I wish I had plantar fasciitis instead of a blood clot

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.

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.

Me & Judi on the day I threw my blood clot, one year ago.

Until the next mile marker,

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Post-Thrombotic Syndrome: ‘Good Things in Life are Hard to Find’

PTS Graphic

I try to see the good in life, but good things in life are hard to find. Especially when facing the unknown of post-thrombotic syndrome.

I was blown away. It’s been almost ten months since I was admitted to the emergency room in the middle of the night with a DVT (blood clot in the leg) and PE (blood clot in the lung). That’s almost one year. That’s almost halfway through the projected recovery time.

Not a day goes by that I don’t think about, wonder about, feel or cope with what happened to me. Even when I try not to think about it (or happen not to), something reminds me about it. I get a pain in my calf or out of breath walking up the stairs. I sneeze and my lung cramps or I laugh too hard and start coughing. Usually, I’m reminded of what happened as soon as I wake up in the morning and stand on my feet before I can hobble down the stairs. One aching step at the time. The pain starts in my toes and spreads up my calf from there, a dull throbbing before the blood gets circulating as best it can.

My groin area is clear of blood clots now and should continue to be as long as I am on blood thinners, which is good – the farther away from my heart, lungs and brain the better. But, you see, I still have a chronic clot in the femoral vein of my left leg, right behind the knee cap. It may never go away. It is completely up to the body to either a) dissolve the clot, b) turn it to scar tissue so it can bore a new path through it or c) neither of these. Blood thinners don’t “heal” a blood clot. They just prevent more from forming, hopefully. I’m still waiting to see what my body decides to do. Neither I nor the field of medicine gets a say.

A constant reminder.

You’ve taken away everything, and I can’t deal with that. Just when things start to get better, another layer of worse gets thrown in the mix. I am dealing with the early effects of Post-thrombotic Syndrome or Venous Stress Disorder or PTS.

While some people who have had a DVT recover completely, others may be left with some symptoms in leg like swelling, pain, aching, heaviness, and cramping due to disrupted blood flow. The pain and swelling can be disabling. Symptoms in the legs are typically worse after standing for a long time. A compression stocking, although very unfashionable, helps the pain and swelling.  In severe cases, breakdown of the skin and fat may occur and ulcers may form.

For me, the emotional effects are most overwhelming right now. I’ve had to adjust my level of expectations, at least for the time being, and allow for my leg and lung slowly recover. I was already bad at adjusting expectations, in particular lowering them. I hold myself to a high standard – in life and in running. I can’t expect to run like I did, yet, I do.  As I get closer to the anniversary of my PE, I can’t sleep; I toss and turn or wake up gasping for air, afraid I am suffocating again. My mind is hard to quiet; my pulse races and I have to remind myself of where and when it is.

Being strong, holding on. Can’t let it bring us down. As I move through recovery – sometimes things are foggy, and other times, things are clear as day. I spend a lot of time thinking and wondering and hoping things get better. And I have no choice but to look at this as a new phase of healing, something I have to go through to get to the end result. I can’t let my mind wonder “what if” for very long. The what if’s are unimaginable and the things that tend to keep me up at night.

It’s not over.

Until the next mile marker,

Could YOU Have a Blood Clot?

One of my running friends said it best, “It would be nice to know how to tell the difference between muscle pain and the type of pain you felt. Or maybe the really scary thing was that you couldn’t tell?”

I’ve been thinking a lot about that. And yes, one of the really scary things was that I honestly had no idea the pain I was feeling in my calf and lung was anything to be that concerned about until it was almost too late. That being an acute blood clot known as deep vein thrombosis (DVT) and a pulmonary embolism (PE), which developed as a result of a complete autoimmune meltdown. Why you ask? Because my immune system mistakenly produces antibodies against certain normal proteins in my blood, also known as antiphospholipid syndrome. You can read more about my hospitalization and diagnoses here and here.

The truth of the matter is we are all runners, cyclists, walkers, lifters – athletes – and we have learned through racing, training and pushing our bodies to the limit that pain is not only acceptable, but sometimes just the way it is. I know, I’ve struggled with Patellofemoral Syndrome (a.k.a Runner’s Knee and yes, everything really is a syndrome nowadays) all but the first year I ran. Knee pain for me? Completely normal, something I’ve had to live with if I want to run. It hurts worse at times, feels better other times and with no apparent rhyme or reason can totally make or break my run. And, I’m not alone. Most runners I know and run with seem to struggle with some sortof ongoing pain, injury or bodily malfunction.

We see each other in the Physical Therapists’ waiting room and don’t recognize each other because we are dressed normally. “How was your run?” becomes “How’s your PT going?” or “How’s that knee holding up lately?” We live with pain. In fact, some people might even argue it’s what makes us real. I thought that at first, Yes! My first running injury. I’m a real runner now! Um, no. That got really old, really fast and yet; we still run, bike, swim and tear up the gym with pain. Push through. Get over it. What doesn’t kill you makes you stronger. You can run 26.2 miles with pain, what’s stopping you now? You’re fine. Walk if off. Rest, Ice, Compress and Elevate. You know all the right things to say to yourself.

Given all of this, it only makes sense that when we have real pain that we need to be really concerned about, we shrug it off. We’re runners, right? We live sometimes everyday of our lives with an ache here or a pulled muscle there. We run long on Saturday and hobble around on Sunday and Monday (and maybe even Tuesday if you’re like me) until we’re recovered. Why are you walking like that? Someone asks us at the office. I ran 22 miles on Saturday (meanwhile we’re thinking, I bet you didn’t). And we go about our day, proudly displaying our battle scars.

Looking back, now? Yes. I should have known something was wrong. Really wrong. I blamed in on my knee.

The pain was different.

First there was the leg pain. I had been complaining about leg pain for a couple of weeks or so. I distinctly remember telling Duane, not only did my knee hurt, but my calf hurt too. I told him this pain extended down into my ankle and bottom of my foot. The thing that was different is this pain was not as a result of running. I had it even when I didn’t run. In fact, when I ran, I noticed it less.

I have always had a discolored left leg:

June 2012

You can see the brown, which now looks like freckling, but before this incident, it turned almost purplish. In fact, the other thing that makes my situation complicated is that I have had more than one doctor look at my leg for the discoloration. It had been discolored ever since college, from what I can remember. I even had a biopsy on the skin about two years ago in which a dermatologist determined it was a pigmentation issue and not cancerous or anything like that. Even my gynecologist was fascinated by the color of my skin and listened to my blood flow. No one ever heard a disruption of blood flow. Hence, no one assumed it was a clot. I didn’t have varicose veins, either, further indicating a blood clot was out of the question.

DVT Causes:

  • Slow blood blow (often due to lying or sitting still for an extended period of time – such as in the case of a long plane ride or car ride)
  • Pooling of blood in the vain often due to immobility, medical conditions, or damage to valves in a vein or pressure on the valves, such as during pregnancy
  • Injury to a blood vessel
  • Clotting problems due to aging or a disease
  • Catheters placed in a vein

Symptoms of a Deep-Vein Blood Clot (DVT):

  • Swelling in one or both legs
  • Pain or tenderness in one or both legs, which may occur only while standing or walking
  • Warmth in the skin of the affected leg
  • Red or discolored skin in the affected leg
  • Visible surface veins
  • Leg fatigue

DVT can partly or completely block blood flow, causing chronic pain and swelling. It may damage valves in blood vessels, making it difficult to get around.

Half of all DVT cases cause no symptoms.

My Symptoms:
  • Swelling in one or both legs
  • Pain or tenderness in one or both legs, which may occur only while standing or walking
  • Warmth in the skin of the affected leg
  • Red or discolored skin in the affected leg
  • Visible surface veins
  • Leg fatigue

What I Felt:

Excruciating pain that extended from the back of my knee down to my ankle whenever I put any amount of weight on it. I was nearly dragging my leg by the time my husband and I went to the hospital. I have said it previously and I will say it again because it is the only way I can describe it: It felt like someone had the soft, fleshy skin behind my knee in a vice and just kept on tightening. Runner’s Knee caused me to hobble, caused me to scoot down stairs, sidestep curbs and grimace when getting in and out of the car. Runner’s Knee never caused pain in the back of my leg. Also, the side of my calf was tender to the touch, but not overly warm, now I know that soreness was primary along the femoral vein. I did not notice any swelling, especially in my lower leg. My knee is always slightly swollen to being with. I will note, remember Goofy when I was limping at Mile 4 of the full marathon due to my severe kneepain? It wasn’t knee pain. It was this pain that caused me to slow to the point of being pulled from the course and after a three hour plane ride and countless hours on my feet after that, I’m not at all surprised in hindsight.

I just wonder how long this clot had been building. It is terrifying to think about.

Then there was the side pain. I texted Judi on Sunday when she asked how my knee was doing, “Sore but okay. The weird thing is my left side. Hurts when I breathe like I can’t catch my breath. Slept propped up. No idea what the hell happened. Started mid-day yesterday.”

(OKAY, LOOKING BACK, THIS IS NOT NORMAL!)

Symptoms of a Pulmonary Embolism:

  • Shortness of breath that may occur suddenly
  • Sudden, sharp chest pain that may become worse with deep breathing or coughing
  • Rapid heart rate
  • Rapid breathing
  • Sweating
  • Anxiety
  • Coughing up blood or pink, foamy mucus
  • Fainting, lightheadedness or dizziness
  • Heart palpitations
  • Signs of shock

Pulmonary embolism may be hard to diagnose because its symptoms may occur with or are similar to other conditions, such as a heart attack, a panic attack, or even pneumonia.

Also, some people with pulmonary embolism do not have symptoms.

My Symptoms:

  • Shortness of breath that may occur suddenly
  • Sudden, sharp chest pain that may become worse with deep breathing or coughing
  • Rapid heart rate
  • Rapid breathing
  • Sweating
  • Anxiety
  • Coughing up blood or pink, foamy mucus
  • Fainting, lightheadedness or dizziness
  • Heart palpitations
  • Signs of shock

What I Felt:

I honestly thought this was a really bad side stitch. Only, it got worse over time. A pretty good indicator that it was not a side stitch was that it did not happen while I was running. It happened much later in the day once my body had a chance to relax. As time went on, the pain became nearly unbearable and not only that, it became hard to breath. I could not lie down at all – the pain was excruciating.I never really felt chest pains, but I did feel like someone was jamming their thumb into my rib cage. My breathing became shallow and I could only say two or three words at a time. The best indicator? I could not draw in a deep breath – very similar to when you are trying to catch your breath during a hard or hot run, but it doesn’t go away with rest or pain meds. One of my doctors told me, there should have been a moment in time when I realized I couldn’t breathe (when the clot entered my lung and obstructed air flow); however, I think this happened when I was taking my nap and I didn’t know the event had occurred. If I had been up, walking around or running errands, I may have noticed it as it happened and thought differently about it. Although this was serious, I am convinced my symptoms did not feel more life-threatening because thankfully my heart was not affected by the trauma to my lung.

The pain in my leg/knee/calf combined with the new pain in my side should have been an indicator that something was wrong and I needed immediate medical attention because a PE is most commonly caused by a blood clot that breaks off from a leg or pelvis vein and travels to the lung, creating a big problem.

(Now we know? I should have put the two pains together.) 

So there you have it. If you at all think you are suffering from a blood clot in your leg or lung, please do not wait to get emergency medical attention. Most people who are going to die from a PE do so within 30 to 60 minutes of the event, which is why I am so lucky (since I took well over 24 hours to go to the hospital). PE causes or contributes up to 200,000 deaths annually in the U.S. alone. One in every 100 patients who develop DVT dies, due to a PE. Immediate medical intervention is essential to reduce the risk of death to less than 10 percent. I’m still here!

As runners and athletes, we all live with pain, some of it more severe than not. We will probably always have to deal with pain. Its part of what makes us who we are – we push and workout and run until sometimes we just can’t go anymore and in those moments, we do sometimes find victory whether it be setting a new PR, going a new distance or achieving a negative split. But, listen to your body. If something doesn’t seem right, doesn’t feel right or just as even the slightest tweak to it, seek medical attention. Even if it is putting a call in to your family doctor. After all, I am convinced that is what saved my life. I wouldn’t be here had my family not been persistent in checking in with me and eventually calling my physician who then called me and told me to go to the E.R.

Until the next mile marker,

In Case You Missed It….

  • What the #$%! Happened. In June 2012, I was incredibly lucky to survive a pulmonary embolism (or blood clot in my lung) that broke off from a clot that had formed deep within a vein in my lower leg. Read my story here.
  • What the #$%! Happened: The Aftermath. What caused this, what my treatment entails and what the future holds for running, my job and life.

  • “That’s Why I Pray.” God is not finished with me yet – and that’s why I’m still here! Do you believe in the power of prayer to make a difference? Do you believe there is hope when all seems hopeless? Do you believe in better days? I do now more than ever! The lyrics and meaning of this song got me through some seemingly hopeless moments in the days after my discharge from the hospital.