How to Handle Anxiety After Blood Clots

I’m frequently asked, “does the anxiety after blood clots ever go away?” My answer is, “usually it gets better, but it takes time – sometimes it takes a long time.” Health-related anxiety after a blood clot is something that many people experience, and it is something that I have dealt with – and still deal with – six years after a DVT and PE changed my life forever. While I still face anxiety from time to time, it does not completely rule my life. That is what I hope for you too, and that is what I mean when I say, “it does get better in time.”

A blood clot in my lung is one of the scariest things I have ever experienced. If you’re feeling that too, you’re not alone. The anxiety I felt after my blood clot was debilitating, and healing from it was just as hard – if not harder – than healing from the physical problems I faced. For me, the anxiety would start with a small ripple, just the smallest thought thrown into the pool of my mind, like a stone: What if that tight muscle isn’t just a tight muscle? The stone would sink, and the ripples would spread out: What if it’s a blood clot? I think it hurts to put pressure on my leg. Farther and farther: I’m not sure if I can breathe. I must have a blood clot. I can’t go through this pain again. I won’t survive this one. My thoughts would escalate until there was nothing else on my mind, except what might be wrong with me.

No one doubted that I believed I had a reason to be afraid, but no one in my personal life really understood what I was going through. On the outside, I looked fine. My initial days, weeks and months after my blood clot were filled with frantic phone calls to my doctor – and his nursing staff – to ask about a current pain, feeling, sign or symptom of something that was, without doubt, going to be the end of me. My doctor was supportive and listened to my concerns. He told me I was normal for being worried. He usually instructed me in one of three ways: Watch something for a progression of symptoms and call back, make an appointment to come see him as soon as possible, or head to the ER to get checked out. I have done them all. Through this (repeated) process, I have since learned what I can watch myself, when I need to make a phone call, or when I need to go to the hospital.

It has been six years since my blood clots, and I don’t focus on the fear from day to day anymore. It took me a long time to heal, though, and it wasn’t always easy. While I was recovering, I spent months and months wondering if my health would improve, or if something else would happen that would leave me with more problems, or worse yet, dead. Living with antiphospholipid syndrome – or APS, which is the autoimmune clotting disorder responsible for blood clots – makes it hard for me to go back to the way I was. APS could progress, or create more serious problems, such as problems with my organs or stroke, so I can’t ignore changes in my health. Taking warfarin – an anticoagulant to prevent future blood clots – has changed my life in several significant ways. I get my blood tested regularly, and I take some extra precautions – like calling my doctor – if I hurt myself or notice anything unusual, such as bleeding or bruising when or where I shouldn’t be bleeding or bruising.

Even though my daily life is not consumed by “what ifs” with regard to my health, there are times when it still gets to me, and there are times when my anxiety still takes over. I have always been an anxious person, especially about my health, but my blood clot experience – and my APS diagnosis – has added another layer to my anxiety. When I was a child, I always thought I would have the “worst-case scenario” disease or injury, when in reality, I was a pretty healthy child (except for an underactive thyroid). When the worst-case scenario did happen to me – a life-threatening blood clot at just 29 years old and diagnosis of a disease that no one had ever heard of (or that no one could pronounce) – it seemed that all of my childhood fears had come true.

Sometimes these deeply embedded fears, combined with what I went through with my blood clots, get the best of me. Last Monday, I woke up with a pain in my stomach that felt a little bit like bloating, but it wouldn’t go away. It lasted two days, during which time I convinced myself it was massive internal bleeding. So, I had my INR checked and found out it was within my normal range. Given that I had no other symptoms besides pain, I made an appointment with my primary care physician who ran some tests and concluded that it was one of two things: indigestion or the start of my menstrual cycle. The latter proved to be true – within hours of leaving my doctor’s office – and I felt relief from my stomach pain. I relaxed, confident that I had talked to my doctor and everything pointed to my period.

The next day, I had a strange sensation in my head and some weird anomalies in my vision, which worried me. Vision changes can be a concern for people on certain medications and for people with APS. I believe I experienced on ocular migraine, which the Internet said (thank you, Internet) could be a result of disrupted blood flow in the brain. I panicked – and ran with blurred vision – to tell my husband. In my heightened state of fear, I managed to trip and fall halfway down the staircase, twisting my ankle and banging my back on the bottom step. Now, I knew I was bleeding internally and would need ankle surgery too.

I wasn’t bleeding – thankfully – and my ankle pain resolved after ice and rest. I decided to live out the week – and maybe the rest of the year – in a bubble. In all seriousness, though, I am concerned about what happened with my vision, and wondering about it sent my anxiety into overdrive. An appointment with my eye doctor didn’t reveal any immediate problems, but we’re keeping an eye on my symptoms.

I know, though, that I will be okay. What I have learned since my blood clots is that healing is a process – and it is something that I constantly work to obtain. My healing wasn’t linear, it didn’t happen overnight. I didn’t heal in all aspects of my life all at once. My journey to healing was filled with twists and turns, ups and downs, and bumps in the road. At times, I would take three steps forward and eight steps back to a place where I had just come from. It took me years to repair my physical health, my financial health, my self-esteem, and my relationships. I am still working on healing my emotional health.

Over the years – and since I have gained some distance from the time when my blood clot happened – I have learned a few simple things that have helped me deal with anxiety after blood clots. Ignoring it was not helpful. Wishing it would go away – and not doing anything about it – was not helpful. Telling myself to suck it up – and get over it – was not helpful.

Here is how to handle your health-related anxiety after a blood clot:
Trust yourself – and be kind to yourself.

If you think something is wrong – or different – you’re probably right. Give yourself some credit after everything you have been through. If you have a question or a concern – whether physical or emotional – allow yourself to feel that. Your body has a way of telling you when something is wrong. Honor that relationship and get it checked out.

Talk to your doctor.

Your doctor should be your number one go-to when you have a concern about your health. No matter how small – or big – you think your concern is, communicate with your healthcare team. Sometimes, even the smallest symptom or problem might be a sign of something serious. Or, it may turn out to be something insignificant, but at least you know. You have to nurture your physical and emotional health. There is no sense in worrying about something, if you can get it checked out instead. Take your trust in your body’s signals and contact a medical professional to help you figure out what may – or may not – be going on. Both outcomes are okay!

Keep a journal or log of your symptoms.

I love journaling a lot of different aspects of my life – work tasks, travels, stories, blog posts, recipes – so this comes easy to me. If journaling doesn’t come easy for you, that’s okay. Start by getting a notebook – or the notepad on your phone – and just make a list of what is happening to you. If you have a question or a concern, write it down. Write the date, what occurred, how long it lasted, how you felt, and what you did about it. This is helpful because when your doctor asks if anything is new, you have it all right there in front of you. If you make an appointment to see your doctor for an issue, your doctor will ask for details. Be prepared ahead of time and pull out your notes.

Seek help for the emotional aspect of recovery.

Sometimes, we can’t do it all alone, even if we try. Often times, people wouldn’t find it unusual to contact a physical therapist for help with movement and motion after surgery, for example, but they are afraid to contact a counselor or psychologist for help with emotional healing. Do not be afraid. Just like our bodies, our minds may need help to heal. You would never expect to heal physically from a blood clot without medical intervention from a doctor. Equally, if you are struggling on your own, you should not expect to heal emotionally without assistance from a professional. If you need help, talk to your doctor. He or she can direct you to these services.

Have patience with the process.

I was not patient during my recovery from blood clots. Looking back, though, I can see that time was perhaps the most critical factor in my recovery. It took time to heal physically – and it is taking time to heal emotionally. There was nothing I could have done to speed it along. Blood clots are life-changing and traumatic for many people. Trauma is not healed in a day, a week, or even a month or two. It can take a very long time to heal. It is so hard to be patient when you want to desperately to feel better, but sometimes, time is what it takes to get to where you want to be. Your body – and your mind – have been through a lot. Allow them to take the time they need to heal.

Don’t forget, it’s important to talk to people who understand what you are going through – because they have been there too. Join my private Facebook Group for more peer support.

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

 

 


Reader Writes In: Do you struggle with health-related anxiety? If so, what are your thoughts for dealing with it? Share in the comments. I would love to hear from you, and your comments are so helpful to the other people who read this blog.


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Patient Story: Occlusion in the Pathways of Life by Jordan Stonehouse

Stonehouse, Jordan Circle PicIt was spring 2014 in the beautiful state of Michigan, and I was entering the final week of classes before I could apply to the program of my dreams. Following a painful colposcopy procedure that had me bedridden for a few days, I sat for hours and hours studying for final exams. On a Thursday night, I instantly developed a sharp shooting pain in my left clavicle area. I didn’t give the pain much thought, placed it where it didn’t hurt, and continued to study. Over the weekend, I mentioned the sharp pain to close relatives who suggested stress as the culprit. Being a young, active, and nonsmoking woman, I couldn’t come up with a different diagnosis. I woke up multiple times a night due to the excruciating pain, but I continued to press on and push through. I had work and school to study for.

It was Tuesday, April 22, five days after developing chest pain, when I finally knew something was wrong. I worked a ten hour shift in the Trauma/ER department at a local hospital and was unable to catch my breath after climbing a flight of stairs to my car. I drove home to grab study materials for a Microbiology final that was scheduled for that evening. Again, I couldn’t climb the stairs to my apartment. I became hysterical. Why couldn’t this pain just go away, so I could focus on my school? I proceeded to drive myself to class. I don’t remember much of the exam, only trying to catch my breath throughout and reassuring my classmates that I was fine. Once finished, I walked to my car, stopped for gas and finally drove myself to the same ER I left earlier that day. As I walked towards the entrance, I was unable to breath and started crying for the first time. I was done trying to be strong. I couldn’t make another step. A volunteer quickly followed with a wheelchair and I was ushered inside. A stat EKG showed nothing and a chest X-Ray came up clear. I began to panic. Then, my D-Dimer test came back with a result of 5999 mcg/L, with normal being less than 250 mcg/L. I became numb.

It took exactly two hours for the medical team to obtain a CT scan and locate two sub massive blood clots in my left lung. I also had another clot causing about 80% blockage in the pulmonary valve of my heart. Given the size of these particular clots, I suffered from pulmonary infarction (dead lung tissue) and enlargement of my heart’s right chambers. I was placed on heparin and administered an emergent dose of tPA, a clot busting agent that is used to treat stroke victims, and transferred to the cardiac ICU for three days. Those three days were filled with constant monitoring and echo tests to make sure the clots decreased in size. After a total of eight frightening days, I was finally pain free and able to breathe again.

It took an additional five days for my INR to show up in the normal range. Throughout my stay, birth control pills were the only culprit we could point our fingers at. I was placed on Coumadin and discharged from the hospital with an extensive list of providers to follow up with. I visited anti-coagulation management centers every other day, every other week, then every other month to monitor my blood. I had cardiology appointments every month to make sure my heart chambers were returning to their normal size. In the weeks following my discharge, I had a difficult time wrapping my head around what had happened. I simply chose not to think about it and stayed as busy as possible. When it all caught up to me, I became an emotional mess. I became unable to deal with life. I didn’t feel well and couldn’t explain why. No one had the answers for me and I didn’t know where to find help.

Quote_Jordan StonehouseFortunately, blood work post-Coumadin therapy only showed elevated homocysteine levels, which I treat with folic acid and aspirin daily. But, I still struggle with the daily question of why did this happen to me? I had a plan for my life and was confident that my invincible body could carry me through it all. Now, I face debilitating anxiety and stress every day. I live in fear that I will develop another clot. Optimally, I would just be a normal 25-year-old woman who could manage her hormones with a simple pill and continue life full of energy and optimism. Knowing this isn’t an option for me, I realize I must seek out alternative therapies.

I wish my doctors would have told me that recovery from pulmonary embolisms isn’t easy. I wish I was provided with more information on the emotional and physical toll that these clots take on your body. I wish I wasn’t left to search for all the answers on my own.

I am so thankful to have found a resource like the Blood Clot Recovery Network. I am excited to learn from other survivors and find some reassurance that what I’m thinking and feeling is normal. The support alone will mean the world.

It is a blessing to still be here on this Earth, and it will be something I never take for granted.


Share Your Story SQThank you, Jordan, for sharing your story with BCRN. Connect with Jordan in the comments below. 


Visit Emotional and Lifestyle Recovery to learn more about emotional recovery from blood clots.


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How to Manage a Panic Attack After a Pulmonary Embolism

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It was Valentine’s weekend and I couldn’t be more excited for a weekend away – away from home, away from phones, away from the computer, away from social media – in the hills of Southern Ohio with my husband. Being nearly ever-present online and on my blog, I crave time away from technology and even connectedness to some extent and always eagerly await our next weekend getaway from the city. The time away is my chance to relax, rejuvenate and reconnect with myself, my goals, my husband and even my mission here at BCRN.

This particular weekend, an impending snowstorm made the prospect of getting away even better, and I was only slightly concerned about the weather as we made the hour and a half drive south to our weekend home – a castle-themed bed and breakfast in the middle of the forest. It was perfectly romantic and perfectly situated in the middle of a valley with no cell phone service, no TV and no internet. Just how I wanted it.

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I was hungry by the time we got there and eager to drop off our gear at the cabin before making the short drive back to the castle for dinner at the pub, which we did in a matter of minutes, and just as snow started to fall into the valley, settling on the roads in crystal drifts. It was cold outside and the castle staff requested that we leave water running to prevent the pipes from bursting. I was thankful for my wool sweater, scarf and snow boots as I got back in the passenger seat and we set out to begin our ascent to a what I hoped would be a warm dinner and cold beer.

We made it up and over the first small dip in the road without any issue. We were driving pretty swiftly – but not swiftly enough – up the first hill when the car slid to a stop just a few feet from the top, right before the second, much larger hill. My heart started pounding and I had an immediate need to get out of the car as quickly as possible. To our left was a steep ravine leading into the near-blackness of the forest floor far below. Night was settling in the valley faster than I had realized. The car slid sideways to the left as my husband tried to brake, downshift, speed up – nothing worked on the icy gravel. The car slid to a stop – the back wheel just over the edge of the ravine, spinning in the dirt. I bolted from the car, standing in the middle of the road with my heart pounding. Thoughts began flooding my mind – I was going to fall over a cliff (why does that keep happening to me) and bleed to death right then and there. The car was going to roll over me and again, I was going to bleed to death right there. If I didn’t bleed to death, I would freeze to death first. In fact, if I didn’t bleed to death or freeze to death, I was probably going to have another pulmonary embolism at any moment. Worst of all, there was no cell phone reception to call for help. No 911. No hope. Out of control, my thoughts spiraled as my husband tried to use the floor mats to gain more traction. No luck. The car precariously balanced on the edge of nothing, he decided the best thing to do was to walk the rest of the way to the castle and get help.

Good idea, I thought, get out of here and do something productive . I took off after him, rounding the corner into an immediate incline of the second, much larger hill. Ten steps and I was gasping for breath, unable to feel my lungs. My heart was pounding wildly. We decided my husband could get there and back much faster without me so I would stay near – not in – the car and wait. I watched as my husband’s figure disappear into the darkness and silence settled around me. “This was fine,” I thought, “This is fine. Just go back to the car and wait in front of it in the headlights, you’ll be fine.”

One, two, three, four steps I counted out loud as I retreated down the hill and before I even knew what happened, I was careening on my backside over gravel and through sticks and trees and rocks. I crashed on the side of the road, not that far from my car. My leg was twisted behind me and my heart was still pounding in my ears. It was dark now, completely – and I was lying completely alone on the side of the road, in the middle of nowhere with no way to call for help. My mind was racing, I couldn’t breath at all and I didn’t know if I had seriously hurt myself. I felt my mind and my physical body begin to panic as tears welled in my eyes. I had to regain control of my mind and my body and hope my husband would arrive soon.

“You fell down the hill,” I said out loud to the blackness, “You’re still alive, you’re near the car, your husband is coming back and until then you just have to wait.” I had my own attention now. I said aloud again, “You fell and here you are. Now what are you going to do?” I listened to myself. “You’re freaking out right now and that’s okay – you fell down a hill, but you’re okay, you just need to find out if you’re hurt.” I fell and I couldn’t unfall so I let myself accept that I fell and it was scary – and that was okay, I had every reason to be worried. I cried for a few minutes in my angst.

Next, I began an assessment of the situation – both around me and internally. This is also referred to as grounding. Anxiety can make us feel very detached, dissociated, or unreal and grounding – or assessment as I like to call it – brings us back to the here and now. This process can help us to focus on reality and the present situation. You can do things like tell yourself you’re safe or do something physical. The goal is to turn your focus and attention away from the situation that is causing distress. When I first started practicing grounding during a panic attack, I had no idea it was an actual technique, but I began to realize it helped relax my mind, my heart rate, my breathing and it helped me to come up with a plan.

Lying in the snow, I took a physical survey of my body: I could move my arms and legs, there was no blood coming from my head or anywhere else, I could prop myself up on my elbows. I reminded myself of the positive things I knew to be a fact: My husband was coming back in a matter of time, I had my medical ID on me in case something happened in the meantime, I had the car for warmth and for safety if some terrifying creature came out of the woods, I saw a farmhouse on the drive here or I could walk to the castle myself if my husband failed to return, there were other people staying near our cabin and the chances of them coming along before morning was pretty high.

It is at this stage of surviving a panic attack that it might be helpful to seek out the support, advice or comfort of a trusted individual; but in some situations – like mine – calling someone might not be ideal or even possible. So, I had to gain support from somewhere else. On my back in the snow, I remembered how incredibly hungry I was and I remembered I had a Cadbury Crème Egg from my Dad in my pocket. I normally don’t insist people turn to food for comfort, but I pulled that egg out and ate it right there in the snow. In that moment, it made me feel a lot better and I even laughed at myself for a moment. From there, I thought about how I could, in fact, write about this experience once it was all over and help someone else who experienced similar feelings. Maybe someone else could use my experience as support in the future. I thought about my Dad and what he might be doing and I hoped my husband had made it to the castle by this time.

Support accomplished, I made a quick plan in my head. Planning is beneficial because whether it is an elaborate plan or a quick thing we need to do, planning empowers us to take action and take care of ourselves and the situation. It may be a quick plan to get you through the next ten minutes or it might be an elaborate plan to help you through the next year – whatever it may be, make a plan. You can say it in your mind or even better, write it down. Not being an ideal writing situation, I made my plan in my head. I was going to get up and get off the side of the road, dust myself off, walk as carefully as possible a little closer to the car (staying in front of it) and stand in the headlights. Then, I was going to wait until my husband returned. After that, there would be time enough to figure out how to get my car off the ridge and get all of us back to safety.

Plan in place, it was time to execute I rolled over on my side, flexing my leg that was curled behind me and preparing to get up just as I heard another vehicle coming fast up the hill behind my car. My heart lurched, “Not in the plan! Not in the plan!” I heard car doors slamming, voices yelling and two sets of rough hands grabbing me under the armpits, lifting me to my feet. They were yelling, “Are you okay? What happened? Are you alone? Let us help you, here, come here. You’re all right, right?” They were dusting me off and patting me on the shoulders. I stuttered back I thought I was okay, my car was stuck and my husband went to the castle. I was looking into the faces of two young gentlemen who looked as concerned as I had been feeling. They kindly offered to let me wait in their truck, but I was reluctant and really set on my pre-determined plan to stand in the headlights. It was settled then; they would wait in the headlights with me until my husband returned. And so, all three of us waited and chatted about the weather and the incredibly brilliant stars we could see – and I found myself relieved to accept a little additional support besides chocolate and my own thoughts.

It wasn’t so bad, I realized, and when my husband did return much to my relief and anxiety – he came back, but could not find any help – I was happy to report that because I had fallen down the hill, I acquired all the help we needed. The three of them were able to get my car off the ridge and back it down the first hill and to the cabin – where it remained parked for the rest of the weekend.

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A panic attack is scary – and that’s okay. I think panic attacks are especially scary after a pulmonary embolism because a lot of the symptoms can feel like a pulmonary embolism – trouble breathing, sweating, maybe even chest pain. It is important to note if you have these symptoms and they do not subside, you must seek medical attention right away. As survivors of an event that one in three people do not survive, we often realize in the most profound ways just how fortunate we are to be here and I think that can accelerate the feeling of panic in an already scary or threatening situation.

It is my hope for you that with these steps, self-love and self-care you can handle the next one and move on with all of the important things in your day, your week or your life.

Reader Writes In: What are your tips for handling a panic attack?

There is hope for healing and you are not alone,

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15 Tips to Help You Handle Holiday Stress After A Blood Clot

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The holidays are here – and so is the holiday stress. While many people look forward to a house full of relatives on Thanksgiving, a White Christmas filled with friendly get-togethers and a New Year celebration even better than the last year, facing the holidays while recovering from a blood clot, or other serious illness or injury, can be downright scary and even extra stressful. But, there are some things you can do to handle holiday stress.

I suffered a blood clot in my leg or deep vein thrombosis (DVT) and blood clot in my lung or pulmonary embolism (PE) at the beginning of summer, but I was still unprepared when the holidays rolled around that very first year. To be honest, the whole season from November to January filled me with dread as soon as the Halloween candy was gone. I did not expect to feel any anxiety around the holidays because after all, I never had before. Yet, about a week before Thanksgiving I was suddenly filled with dread for the plans I had made and an overpowering grief that somehow the holidays would never be quite like I remembered them because I, in fact, was a different person than I remembered.

My thoughts ran wild and ranged from “What if I couldn’t make it to where I said I would be, when I said I would be there?” to “What if I fell on the ice and cracked my head at a relative’s house?” to “How was I going to afford Christmas gifts in light of recent and debilitating medical bills?” to “What if I ruined Christmas and all of the New Year for everyone I happened to come into contact with?”

All rationale flew out the window with the last of the fall leaves and as the winter chill settled in and enveloped the world outside, my feelings about the impending festivities were also cold. I wanted nothing to do with the holidays because I clearly could not handle them anymore. I certainly did not want to be around anyone at the holidays, especially myself. Everything was a chore, overwhelming and it seemed like I couldn’t trust myself to interact normally with people. It was a fear I had never experienced before and I had no idea how to handle my feelings.

Since then a couple of seasons have gone by, and I have started to enjoy the holidays – and myself – again. It hasn’t been an easy process and it has taken me some time to adapt to the way things are now. I noticed that most of my holiday anxiety comes from stress I unnecessarily put on myself. Maybe before my blood clots I could handle that stress without a second thought, but now I have to take careful steps to take care of myself and not let the holiday hustle, and in turn my own well-being, get out of hand.

Here are 15 tips to help you reduce and manage holiday stress after a blood clot (or other serious illness).
  1. Take time for yourself. The holidays are without doubt some of the busiest times of the year and they are filled with spending time with friends, loved ones and even colleagues. During the season, it is important to also take time for and spend time with just yourself. Do something positive that does not involve someone else, unless it is a close friend of family member you want there. Go for a walk, watch a movie, read a book or take a bubble bath. Whatever you want to do – whether it be alone or with someone special – just do it and do it more than once or twice. I like to go for a walk in the park with my husband and dogs or read a book by myself in the evening. I make a plan to be home from events by ten or eleven at night, just to make sure I have some reading time.
  1. Don’t feel pressure to buy a gift if you are facing financial hardship. You can still do something to let someone know you are thinking about them during the holidays, but it doesn’t have to cost a lot of money. For example, you can handwrite a letter or card letting them know how much you appreciate them, write them a pending invite to a home-cooked dinner (for after the holidays and when you are feeling better), make them a CD of their favorite songs or bake a special treat. Pinterest has no shortage of affordable craft ideas for those who like to make things and being crafty is also creative and relaxing. It feels good to make something that makes someone feel special, some would argue even more so than buying a gift from the store.
  1. Set your boundaries – and stick to them. It’s easy to want to do everything for everybody, especially when in the spirit of selflessness and giving. It is the holidays, right? True, but you also need to take care of yourself first. If you’re not comfortable driving three hours to get to your favorite cousin’s Christmas party – don’t. Call instead to see if you can arrange a visit at a later date or drop-in on via Facetime or Skype. If you’re not in a position to plan the company holiday potluck – don’t. Instead offer to help find someone who can take your place. If you don’t want to talk about how you are feeling – don’t. Instead stick to a single phrase and use it often, “I’m doing the best I can right now, it’s good to spend time with friends. How have you been?” Set your boundaries in the beginning and don’t lose site of them.
  1. Don’t over-commit yourself or over-schedule yourself to be places during the holidays. You do not have to be perfect – and you do not have to be everywhere. I overcommitted a lot when I was recovering and then not only did I feel bad about not going where I said I would, but it was even worse to tell the person I was supposed to see that I wasn’t going to see them, especially if I cared about them. If you usually take on multiple projects during the holidays or go to a lot of celebrations, assess them one by one and determine as you go, what you can and can’t do. Give people notice that you might not be able to make it and say, “I would love to come by for coffee after dinner, but I just don’t know how I will be feeling because so much can change for me in just a day. How about I call you in the afternoon to let you know for sure?” When people are prepared for change, it is much easier to deal with. If you usually cook all of Thanksgiving dinner, how about asking others to join in this year and say, “I would love to have Thanksgiving at my house still, but I am going to need help preparing and cooking the food. Who can be here early to help out?” Or, “Thanksgiving at my house will be difficult this year because I’m not feeling myself quite yet, but I would love to make my mashed potatoes and casserole to bring to your house this year.”
  1. Agree to something you can do – and delegate the rest. Something about the holidays makes as want to be and do everything we can be and do and then some. It can be hard to stop doing all of the things that once came very easily. If you usually coordinate your child’s holiday party at school you can say, “I would love to be involved with setting up for the party, but I am going to need some extra help this year. What other parents can I call for back-up?” Then call them. Do you usually organize your friend gift exchange? This year, call on your Bestie to stand in until you’re feeling better. You don’t have to do it all yourself, unless you take it all on. Just like you, people want to help out and you might even find they jump at the chance to take on an extra roll this year.
  1. Do less. Do less. Do less. You know the old saying, less is more? Well, it’s true, especially when recovering from a blood clot. And doing less does not mean doing nothing. Take some stuffing off the proverbial plate and take a break. You can always get back to your regular holiday routine as you start to feel better and only if you want to.
  1. Enjoy yourself. Do not let rules rule your holiday, either. Yes, I enjoy a glass of wine or two with dinner and eat as many green beans as I can (I will even enjoy cranberry sauce). If you have concerns about your diet or what you can or can’t do, talk to your doctor before the holidays are here about what is acceptable for your treatment plan. If you want to go ice skating, find out if you can wear a helmet, if needed. If you want to take time to stroll the neighborhood to view Christmas lights, plan a light day ahead of time or make plans to have someone drive you through the streets. Do something you love this holiday season.
  1. Take time to be grateful. Being thankful can be hard, especially when it feels like you don’t have a lot to be thankful for. I assure you, you do. I find gratefulness in small things, and sometimes those are the only things, like a pretty sunset or an extra half hour of sleep. Once you take time to be grateful for the small things, you might start noticing some bigger things like the opportunity to celebrate another holiday.
  1. Communicate with your loved ones, family and friends – face to face. It’s really easy to get wrapped up in text messaging, Facebook and phone calls, more so than I would like to admit sometimes. This holiday season (and maybe even after it), try talking to your loved ones about your needs in an actual conversation, with eye contact. Let them know how you are feeling, what you are struggling with and where you could use a little extra help. It will not only help you to feel more relaxed and less pressure, but good communication fosters better relationships and friendships between us all. Let someone know if you need to sit down, stand up or cut your shopping trip shorter than usual. If you need an afternoon nap, speak up during holiday planning and push that party back an hour or two. Make your needs known ahead of time. For others, who are not someone you want to share details with, it’s none of their business how you are feeling or what limitations you are facing. You are not obligated to tell all just because someone asks you.
  1. Stick to your routine. Change is hard for a lot of people to deal with, myself included and the holidays tend to bring about a lot of change. It is very important to stick to your daily routine as much as possible. Make sure you take your medication on time, move around if you are going to be sitting for long periods, remain consistent in your diet and hydrate with water regularly. If you read the paper every morning, continue doing that. If you have a cup of tea before bed, still do so even though you were out a little later. Stick to your routine as much as you can.
  1. Get out of the house. It’s really hard to be stuck in the house all the time, especially when recovering from a serious illness or injury. Make it a point to get out at least a few times over the next couple of months, even if it is difficult for you. Maybe you decide to go to one holiday party or meet a close friend for cheesecake and coffee. Get out, enjoy the scenery. You don’t have to be gone long and it doesn’t have to be complicated. You could visit a book store, tour a light display near you or drop off a pumpkin pie to your neighbor.
  1. Abandon your old customs, especially if you are lonely or depressed. A lot of my sadness around the holidays came from the fact that they aren’t the same as they used to be. Whether it be from illness, loss of a loved one or drastic change in living and financial conditions, sometimes things just can’t go back to the way they were. If that’s the case, change what you do for the holidays. If you always put up a six-foot-high Christmas tree, but can’t this year, put up a smaller tree in a new place with new decorations. If you always had dinner at Mom’s, but she’s not here anymore, make one of her dishes and bring it to Thanksgiving dinner at someone else’s house. Make a new tradition that you may or may not continue – it could get you through for a short time or become one of your favorite additions to your holiday customs when things return to normal.
  1. Listen to music. Music (preferably in the form of Marcus Mumford of Mumford & Sons) has saved me more than once from an emotional breakdown, yelling at someone or total wreckage of my entire day. And research from the University of Maryland has shown music can relax blood vessels and decrease blood flow so if you’re feeling anxious, hit play on your favorite song. Take your headphones with you to that party or dinner and if you’re feeling the holiday stress, excuse yourself to listen to your favorite song (I’ve hidden in the bathroom with iTunes more than once). Or, even if you’re not headed out, listen to some Christmas jams (or any jam) to lighten your mood throughout the day. I promise, it makes a difference.
  1. Think positive (and laugh while you’re at it). Surviving the holidays is hard, there is not doubt about that, but don’t be too hard on yourself. I believe nothing was ever accomplished with a bad attitude alone. If you can say something positive to yourself about the holidays like, “Hey, I didn’t have to do dishes by myself this year so I can spend more time with the kids,” or “Thank goodness Aunty Mary was able to make the pies so I can have more time to prepare the turkey,” it’s far more rewarding than focusing on the things that made you unhappy about your situation. Even better, if you can laugh about the forgotten whipped cream or fact that the tree wasn’t plugged in for the big lighting, you’re one step ahead of being positive.
  1. Be patient with yourself. A lot of these things are easier said than done, especially in the beginning. The important part is acknowledging your holidays may change, either temporarily or permanently, and that does not mean you cannot enjoy them.

Happy holidays, friends. May your days be merry, bright and full of gratitude for the small things in life.

Reader Writes In: What’s your number one holiday stress reducing tip?

There is hope for healing and you are not alone,

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The Truth Is

The truth is, I was going to write a post about blood clots in the news lately.

The truth is, now did not feel like the right time to share the news updates. What does feel right, is sharing some truths about blood clots and recovering from blood clots. This is my message to you today.

The truth is recovery is hard. Very hard. Recovering from a DVT or PE is not like recovering from a cold, flu, surgery or injury. It is more like recovering from a heart attack, stroke or cancer. There are days when I feel miserable and days when I feel great and no apparent way to know which day will fall where and when. It is hard to plan things, hard to make commitments, hard to get active, hard to eat right and hard to take care of myself. It’s even hard to get out of bed, get dressed, do my hair, go to work and drive my car. There are some days when everything is hard – no matter how simple the task. I’m not the same person I was pre-PE and I can’t ever go back to that person. Experiencing a traumatic situation that also has the potential to be deadly, changes us in a way so that we can never go back to the person we once were. Are we better or worse? I don’t know, but I do know we are different. I think about situations differently since my PE (everything requires extensive thought and weighing of actions vs. reactions); I respond differently since my PE (I am much more emotional and sensitive, if that’s even possible); and I see life differently (it’s too easy to take it for granted, I almost did and I almost didn’t get a second chance at it). The truth is recovery from a DVT and PE is hard.

The truth is this hurts. Along with being hard, recovering from a DVT and PE just hurts. It hurt so bad in the beginning, I was willing to sacrifice a lung and a leg (even while being a runner) to make the pain stop. It hurt to walk, it hurt to breathe – two very basic tasks so many people take for granted. It hurt to talk, to laugh, to hiccup, to sneeze and to put on pants. As time has gone by, the physical pain has lessened for me, but the emotional pain remains. Recovering from a DVT and PE is a very lonely time and the emotional scars of that loneliness and isolation are not so much like scars yet, but more like open wounds. It hurts to have friends and even family not understand what you’re going through, why it’s taking so long to recover and why you can’t do the things you once did. It hurts to always explain why you’re tired, not well or that yes, you’re still recovering from that lung thing that happened to you. It hurts to feel like sometimes no one cares, no one will listen and no one even gets the pain you’re in. The truth is, recovering from a DVT and PE hurts.

The truth is this is scary. I remain highly anxious since my DVT and PE. There are days when I am nearly convinced it is happening again because I feel a pain in my leg or a stab in my lung. There are nights when I can’t sleep because I replay the story of my PE over and over again in my head – I should have known something was not right, I should have gone to the doctor earlier; maybe if I did, I wouldn’t be in so much pain now. There are nights when I wake up from a nightmare or pain and can’t fall back to sleep because what if I don’t wake up again in the morning? Tests, scans, MRI’s, blood draws, doctors’ visits, new diagnosis, hospitalizations – are all scary. Hearing words we don’t understand like INR, D-Dimer, Factor V, APS, oxygen level, warfarin, blood thinner, bilateral, chronic and acute are scary. The truth is, recovering from a DVT and PE is scary.

The truth is you are not alone. When I was first discharged from the hospital, I had never felt so alone. While I had family and a few close friends who supported me through my hospitalization, none of them have experienced a PE. None of them know exactly what it feels like. I knew no one in my personal life who had gone through what I was going through. I turned to the internet for help and found some resources there, but was still lacking in real-life, down-to-earth, recent stories of people who were going through what I was. Most people I came across, like me, had not even heard of a DVT or PE before it happened to them. I wanted to change that and created BCRN within months of my discharge. You are not alone, you are never alone. If you have a question, someone else has the same question. If you have had an experience, emotion or thought, chances are, someone else has also had it. Share, talk, communicate, find us on Facebook, share here or send me a message. This is a network of people who have been or are going through the same pains, fears, anxieties, challenges and triumphs as you. The truth is, you are not alone in recovering from a DVT and PE.

The truth is it does get better. I can’t tell you when and I can’t tell you how – recovery is different for each and every person. What I can tell you is that it does get better. Now two years out from my DVT and PE, I feel remarkably better than I did at a few weeks, a few months and a year. While I still face day-to-day challenges including chronic fatigue, leg pain, difficulty breathing in hot or cold weather, regular intravenous blood monitoring, managing medication and doctors’ appointments, it is better than it was. Progress is slow and improvement feels miniscule at times (maybe because is it), but it does get better. I have to believe it will get better for you too and while we may face new challenges from here on out, I believe in time, we do get better and there is hope for recovery and healing.

Reader Writes In. What is your truth?

There is hope for healing and you are not alone,

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Dealing with Depression

Ever since you’ve had your blood clot, you’ve been feeling a little down. Maybe you don’t enjoy the activities you once did (either because you can’t do them or don’t feel up to it), you feel alone, are easily discouraged, emotionally charged and cry or react at the drop of a hat – literally (don’t worry, I cried for several hours over spilling spaghetti sauce in the kitchen once shortly after my PE). Maybe you feel hopeless, like no one cares and even wonder if life’s going to be like this from now on, why not give up? It hurts to move, get up, lie down or even breathe. No wonder you’re depressed when you spell it all out, right? Dealing with depression after a blood clot is not uncommon, yet, it is uncommonly talked about.

Experiencing a DVT or PE, brings a lot to cope with, both physically and emotionally. Clot Connect, an organization seeking to increase knowledge of blood clots, clotting disorders and anticoagulation by providing education and support resources for patients and health care professionals states, “It is normal to feel shock, anxiety and fear following the diagnosis of a blood clot”  on their FAQ page. Let that sink it for a moment before reading on. You are normal for feeling this way.

In fact, it has been noted that high levels of anxiety, depression and psychological stress are reported among patients with DVT and/or PE, but very little research has been done regarding the psychological implications of surviving a DVT and/or PE. The anxiety, fear and depression that can be quite common after a blood clot can be attributed to many factors including, but not limited to the fact that a patient survived a life-threatening event, limited mobility and daily function, the lifestyle impact of being placed on a long-term blood thinner, decrease in quality of life, and fear of a clot returning (which can happen). There are few resources available regarding the emotional and psychological concerns that accompany a PE and DVT. I have included the ones I know of here:

The National Center for Biotechnology (NCBI) information also notes that “although thrombosis is rare in the young, [it] can cause severe psychological distress that influences the quality of life and the coping capacities of patients [Source].”

If you are feeling depressed, anxious, scared or unsure about all that has happened to you during and since your DVT and/or PE, here are my top tips for dealing with depression.

Tips to Help You Recover From the Emotional Effects of DVT and PE
  • Remember you are not alone. Blood clots are a common medical condition. It is estimated that 900,000 people in the United States develop DVT and PE each year [Source].
  • Talk to your doctor.  He or she may be able to direct you to other resources or provide anti-anxiety or anti-depressants. Even if you do not think your primary physician will understand your concerns about depression, still inform him or her about your feelings. It may also be beneficial to seek out a referral to a counselor or psychologist as an additional support for what you are going through. Do not be afraid to ask for help!
  • Understand post-thrombotic syndrome and do what you can to prevent it.  One of the long-term, and potentially upsetting, effects of DVT is post-thrombotic syndrome (PTS) and it is not in your head. Find out more about PTS, including the emotional effects and how to help prevent it.
  • Seek out a support group. Finding support is important when dealing with recovery from a blood clot. While some in-person support groups do exist (ask your doctor if there are any near you), they are rare. You can join BCRN’s private support group on Facebook. Also, visit here to find even more support groups.
  • Learn about your condition. What you went through was a significant and even life-changing event. Learning about what happened to you through reading, relating to others and talking to your doctor and others can help you to feel empowered, calm and knowledgeable about what did happen and what your recovery might entail. Don’t know where to start? The list of resources on the left-hand column of this page is a great place!
  • Know that your condition is treatable and manageable. Be confident in your treatment plan by discussing it with your doctor and any trusted friends or family members you may have. Connect with other survivors who have been where you are now.
  • Write your feelings down. A daily or weekly journal of how you felt, what you did, progress you made or challenges you faced can help you to see how far you really have come over time. Writing, even if it is only a few sentences a day to express a particular emotion or event, is very helpful in releasing your feelings and giving value to them. Consider writing down and sharing your entire blood clot story. What you feel is important and sometimes it just feels good to get it out of your head.
  • Have patience with yourself. Recovery takes a long time and it’s not easy. Know what you are okay, you are doing what you can and you are right where you need to be. Something as simple as walking to the bathroom or making a sandwich is enough for one day. If you are struggling to get back to where you were pre-blood clot physically and emotionally, remember it takes time and it is different for everyone.
  • Be kind to yourself. You are loved. You have been though a lot and your body and mind have been faced with a catastrophic incident. It is okay to feel the way you do from time to time and it will take some time to adjust.

Please remember, if you are facing thoughts of self-harm or suicide, please call 911 or seek other help (such as a hospital emergency room or doctor’s care) immediately.

If you are thinking of suicide, The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress.

Remember, even if it seems hopeless, suicide is not the answer.

Share your story. Have you felt depressed since your blood clot? How have you dealt with depression?

There is hope for healing and you are not alone,

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