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.}


 

Fix Your Thinning Hair

Sometimes, medications that keep us safe from a dangerous disease or condition, can also cause unwanted side effects. Anticoagulants, or blood thinners, help to protect us from blood clots, they can also cause troubling side effects sometimes. These side effects can range from mild, like a headache, to severe, like uncontrolled bleeding. Side effects can vary from person to person, and are different for different blood thinners. If you have any side effects while taking blood thinners, it’s important to have a conversation with your doctor about what you are experiencing.

Although listed as a rare, or even nonexistent, side effect for most blood thinners, some people experience hair loss, or hair thinning, while taking them. It’s important to let your doctor know if you are losing your hair, just in case something else is going on. Keep in mind that many things can cause hair loss, such as nutrient deficiencies, other diseases, hormonal imbalances, other medications, stress, and genetics. It’s important to remember that not all medications will affect everyone the same way, and not everyone experiences hair loss, or hair loss to the same degree. The bottom line is, if you are experiencing hair loss – or hair thinning – to any extent, it can be devastating to your self-esteem during what is already a difficult recovery from blood clots. No matter what the cause might be, I am going to share my top tips to help fix your thinning hair.

I have naturally thin and straight hair. I noticed about a year after I started taking a blood thinner, that my hair seemed thinner than usual. Due to my recovery and time away from work, I did not get a haircut for a very long time, and my hair was longer than it had ever been. Seeing my hair coming out in clumps on my brush was very upsetting to me. I found a hair stylist and made an appointment as soon as possible to help fix my hair.

I explained to my stylist that I was concerned about my thinning hair, due to the medication I was taking. I told her I was brushing my hair, and it looked like I was brushing it right out of my head. She inspected it closely, and said that while some medications can cause hair thinning or hair loss, my hair looked to be thinning mostly from the length of it. She explained that hair tends to thin the longer it grows, and when we brush it, it looks like more is coming out because it is so long.

I got my hair cut that day, but since I like my hair longer, I cut it to right below my shoulders, which was still significantly shorter than it had been. I noticed an immediate difference in the next few days as I was combing and styling my hair. It looked fuller and less hair came out on my comb and brush. I am not sure if I experienced hair thinning or loss due to my blood thinner, but I do know that I am more conscious of my hair, and I do care for it differently since starting blood thinners.

There are many things you can do to help fix thinning hair, and not everything works for everyone. It is important to make sure you are eating as healthy as you can, and that you are getting the right nutrients in your diet, which is also important for overall health and well-being. I personally don’t choose to take any extra supplements or medications to help fix my thinning hair, because that can cause interactions with my blood thinner.

I have found a few simple ways to help fix my thinning hair, and these things are part of my daily personal care routine. I am not a hair person, and I try to spend as little time on my hair as possible, but I do like for my hair to look presentable, if not nice. If you’re looking for hair styling advice, this is not the post for you. If you’re looking for some simple ways to help fix your thinning hair, here are my top five tips:

Tip #1: Get your hair cut, or trimmed, regularly.

This is my number one tip to help fix your thinning hair. Keep in mind, shorter hair sometimes looks fuller. I get my hair cut about every four months, which is not as regular as some people, but it is regular for me. Keep a close eye on your hair at first to see how fast it grows, and schedule your appointments around your hair growth. You can tailor your appointments to fit your schedule and your budget. Haircuts don’t have to be expensive, and sometimes you can have a friend or family member cut it for you to save money. No matter how you choose to do it, get your hair cut on a regular basis.

Extra: Find a hair stylist that listens to you, and specifically addresses your concerns about your thinning hair.    

Tip #2: Wash your hair with shampoo and water less frequently.

I was hesitant about this at first – because oily hair is not nice – but it really works for me. I only wash my hair with shampoo and water twice a week, sometimes three times if I have done something active or sweaty. The other days, I use dry shampoo to clean my hair without the stress of a full shampoo. Dry shampoo takes care of oil, and also adds body to my hair.

Extra: Not all dry shampoos are the same, and I tried about 167 before I found one I like. I use this dry shampoo. Get it here

Tip #3: Use products to help add body to your hair, like a root lifter.

Root lifter made a difference in my life long before I started taking blood thinners, and it is my favorite styling product. Most days, I spray dry shampoo, or use root lifter, comb my hair, and go. If you’re using multiple products, be careful not to use too many, which can cause your hair to become weighed down, which yes, can make it look thinner. I don’t use dry shampoo and root lifter together because the dry shampoo also adds body to my hair.

Extra: I don’t like wet products that tend to weigh my hair down and make it heavy, or thin. I use this texturizer/root lifter, which comes in a powder form. Get it here.   

Tip #4: Use products to help add texture to your hair, like sea salt spray.

If your hair is thinning, sometimes adding texture can help. You can do this with cut layers, but you can also do it at home, in your own bathroom. During the summer, I like to use sea salt spray on my hair, which adds a little texture, and smells like I just walked onto a tropical island. It’s easy – just spray it in damp or dry hair, and tousle with your hands.

Extra: A little goes a long way. I bought a travel size container of this sea salt spray, which lasted me all summer. Get it here.

Tip #5: Style with heat as minimally as possible.

I like to vary how I care for my hair from day to day. I mix up washing it in the shower, using dry shampoo, root lifter, and sea salt spray, depending on how my hair looks on any given day. Sometimes, I fully style my hair with a blow dryer, and that adds body and texture too. However, since I started a blood thinner, I try to style minimally with heat, which can further damage hair. Often times, I dry my hair fully at the scalp to add body, and dry the ends to a damp dry, and then let it air dry the rest of the way.

Extra: If you dry your hair on a regular basis, use a lower heat setting on your dryer. If you use a curling or straight iron, use a lower heat seating.   

I hope these tips help you fix your thinning hair. Give them a try, and come back to let me know what you think.

There is hope for healing and you are not alone,

 

 


Reader Writes In: Is your hair thinning since you started blood thinners? What tips can you share to help fix your thinning hair? Have you tried any of my tips? Did they work for you, or not?


NEW: Shop my favorite hair care and beauty products here.


If you’re feeling down in the dumps, here are my 7 Steps to Feel Better about Yourself.


 

How to Raise Blood Clot Awareness: Discover Your Personal Plan

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

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

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

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

 Step 1: Find your passion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is hope for healing and you are not alone,

 

 


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


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


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

 

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

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

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

Know Your Risk for Blood Clots

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

Know the Signs and Symptoms of Blood Clots

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

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

Recovery: Not Just a Physical Journey

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

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

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

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

Hope: A Special Message for You

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

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

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

There is hope for healing and you are not alone,

 

 


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


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


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

That one thing about blood clots everyone should know.

one-thing

When I was diagnosed with a blood clot and as I went through recovery, I was surprised how much I – and other people I knew – did not not know about blood clots. There was so much I wanted to share with people as I recovered – blood clots hurt, recovery took a long time and yes, you could have a blood clot if you were young, active and healthy. Sometimes, I wished I could just hand people a piece of paper (or several pieces of paper) that said, “Here, here is what you need to know about what I am going through right now. It’s not fun, it’s not easy, and yes, it takes a very long time. Here’s why.”

Have you ever felt that way too?

A number of weeks ago, I asked you a very important question on social media: What is the one thing about blood clots everyone should know? And you answered. 

If you have been diagnosed with a blood clot, it can be difficult to understand – and explain – what you are going through. Here are some thoughts about blood clots and blood clot recovery that you should know. These thoughts are compiled from people who have suffered from blood clots, or who know someone who has suffered from blood clots, as shared with www.BloodClotRecovery.net across a variety of social media channels.

You can also download and print these thoughts to read when you feel alone or to share with someone you know.

What is the one thing about blood clots everyone should know?

Blood clots cause pain.

It doesn’t always mean you’re going to die. I spent three days in the hospital scared I was going to die because I’d known two people who have died. A nurse and a wonderful doctor finally explained that while it was serious, and could have been fatal, I was going to be okay.

It takes time to heal and recover. Be gentle with yourself and listen to your body. It’s okay to rest – you’re not being lazy.

Blood clots are life changing.

Don’t ignore symptoms. It’s better to be safe and get checked out, then lose your life.

They can reoccur, even with proper medications and monitoring.

Listen to your body.

Anybody can get blood clots!

Don’t ignore blood clots – any one, of any age can get them.

They suck A** – just saying.

Definitely listen to your body, rest, ask a lot of questions, and see a psychologist, if needed. Having PEs as bad as mine were, it messed with me terribly.

You don’t always know you have blood clots….shortness of breath may be the only symptom you have!

Blood clots can cause anxiety, sometimes debilitating anxiety, for years to come. Talk to your doctor about that, and know you’re not alone.

It’s okay to cry.

Blood clots kill people.

You can have almost none of the “classic” symptoms, and still have blood clots, and you don’t always get an answer as to why they happened.

All I had was a pinch in my side. I had no idea that my life had forever changed that day.

Blood clots changed my life.

Not only did blood clots change my life in fear, but they changed how I am towards people. Anger, anxiety, depression – one day you think, “I’m okay,” and the next you’re in a panic. The second time around with PE, both due to giving birth, and I hate that this has happened to me. There needs to be a cure, but it feels like no one is even trying to find a cure. They tell you to pop a pill and send you on your way. Seriously.

Listen to what your body tells you, not what others tell you.

You will never be the person you were before. Be your best advocate. Ask any and all questions. Know that you aren’t alone. Listen to your body. It will get better!

This doesn’t happen to everyone, but it happened to me: A few days before my Pes, I had a strange feeling that I didn’t want to be alone, because for some reason, I thought I was going to die and I was afraid. I’ve read this happens to some people, so don’t ignore it, if you feel this. If you didn’t have it happen to you, I know it sounds crazy, but it’s real. Listen to your body and your mind.

You will have better days and bad days. Be thankful for the better ones.

Blood clots suck the life out of you.

It takes time to heal and post-clot anxiety is common. You don’t just start taking medication and everything is suddenly okay.

You may think you’ve just pulled a muscle.

You may look well on the outside, but there’s a lot going on inside and it changes people.

Blood clots are extremely painful.

The emotional side you have to deal with after is hard. Anger, anxiety, depression, etc. are all normal, but no advice is usually given to help with this, or it is not linked to what you have just been through. You have had a near death experience and it’s exhausting.

Pre-clot people should know that the condition even exist. Post-clot people should know everything about thrombosis, because your doctor might not know. We, the world, need more information put out in the commercial world. Way too little information is available for such a common, often fatal condition.

Thrombosis information should be as common as cancer and heart disease. Until I had my first DVT, I assumed it was no worse than a hiccup. I had heard of people (acquaintances, etc.) getting blood clots, but I never heard of it ever causing anyone any problems, and I never heard of anyone dying from them.

I had a DVT with no redness. I had a PE with no coughing.

I have a DVT and PE and it is not nice to go through for two years.

My DVT was asymptomatic below the knee. I only had one symptom: the sensation of a pebble in the back of my knee. A Doppler scan showed sluggish flow throughout my leg.

Blood clots can turn you into a hypochondriac!!! But it is always better to check.

Post-thrombotic (PTS) is hard to live with, but take I every day as it comes, being thankful I’m still here.

Blood clots can happen any time.

Blood clots left me without my brother and also ended my career!

Blood clots turn your life upside down…. the fear, the pain, the anxiety, the anger…. etc. I think about how close to death I was daily, and hope and pray that it doesn’t come back. I had bilateral PEs in December 2015, but it seems like yesterday. I have had so many trips to the ER and doctors afterwards, just because I am afraid that I have another. I am financially and emotionally drained.

Blood clots don’t discriminate! It’s not just surgery that causes clots. It’s not only immobility that contributes to the formation of clots. It doesn’t only happen in the elderly. Not all clots are in legs. People keep asking me, “Clots? Isn’t that what old people get after surgery while sitting around recovering?”

I’ve had two PEs. One with calf and chest pain. The second with no pain at all, just shortness of breath.

Just go to the ER, even if you think it is not a clot. Let go of the fear of going in for nothing.

When a group of doctors sit you in a room and tell you your diagnosis and anticoagulant therapy is your one and only option because the clots in the brain cannot be accessed surgically due to the high risk….You look at their discouraging eyes and realize all you can do is hope and fight. At any moment, you realize you can take your last breath, and all you have is this exact moment to live and breathe.

I’ve not had the easiest life. This though, was the experience that taught me about love, friendship, family, life, and that I was stronger than I ever thought.

It can happen to anyone, and you need to be strong throughout the whole recovery. Otherwise, you will feel lost and not have the courage to keep fighting through it all.

Even though the previous episode wasn’t that long for me, it still lingers in the back of my mind, when and how the next episode will be. Just one step, one day at a time. My main concern is the cost involved. If cost wasn’t a concern, I think that it would minimize a portion of our anxiety and just really concentrate on what is at hand.

Many people still do not know what they are or what the symptoms are – if you feel you may have them get to an ER as soon as possible! When you are unconscious you cannot describe your symptoms! Also, this is one of the most misunderstood medical problems.

How looooooooooooong recovery is… and sometimes you’re never the same.

Blood clots fundamentally change your outlook on life, which is not necessarily a bad thing.

My daughter has a better attitude towards life…for the most part.

It could happen to anyone, at any time!

They happen, but you can recover better than before.

It takes time to heal, even after the clot is gone.

Surviving one can cause a lot of anxiety, fear, and even panic. Don’t be afraid to seek psychiatric help or get counseling, and find someone that specializes in PTSD.

Anyone who has a blood, please join this group, Blood Clot Recovery Network.

There often aren’t answers.

Don’t be a hero, ask for help.

You don’t realize how close to death you are, but you can get better.

It can happen to you, and the only symptom may be a mild cramp-like feel, not a swollen, red, warm calf. Trust your instincts, and don’t be afraid to get checked out.

I never knew that pregnancy was such a high risk for blood clots. I think women should know that

I had six clots within 30 days of birth. I had no idea pregnancy was a bloody nightmare for sticky blood!

You can get swelling even after blood clots have gone.

Many any health care professionals aren’t well informed about blood clots. Blood Clot Recovery Network has been so helpful for me in learning others are going through similar struggles. You aren’t alone!

It can happen to anyone, at any time

Listen to your body!

I’m exhausted. Yes, even just getting dressed is too much, sometimes.

Age does not matter!

They could be deadly, if not treated

It can happen to anyone! You don’t have to be older or sick, it can literally happen to anyone, at any time, no one is excluded.

Anyone can get them!

You can survive.

Drink a lot of water, keep moving.

The symptoms and recovery differ for everyone.

Blood clots happen way more often than people think

There is no backsies when it comes to blood clots. Once you have one, the damage is done. Many survivors live with impairments from their clotting events.

Chronic pain in the leg after a clot can be devastating for so many. Things like sitting at a desk or flying are never the same.

There will be good and bad days.

Blood clots are life changing.

Don’t ignore the symptoms! Go to the ER and speak until someone listens! You don’t have to die from this.

Blood clots can happen to even the healthiest, most active people, out of nowhere. They need to be taken seriously.

We put on a happy face, even though we live with chronic pain.

It will be painful…you will be tired, a tired like nothing you felt before. People won’t understand, ignore them, and listen to your body.

You are your own best advocate. Research, ask questions, and get multiple opinions before settling on what just one doctor tells you.

It doesn’t matter how old you are; you can still get blood clots!

Recovery sucks!

In many cases, blood clots can be a sneaky killer. Mine was disguised as pleurisy, which could have cost my life. I didn’t go to my doctor until it was almost too late. I had no clue it was a life threatening blood clot.

Blood clots can be deadly.

When the doctor tells you it’s a bug bite and take some antibiotics, get a second opinion!

Blood clots can kill you.

Blood clots can happen to active teenagers!

Listen to yourself. If you know something is wrong, speak up, and don’t let your doctor’s just brush it off as nothing. Or in my case, the many times I brought up the different coloring and pain, doctors just said it was healing from my Achilles tendon surgery.

It can take much, much longer than you think to recover.

Blood clots can kill you, and recovery can leave you with lots of health issues.

Blood clots hurt.

Blood clots are life changing. It was the scariest time of my life, and continues to make me worried sick that it could all happen again! Also, the chronic, debilitating pain…..18 months for me, and I’m in chronic pain most days.

Blood clots aren’t always painful. I had one that felt like a small bruise, and it was dismissed, as I wasn’t screaming. To be fair, all my other blood clots were so horrifically painful, I thought I was going to pass out, and they were still missed.

Blood clots for me changed my whole life. They made me realize life’s too short. I think all your comments taught me that I’m not alone. Recovery is long. I am on medication for rest of life, and my health issues are endless, but I’m alive. Some people aren’t so lucky.

The fear never leaves you.

When discovered, you need to advocate for yourself and find the right doctors who will listen.

Blood clots can happen to anyone!!!!!

Listen to your body. If you think there might be something wrong, stop worrying that they will think you are crazy and spend the money, and go to the doctor. I had a small pinch in my chest, that was it. That small pinch saved my life, because I knew it wasn’t right.

Blood clots can happen to anyone

Blood clots are a silent killer.

I was told that a lot of doctors missed my diagnosis – a blood clot in the brain, and inflammation in my brain and spine. They asked what led me to go in, and I just knew that I needed to go in and that something wasn’t right. I am blessed to be alive. It has changed my outlook on a lot of things in life.

I thought I was starting to have panic attacks because of the palpitations and shortness of breath. I drove to my doctor’s surgery, only to be asked, “How long have your lips been blue?” I was taken to the hospital and resuscitated twice. After 14 months, I still get the odd twinge, but I’m on thinners for life.

The recovery process is very slow, and extremely difficult, and a huge emotional roller coaster, which includes a great amount of fear. Doctors talk about the physical aspects, but the emotional side is incredibly hard. Blood clots alter your entire life, and you are not alone. If you have survived, you won.

It doesn’t always take a warm leg for a blood clot to be there. If it’s very swollen, flush red when you stand, and very sensitive to heat, cold, and water, please have it checked out. Just because my calf wasn’t warm, even with a positive D-dimer, three doctors ruled a clot, because it wasn’t warm. Yet, three DVTs were later found in the same leg. Trust your instincts. I said outright it was a blood clot, and the doctors didn’t believe me. If someone says no, it’s not a blood clot, get a second opinion to be sure. If I did, it wouldn’t have broken off and went into both of my lungs. You know your body best.

Always get a second opinion, and if there is one, there could always be another one. The first time I had two blood clots in my brain, with more tests, they found a massive clot in my lung that could have killed me. This time, they found one in my aorta, and the doctor didn’t seem worried. They gave me a very low dose of blood thinner, I saw a new doctor who ran tests, and they found that I had two more blood clots in my brain. Ask a lot of questions, and if they don’t want to answer, find a new doctor!

Being a survivor of PE made me a better person.

Blood clots kill!

Homan’s Sign is discomfort behind the knee on forced dorsiflexion of the foot, and a sign of thrombosis in the lower limb. Everyone’s symptoms are different. This is how I knew that I had a potential problem.

I was diagnosed with a PE in June with no symptoms. I tested positive for factor V Leiden, a genetic blood disorder. If you have been diagnosed with a blood clot, get tested for blood disorders!

Blood clots are life changing, and not in a good way either! Be proactive in your care. Post-thrombotic syndrome is no fun.

If you have pain or difficulty breathing and shortness of breath, get light headed and dizzy, you could have pulmonary embolisms. I had them in the base of both lungs, and DVTs from my hips to my knees in both legs. I also have factor V Leiden. I recommend that anyone who has blood clots, get checked for blood disorders, deficiencies, and if you have any symptoms of blood clots, go to the ER right away.

If you are going through recovery, hang in there. I’m a survivor, and it’s going to get better with positive energies and a positive outlook, babe.

As some have said the emotional mental roller coaster after surviving may be one of the hardest things you’ll ever deal with. Also, if you’re planning to go on oral birth control, request to get tested for any blood disorders beforehand.

The recovery process is slow, long, and scary. And sometimes we suffer from PTSD after. I didn’t realize that I did until a doctor told me that!

Blood clots happen to young, healthy people for what seems like no reason at all (Look at people like Serena Williams, Nick Cannon, and Chris Bosch). They can happen to anyone, at any time.

There is hope for healing and you are not alone,

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Reader Writs In: What is the one thing about blood clots everyone should know? Share in the comments.


What does recovery from a pulmonary embolism look like? Get more info to share in this post.


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

What does it feel like to recover from a blood clot?

What does it feel like to recover from a blood clot cover

After I was first diagnosed with a blood clot in 2012, I was scared, lonely and ultimately terrified of what would happen to me. Doctors and specialists were telling me repeatedly that I was “lucky to be alive,” but I was in so much pain and distress I felt far from lucky. I was grief-stricken with loss and heartache and felt nothing like myself anymore. Truth be told, I went through a long period of thinking I would rather not live to see another day if it meant the pain would end. The physical pain from my pulmonary embolism (PE or blood clot in the lung) and deep vein thrombosis (DVT or blood clot in my leg) was the worst I have ever experienced in my life. The physical recovery period was the longest I have ever faced in my life. If you don’t know what recovery from a pulmonary embolism looks like, read this post to find out more about it from my perspective.

In those early days, I searched the internet for more information about recovery – and disappointingly found very little, which is one of the reasons I decided to start this blog – to help other people like me. Today, there is much more information on the internet, but still, I feel al great deal of resources are lacking, particularly when it comes to emotional and psychological recovery. Emotionally, surviving a PE was devastating for me and I still struggle with anxiety, depression, fear and guilt to this day, nearly four years later. So, what does recovery from a PE feel like? Let’s talk about it.

Recovery from a pulmonary embolism feels overwhelming. I don’t know where to start with the overwhelming part of recovery because it is so – overwhelming. For me, it started with a complete change in how I cared for myself and monitored my health. I was diagnosed with antiphospholupid syndrome – a disease I had never heard of, let alone understood – and with that came a new routine of INR blood draws, weekly doctor’s appointments, new specialists and regular exams. I had to mange a constantly changing medication schedule between myself, the doctor and the pharmacy. All of these physical things transformed into an emotional upheaval that I was not prepared to deal with in addition to being physically ill. I had no idea what was happening or what was going to happen. In just a few days, I felt like I lost complete control of myself, my thoughts and my life and there was no conceivable way to regain control. In fact, there would not be for the immediate months ahead.

Recovery from a pulmonary embolism feels frightening. I have never been more terrified than when I experienced my DVT and PE. Simply put: It’s scary to hear you should have died or that you almost died or that it’s a wonder you are still alive. It’s just as frightening to hear there is no immediate resolution to your situation other to wait and see what happens.

Recovery from a pulmonary embolism feels lonely. I was immediately isolated after my pulmonary embolism if for no other reason than no one I knew had ever experienced a PE themselves. I had no one to talk to about my pain or feelings. I had no one to tell me it would get better, or worse, or anything. I had no one to tell me what I was experiencing was normal or abnormal. I was just alone. The more alone I felt, the farther into isolation I sank, until I didn’t even want to see my family or friends. If no one could understand what I was going through, which is how I felt, it was better to be alone rather than spend the energy trying to explain a complicated recovery just to have the person say, “That sucks, when will you get better?”

Recovery from a pulmonary embolism feels anxious. I have always been an anxious person, but my anxiety skyrocketed after my PE – I felt like I was in a constant state of distress. My worry seemed limitless: Was I having another PE? Would I have another PE? Would I survive another PE? Would my husband or dad or sister or friend have a PE? Was that pain in my leg a new blood clot? Was the pain in my head a blood clot? Was the bump on my arm a blood clot? Was there a blood clot somewhere in my body I didn’t know about? What if my leg stopped working? What if I stopped breathing overnight? What if I never drove again? Ran again? Worked again? Cooked again? Walked up the stairs again? The scenarios replayed in my mind constantly and sent me into a continual state of panic (read this post for more about panic attacks post-PE).

Recovery from a pulmonary embolism feels like grief. The discovery of a life-threatening illness or disabling condition and/or bodily injury are commonly overlooked causes of emotional and psychological trauma (source) and yet, they are legitimate sources of trauma. Surviving a blood clot – remember a DVT can cause a PE which is life-threatening – is a traumatic event. It is normal to go through a grieving process following trauma because you have experienced loss, no matter how temporary and regardless of if you ever gain those losses back. I felt like my whole world and identity was lost – I lost my ability to run, my job, relationships, security and trust in my body, to name a few things. This loss was devastating emotionally, not unlike experiencing the loss of a loved one.

what does it feel like to recover pin

Psychological and emotional reactions to trauma can include, but are not limited to feeling: sad, hopeless, numb, disoriented, withdrawal, confusion, anxiety, fear, anger, confusion, irritability, mood swings, disbelief, shock, guilt, self-blame, survivor’s guilt, paralyzing fear, trouble relating to others and/or difficulty concentrating (source). You are normal if you feel these things.

A lot of bad feelings, right? Absolutely – overwhelming, frightening, anxious and incredibly sad feelings. The better news is, there are some things you can do right now to help cope with these feelings. In time, I have found the feelings get better. I no longer experience extreme fear, loss or isolation. And while I’m still working on some things, I am hopeful that I will continue healing.

  • Talk to your doctor and ask questions. Do not be afraid to ask your medical team for assistance, answers, a medication or a referral to speak to someone about what you are experiencing or feeling. Some things you can do now: read about DVT and PE; make a treatment plan with your physician; take your treatment plan one step at a time; read about other people’s experiences with DVT and PE.
  • Don’t isolate yourself. Find someone who understands, which is not easy. Some things you can do now: Utilize BCRN discussion groups; join online discussion communities; find a local support or social group; help someone else understand their feelings through sharing your own experiences.
  • Accept the process. For me, anxiety is lessened by the fact that know I know the signs, symptoms and risk factors for DVT and PE. If it happens again, maybe I will be better prepared the next time. Some things you can do now: Familiarize yourself with your risk factors and talk to your doctor about ways to reduce that risk; allow yourself to feel anxious; find an activity that helps you feel calm (I like to listen to music or write); be patient with your feelings.
  • Take care of yourself. You survived, remember? Your body and emotions need some tender loving care to get through the recovery period. Some things you can do now: Allow yourself ample time to rest; break large tasks into small, manageable ones and congratulate yourself as you achieve them; consider seeking professional guidance (that’s okay) to talk about what you are feeling; take steps to reduce stress, eat a well-balanced diet; keep moving, even if it is from your seat; engage in your follow-up care; do something you enjoy.
  • Treat yourself kindly. It’s not a race to get better – and your body and emotions may need more time to recover than you want them to. Some things you can do now: Be aware of the way you talk to yourself; allow yourself to acknowledge what you are feeling – it is okay to feel this way.

Reader Writes In: What does recovery from a blood clot feel like for you? How do you manage or address your feelings?

There is hope for healing and you are not alone,

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