear – a medical ID. I like to change my jewelry around often, and I don’t like to sleep in it. If I am going to wear something all of the time, I have to love it, and let’s be honest, who loves a medical ID?

It may not be something we wish for or want, but I do think American Medical ID® makes it a whole lot nicer to own a medical ID. I love that they offer a wide variety of styles and products – for men and women – with a broad range of prices too. I believe there really is something for everyone from American Medical ID®. I like the way my American Medical ID® stands out among the other bracelets I wear. It looks like a medical ID, but it is also one that I feel good wearing because of the style. This ID is extremely lightweight and comfortable to wear.

American Medical ID® has an easy to use, and very informative, website. The engraving process is also simple – it costs just $7 – and they also have excellent customer service. I got my ID really quickly – within a week of ordering – and it came expertly packaged and included a small carrying or storage pouch. If you’re looking for a medical ID, I recommend you try American Medical ID®. I’m really happy with my bracelet, and I plan on wearing it.

Here are some of my thoughts about how to select and engrave your medical ID.

My Top Tips for Selecting a Medical ID:
  • Pick one that looks like a medical ID (not one that is too “pretty” or that “blends in”)
  • Pick one that is comfortable for you, or that fits in with your lifestyle
  • Pick one that is easy for you to wear, or get on and off

More tips from American Medical ID® about how to select your medical ID.

My Top Tips for Engraving a Medical ID:
  • Talk to your doctor about what to engrave on your medical ID. You may think this sounds silly, but I had no idea what should actually be on mine, until my doctor happened to mention it.
  • Include your full name
  • Include your date of birth (month, day, year)
  • Include the name(s) of your medication (I don’t recommend saying “blood thinner” or “anticoagulant” because it is not specific enough. Some anticoagulants have bleeding reversal agents, and some do not.)
  • Include your medical history, or essential facts about your condition
  • Include an emergency contact number

More Tips from American Medical ID® about how to engrave medical ID.

More Tips:
  • If you think your medication might change frequently, don’t get an expensive medical ID
  • Once you do get a permanent ID, select a material type that will last (I prefer stainless steel or sterling silver)
  • If you can’t fit everything you think you need on your ID, you could engrave “See Wallet Card” or something similar, and then carry additional information on your person
  • If you don’t wear jewelry, consider a keychain, or other accessory that you can carry with you

Read more from American Medical ID® about why a medical ID is critical.

If you’re taking a blood thinners, I strongly suggest wearing a medical ID. Thank you to American Medical ID® for the opportunity to review and wear an ID from you.

There is hope for healing and you are not alone,

 

 


Reader Writes In: Do you wear or carry a medical ID? Share in the comments.


Thank you to American Medical ID® for the opportunity to review and wear one of your medical IDs.


Get more tips about how to engrave your medical ID from BCRN.


Have an iPhone? You can update your iPhone with a portable medical ID (and it is free). Go to your Health App (pink heart) and select Medical ID to fill in your personal info). Also, find other ways to stay safe on the go.

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


 

 

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.