June 2, 2019

Seven Years Later

Blood clots changed my life. Now, seven years later, I am sharing where my journey has brought me.

www.BloodClotRecovery.net

Seven years ago, a blood clot in my leg (deep vein thrombosis or DVT) that broke apart and traveled through my bloodstream to my lung (pulmonary embolism or PE) nearly ended my life. I remember this day seven years ago pretty vividly. It was a Saturday, and I got up early to meet my training group and run a few miles. I had just returned to training after running a marathon in Florida after taking some time off to let what I thought was a knee injury heal. I was dismayed to feel the familiar pain in my calf, only this time it radiated down to my ankle too. I said goodbye to my friends, went home, and took a nap.

I woke up several hours later with a really bad cramp in my left side. It hurt to take a deep breath, and I pretty much said I was done with running. I blamed the cramp on dehydration and took a hot shower. That made me feel better, but I was still tired and didn’t feel motivated to do anything or go anywhere. I laid on the couch most of the day, barely cooked dinner when my husband got home from work, and went to bed early. It crossed my mind that it was worrisome that it hurt worse to lay flat than to slightly recline.  

Sunday morning, I woke up feeling worse, only my leg hurt to put any weight on it. It felt like I couldn’t catch my breath, so I resolved to take it easy and rest before going out to dinner for my sister’s birthday later that night. By the time evening rolled around, though, I called to cancel, stating I didn’t feel well. My husband and I tried to find open urgent care, with no luck. My family called my primary care physician out of concern – I never bailed on outings like birthdays – and he called me on my cell to ask what was going on. I explained that I pulled a muscle in my side, and I could barely breathe or talk. I told him that wasn’t my concern though, my concern was that I couldn’t walk on my leg. The next 30 seconds of silence were the longest I have heard in my life. My doctor said, “You need to go to the nearest ER and if you’re not going to go, you need to tell me where you are so I can call an ambulance.” Alarmed, I asked why.

He told me he believed I had a blood clot from my leg going to my lung, and I was in immediate danger of losing my life. Bewildered, I told him I would go. He said, “which hospital?” and I named a small one three minutes from where I lived. “No,” he said, “I need you to go to one with a trauma center. This is serious, and I’m calling ahead.” Now completely alarmed, I hobbled down the stairs and told my husband to drive me to the ER because I was dying.

I don’t remember much of the next week of my life. I was admitted ahead of a very long line at the hospital and within a few hours, I was diagnosed with a DVT in my left calf and a PE in my left lung. None of it meant anything to me, and I was in too much pain to ask or care. My husband was told the next few hours were uncertain, and my family came to see me – one by one – in a strange ICU room where my bed was wheeled next to a crash cart for safety. I had one nurse whose job it was to watch me for the next 24 hours. I wasn’t allowed to move or use the bathroom. I blacked in and out of consciousness for the next several days as either pain or pain medications fought for control of my body and mind.

I work up a few days later in a different ICU room with my husband sitting next to me holding a doctor’s card that said “Oncologist” on it. I asked if I had cancer, and my husband said they had no idea what was wrong with me, but they were coming to talk to us soon. I fought to stay awake, only to hear that I had a disease I couldn’t pronounce. I fell asleep that day with a peanut butter and jelly sandwich in my mouth. It was the last thing I would eat for a while aside from shakes to keep me sustained.

I was diagnosed with antiphospholipid syndrome, or APS, which is an autoimmune disease that, in simple terms, causes the body to clot when it shouldn’t. There is no cure for APS, and it can cause some pretty serious problems like blood clots, miscarriages in women, heart attacks, and stroke. Doctors do not know why I have it, or what caused the disease to cause blood clots when it did. To this day, I don’t have any more answers than I did then.

Seven years later

I was discharged from the hospital about a week later in a wheelchair and with an oxygen tank. I was ecstatic to go home, but little did I know, my road to recovery would be long and winding. The next few weeks and months were filled with doctor’s appointments. I had my blood tested numerous times, and I had a couple of follow-up scans to see if or how my clots were healing. I struggled physically with more pain than I have ever felt in my life. It hurt to do simple things like walk, talk, breathe, and move. I needed help showering and getting to the restroom. The pain was unimaginable.

Emotionally, I faced more challenges in the coming months – and years – that I did not know I would face. My self-esteem was destroyed. I eventually lost the job I had then, and my personal relationships were tested and strained. Living in constant pain was miserable, and I lost all hope that things would ever get better. There were times I wanted to end my life because the pain was so bad. My dad encouraged me to keep a journal and write down what I was going through, so I could look back and tell other people what happened to me. I started writing bits and pieces of memories and days that made no sense to me or anyone else. From those journals, I started this blog, because I knew didn’t want other people to suffer like I was, even though I was suffering still. I wanted to know that I wasn’t alone, and I wanted other people to know they weren’t alone. Writing this blog helped me hang on in my darkest moments when I often had nowhere else to turn.

Now, seven years later, I am physically healed from my blood clots, but not from APS. I take warfarin every day and have my blood monitored regularly to make sure it is working as it should, and I see my hematologist every three months or so. I am ever vigilant for signs of a clot, even though I have faith in my medication that works to prevent clots. I live pain-free most days, although sitting or standing for too long can cause my leg to ache from time to time. I am also vigilant for signs of stroke and heart attack. Today, I consider myself physically healed from blood clots. Aside from medication and medication management, my life is pretty much the same as it was before.

Seven years later, I am emotionally healed from my blood clots, but that took a lot longer to do. It is just within the last couple of years that I can tell my story without crying, I can hear another story without crying, and I can separate what happened to me from what is happening, or will happen, to other people. My thoughts and emotions are once again safe with me, not recklessly rocketing through my mind. Now I just work to manage general anxiety about my health and stress and try to obtain a good balance between life and work (that doesn’t always go so well). I’ve conquered some major obstacles, including a long-haul flight and vacation to Europe and several extended road trips, which are now some of the greatest memories that I have.

Seven years later, my life is nothing like what it was then. Sometimes, what happened to me feels like a very distant memory, yet with the work I do, not a day goes by when I am not reminded of how very real it all was. However, my thoughts have shifted from “what I went through” to “what can I do.” I know that I have an important role in this community, and I know that a lot of people rely on my work here as a symbol of hope when they have no other. That is not something to take lightly or to take for granted.  

seven years later: empathize with any difficult situation

Seven years later, I am still blogging here at Blood Clot Recovery Network. Healing from my experience, I believe, has led me to be a better blogger. Being able to acknowledge my emotions, but not let them control me, has allowed me to lend a greater empathy to you, the people who are suffering like I once was. I see you. I see that you are suffering, and I want you to know that there is hope for better days ahead. The pain, for most people, gets better. And, if it doesn’t, you can usually find ways to manage it or address it. It doesn’t make it hurt any less right now, though, if you’re stuck there in that dark, painful place.

It is true that most people do recover from blood clots and go on to live normal lives again. It just might not feel like it from where you are right now, and you might not believe it. That is okay. Healing is hard work, and it can be a long road. If you’re struggling physically, talk to your doctor about how to manage your pain, and if you’re not getting better, talk to your doctor about a plan to help you. If you’re struggling emotionally, reach out for help. You should not suffer alone or in silence. There are people to help you, both in the medical profession and in the community. Ask for help, make a call, make an appointment, or reach out to someone that you trust.

Seven years later, I thank you and this community for everything you have done to support me, to support one another, and to help raise awareness about blood clots and clotting disorders. If you have a blood clot or clotting disorder, know someone who does, or even if you lost someone to these conditions… you are so loved. My healing has come full circle, and I am here to help others through the same journey, which I try to do each and every day. My professional work at the National Blood Clot Alliance has given me an even bigger platform to give back, but this blog retains a pretty special place in my heart, particularly for those of you that are suffering and struggling.

seven years later: give your support and love generously.

If you’re feeling better like me and are called to lend your support to others who are still healing, you can do so in several ways: Join my private Facebook Group and talk about it or connect with me on social to share my blogs.

seven years later: there is hope for healing, and you are not alone.

My mantra hasn’t changed seven years later: There is hope for healing from blood clots, and you are not alone. It rings true to this day, even for me. Thank you for supporting me on this journey. Whether you are here for the hundredth time or the first time, thank you for taking the time to read what I have to say. Thank you for talking about your blood clot recovery with me, and with this community. It matters, you matter, and blood clot awareness matters.

There is hope for healing and you are not alone,

Reader Writes In: Where are you in your recovery journey? Has the BCRN community helped you along the way? Share in your journal, or in the comments below.

www.BloodClotRecovery.net

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March 13, 2017

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, as many as 900,000 people a year are affected by blood clots in the U.S. alone. If a blood clot starts in your leg as 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. It 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 was 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, sicker 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 fairy 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 – go 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.

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July 1, 2015

Why You Need A Summer Bucket List

Bucket List Cover

Summer is a time for fun, for adventure, long walks on the beach, sundresses, shorts, campfires, concerts and patio parties. It’s a time to get out, be active, enjoy the warm weather and forget about all of your worries for just a few months. It’s a time to be spontaneous, even reckless, and try new things.

Unless you are recovering from a blood clot, then it can be discouraging, disheartening and a reminder of all the things you only wish you felt well enough to go do. For many of the reasons listed above, summertime is one of my favorite times of year (fall is the other), but when I was diagnosed with a blood clot on the first of June in 2012 and discharged from the hospital with my own oxygen tank, I knew summer was not going to be anything like I hoped. Probably ever again, for that matter.

In fact, I spent two summers not doing much of anything I once enjoyed. The heat, humidity, compression stockings, swelling and fatigue proved to be immensely debilitating and I was miserable. I gave up on the things I loved, and I have up on enjoying summer again. The thought of going on vacation and being away from medical professionals and a hospital I trusted was a source of great anxiety; not to mention, my mind wondered how would I travel and still reduce my risk for a DVT? What if something happened while I was on the air or in the road? What if I couldn’t speak for myself and was separated from my family? The anxiety plagued my mind for two years and vacation was out, I suddenly preferred to stay close to home.

As three years have gone by since my blood clots, I started to think about summertime travel and the things I once loved, like camping and bike riding. The anxiety has lessened, I know how to keep myself safe during travel, my INR and medication management has plateaued and I am tired of missing out on summertime activities so this year, I created a summer bucket list and you need one to.

Why?   

Goals foster feelings of accomplishment and therefore, healing. Throughout my recovery, it was very hard for me to set goals that I thought were attainable because I felt like I could not accomplish anything. However, once I started to feel better and set a few goals for myself (like going to the grocery store alone or writing a new blog post), I started to feel better. As I began to make progress, I made more goals, which positively impacted my overall health. Goals, even small ones, are important to reducing anxiety and promoting positive feelings of self-worth. 

You do not have to stop living just because you had a blood clot. Getting back to any activity, not to mention things you once enjoyed, is really hard after a blood clot. I recall wondering if I could do anything after my blood clot because it sure felt like I couldn’t. In the beginning of my recovery, I questioned whether it would even be safe to drive a car again because of the risk of a car accident. Now, I drive my car every single day with little to no thought. Does it still cross my mind? Yes, that and many other things. I still suffer from great anxiety at times, but I also have more confidence to go out and do the things I love. Last summer I rode my bike for the first time and I even took a few flights since my blood clot. I have ridden roller coasters, gone camping and backpacking. I will live my best life, in spite of my diagnoses of the clotting condition antiphospholpid syndrome and longterm treatment with blood thinners. It may take some time, and that is okay, but you can live again.

We all need a little — or a lot — of adventure from time to time. Remember that backpacking trip I told you about? Enough adventure for me for a while, but you know what? It was totally worth every second of risk. Through taking a risk that was not even normal for my everyday life, I learned I can accomplish great things and I will. Stepping outside of our boundaries boosts confidence, mood and self-esteem. Your adventure can be a shopping trip to the mall, a dinner date with a friend to a new restaurant or a picnic at the lake. Pick something you have never done or haven’t done in a long time and make it an event. 

You deserve the best in life. After my blood clot, I spent a lot of time sitting back and waiting to see what would happen. Not only was I in physical pain and discomfort, I was scared out of my mind that I would have another pulmonary embolism and that would be the end of me. I was afraid to move, even afraid to breathe, because each breath might be my last. While I believe every Survivor needs to take time to grieve and process what happened to them, both physically and mentally, I do not wish anyone to live in fear of the rest of their lives. You deserve the very best life has to offer. You deserve to enjoy your time here and not be afraid every moment. Make a plan to do something for yourself and follow through. Get a manicure, color your hair, buy a new outfit or take a day trip to the lake, which you’ve been dreaming about for a few months now. 

This is your only life. Your only life! Get out and make the most of it. We have all come too close to death to waste any second of it now. I know surviving a pulmonary embolism when so many have not has given me a new appreciation for the life I have. Even if my steps are small, I will take every one on the journey I am still privileged to be on. Join me! 

Now that you know why you need a summer bucket list, how do you go about making one?

First, there are no rules! It’s your list. You can put as many items or as few items on the list as you want. Make your list manageable and realistic, but don’t be afraid to dream. Put a deadline on your items and do your best to reach it.

It might look something like mine….

This summer I want to:

  1. Go on a road trip
  2. Swim in the ocean
  3. Go backpacking
  4. Spend a weekend getaway somewhere new
  5. Visit a new museum 
  6. Watch the fireworks for the Fourth of July from somewhere new
  7. Go canoeing on a new river/creek/lake
  8. Sleep under the stars
  9. Visit a new state park
  10. Visit a new city or town for a day

Just like any goals that render success, those are pretty specific objectives, obtainable for me and give a timeframe that I know I can reach.

I am on a road trip up the East Coast right now (my first one since my PE in 2012) where I plan to swim in the ocean, watch the fireworks in Savannah, Georgia and visit a few new towns along the way, including Colonial Williamsburg. I am more than ready to tackle backpacking again (without incident this time, I hope). These are things I don’t normally do in the summertime and they are the perfect summer activities that I missed out on during the years of my recovery — time at the beach, a stroll on the boardwalk, campfires, s’mores, roadside attractions and only a sort-of-definite-plan. I’m staying safe on the road trip by hydrating, stopping to move every couple of hours, wearing my compression socks and while I am no longer afraid to travel since my blood clots, I have been afraid I would not enjoy my time away. Even that anxiety has lessened, though, and I am looking forward to many summers full of bucket lists. 

Reader Writes In: What’s on your summer bucket list?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

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June 3, 2015

Three Years of Recovery from a Blood Clot

Three Year Recovery Cover

Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.

I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.

In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.

And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.

Physically

Out of the woods and into…another woods. Critical Care Becomes Longterm Care.

At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.

Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.

Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.

IMG_6099

Lifestyle

Don’t sweat the small stuff…because it is really the big stuff!

Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.

What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.

What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.

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Psychologically and Emotionally

Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real. 

The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.

What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.

What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.

Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.

There is hope for healing and you are not alone,

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Filed Under: Educate, Empower, Encourage, Enrich Tagged With: , , , , , , , , , 53 Comments
December 31, 2014

The Top 5 Reasons Why I Don’t Make New Year’s Resolutions

The Top 5 Reasons Why I Don’t Make New Year’s Resolutions Cover

As a [former] runner, I am accustomed to making New Year’s Resolutions around this time every year. Most of them stemmed from fitness goals: I’m going to run five half marathons, run a marathon, run faster, run smarter, lose weight, eat better, drink more water and start lifting weights again. And then some personal ones like I am going to journal every day, spend more time planning blog content and do more outdoors. Sometimes they are even ambitious like I’m going to take a three-day canoe trip or backpack with my husband. Sometimes the Resolutions happen (I survived backpacking indeed, but just barely) and well, that’s about it. Mostly they don’t happen and I end up feeling bad about it every time I reflect on what I should have or could have done – but didn’t. I feel guilty and sometimes even worthless. And all because of the New Year’s Resolution label. So here it is, The Top 5 Reasons Why I Don’t Make New Year’s Resolutions.

I don’t make New Year’s Resolutions because in reality, they don’t work out.

We set a goal at the first of the year – a really big, scary, hairy goal (like run a marathon) and sometimes, we have no idea about the commitment behind making such a promise. When the goal proves to be or later becomes unattainable, it feels like a failure to not complete it. Failure is hurtful, damaging and painful – both physically and mentally. And, it is in reality often not a failure because plans change, people change and circumstances change – making New Year’s Resolutions a great challenge to successfully complete.

I don’t make New Year’s Resolutions because I prefer to set goals with measurable progress.

Instead of deciding to run the marathon, it is more beneficial for me to set small goals like walk around the block with my husband and dogs or maybe even run-walk a 5K. Small goals, with measurable progress, work better – small steps one at a time eventually add up to a great distance. Instead of losing 75 pounds next year, maybe I will find a successful weight loss program that works for my schedule and lifestyle, join an online support group or commit to doing Weight Watchers for six weeks. If I start to see results with a program that works, I can alter my goal to fit my needs without scratching the Resolution by January 19 and getting discouraged. I’m still getting healthy and I’m not damaging my self-esteem by setting too high of a goal early on in the year. If by March I have successfully ran-walked a 5K race, maybe I then set the goal to run the next one of run-walk a 4 miler. Maybe my goal is to being an exercise program, to lace up my shoes or to join an aerobics class and from that foundation, my future goals can grow. Progress is made little by little, and I am inspired to keep going.

I don’t make New Year’s Resolutions because life doesn’t go according to plan.

Especially for someone moving through recovery or facing a chronic illness. Sometimes taking care of yourself is the most important thing you can resolve to do. If you face additional health challenges during your DVT and PE recovery – which can be common – your health may completely derail what you had in mind for a Resolution. Or, for example, your recovery could take longer than expected. Just because you need to focus on yourself and getting well does not mean you are a failure for not obtaining your New Year’s Resolutions – it makes you normal.

I don’t make New Year’s Resolutions because a lot can change in a year.

And let’s face it, it probably will. The person you are today is not the person you will be tomorrow, next week, next month or at this time next year. Your goals, priorities, motives and direction in life may all change from day-to-day, especially as you move through a difficult, confusing and frightening recovery and guess what? That is okay.

I don’t make New Year’s Resolutions because I don’t have to wait a year to make positive changes or modify the ones in place.

It is important for me to live the healthiest life possible and take care of myself in every way possible, especially since surviving a PE and DVT. Sometimes, I think it is easy to get caught up in the thought that because it isn’t December 31, we can’t make changes. It’s also easier to wait another year before cashing in on the “big one” – the year I am going to run a marathon or lose 75 pounds; but, it doesn’t have to be that way. We can make small choices and changes every day – at anytime – to help us reach a goal. Something as simple as drinking more water, walking to get the mail or limiting eating out to twice a week can make a difference and if a change isn’t working out in the long run – don’t wait to make it work for you.

To you and yours, wishes for a Happy and healthy New Year.

Reader Writes In. Do you make New Year’s Resolutions? Why or why not?  Share it in the comments below.

There is hope for healing and you are not alone,

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December 24, 2014

Roadmap to Health in 2015

roadmap to health 2015

For many of us, myself included, 2014 was a tough year healthwise. While it was nothing the year of my PE, I’ve faced some new challenges that were unexpected. I know many of you share in my struggle and still many more are battling the aftermath of a DVT and/or PE for the first time. You are not alone in your fight, as evidenced by the stories and people here – both those people who have shared their stories and those who are suffering quietly. Your journey may be one you take by yourself, but you are not alone in the obstacles, setbacks, hardships and even triumphs you encounter. We are all on the same type of journey, just taking different paths to get there.

Where is there, you wonder. For me, my journey is seemingly unending, but I am hoping to continue down a path that leads to optimal health and wellness for my individual body. I was diagnosed in 2012 with Antiphospholipid Syndrome, which is believed to be the main cause behind my DVT and subsequent PE. I take Coumadin/warfarin daily and probably will for the rest of my life as there is currently no cure for APS; and my risk of future clotting, including stroke, is too great to risk without medication at just 32 years old. Do I like that I take blood thinners now or forever? No, but it is the best course of treatment at this time. My journey includes continuing to work with my hematologist to ensure I am receiving the best care possible, regain control of my diet and start implementing a not only doable, but sustainable fitness plan back into my daily life.

Achieving ultimate health is like any other journey – full of hills, bumps, detours, closures and even spin-outs along the way. If we’re lucky (which, let’s face it, I’m not), we’ll avoid any major crashes along the way and have to deal with just the occasional stall or engine failure. I like to think of health as a journey and I would like to provide you with a Roadmap to Health in 2015.

Roadmap to A Healthy

Print it out, share it, bookmark it for future reference. Do whatever you can right now to take control of your health.

From me to you, have a very happy holiday season and beautiful New Year.

Reader Writes In. What is included in your Roadmap to Health in 2015? Share it in the comments below!

There is hope for healing and you are not alone,

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Thank you to the American Recall Center for providing this Infographic and the opportunity to include my own insight. Connect with ARC on Facebook today.
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