{Go Red} Hearts For Fashion Show

Fashion
Every February Boston Scientific sponsors the Hearts for Fashion show as apart of the Go Red for Women expo at the Mall of America. The show allows survivors to strut their stuff down the Go Red for Women runway, all while putting a face to heart disease and stroke. Survivors are not the only ones strutting their stuff, the designs of local students who were inspired by heart health, survivors and the color red will also line the runway. This event allows the American Heart Association’s Go Red for Women campaign to educate the public about women’s heart health through fashion. What girl doesn’t love fashion, I know I do.

Last year I was invited to be apart of the Go Red for Women campaign which included posing for a billboard, gracing many bus stops around the metro, and being a part of a PSA commercial that was aired on channel 9 through out the month of February. I am not use to being in front of the camera, I am the quiet type that walks the capital halls, so it was a big change for me and I am glad that I did it.

This year I was invited to walk the runway in the Hearts for Fashion show. I have watched the show for many years and always thought it would be fun to be a model in the show. When the offer came I gladly accepted and waited for the day to arrive. My outfit was on loan from Macy’s Mall of America and Ginny did a great job at dressing me. I was a little bummed that I did not get to wear a red dress in the show, but its ok I got to rock a modern suit instead.

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I had to be at MOA by 8AM for makeup and hair. Our makeup and hair was done by the Minnesota School of Cosmetology students. The girls did a really great job with my updo and makeup, they made me feel like me but better. With hair and makeup in the bag it was time to get dressed. Jay was in charge of collecting my parents and bringing them to MOA for the show. Jay was successful and soon they arrived and Jay’s eyes lit up when he saw me all done up. That’s how I knew the girls did good. A ton of photos were taken and soon we were released to go down and watch part of the show.

I didn’t practice my walk. Being in heels made me nervous, I just said a little prayer and hoped for the best. Lucky for me I didn’t trip!!! That is a miracle in itself and I took on that runway like I was made for it! Yay! Go Me! That is until I looked over and saw my Daddy and Jay plus my Mama all teary eyed. It took everything in me to hold it together, if I see tears I start to tear up, so it was a miracle that i didn’t start crying too. Now Sherri she was the only one holding it together like a boss. Survival is more than the survivor, without my parents and Sherri who knows where I would be, they have been with me since day one of survivor-hood.

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Being in the fashion show was a lot of fun and I know Jay had a blast pulling all of the bobbi pins out of my hair. I think he pulled out close to 30 or so, it takes a lot of pins to tack my curly mop down.

{Affordable Care Act} D.C. Meet AJ

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There are moments where I have to pinch myself to make sure that I really am living this life. I went from survivor to advocate, to spokeswoman. Last Thursday I received an email from the American Heart Association’s National Advocacy office inviting me to Washington D.C. This just wasn’t any old regular invite, this this was an opportunity of a life time. I was invited to Washington D.C. by House Democratic Leader Nancy Pelosi. When Nancy Pelosi invites you to D.C., you go, YOU GO and I did just that.

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I went and I became a part of history. I was invited to DC to speak at a press conference celebrating the 5th anniversary of the Affordable Care Act. The conference was held on the Capital Steps and it was organized by Leader Pelosi and members of the Democratic Caucus. Together we celebrated the Act and the fact that is working for millions of Americans. I am just one of the millions of Americans who benefited from the Affordable Care Act.
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This was my moment to put a face to a cause. Words cannot describe the impact the Affordable Care Act has made on my life. As a Pulmonary Embolism / Stroke survivor I can no longer be denied coverage or be forced to pay more because of my medical history. In the eyes of the law I am equal to my healthy peers and because of this I am able to afford quality insurance and put my health first.

Speaking

Yes, I found myself struggling to choose between paying my bills or paying for the medical care that I needed. For 18 months I went without health insurance and for part of that time I was only making $12 an hour. My most expensive prescription was $287.00 a month and I tried skipping it for a while, that just turned into a very expensive disaster. No one should ever have to choose between life saving care and bills. I never for one thought I would ever be in that position, but at 28 I found myself there. I found myself struggling to stay a float and was ashamed that I could not afford the health care I desperately needed.

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Today I am no longer ashamed, I am empowered. I have an insurance card in my pocket and I owe it all to the Affordable Care Act. I no longer had to settle for a job, instead I got to hold out for the one I wanted. I no longer have to check the couch for spare change just to pick up my prescription. Instead I walk right into Target and pay only $20.00 for a brand name drug. I can afford to go to the doctor and I am now getting routine care. I can for the first time in a very long time, put my health first. Life is not worth living if you do not have your health.

{Thankful} 1 day out of 365

Giving thanks for one day out of three-sixty-five just seems plain old silly to me. I wake up each morning with a thankful surviving heart and give props when they are due.

I am thankful for:

The American Heart Association – Minnesota
Heart
Without the American Heart Association my Father and I would not be standing. Because of their dedication to a world without heart disease and stroke, we were saved. The AHA is lobbying for heart healthy policies, raising funds for life saving research, and giving all of us a chance at tomorrow. The American Heart Association #IsWhy. The AHA gave me a platform to share my story and by using my voice I am changing our tomorrow for the better.

Earlier in the year I was diagnosed with an autoimmune/auto inflammatory disease. I am sick with a disease that doesn’t even have a name. My immune system no longer has an off switch and my body has declared war on itself. Test showed that I had high C-Reactive Protein and with my family history I am destined for Congestive Heart Failure. I have a 95% chance of following in my Daddy’s footsteps. My Pulmonary Embolism and stroke were a fluke, but this, this was all ready written in the cards. I am not worried nor am I scared, because I know the American Heart Association is fighting for my tomorrow. They are raising funds for critical research that will one day save my life. And for that I am incredibly thankful.

“My Mama and Pete aka my Dad”

Photo by: Stephanie Ryan Photography

Photo by: Stephanie Ryan Photography


My Parents are my greatest cheerleaders. Together we faced the unknown, fought the good fight, and with faith in our hearts we saw a better day. My Father is a 13 year congestive heart failure survivor and my Mama is one tough cookie. She takes care of my dad, sets up his pills, drives him to the Mayo, and without her he would not be alive. She puts her needs aside to care for the man that fathered her daughters. My Mama does it without question, she is an extremely giving soul that doesn’t know how to quit. Because she cared, because she loves him, my Dad got to see his daughters graduate college, get married and divorced, he stood by my side as I recovered from a stroke, he said hello and goodbye to his first grandchild, and got to hold his second in his arms. Because of My Mama, my Daddy is living the life that dreams are made of.

Sophia

Photo by: Stephanie Ryan Photography

Photo by: Stephanie Ryan Photography


There are no words to describe my love for this little girl. I fell in love with Sophia the moment I laid eyes on her. Connected our souls are and she will always be a light in my life. Watching her grow and come into her own has been a great joy. Hearing her voice whisper into my ear, her I love yous, and her “Hi Auntie Mannies” never get old. Sophia has my heart and I have hers. Auntie is the greatest title I have ever been given and everything I do is for her healthy tomorrow.

Cullen aka The Muppet Like Dog

Photo by: Stephanie Ryan Photography

Photo by: Stephanie Ryan Photography


Those who say “a dog cannot bring you happiness,” have never owned a dog. This little white ball of muppet like fur has brought so much joy, love, and laughter into my life. Cullen has been my trusty little side kick, my confidant, my fashion critic, and mostly the best four legged friend a girl could ever ask for. He and I are as thick as thieves. Mama and Muppet together forever and ever.

Divorced Life
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Yes, I am thankful for my crazy Divorced Life that is a beautiful disaster that even I could never have imagined. Life, it didn’t pass me by, instead it was patiently waiting for me. Waiting for me to find my way and to come into my own. My life, it has been far from easy. I wouldn’t trade it for anything. Because in the end it is my beautiful story and no one else can live my words. No one else can love the way I do, fall flat like I do, and no one, no one can contain my passion for living like I do.

I have fallen in and out of love and said goodbye more times than I care to count. It seems that God needs my friends more than I do. They are now apart of the stars that I place my wishes on. All of the women who lost their lives due to complications from the Nuva Ring are the reason I do what I do, Because I know if they were given the chance they would gladly take my seat on earth and continue the good fight. I owe every moment of my messy divorced life to the four people who died so I could be the one to live another day.

To live another day on my never ending quest to find love. Love is a dream that I have been chasing. I want a second chance to prove to the world that I AmandaJean can have a successful marriage. For a little while Charlie made that dream come true. God he had other plans for him and I was left with a broken heart. I gave myself time, breathed in the loss, and looked to the stars. Those stars lit my way and I can finally say I have found someone who loves my kind of crazy. Who appreciates my honesty, my ability to live in the emotionally raw and one who is intrigued by my wit. For the first time in four years, I am truly happy. I feel like my old self and my heart is bursting with more joy than one soul can handle.

I am thankful for fate, for she has finally smiled upon me.

{Hearts On 22} Five Borrowed Years

Top right photo was taken one month after my PE and Stroke

Top right photo was taken one month after my PE and Stroke

I honestly cannot believe that it’s been five years. It seems just like yesterday when I set out to work oblivious to what this day would hold. I still remember what I wore and that I was upset because I forgot to buy creamer the night before. It was a free jeans day and I wore a gray cardigan with a white eyelet button down peasant style top and jeans paired with cranberry colored flats. It was also day #4 at my brand new job. I was busy learning the ins and outs of replevin work and didn’t have the time for inconveniences.

On Tuesday night I felt this excruciating pain rush through my body. I barely made it through the evening rush hour drive. I came home put my purse down, took some Tylenol and crawled into bed. Wednesday morning I was right as rain and went on about my day. On October 22, 2009 I woke up with a mild nagging pain in my chest. I didn’t think anything of it, figured I was coming down with a cold and brushed it off.

My body was screaming for help and I, I just ignored the signs. I had reached the Sun Ray shopping center, the pain was getting a little worse, still I brushed it off. A few miles down the road that nagging pain turned into what felt like a thousand knives cutting me at once. Breathing was proving to be difficult and my arm was going numb. I’d try to breathe deep, my lungs they fought back and I had to make the decision call mom, no not an option she will panic. Pull over, no you are afraid to be stuck on the side of the road. Oh look Lexington parkway, take the exit.
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The exit, I took it. To this day I have no idea how I made it to Woodwinds Health Campus in Woodbury MN. The only thing I remember is throwing the Prius into park and collapsing into the security guards arms. Some how by the grace of God I made it to safety. When I came to the ER staff ruled out a heart attack and a panic attack, labs were ordered and I apologized for taking up their time. The doctor thought I had an infection in my lungs and ordered an x-ray and labs. As he left the room he turned on his heel and asked “by chance are you on a birth control?” I quickly said yes and he explained what the d-dimer test.
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The d-dimer was ordered, my oxygen level was less than 50%, my heart was in sinus tachycardia and my blood pressure continued to climb. I, I was in rough shape. While on my way to x-ray the doctor shouted “where are you going with her? I canceled the x-ray.” I was feeling relieved and waited for him to tell me I had an infect and he was going to send me home. I didn’t get the news I wanted. With caring eyes he told me “the d-dimer came back glaringly positive we need to get you to CT ASAP. He quickly explained that the contrast die could prove deadly but the benefits out weighed the risk. I signed my name and into the scanner I went. They said it would take about 90 minutes for my results to come back.

I watched the clock and counted down the minutes. I could hear the phone ring, the doctor picked it up and said “shit! You have to be kidding, you are not!” Code blue was sounded and I heard a rush of feet come towards me. Within seconds every available hand was in he ER. He took my hand and said, “I am sorry AmandaJean you have a blood clot in your left lung that is blocking the main valve to your heart and your lung sacs have ruptured. Your body is not getting the oxygen it needs and you dear are going to be staying with us for a while.” My brain couldn’t comprehend how dire the situation was. My blood pressure went above 210, I told the nurse I felt woozy, one said it was just the pain meds, another looked at the monitors and said “the fuck it is, she is having a stroke,” he hit the panic button.

Clot busters were shot into my chest, thrombolytics and other medications were being pumped into both arms. I was alone, alone and fighting for my life. The ER doctor walked next to my bed as they were bringing me to the elevator bay. We stopped, he said AmandaJean do you know what’s down that hall? No I said. The morgue, I should be putting you on a slab instead of in a hospital bed. If you had been five minutes later your story would have been different, never ever forget that.
GoRed 2014
It took a few days for the gravity of what I had survived to sink in. Friends came and visited me, my parents and than husband stood by my side. My life became a series of injections, INR checks, scans, nerotherapy sessions and doctor visits. I was alive and that is what mattered. Almost dying 5 days before your birthday steals your innocence and changes your perspective on life.

I didn’t just survived, I thrived. The ultimate gift was given to me, not many people get a second go around. I treasure every moment of every day, because I know that if I were five minutes late my story would have ended with my ashes in an urn. Survivors rarely talk about the guilt that they feel. I walk this earth with a scarlet letter glued to my head and people tell me that I shouldn’t have a bad day, because I survived the worst day possible.

Yet in the quiet moments I feel guilty that I survived. In the past five years I have said goodbye to more friends than one soul can handle. I survived only to watch my son slip away, I took a seat at Adam’s funeral, wrote a eulogy for Connor, only to follow-up a few years later with a eulogy for Charlie, said a tearful thank you to Dr. Delahaunty, and held my friend Jilliann’s hand as we said goodbye to Trinity. I have been surrounded by so much death and heart ache. I can’t make heads or tails out of who lives and who dies, God definitely has the upper hand on that one.
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Hands I’ve got two and my knees are worn from praying. My scars are healed, my body is somewhat back to normal, yet my emotional scars remain. Emotional wounds are he hardest wounds to heal. They slowly disappear with time. Anger was replaced with hope and that hope gave me the strength to make a difference. The guilt it is a reminder that four people had to die so I could be the one out of five who survived. I live each day of this crazy life for them, its the only thing I can do to honor those who went to soon. I vowed to spend my days advocating for those who no longer can and that they would be more than their deaths. Their stories deserve to be told. In one sheer moment of disaster I found my passion. I found that I had a voice and that I had the strength to stand up for myself. I signed my name on the dotted line and became a plaintiff in a product liability lawsuit against Merck.
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The Nuva Ring took a lot of things away from me and on the same coin it gave me a life that even I couldn’t have imagine for myself. It takes a lot of guts to put yourself out there and share the most vulnerable moments of your life. Sharing my journey allows me to educate the public about the dangerous side affects of hormonal contraceptive. Sharing my story has allowed me to shape the view points of politicians and to propel heart healthy policies forward. I owe a lot to the American Heart Association, they took me under their wings and gave me a platform. That platform has allowed me to grow and come into my own as a survivor. I am not ashamed to say I had a Pulmonary Embolism and Stroke, I am more than those events, I am more than a survivor, I am and will always be a small town girl who set out to change the world.
large group Lobby day
The past five years have been a beautiful disaster and I am proud to claim it as my own. Because of quick action and research my life was saved. Every day the American Heart Association gives funds and encourages researches to tread unknown waters. Without the AHA we would not have CPR or advances in heart surgery, early stroke and heart attack detection. Research is why. Advocacy is why. Life is why. Second Chance is why. Without the AHA there would be no why in this world and we would have no hope for a heart healthy tomorrow.

I am incredibly thankful to my Woodwind’s care team, without them I never would have gotten to experience pregnancy followed by loss, then divorce, a little adventure followed by a whole lot of love and mostly without them I never would have gotten the chance to hold my niece. Without them my story would have ended at 26. Instead I got five beautiful borrowed years on this earth and I plan on borrowing a few more. Because life, its only just begun.common thread

{American Heart Association} _____________ is why.


The American Heart Association unveiled there new campaign earlier in the summer. The campaign is simple yet powerful. “Tell us your why.” Today I attended the American Heart Association’s “You’re The Cure Advocacy Summit” and one of the activities was to tell our “why.” We were given t-shirts and markers to write our why. I had so many reasons for my why yet only one would fit on the t-shirt.
2nd chance

2nd Chance is why.

On October 22, 2009 I got an early birthday present. It did not come in a box wrapped in pretty paper with a bow. It came on the heals of disaster, my future it looked bleak, but in one sheer moment I realized that I was still here. I was alive, thou in extreme pain and a little worse for wear, I was a live. I got LIFE for my 27th birthday. That is the greatest gift anyone could ever receive. A second chance to take on the world, to love, to laugh, to explore, but mostly a second chance to live life the way it is meant to be lived. I have been living on borrowed time, the good Lord above has given me five beautiful years and I plan on borrowing a few more. I am not done living. My life, it has only just begun.

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Photo by Stephanie Ryan Photography

Sophia is why.

So many young women have died from pulmonary embolisms, strokes, and heart disease. Those women were robbed of becoming Aunts and Mothers. I got a second chance and in that chance I was able to hold my buddy in my arms. Nothing brings me more joy than being an aunt. I love this little girl with all of my surviving heart and I will continue to fight for her healthy tomorrow.

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My Father is why.

12 years ago my father was only 50 years old when he was rushed to Saint Mary’s Hospital in Rochester Minnesota. He was dying, his heart was in Ventricular Fibrillation and Congestive Heart Failure. It didn’t look good and he was fighting for what little life he had left. Death, it was the only possibility. Yet with the expertise of the Mayo doctor’s he walked out of that hospital two weeks later. Yes, he walked out under his own power two weeks later. My father got a second chance at life. In the past 12 years he got a chance to see me graduate from college, a chance to walk me down the isle, and a chance to be the rock I needed when I was recovering from my PE and stroke. But mostly he will get to stand by my side as our plane touches down in Cambodia and watch me meet my child for the very first time.

Emma is why.

Emma Beaulieu was the first infant in Minnesota to receive a heart transplant. She was three months old when she got her new heart and sadly she passed away three years later due to complications of the common cold. Emma is why my family has been involved with the American Heart Association. Because someone dared to make a difference, she was given three years to live. Some may say that was a waste. I beg to differ, because of what they learned from Emma, thousands of children have been saved. Congenital Heart defects are no longer death sentences, they are mere stumbling blocks, and survival rates continue to sky rock it. All because of one little girl who went first.

Bazile is why.

My extremely great grand father Bazile Hudon Beaulieu was a voyager who sailed across the Atlantic, through the great lakes, and landed on the shores of Minnesota. He founded this great state that I call home. Its only fitting to name my future child after him. In her own right she is like a little voyager, crossing the globe to find her home in my arms. Bazile is out there and I cannot wait until the day I get on that plane and bring her home. Bazile is my why, I want her to grow up in a healthy world free of heart disease and stroke. Mostly I want her to grow up in a world where women are no longer being harmed by their hormonal contraceptives. I will be damned if Bazile ever has to endure my fate. Bazile is getting one hell of a fighter to call Mom. I will fight for her until my last breath.

GoRed 2014

TOMORROW is why.

I want to have a billion more tomorrows. A billion chances at seeing the sunrise and set. I want a billion nights under star filled skies and a billion bon fires by the shore. I want a tomorrow. I want to get married again. I want to build a tiny home (I am obsessed with them), have a family, travel the world, and mostly I want to secure a healthy tomorrow for all of us. That is my wish that every single one of us will have a billion tomorrows. Life is so uncertain and your tomorrows can be ripped from you in a blink of an eye. I am going to focus on living in the moment and not waste a precious drop of sweet sweet time.