Conquering the Perfect Storm
By Nicole Wilkins
“You are the healthiest person I know. I can’t believe this happened to YOU!” After a two-month sick leave from work, I was happy to hear someone still thought of me as a healthy person. Recently my mind had been filled with self-doubt that everything I had ever done in my life to lead the healthiest lifestyle I possibly could, may have been for nothing. It wasn’t true, of course, but my mind was overwhelmed with the uncertainty of what my future would entail. Perhaps one of the most challenging aspects of my condition was my seeming loss of identity as a health conscious, “fitness fanatic”. It had been a primary focus of my life for so long, that my mind stretched to recall a time that it wasn’t. My profession was teaching, but my passion was healthy living. Ten years prior I had earned my personal training certification and had taken courses to stay current. I read countless books and magazines about the topic, sharing my knowledge with anyone interested. So when this unfortunate turn of events roared into my life, it was like a tidal wave – totally unexpected, striking with life-threatening force, and carrying with it a life-altering aftermath that would stretch months, years, and possibly for life. In the end surviving “the perfect storm,” as one doctor coined it, came down to simple lessons that I already knew, but until now had never fully understood the magnitude of the impact they could have on my life.
Warm days in October in Michigan are such an inspiring rarity that I couldn’t resist a long bike ride on the trail after work. I wasn’t a mile out when I was sure I had pulled muscles in my leg. Thankfully, I listened to my instincts that something was wrong and I returned home immediately. After icing my leg that night, I felt much better. Two days later I woke up and my leg looked like an over stuffed sausage. I was concerned, but really had no idea this could be life threatening. The following morning my doctor took one look at me and immediately sent me to the emergency room, suspecting blood clots in my leg. An ultrasound confirmed her suspicions, but the situation was bad. Within hours I was whipped into surgery. A filter was strategically placed in a main vein to catch any clots that might break off and travel to my lungs or brain. Next, they went into a main vein in my leg to try to grind up and suck out the long clots that extended the length of my leg and beyond my left hip. Throughout my five-day stay in the hospital, a stream of various doctors all seemed to have the same message: I was lucky to be alive.
The cause was three-fold: birth control pills, a recessive gene for a blood clotting disorder, and a genetic abnormality called May-Thurner Syndrome - the perfect storm of unfortunate circumstances. This rare combination left my prognosis uncertain.
My recovery was excruciatingly slow, physically and emotionally. In the beginning I could go only to and from the bathroom with a walker. Upon returning to my bed, I took long, deep breaths until the pain was manageable. I cried a lot in the beginning, particularly when I didn’t seem to be making any progress. My husband pointed out that I was recovering faster from my painful six-foot “walks” to the bathroom. The feat was small, but my realization was monumental. I had to reframe my definition of progress. The big steps were easy to recognize: moving from a walker, to a cane, to walking unassisted, and being released to drive. However, these steps took weeks to accomplish. Recognizing some small accomplishment every day became my focus: extending my leg, showering standing up, walking for one minute more than the day before, eating a meal at the kitchen table rather than my bed. I soon learned that focusing my attention on my successes boosted my confidence, spiked my motivation, and empowered me to take control of my recovery.
Staying positive wasn’t easy. I feared my life wouldn’t be complete if I could never again do the activities that had enriched my life for so long. I feared if I pushed myself too far or too fast, it would not only be the end of my regime to stay healthy, it might be the end of my life. Beyond this, I feared failure. I knew if I set a goal that I was physically unable to reach, my mind might catapult into a vicious cycle of self-defeating thoughts. To help prevent this, I tried to set goals that were short-term and easily attainable. At times I over shot my capabilities and my “failure” quickly reminded me what I was up against. I had to remind myself that progress does not mean always doing better or more than you did the day before. I could truly only fail if I stopped trying.
Seven years later I’ve come to terms that my body may never be capable of what it once ways. My current condition is “my new normal”. You can still find me at the gym five or six days a week, committing to my personal best for that day. Since doctors weren’t able to remove all of the clots, and my iliac vein is still closed off, my leg still gets swollen due to the reduced blood flow. My new normal has essentially become a routine, which I am told will be mine for a lifetime. I take blood thinners twice a day, wear my compression stocking religiously, learn all I can from all my doctor appointments, and elevate my leg. I struggle identifying these truths as a blessing or a curse. These daily reminders refuse to let me forget I will be dealing with this forever. On the other hand, it’s hard not to appreciate life and be grateful for all that I am blessed with, when every single day I am reminded that it all could have turned out drastically differently.
Although my experience may be uncommon, the lessons are universal. We all have barriers and commitments that impact our progress towards our goals: kids, work, injuries, finances, health problems, and countless others. We all have our issues. We can either choose to focus on the positives and factors we can control, or dwell on and blame our situation. My choice is to continue to live my life as “The Picture of Good Health,” and not as a victim of the storm.
National Blood Clot Alliance wrote:
Join us in the fight against blood clots.
More people die each year due to blood clots than due to AIDS, breast cancer and car accidents COMBINED. Yet blood clots are often preventable and treatable if you know the signs.
Too many lives are lost simply because public awareness is so low. Fewer than 1 in 4 people know how to identify the signs of a blood clots. Increased awareness will save lives. But we need your help.
This holiday season, we are raising funds for NBCA, the leading nonprofit organization in the U.S. focused singularly on building awareness and community among people who are affected by blood clots. Thanks to the support of friends and family like you, NBCA works tirelessly to prevent blood clots and save lives through programs focused on awareness, patient support, education, and research.
And while we are proud of all we’ve accomplished together, the need for your support has never been greater.
Someone dies every six minutes from a blood clot – and survivors are at higher risk of another clotting event, so the pool of at-risk Americans grows every year. We must act now to combat this medical crisis.
Ways to Help this Holiday Season:
Please consider making a gift to support blood clot awareness and prevention today. Every dollar raised for NBCA during The CrowdRise Holiday Challenge (November 26th through January 2nd), increases our chances of winning $300,000 in prize money throughout the competition.
You can help NBCA win BIG this holiday season and together, we can continue to educate more people and save lives. This is an incredible opportunity and we are most grateful for your generosity and support.