I’ve been staring at a blank computer screen for just about four and a half hours now, and all I can think of to describe the last year is, “I wish had I plantar fasciitis instead of a blood clot.”
Yes, you read that right. I wish I had plantar fasciitis. I wish I could say that’s all it was, better luck next season, you’ll feel better after some PT.
Why would I wish that? Because at this time last year, I thought I had plantar fasciitis and then I almost died when it turned out to be a blood clot in my leg that broke free, traveled through my heart and lodged in my lung as a pulmonary embolism instead.
The truth is the last year has been nothing but a roller coaster ride – not to sound cliché – of emotions. I have felt angry, alone, confused, scared, betrayed, depressed and been in more physical pain than I ever thought possible. It is said the pain of a PE trumps child birth and while I can’t compare the two, I wouldn’t question it if someone ruled in favor of the PE. Now, I am dealing with the emotional trauma of facing a year (or more) recovery period and lifelong treatment of a condition that will never really go away. To some degree, I will always live with the expectation – and fear that goes along with it – that I could, more than others, develop another clot, and I question whether or not I would make it through a second – or third, or fourth – one.
It took me 363 days to run again – without pain or fear or gasping for air in four and a half seconds. I ran a successful two miles for the first time, two nights ago. Successful in that I finished standing on two feet, breathing and able to walk the next day. It’s funny, for all I read about competition and beating the other gal and making it faster, stronger, longer – the only thing that truly matters to me now is that I can run, or walk or breathe or think for that matter. I spent 12 long months not being able to walk very far some days, breathe without pain and unable to remember simple things like why I got in my car or what I was supposed to do with my time that day, let alone which highway would take me to my Dad’s house or that I had to be told something a minimum of 56 times in order to remember it. There are parts of the last year which have completely escaped me.
It was hard and it’s not pretty, but I feel a gigantic feeling of relief 363 days after my last run.
I set out to write an angry post – because I am angry – about what happened to me. It doesn’t seem fair. And yet, 1 in 3 people don’t survive a PE. In the last two days, I have received two private messages from readers who have lost a friend or family member to a PE. I’m the third one. Why me?
From anger, I move on to complete grief and sadness. Many days, I am overridden with guilt that I am alive when so many others cannot say the same thing. I want to know why, how and when things will return to normal. But for me, there is no returning to normal, there is only a new normal, which I hope someday I can adjust to.
In speaking with a friend this weekend, I said, “If only I had known, I wouldn’t have had this happen,” to which she responded, “How were you supposed to know?” And she is right. How was I supposed to know? So many young, active, healthy people do not think a DVT or PE can happen to them and that simply is not true. It can. It will. And more people will die because most people simply do not know.
From anger and sadness, I turn to sheer determination to spread the word about what happened to me. I tell everyone. I have started a new site dedicated to Blood Clot Recovery, although I still plan to talk about my experiences here because it will always be a part of the new me.
I almost gave up on this blog and running, until two nights ago when I ran those two miles and realized running doesn’t have to be perfect. I’ve been gone for 363 days and it wasn’t easy and I did (and probably still will) think I would be better off not having to deal with anything that happened to me – the pain, the anger, the grief. But, then I think of one thing, there is someone else out there, going through where I have already been and I want to be there to say, “Don’t give up, because it does get better, little by little, day by day.” And you may take seven steps backwards to every one you take forward, but one day you will look back down the road and think, “I can’t believe how far I’ve come.”
It may take years for me to ever gain a sense of peace about what happened to me. I am often fearful of what happened and what is to come. Right now, I know I cannot face the pain of another PE. But, I also know, my life is more meaningful than it has ever been – because I have this life. I don’t know why and I don’t know where, when or how, but I do know I am here for a purpose and in the coming months and years, I hope I find that purpose, because I was not given a second chance without one.
Me & Judi on the day I threw my blood clot, one year ago.
Until the next mile marker,
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There is nothing about this I do not love. Congrats on hitting the one year mark. For all the times you wondered if you would, you did…and, often times, it was because you made a daily choice to survive this, especially emotionally. I’m so sorry for all you have endured in the last 2 years of your life, but I’m continually amazed by your strength, endurance, and perseverance. You are a remarkable woman. Your ability to transform what has been awful stuff to using it to effectively help others speaks to your compassion and character. Love you.
Thank you, my friend! As you know, I probably would not have survived the last year (or more!) without you. Even if just to call and talk to you and realize,
“No, I am not losing my head, this is a serious, serious thing.” There were many times I wondered if I would be here today to write about this, thanks for reminding me of that because down the line, I might need to be reminded again! There is nothing I do not love about your comment. Thank you, for stopping by to read what I have to say and for everything you have done the past couple years for our friendship. It’s too much to write or even try to write, just know that my appreciation of you and what our friendship has become means more to me now than I ever realized (I mean, my God, you braved a hospital for me!!). This is NOT something someone can manage alone and yet, I know people try to or have to. That is one of the reasons I started BCRN – to help those who are alone, so I guess you would be one of my inspirations for that vision!
Your post left me shaking – I can’t imagine all of the feelings you have gone through over the past year!!
I’m glad that you are able to run – no matter what pace – now. I hope that each day gets easier, both physically and emotionally.
Thank you for sharing this – sometimes I get in a funk over nothing and a post like this really puts things into perspective!!!
Thank you for reading my post, Kim. I appreciate what you said and I need to remember now more than ever that when I get mad down the line about not running fast enough or far enough – just look at how it could have been. As you said, this whole thing has put a lot into perspective for me too, and I am glad to start a conversation about it with others such as yourself!
Smack! That’s how I felt reading your post so I can only imagine how you feel having this condition. What caused this blood clot? For me the worst part would be living in constant worry that a clot could occur again. Powerful post that deserves HUGE readership! You are very inspiring and strong!
Hi Kymberly. My blood clot was caused my probably several contributors, but the most likely were being on oral contraceptives combined with having Antiphospholipid Antibody Syndrome (APS), which a hematologist thankfully found our I would have been in trouble again down the line – the ER docs were ready to blame it on birth control and send me on my way. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. It can occur in people with lupus (which they don’t know if I have yet) or in otherwise healthy individuals.
Thank you for your kind words. The thing that frustrates me the most is that I can’t seem to get enough people to listen about blood clots!! They are so dangerous and, as you can see, can happen to any of us – young, old, active, not active, small, large, etc. IT DOESN’T MATTER!
I will always worry about another clot because I will forever be at an increased risk, even while taking medications. I pray that it does not happen and if it does, that I will find strength to make it through that again because I have to tell you, right now I don’t think I could.
People such as you stopping to read and leave a note means the world to me. You never know when I – or now you – can save someone else what I went through just by knowing it could happen and it is a serious thing. Thank you for reading!!!
I recently was diagnosed with plantar fasciitis only to find out a month later that the deep veins from my foot to my groin were all clotted. I’m in so much pain, there’s no way to get comfortable. My leg is swollen to TWICE it’s normal size, it’s red feels got and I’m waiting for it to burst any minute. I’ve been on blood thinners for 1 month. And it doesn’t look like it’s going away any time soon. This doesn’t run in my family, I don’t know why I have it. I appreciate you telling your story, I’ve been feeling so alone in this. They actually found the clots when I went in for a procedure for venous reflux which is also new to me…except for the pain…my legs have been painful for quite a while. Any info that you can share is much appreciated. At this point I don’t know what to expect. Thanks again!
You have had a heck of a year and I think you are so incredibly strong. Your post about your 2 mile run over the weekend made me smile – I was so happy for you. I think it will be the first of many. I also believe that you are doing a world of good by passing on information about blood clots. So many people – me included – were or are unaware of what can happen. Keep it up girl, I’m cheering you on!
Nanci, I loved your comment on my run over the weekend – it made me smile right away and as you know, you are one of my inspirations for staring WW again so I should be thanking YOU! You look fantastic, girl! 😉
Thank you for reading and learning about blood clots. I always say, if I can tell just one more person, I’ll be happy. Now you know too and that is more than I can ask for for one day! 😉
Thank you! It’s nice when we inspire each other. 🙂
You sound like an incredibly strong woman! Congratulations on your run! We all are guilty of taking things for granted. Thanks for the reminder.
Thank you, Lea! And thank you for reading.
I’m heading over to read your recap too – I can’t wait for Pretty Muddy here in September. Truth be told? I am AFRAID of that race because I don’t know if I will be strong enough to do it, but I am nervously excited too! I will read how it went for you.
I found your website by way of the Factor V Leiden group on Facebook and have just read your “About” page as well as this blog, and I want you to know I understand. Nine years ago I also had DVT/PE. On a Thursday I ran 6 miles, on Friday I couldn’t walk to the bathroom. I’ve never been a speedy runner, but to lose all of that in one moment was just as mentally devastating as it was physically. So, I’m also a “third.” I’ve spent much of the last 9 years angry, a regular She-Hulk. I’ve flirted with getting back in shape several times, but my weight steadily crept up, and after coming off Coumadin for 3 months, I had more blood clots in late 2009. I’ve probably been as angry about the Coumadin as anything else. I’ve also developed arthritis in my right knee, but have that managed. I’ve made excuses for not making my health a priority… decreased lung capacity from bilateral PE, post-phlebitic syndrome, varicose veins, fear, anxiety, feelings of being unworthy of existence. If it’s negative, I’ve probably felt it. Writing this is actually quite cathartic as I’ve just finally put into words what I’ve been hiding for so long with a smile on my face. Oh there have been genuinely happy times, but I’ve felt like I got a raw deal for many reasons (and seasons).
So, after periodic spurts, but never getting much more fit than running a 35ish minute 5K, I decided to make it a priority in March. I bought some cute running gear and hit the neighborhood sidewalks. I’m not making speed records, but yesterday I ran 7 miles for the first time ever. Took me 1:24:50ish which, for someone who really hates the running part (I love the results though), I consider pretty respectable. Reading your story gives me even more reason to keep going. I don’t know you, but I’m glad you’re here and confident enough to blog about you experience. Just gotta keep taking one step at a time and eventually we’ll both get there. 🙂
Hi Carolyn! Wow, thank you SOOO much for stopping by here and for sharing your story so candidly. I have re-read your words several times now and I cannot accurately express how much comfort I gain from them just knowing I am not alone in this. We have very similar stories and I know a lot of times, I just don’t feel like anyone understands, especially other runners. To go from that to not being able to walk, as you said, is something that really, really not only takes you out physically, but is emotionally devastating.
As you said, I do not know you either, but you have described every emotion I have felt for the past year perfectly – and I just never thought I would be able to relate to someone over that. Thank you so much for putting it all out there. From one to another, you know how difficult this is to talk about and by deciding to put it out there, when I receive feedback such as yours, it makes me so grateful that I did.
It is so funny that you said you ran 7 miles because I was just telling a friend, in my mind I feel like I can run 7 miles, but I started with the two and that was plenty for me right now – I am sore two days later!! (Was running that hard when we first started?!). So, I applaud you for running that – no matter how fast or slow – because it is apparently a goal of mine!
I would love it if you came back and let me know how your training and race (if you haven’t done it yet) goes. I am starting training for a Quarter Marathon in August – around my birthday – and that terrifies me a little! I feel the same as you, though, knowing there is someone named Carloyn out there giving it her all and feeling exactly like I have for quite some time gives me fuel to get out there and give it my all – because you are too! Thanks, Carolyn.
I have decided I’m going to do the Detroit international half-marathon in October. I have a series of goals and that’s one of the last ones for the year. I’m going to sign up for a 10K in July, just looking for the right one (have a couple in mind). I’ve also got a couple 5Ks on the radar (one is a mud run), but have yet to sign up for any yet. I will be sure to come back and let you know how it all goes. 🙂
THat is scary and I can see how it would affect your life. Glad you were able to run again!
Thanks, Christy! And thank you for taking the time to read my post. Hope all is well! 🙂
How are you doing now? I would never want to have PF again…. Too painful and depressing. I am a runner and it was really frustrating that I wasn’t able to have a “normal” run for 3 years… I had stem cell treatment, as recommended by one of my running coaches and it worked for me. It was a 3-week therapy with an orthopedic surgeon, Dr Grossman (of Stem MD). I am not really sure what you’re going through, but wishing to have a PF than blood clot can mean you are really in painful situation. I wish you well…
I am recovering day by day, it has been about a year since I was able to run again since they discovered the blood clot in my lung. I am sorry to hear plantar fasciitis was so painful for you. I have heard it can be quite painful as well. My initial thought with my calf/leg/foot pain was that I had PF and looking back, I do wish that’s what it was instead of a blood clot because it has completely changed my life, at times for the worse. There were times I could not even get out of bed to walk downstairs, let alone run. Everything in my life changed and many things completely gone (like relationships and my job) as a result of what I went through. I would obviously never ever wish the pain of PF or a PE on any other person, but the PE was the single most excruciating pain I have ever felt in my life and had I known how deadly it was, I should not have waited even one minute to seek emergency medical help. So much of my life is not about running anymore, even though initially that is what I was upset about losing. Facing a lifelong illness/injury (or chronic injury, as you know) is not something you just get over in a few weeks or even a few months. I am wishing you the best for what I hope is a full recovery. I appreciate you taking the time to read my post.
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