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 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 breath 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 my 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 them. 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 for helping me live my best life with antiphospholipid syndrome.

I am grateful for 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, for commenting, for sharing, and for connecting.

Where to Go for More

I hope you also connect with the National Blood Clot Alliance, if you have not already, where I work professionally in Marketing and Communications. We have several projects that we are unveiling this March that I am very excited about. To make my passion my profession has been one of the most rewarding experiences of my life. Additionally, my job has provided me the opportunity to reach even more people with life-saving information about blood clots. For information you can share too, please visit www.stoptheclot.org.

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


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.


Menstrual Cycles and Anticoagulants: What’s Normal?

If you are a woman, one of the first questions you might have after starting blood thinners may be, “Should my menstrual cycle be this heavy while taking anticoagulants?” It was one of the first things I worried about after I was discharged from the hospital on low molecular weight heparin blood thinning injections several years ago. I worried – a lot – and wondered if it would be a major issue for me, especially since I had already struggled with uncomfortable periods for as long as I could remember. My periods were a little heavier, but nothing that made me worry, or think something was wrong. I had more frequent and slightly heavier periods for several months, but eventually my cycle returned to what was normal for me. Once I transitioned successfully to the oral anticoagulant warfarin, my periods stayed the same. A little unpredictable, but mostly manageable. They were occasionally longer or heavier, or I would occasionally have two shorter cycles in a month, but nothing was overly concerning for me or my doctors.

About five years after my blood clot, I had a period that was not normal for me. It arrived at the regular time, but it started out a lot heavier than usual. My first thought was, “Good. I’ll get it all out of the way in a day or two. I began to grow more and more concerned as the third day of my cycle arrived, and the bleeding worsened. By that time, I was going through a 10-hour pad in less than hour, and I was soaking through my clothes. It was a weekend – which is when all of my issues seem to happen, blood clots included – and I thought, “Since it’s my period, I’ll wait until Monday and call my gynecologist.”

It got worse as the weekend went on, so I called my gynecologist’s office. Most gynecologists have an on-call physician for pregnant patients who go into labor and delivery, so I was relieved to hear a messaging service answer where I could leave my number and have an on-call physician call me back. A doctor at from my gynecologist’s office called me back in about 10 minutes and asked me what was going on, so I explained my situation. The doctor was alarmed, even though I was very clear that I was taking the blood thinner warfarin. He instructed me to go immediately to the emergency room, which I did, now completely panicked about my situation.

At the hospital, I saw a number of doctors who ran and performed numerous tests to determine whether I was bleeding internally from my abdomen or from my uterus. After several hours, and a lot of uncomfortable evaluations, it was determined that I had uncontrolled uterine bleeding. In my case, it was a period that wasn’t stopping. The cause was an INR level that was way too high, which I did not know about. I needed a reversal treatment (oral vitamin K in this situation), to help bring my INR back into a safe range. I am very fortunate that I did not need a blood transfusion or need to be admitted. The ER staff told me repeatedly that it was very good I came in when I did, instead of waiting until Monday, because the bleeding may not have stopped on its own.

It took several weeks of medication adjustments, blood draws, and ultimately bridging with injections to stabilize my INR. While it was a very scary experience for me – and one that has also taken me some time to think about sharing here – it is an experience that I take very seriously. I learned a lot about my body and what not to assume. If I ever have bleeding like that again, I will not assume it is my period, because I know now that something could be seriously wrong.

If you have heavy periods on blood thinners, at least have one conversation with your doctor, before ending up in a situation that requires emergency room visits and emergency interventions to resolve.

FAQ: What You Need to Know About Periods and Blood Thinners

Below is a list of frequently asked questions about menstrual cycles and blood thinners. These are questions that I have asked myself, and that I hear a lot. What is the bottom line? If you have a heavy period on blood thinners, please talk to your doctor.

Q: Since I am on blood thinners, I can expect a heavier period, right?

A: Like so many things when dealing with blood clots and blood clot recovery, it depends on the individual situation. Not every woman has a heavy cycle on blood thinners, so if you do, you need to discuss it with your doctor to find out if it is normal or not. A possible side effect of the newer oral anticoagulants are heavier periods, so if you take those medications, talk to your doctor about your concerns and what to expect. It is important to make sure nothing else is wrong, or going on, as well as to find a solution for managing heavy periods.

Q: What kind of doctor should I discuss my heavy periods with?

A: It is probably best to involve two doctors, or specialists, in your care when discussing your menstrual cycle: The doctor who prescribes your anticoagulant (for me it is my hematologist) and your gynecologist. If you do not have a gynecologist, you can find one with this search tool: The American College of Obstetricians and Gynecologists.

Q: My doctor(s) said to expect heavier bleeding on blood thinners, so do I need to worry if I am bleeding a lot?

A: Don’t assume heavy bleeding is normal, especially since it could be dangerous and have dangerous consequences, such as blood loss or anemia. If you have heavy bleeding, you need to go to the emergency room, or hospital, to be evaluated. The U.S. Centers for Disease Control and Prevention (CDC) defines heavy bleeding as: 1) needing to change your pad or tampon after less than two hours, or 2) you pass clots the size of a quarter or larger. Read more about heavy periods, also known as menorrhagia, from the CDC: Heavy Menstrual Bleeding.

Q: During that time of the month, can I just skip taking my blood thinners?

A: No, not without speaking to your doctor. Heavy periods are usually not a reason to stop taking your blood thinner. Stopping your medication – even for a day or two – could be dangerous and result in a repeat clotting event. Not taking medication as prescribed is the most common cause of blood clot recurrence. Please do not ever stop your blood thinner without consulting with your doctor first. While some women may be given instructions to reduce or stop their blood thinner during the heaviest days of their menstrual cycles, this direction must only be given my the advice of a medical professional.

Q: Birth control helped with my periods, and now I can’t take it because of blood clots. What options do I have?

A: Birth control with estrogen is a risk factor for blood clots, and many women are advised to stop taking birth control with estrogen after a blood clot. However, many women have options without estrogen for birth control that may also help with heavy periods, especially if they are continuing to take an anticoagulant. More information about these options can be found here: Birth Control and Blood Clots. Other options to help manage a heavy period may include: pads or tampons, menstrual underwear or menstrual cups. We’re all different, and what works for one woman may not be an option for the next woman. Some women may, along with their physician, consider various surgical procedures to help address significant menstrual bleeding, such as a endometrial ablation or hysterectomy.

It can be difficult to manage a heavy menstrual cycle on anticoagulants, and for many women, it can be uncomfortable to talk about, but it is really important. Not only can an unusually heavy cycle be dangerous to your health, it can be damaging for your self-esteem. It can even effect work and social commitments. If you are experiencing a heavy period while taking anticoagulants, talk to your doctor about your concerns, and your options.

There is hope for healing and you are not alone,


Reader Writes In: Journal your thoughts, or share in the comments below. Have you experienced heavier periods since starting anticoagulants?


Read More: Women’s Issues and Blood Clots


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 as – 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.


Get my resources for emotional healing from blood clots here.


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

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.

10 Things to Know About APS

Shortly after I was diagnosed with blood clots, I was diagnosed with antiphospholipid syndrome, or APS. When my doctor gave me the news I was still in the hospital, and I had no idea how to say “antiphospholipid” let alone did I understand what it meant. I gathered from the concerned faces in the room – my doctor’s and my husband’s – that it was something horrible, but I was in too much pain from my blood clots to think much more about it at the time. It wasn’t until I got home from the hospital and started looking online that I learned more about this disease. What I found out scared me.

Antiphospholipid syndrome is an autoimmune disease in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. It can lead to an increased risk for blood clots, like the DVT and PE that I experienced. It can be called lupus anticoagulant, antiphospholipid antibody syndrome, or Hughes syndrome (primarily in Europe). APS can be different for everyone. Some people do not experience blood clots, and some people have ongoing, or serious, health complications like stroke or heart problems. Some people even carry these antibodies in their blood, but they never cause an issue.

There is no cure for APS, but there is treatment, which usually involves preventing recurrent blood clots with an anticoagulant. If you have been diagnosed with APS, it is critical that you get connected with a doctor who understands this disease, and who can help determine what the best treatment is for you. An APS diagnosis is frightening and overwhelming, but it is also manageable. It’s important to learn about it, and connect with people who understand, such as a knowledgeable doctor or medical team, and people who share your experience.

Here are ten things I wish I knew from the start:

1. APS is an autoimmune disease, but it’s not the same as lupus.

Lupus and antiphospholipid syndrome share many traits, but they are not the same disease, due to the antibodies that are present. Like antiphospholipid syndrome, lupus is an autoimmune disease. It’s likely that lupus results from a combination of your genetics and your environment too. About 50 percent of people with lupus do have antiphospholipid antibodies (Source: Johns Hopkins).

2. APS affects women more than men, and it is a major cause of recurrent miscarriage and pregnancy complications, when no other issues are found.

Women are generally more affected by antiphospholipid syndrome than men, but it can still happen to anyone. If you are a female who has struggled with recurrent miscarriages or stillbirths for no apparent reason, it might be a good idea to touch base with your doctor about whether or not APS is something you need to be concerned about or investigate further.

3. There is specific criteria to diagnose APS, and just because a person has the antibodies, does not mean he or she has antiphospholipid syndrome.

There are three blood tests that are used to diagnose APS: lupus anticoagulant, anticardiolipin, and anti-B2 glycoprotein I. These blood tests detect abnormal proteins – also called antibodies – in the blood. If APS is suspected, a person is usually tested using all three of these blood tests, because each test individually cannot detect all of the antibodies. At least one of these tests must prove positive and be confirmed on two occasions, no less than three months apart. Certain clinical criteria must also occur to confirm an APS diagnosis, such as one or more miscarriages, or a clotting event (Source: APS Foundation of America, Inc.).

Positive tests results without a blood clot, for example, does not mean a person has this disease. There are people who have the antibodies, but they do not have antiphospholipid syndrome. Diagnosis of APS can be complicated, so it is best to talk to your doctor about your individual situation.

4. APS can cause many other health problems.

Depending on if, and which, organs are affected by restricted blood flow due, usually from blood clots, and for how long, antiphospholipid syndrome can cause significant, or even permanent damage. These complications can include kidney failure, stroke, cardiovascular problems (heart damage, circulatory problems), lung problems (pulmonary hypertension and PE), and pregnancy problems (miscarriages and stillbirths).

In very rare cases, APS can progress to a chronic state known as catastrophic antiphospholipid syndrome (CAPS), which can cause widespread organ failure, and even death.

5. There are risk factors for APS.

A person’s own immune system causes antiphospholipid syndrome by producing antibodies that attack healthy cells, but doctors aren’t really sure why. These antibodies may be triggered by an environmental factor, such as an infection, that occurs in an individual who has a genetic background that makes him or her more susceptible to the disease. The exact genetic component of APS is, however, unknown at this time (Source: American College of Rheumatology).

6. There are signs and symptoms of APS.

There are symptoms of antiphospholipid syndrome, but sometimes, these symptoms can also be a result of other health concerns, which is why APS can be difficult to detect. Some of the symptoms include blood clots (DVT and PE), multiple miscarriages or stillbirths, stroke, transitory ischemic attack (TIA, or “mini” stroke), rash or skin ulcers, neurological problems (chronic migraines, headaches, or even seizures), cardiovascular problems (damage to heart valves), and bleeding (decrease in platelets, which can make symptoms hard to detect). (Source: APS Foundation of America, Inc.)

7. Prompt and accurate diagnosis of APS is very important.

Just like blood clots, timely and accurate diagnosis of APS is very important. The sooner a person is diagnosed with antiphospholipid syndrome, the sooner he or she can begin a treatment plan to reduce or eliminate symptoms of the disease. Connecting with a specialist, like a hematologist or rheumatologist, is important to diagnose and treat APS, because it is a very specialized, and sometimes complicated, disease. You can read more about how prompt diagnosis and treatment helped to save my life here.

8. There is no cure for APS, but there is treatment.

Medications, like anticoagulants, can reduce your risk for blood clots, and as a result, many of the problems that can occur has a result of blood clots. Generally speaking, APS patients are treated with the oral anticoagulant warfarin, or injections of heparin or low molecular weight heparin. Sometimes, people with APS also take an antiplatelet drug, like aspirin, to reduce their risk for stroke (Source: The National Blood Clot Alliance).

It’s important to address any risk factors for blood clots, such as estrogen for birth control or the treatment of menopause symptoms, obesity, or smoking. It’s also important to address general health concerns like diabetes, other autoimmune disorders, high blood pressure, and high cholesterol.

APS antibodies can come and go, but once a person has been diagnosed with the disease, they always have the disease. Treatment plans can vary from individual to individual, so make sure you are working with your healthcare team to ensure the best treatment possible for your situation.

9. There is still a lot to learn about APS.

Doctors – and patients – know more about antiphospholipid syndrome than we used to, but there is still a lot to learn, particularly about where APS comes from and why. Another important area of study is to what extent new oral anticoagulants, or factor Xa inhibitors, are effective at preventing recurrent blood clots in patients with APS.

10. APS is serious, but it is manageable, in most cases.

For many people, treatment of APS is not very different than treating blood clots, and management of the disease is often focused on managing recurrent symptoms. Taking a blood thinner like warfarin, though, can result in lifestyle changes that are sometimes difficult for patients to undergo. As new advances in technology and treatment emerge, I hope that we can one day find a way to cure or repress this disease.

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

 

 


Reader Writes In: What’s one thing you wish you knew about antiphospholipid syndrome when you were diagnosed?


Read more about how I live with antiphospholipid syndrome.


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