March 1, 2020

Blood Clot Awareness Month Matters

Blood Clot Awareness Month Matters

It seems like every single thing has an awareness day, week, or month. Whether it is food, a hobby, a profession, or a health condition like blood clots – there’s a time for it. It’s great to bring widespread, concentrated attention to a cause or event that is important to you. After all, it’s how some people might find out about it when they didn’t know about it before. It’s sometimes not so good because it can feel like the Internet is congested with traffic and why do we have to hear about “one more thing” for a day, week, or month. Whether you get on board with awareness days or not, there is still something to be said for why awareness about blood clots matters.

Blood Clot Awareness Month Matters

Below, I share more of my story in detail, but more than that, I also want to share why Blood Clot Awareness Month matters to me, and why I keep talking about Blood Clot Awareness Month years after I have healed from my blood clots. Blood Clot Awareness Month matters to me for two distinct reasons. First, a little bit of knowledge about risk and signs and symptoms can often help to prevent a life-threatening situation. Second, if you have experienced a blood clot that has threatened or changed your life, there is hope for healing, and there is hope that you can recover and live your life again. You’re not alone, either, even though it may feel like it.

Know Your Risk for Blood Clots

Blood Clot Awareness Month Matters: Know Your Risk

I was 29 years old when I had a blood clot in my calf (also called deep vein thrombosis or DVT), which broke off and traveled through my bloodstream to become a life-threatening blood clot in my lung (also called pulmonary embolism or PE). At the time, I was running half marathons, and I was working to achieve all the things you do to lead a healthy life: Exercising, eating right, and losing weight. I didn’t know that blood clots can happen to anyone, or that I could be at risk because I was doing everything right by taking care of myself.

After thorough investigating and testing by my medical team, it was determined that my blood clots did not have to do with things that generally go hand-in-hand with an unhealthy lifestyle (being overweight or sedentary, as an example), but that I had a somewhat rare acquired (not inherited) autoimmune clotting disease called antiphospholipid syndrome (also called APS). Blood clots are a common thing that can happen in people with APS, along with pregnancy complications in women, heart attacks, and strokes. Along with blood clots, I also had low platelets as a result of APS, which can cause too much bleeding, making my situation complex and serious. I’m fortunate to have a hematologist who is skilled in managing difficult cases like mine.

Why Knowing Your Risk for Blood Clots Matters: Even if you do not think you could be at risk for blood clots, know that you could be. Below is a list of the most common risk factors. Look over them, discuss them with your doctor, and keep them in mind.

Know the Signs and Symptoms of Blood Clots

Blood Clot Awareness Month Matters: Know the Signs

While I may not have known my risk in particular for blood clots, so there was nothing I could do to prevent them with regard to that, I also did not know that anyone could be at risk, so it never occurred to me to know the symptoms of blood clots. The signs were there, I just didn’t know it.

I felt lingering, and then excruciating pain in my left leg, primarily when I put weight on it. Within a matter of a day or two, I also felt sharp, stabbing pain in my left ribcage and found it hard to breathe, particularly when I tried to sleep. I could not talk in full sentences. I thought both of my pains were related to running and fitness. I thought the pain in my leg was the return of a knee stabilization issue resulting in a pulled muscle, and I thought the pain in my side was due to running too fast while dehydrated.

As someone who was physically active, both made perfect sense to me at the time. I never thought to question the pain in my leg. If I had, perhaps I could have avoided a life-threatening situation when the blood clot traveled to my lung. I had about a day and a half between the two events, but since the pain in my leg steadily and noticeably worsened during that day and a half, looking back, I should have gone to an urgent care. Looking back, the signs were clear that this was not a normal running injury or pulled muscle.

Why Knowing the Signs and Symptoms of Blood Clots Matters: Even if you don’t have an identifiable risk factor for blood clots, or might have a story like mine, knowing the signs and symptoms of blood clots could still save your life. People can experience all, none or some of the symptoms. Knowing them saves lives. Below are the most common signs.

Know What Blood Clot Recovery Can Be Like

Blood Clot Awareness Month Matters: Learn About Recovery

I spent ten days in the hospital, where my life hung in the balance for several days, due to extensive clotting and bleeding concerns related to APS. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and painful journey (I’ve never been in so much pain before or since). It took me two years to physically recover from the blood clots, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and my clotting risk with medications and follow-up appointments.   

My experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world. I wasn’t sure how that would go – you can’t go back after you share such personal details about your health online in today’s world – but I’m glad I took the risk. I want people to know there is hope for healing from blood clots, and if you’re going through a difficult recovery, you are not alone.

Why It Matters: Talking about the physical and emotional obstacles of recovery from blood clots is why I created this space, and why I continue with my work here to this day. If you are faced with an unimaginable situation after experiencing a blood clot, you are not alone. There is hope for healing.

If you think you might be at risk for blood clots, or if you don’t know, discuss it with a trusted doctor next time you see him or her. If you experience any signs or symptoms of blood clots or think that you might be, don’t wait to seek medical attention. Call your doctor, and if you can’t get in touch with your doctor, go to the hospital or emergency room right away.

If you have a blood clot, find a doctor who can support you in what you are going through both physically and emotionally by either providing that care first-hand, or referring you to other resources. I entered my hematologist’s office for my first follow-up appointment the week of my hospital discharge, and the first thing we talked about was what my recovery would look like and how long it would be. Tell your doctor how you are feeling, from the start. If you’re not supported or don’t feel supported, consider finding another doctor who can help you. I know that’s hard when you don’t feel well, but it is so important.

More About Blood Clot Awareness Month

Learn More: Blood Clot Awareness Month Matters

Connect with my on social media channels where I’ll be having candid conversations about blood clot recovery and sharing encouraging reminders all month long. My most active profiles are my Facebook Page and Instagram. You can also find me on Twitter from time to time.

Join my Private Facebook Group for ongoing support where you will find me and a number of your peers. We’re approaching 6,000 members there, and I’m very excited to have created such a meaningful place for us to gather. I would love to reach that milestone this March, so if you’re not there yet, what are you waiting for?

Spend some time connecting online too. Use one or more of the following hashtags in your online conversations: #hopeforhealing #notalone #AwarenessMatters #bcam

Why It Blood Clot Awareness Month Matters: Now, several years after my experience, I am no longer the only person publicly speaking or writing about what I have been through or sharing about how difficult recovery from blood clots can be. We are a community, and we have much to share and learn from one another.

Whether you decide to celebrate this month for Blood Clot Awareness or not, I hope you take a few moments to learn about your risk and learn about the signs and symptoms of blood clots. If you’re in the midst of recovery or farther along in your journey, I hope you remember this: There is hope for healing from blood clots, and you are not alone.

Reader Writes In: How do you plan to participate in Blood Clot Awareness Month this year? I can’t wait to hear about it!

Share your story in the comments below.

Filed Under: Educate, Empower, Encourage, Enrich 1 Comment
August 21, 2019

Cruising After Clots

I recently went on a trip to Alaska via cruise ship. Not only was it the first cruise I have ever been on, it happened after blood clots in my leg and lung several years ago. For people with clots, or people who are taking anticoagulants – also known as blood thinners – there are often special considerations to to consider when planning a vacation. These include things like travel arrangements, medication management, food (for some blood thinners), and access to emergency medical care. If you’re considering cruising after clots, here is everything you need to know to have a safe and wonderful trip.

Home Away From Home

It takes a lot of physical and emotional energy for me to plan a big vacation, and I spent several weeks getting ready to go. I researched a lot about cruising, talked to friends and family who have gone on trips, and called the cruise line with a myriad of questions on multiple occasions (that’s okay, they are prepared to answer your questions). I noticed that a lot of information about cruising with disabilities does exist, and while I don’t consider myself disabled, I do have special medical considerations that other people may not have. Despite this information being readily available, I still wasn’t sure what to expect, or how it would go, so I am sharing my experiences specifically to help people who have had a blood clot, or who take anticoagulants, plan and enjoy a cruise – because you can.

Misty Fjords

For me, cruising was an unusual kind of vacation, and one that I was not sure I would enjoy. I was nervous – definitely – because I felt like I would be far removed from medical care or supplies, if needed. In addition to that, Alaska feels really far away – and it is. It is also not easy get to from where I live in the Midwest (it was a full day of travel on the way there, and over a day of travel on the way back). Other thoughts plagued me too: What if there were no vegetables on board or what if they didn’t have vegetarian options for lunch? What if I got seasick? What if I just got sick?

Glacier Bay

Still, I couldn’t resist the call of such a wild, inviting, beautiful place. I have always longed to visit Alaska, so when the opportunity arose, I committed to going. The cruise I was on went from Vancouver (Canada) to Anchorage along Alaska’s Inside Passage, which is a popular coastal route for ships and boats along a network of waterways which weave through the islands on the Pacific Northwest coast of North America. It is home to Glacier Bay and an abundance of wildlife, marine life, waterfalls, and native plants. If you’re worried about being “at sea” for too long without access to shore – medical care, emergency care, pharmacies, or just solid ground – consider booking a cruise that is shorter and has daily (or near daily) ports. I felt infinitely better with this itinerary for my first cruise, rather than spending multiple days at sea.

Traveling after blood clots can take some planning, and perhaps even some slight modifications, but you can do it. If you want to go cruising after clots, here are my tips to help you prepare.

Cruising After Clots: What You Need to Know

  • Talk with your doctor. First, make sure it is recommended for you to travel, and travel via cruise ship. If you know it is okay with your doctor that you travel, and you are still nervous, make an appointment prior to your trip to discuss your concerns and what you can do about them.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a few days before I leave, in case adjustments have to be made.
  • Refill your prescriptions and get a print-out of your medications from your pharmacist. There is nothing more troubling than being on vacation and having to find a pharmacy to refill medications you already take daily. While you are refilling your scripts, ask your pharmacist to print out a list of your current medications to take with you.
  • Know where you are going. If you are worried about needing access to medical care or a pharmacy while you are gone, do a little bit of research to find out what ports/cities will have these facilities available to you.
  • Prepare your Passport and travel documents. If you’re traveling through countries, have your Passport updated and ready to go. If you prefer, print flight tickets the night before. Also, print out your flight and ship itineraries, along with important phone numbers, and take them with you in your carry-on in case you need to make last minute changes.
  • Consider insurance and trip protection. If you would be in a serious accident and need to be evacuated from the ship or a rural area, it will be very expensive. Consider an affordable medical evaluation plan like MedJet Assist. Also, if you have the option to purchase trip protection in the event that you need to cancel your cruise due to injury or illness, it might be a wise investment.
  • Pack your medications (anticoagulants and others) to take with you on your person for the trip. Do not put your medications in your checked luggage – either at the airport or while using the ship’s luggage service. I found myself separated from my luggage on several occasions throughout the trip, but I carried all of my medication – for the whole trip – in my carry-on bag, which I kept with me at all times. The only time I did not take my medication with me in my carry-on bag was when we left the ship for daily excursions, then I left my medication in my room.
  • Dress for your destination and dress in layers. Be comfortable and take clothes that you would normally wear. For example, consider packing jeans/shorts, tops/shirts, a dress (or nice slacks and top/dress shirt) for formal nights (if you are participating – you do not have to); sweaters or sweatshirts, jacket, rain jacket/poncho/umbrella, scarf or wrap, swimsuit, sunscreen, toiletries, comfortable shoes for walking, shoes for relaxing (slippers, sandals), socks, special wear for any excursions you will be taking (hiking boots, insect spray, etc.).  
  • Bring or buy a reusable water bottle. I buy a liter of water once I am through airport security (save the bottle). You can drink the water from the ship, so I refilled my water bottle that I bought at the airport each time I left the ship. Be prepared to spend between $2-$4 per bottle on board if you want to buy bottled water to carry with you. 
  • Bring a backpack or hands-free bag with you. It can double as your carry-on and daily excursion/tour pack.
  • Portable cell phone charger. I like being able to call or use my cell phone at any time and never want to be caught in an emergency situation with a dead cell phone. You can order my favorite portable charger, and other favorite travel accessories, here.
  • Over-the-counter bleeding products. Bandages and sponges to control or stop bleeding are a part of my travel gear, no matter where I go. While they are not a substitute for professional medical care, they can help with minor injuries, or in controlling bleeding until you are able to access professional medical care.  You can view and purchase the products that I use and recommend here.
  • Take time (zones) into consideration. Depending on where you are going, you may need to adjust the time of day/night you take your medication. Ask your doctor about this ahead of time, and make a schedule to do so, if needed. I chose to take my medications at the same time I do at home, so I set an alarm to remind me due to the time difference in Alaska (it is four hours behind my home time zone).
  • Pack the prescription bottles. I took my prescriptions in the original bottles and took my pill case with me too. Once I was onboard, I filled my pill box as I normally do.
  • Be mindful how changes may impact your medication. I take warfarin, so a lot of things can interfere with my medication (food, alcohol, other medications, hydration, etc.). If you take warfarin too, be mindful of what can raise or lower your INR and avoid those changes, or talk to your doctor about how to best manage them. There is more information below about food and alcohol on cruise ships.
  • If you take warfarin, don’t panic about the food. I was worried about how my diet may be impacted on a cruise, since I take warfarin. I had access (daily) to the foods I normally eat (vegetables and vegetarian options included) through the cafeteria dining option. I also had a lot of extra options too. My encouragement to you is to eat as you normally would, and also try a few new things if you are so inclined. I tried escargot (it was salty) and Baked Alaska for desert (not a fan).
  • Know your limits with alcohol. It can be really easy to eat – and drink – a lot on cruise ships. I do not drink a lot of alcohol, so I did not purchase a package for alcoholic beverages. I did enjoy an Irish Coffee on the deck in Glacier Bay, which I knew I could handle without difficulty. Alcohol can interfere with blood thinners, so know your tolerance.
  • Consistency is key. With warfarin, and some other medications, it is important to be as consistent as possible in your food and drink choices. I didn’t find it difficult to be consistent on the cruise due to the wide variety of food that was available to me.
  • Take your own hand sanitizer. Ask anyone who knows me personally, and they will tell you it is not a secret that I don’t like germs. I was pleased t learn that the ship’s crew does not like germs either. Hand washing and sanitizer stations were readily available. I also brought my own – just in case.
  • Visit the on board infirmary/hospital upon your arrival. It is a good idea to know where it is in relation to your room, just in case you need it. You can also check the ship’s website ahead of time to see what kind of services they offer there (most are staffed with a physician to do basic medical care or to address emergencies until you can get to shore). Doing that gave me a lot of comfort and peace of mind.
  • Be prepared for sea sickness. I knew I was sensitive to motion, but I did not know if the ship would bother me. It did, and I was sick numerous times throughout. I wore SeaBands, which are non-medicine bands to help with motion sickness. They did help. You can view and purchase the ones I used here. If you aren’t sure what will work for you, talk to your doctor ahead of time about your options (bands, patches, medication). If you don’t know if you get seasick, be prepared and take something with you, just in case.
  • Know what to do in the event of an emergency. The cruise line/ship will help you with this on your first day. I was surprised to learn that cruise ships take safety very seriously and prepares you for any type of disaster that may occur by requiring you to attend a safety session (called muster) where you learn about life vests and boats, sanitation, the hospital/infirmary, evacuation, fire, etc. If you’re worried about being “at sea,” you can take a cruise that hugs the coast (like I did) or that has minimal days at sea without visiting a port.
  • Do what you are comfortable with – and have fun. I did participate in several shore excursions in Alaska, within my comfort zone (whale watching, boat tour of the Fjords, and a wildlife hike). Shore trips and excursions range from very easy to very extreme. Do what you are most comfortable with, and if you choose to participate in extreme activities, follow all safety precautions that are given to you.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a day or two after I return home from a vacation.
  • Plan a day or two of rest. Traveling after the cruise was long and stressful – more so than other vacations I have been on – and I was very tired when I returned home. I think this is because the flight or drive is traveling, then the cruise is traveling, so it can feel like a lot of going and no stopping to decompress. I had to get back into the routine of what I do, eat, drink, etc. I was also very seasick when I arrived home (more so than when I was on the ship). If you can, build a day or more of rest into the end of your vacation (either at your final port or at home) to get yourself back on track and rest.

I don’t want anyone to be afraid to travel after blood clots. If I can share any resources to help you get out and do the things you have dreamed about, that is what I am going to do. With that in mind, here are my gifts to you:

Free Gift #1: Cruising After Clots Checklist

Free Gift #2: My Top Tips for Cruising Alaska

There is hope for healing and you are not alone,

Reader Writes In: Have you been on a cruise? Have you been cruising after clots? Where did you go? What are your top travel tips for cruising?

Share in the comments below.

FAQs and Contact Me

Filed Under: Educate, Empower, Encourage, Enrich Leave a Comment
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 1, 2019

Blood Clot Awareness Month 2019: Awareness Matters

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

Why Blood Clots?

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

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

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

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

Blood Clot Awareness Matters

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

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

Knowledge Saves Lives

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

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

Blood Clot Recovery: Snapshots of You

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

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

Make Your Connections Count

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

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

Hope for Healing from Blood Clots

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

www.BloodClotRecovery.net

A Note of Gratitude

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

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

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

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

Where to Go for More

Connect with me on social media: Facebook and Instagram are my most engaged platforms. You can also join the private Facebook Group to chat with me and other people who have experienced blood clots.

Get Your BCAM Bracelets

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

There is hope for healing and you are not alone,

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

Read More: Blood Clot Advocacy and Awareness

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February 23, 2019

The First 30 Days of Blood Clot Recovery: My Notes

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

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

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

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

The First 30 Days of Blood Clot Recovery

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

There is hope for healing and you are not alone,

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

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

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August 30, 2018

Happy 36th Birthday to Me

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

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

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

I guess I got old.

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

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

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

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

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

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

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

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

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

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

My 36th Birthday Giveaway Details

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

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

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

a Rafflecopter giveaway

Good luck!

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

 

 

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

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

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

Filed Under: Educate, Empower, Encourage, Enrich Tagged With: , , , 18 Comments
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