{Survivorhood} Year Nine

Nine.

I can still remember exactly what I was wearing on the day my world broke. Gray cardigan, white button down peasant top, jeans, and cranberry ballet flats. The shoes, I still have them. They are worn and raggedy, I just can’t let them go. Those shoes carried me in the ER and they walked me out days later. Those shoes are a symbol that I survived the worst day possible.

Every day I am reminded that four had to die so I could be the one out of five who walked away. I live each day for those who no longer can. I live each day for the women who lost their lives to the Nuvaring. Those women are my battle cry and I will not rest until there are none. Those women have given me more strength than I ever thought possible.

I survived because God, he wasn’t done with me. God knew my strength before I did. God gave me a second chance and I have cherished each day to the fullest. Fate, she’s a funny one and I know that everything I have lived through was apart of her plan. That this plan isn’t mine and only Fate knows where I am going. I cling to every drop of borrowed time and thank God for every day I rise. For I know this second life of mine is an incredible gift.

On October 22, 2009 I made a choice. A choice to not be a victim. A choice to thrive and live a life worth telling. I want a life filled with incredible experiences and stories that will keep me company when I’m old. I made a choice to stand up and be a voice against the darkness. A voice to bring awareness to a cause and educate those around me about the side effects of hormonal contraceptives. My voice will not be silenced until there are none. I have work to do and I will not rest until there are none. One day there will be none and on that day I will take off my white hat and rest.

This past year was filled with heartache and joy. I became a mama to my 3rd sleeping son. Emmett James left this world before his feet ever touched my hands. I am grateful for the experience and I am thankful to be his mom. When sadness fades to joy life begins. I got to watch Sophia and Jack turn one year older. There faces bring joy to the darkness of the night. I am grateful that I survived and get to hear their little voices say “Auntie! Auntie! Auntie!” They are my world and I am there’s.

I spent my weekends traveling form place to place with my dad at my side. No matter the destination he was game. We went to Michigan’s Upper Peninsula; Mackinac Island; The Badlands; Mount Rushmore; Crazy Horse; Wyoming; Jeffer’s Petroglyphs; Milwaukee; Racine; Hayward; Effigy Mounds National Monument; Crowing Wing State Park; Door County; Washington Island; and the North Shore. This summer we traveled more than most people do in a lifetime. Much wine and booze was bought and we have memories to last us until the end of time.

My dad isn’t the only one who got in on the road trip fun. I traded my dad in for Jay! We made our usual pilgrimage to WI Dells and we ventured west to South Dakota and Wyoming. This year was the year of travel and my heart is happy. I am the trip planner in our family. I plan and Jay just comes along for the ride. That is what I love about him, he’s up for anything as long as I’m involved.

My heart she is thankful. Thankful that I got a second chance at this thing called life. This second chance taught me to live in the moment. Fate has taught me to let the little things slide and stand up for the big things. I have more hope and faith than most people. For I’ve seen God work. Long ago I stopped asking “why me,” instead I stand up and ask “why not me.” I am a firm believer that everything happens for a reason and God knows what he’s doing. Research, saved my life and it will continue to save the lives of others. We need to believe in research and fund research so that others can have my outcome. So that they too can have a chance at living in a beautiful disaster.

YEAR #9:

For the past nine years I’ve asked for motherhood. This year I am just asking to be HAPPY. Happy with myself. Happy with my work and life. I want to feel joy and give joy. I want to be that person whose happiness is addictive and strengthening. That beacon we flock to on a bad day and the one we laugh with on a good day. I simply want to be happy.

{Hearts on 22} National Stroke Awareness Month

On October 22, 2009 I almost died five days before my 27th Birthday. I found myself in the ER unable to breath with unbearable chest pain. A CT scan revealed a clot the size of a ten cent gum ball lodged in the valve that connects my left lung to my heart. My oxygen level was below 50%, my heart was in sinus tachycardia and I was fighting for my life. To make matters worse my blood pressure kept rising and suddenly I lost my words, the staff sprung into action, TPA was administered and my life was saved. I had survived a massive pulmonary embolism with infection and a stroke due to the third generation progesterone in my birth control, the Nuvaring.

At 26 Stroke wasn’t on my radar and until that day I had no clue what a pulmonary embolism was. Strokes happened to old people not young professionals. That day taught me that strokes can happen at any age and your risk is higher if you are taking hormonal contraceptives. My OBGYN never once mentioned that my birth control could possibly kill me, she just wrote the script, shoved it in my hand and went on her merry way.

I could have spent the past almost nine years in hiding. As in not telling a soul I had a stroke because well on the outside I look perfectly normal. I was lucky, I got the clot busters in time and I walked away unscathed. Many of my survivor counterparts are not so lucky, they have physical and mental impairments. Impairments that could have been prevented if they had received treatment in time. This haunts me, some days I wonder why I was the lucky one and on other days I say “why not me!?”

This life I lead is borrowed. I wish I could say it was perfect, but it’s not. I am living a perfectly imperfect life. This second chance is mine and mine alone to live. I made the choice to live my Stroke out loud. My story and willingness to fight this battle has landed me on billboards, fashion shows, tv commercials, news paper articles, magazine articles, and in DC. Oh the places your stroke will take you. Even I have to pause for a moment and think “holy shit AJ you’ve like made a difference!” A difference I have made, because what happened to me is 100% preventable.

That’s right what happened to me was 100% preventable. I had gone to the doctor a week prior with symptoms of a blood clot in my leg. The doctor told me to “drink more water and walk more.” One week later to the day I found myself in the ER fighting for my life. If only my doctor had listened to me. All the doctor had to do was order a d-dimer test. If that test had been ordered the doctor would have caught the blood clot before it found its way to my lung and brain. It’s been almost nine years and that still gets me the most, that this, pulmonary embolism and stroke of mine was 100% preventable.

{Hearts On 22} Rally For Research


Somewhere in this country a woman is experiencing the worst day of her life. She is in pain, she is scared, and she will never be the same. In the coming days, weeks, and months she will learn that her birth control was the cause of her worst day. That her birth control caused her stroke or heart attack or blood clot or pulmonary embolism. She knows it was her birth control because she survived. Many families never learn why their wife, mother, daughter, sister or friend suddenly died. They live their lives only knowing that she is simply gone.

Gone. If it were not for my fast acting care team, I would be resting in a little urn on a shelf. My mom literally came this close (shows fingers) to picking out my urn instead of my 27th Halloween themed birthday cake. I was lucky, I was the 1 out of 5 who survived a massive pulmonary embolism with infarction that lead to a stroke. Because of research I saw my 27th themed Halloween birthday cake, it had a jack o lantern on it and it was perfect. I survived my worst day possible.

I was weak, I felt cheated, and I was angry that my life was gone. I had to learn how to live in a new normal of Lovenox injections, INR draws, warfarin sodium, to many pills to count, doctors appointments and CT scans. I wasn't living the life of a 27 year old, I was living the life of someone much much older. Yet it was my life to live and I had one choice: "survive or give in." I chose to survive.

Survival is not perfect. This second chance I live is pretty fucking messy and hella awesome at the same time. I put on a red dress and never looked back. The American Heart Association gave me a platform to share my story, they put the voice back into the survivor and Now my story is saving lives. I meet women who come up to me and say I heard your story and I decided to talk to my doctor about my risks and what birth control is safe for me. That right there makes my little heart sing. I can't go back and change my story, but I can share mine to change someone else's story.

We know that my massive pulmonary embolism with infraction and stroke were caused by my hormonal contraceptive, but we don't know why. At the time I was healthy, I did not smoke, I wasn't over the age of 35, I wasn't over weight, yet it happened. Further testing showed that I was negative for Factor V along with a whole host of other genetic conditions that lead to clothing. I was genetically perfect, yet some how some way it happened to me.

If scientist can figure out why it happened to someone it shouldn't statistically happen to, we can stop it from happening in other women. In order to find that why, we need funds for research. The government is the largest financial contributor for medical research and if those funds get scraped my why goes out the window. The ability to save thousands upon thousands of lives goes up in smoke. You and I we can make a difference, reach out to your congressman & women and tell them that you support the funding of medical research. Come to the MN capital on Saturday @ 1:00PM central time and stand with us as we rally for medical research. Bring a poster, yell at the top of your lungs and make a difference, help us secure our healthy tomorrows.

Mostly let's face it, without research we are dead in the water, our doctors are only as good as the researchers who stand behind them and without them we have nothing.

{Go Red For Women} I can have bad days too!? 

  There is no perfect survival story and there is no guidebook called “how to live your second chance.” Life is messy, it’s a beautiful disaster. Some survivors chose to curl up in a ball and wish the world away. Others are filled with anger and they become bitter with age. Some simply give up before they give them selves a chance to rise. Then there are the ones like me, a special breed who doesn’t deal with the mental/ emotional aspect of what happened, yet they want to change the world. 

When you survive the doctors do a really good job at taking care of your body. Your mind and soul are left with you to repair, as they do not have time for that. They simply cannot mend what they cannot see. 

Trauma leaves scars behind. Pulmonary Embolisims and Strokes take pieces of your soul and if you survive they leave you with survivors guilt. I’ve spent more days than I can count wondering why me and why not her? Why am I allowed to take a seat at the table while so many women are asked to leave? Fate she amazes me, maybe she saw something in me that I didn’t see in myself. Maybe she knew that I would grow in a moment of darkness. 

I never looked at my PE and stroke as a tramatic event, for me it was a horrible event that I wanted to stuff in my pocket. I wanted to get back to normal as soon as possible, it never crossed my mind that I needed to deal with the mental and emotional side of survivorhood. In my eyes I was doing a really good job at running from my emotions and memories. My back pocket held my PE, the Stroke, Lucia, Divorce, and Charlie. As long as they stayed in my back pocket I was safe. I believed whole heartedly in the old adage “out of sight, out of mind.” 

A soul can only carry so much disaster before its seems break. My seems burst long ago, I was living on patches, throwing myself into my work and crying my tears into the muppet like dogs fur. When I turned 32, I knew something had to give, I thought “therapy is only for the crazies and for those who can’t get their fucking little ducks in a row.” My ducks were lined up in size order, my exterior was iron clad, and crazy, ha I probably am but hey that’s ok who isn’t a little off these days.

Research, I checked the health partners sight to see what my plan covered,Watercourse is where I landed. Turns out they were right around the corner from my apartment, I had driven by their office for years. I slowly dialed there number, a nice lady answered, she asked if I had a couple minutes, I said yes. I unfolded the items hidden in my back pocket, she repeatedly said “you poor thing,” and promised to match me with a therapist. I was sceptical and hesitant, a few days later they called, her name was Emily. My first appointment was scheduled. I was ashamed to tell my friends “hey I’m gonna go see a therapist so I can learn how to deal with my shit.” 

Walking into Watercourse I was in denial and skeptical about therapy. Mostly I was afraid she would tell me “you are insane, here is the name of a psychiatrist.” No one wants to be told they are crazy. Emily didn’t tell me I was crazy, instead she asked me question after question and with each answer the items in my back pocket unfolded into the room. She started to build a picture of my past and my survival mechanism “put it in a box and deal with it another day.” 

Bottling up emotions is not the answer. Eventually the top is going to fly off and you will end up in a puddle of tears on your appartment floor. Trust me I know about this kind of thing. Emily understood the road I was walking on and through guided conversation we traced each step. We discussed how I don’t always have to be perfect, she told me “it’s ok for you to have bad days too.” Emily was the first person in 6 years to tell me that it is ok to have bad days or off days or any kind of day I want. Everyone else acted like I shouldn’t complain or have a bad day, instead I should be grateful that I am alive. 

I am grateful to be alive, I know that a few minutes could have given me a different ending. I am a stubborn survivor, help is something I rarely ask for. In my mind asking for help is a weakness and shows your flaws. Emily made me realize that we all need a little help and that people want to be needed. I am so used to being the helper that I put my own needs aside. I do everything on my own, including driving myself to the ER, because I don’t want to inconvenience anyone or ruin their day. Which I wouldn’t recommend you do, ask for help, don’t be like me. Then again I have turned a new leaf and have learned its ok to ask for help. Jay can attest to this as he has taken me to the ER about 3 times now and carries heavy things for me. I am still not great at it, but I am learning that it’s ok to not always be the helper. 

I’ve been seeing Emily for over a year now and she has helped me immensely. Not only have we delt with survivorhood but we delt with Lucia too. Everyone says “oh you will have more children,” without knowing those words cut through me like a knife. A grieving mother doesn’t want those words, she wants her children. When a plus sign showed up in May I was terrified and did not want to get to attached to the contents of my uterus. She let me know that these feelings were perfectly ok and that with time they will fade. That I didn’t have to be afraid of an ultrasound machine and that I have a right to demand that we handle this pregnancy my way. 

That + sign slowly turned into an empty sac, I was crushed. I felt defeated that my rainbow eluded me. Emily helped me deal with my emotions and fears when it was determined that a D&C was the best course of action. Without her help I probably would never have gone through with it. We talked about the procedure and that it was ok for me to speak up if I didn’t like something or if something felt off, after all it is my uterus. I did my research and found a doctor who understood what I had gone through and he promised he would take every precaution he could to protect my uterus. He did just that and he said “I have no doubt that you will carry a baby.” Those are the only words I needed to hear, that I can have babies too.

A perfect storm, the past 6 almost 7 years has been waves of disaster. Between each wave I found calm and enjoyed the beauty in the silence before the next one came crashing down on me. I was sailing in a beautiful disaster. My boat on the outside her haul was perfect, but on the inside my engine was slowing burning out. Therapy helped me really examin each wave, to realize that there was nothing I could have done to avoid them and we cannot simply see in to the future. If I did manage to avoid each wave my life would be drastically different and I wouldn’t be me. 

The biggest lesson I learned is this: it’s ok to seek out a therapist. Sometimes one goes through so much that she needs another soul to help her deal with it. I had no idea where this therapy journey would take me, I just went in with a semi closed mind and came out stronger than ever. The doctors they fixed my heart and lungs, but Emily she mended the one thing they couldn’t fix, she mended my soul. 

We are all in this together. 

Mental health is often overlooked when it comes to heart and stroke patients. So many doctors only concentrate on the physical and leave their patients to struggle through the why mes, the what ifs, and other questions that plague survivorhood. The thing is we do not have to go it alone talk to your doctor, let then know about your struggles. Because one’s mental health plays a huge part in their  recovery. If your mind is not in the game, then your heart surely won’t follow. 

To learn more about  Watercourse please visit: Watercourse Counseling 

{Affordable Care Act} D.C. Meet AJ

DC4
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.

DC9

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.
DC7

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.

DC5

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.
2nd chance
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.
heart on the hill
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.
go red4

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.

pete and me

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.

{Women’s Health} Birth Control: Heroine or Foe?

Birth controlAll we are hearing about is the positive stories. About how birth control has revolutionized and changed the lives of women. What about the other side of the coin? Is it really as great as they claim? Is it really a miracle pill? An article published in Women’s Health magazine states that there are 7 benefits besides the obvious. http://www.womenshealthmag.com/health/birth-control-benefits I was first put on the pill in the spring of 2005 to regulate my monthly cycle. I had suffered years of (sorry over share) heavy bleeding and extremely short periods. The hormones in the pill didn’t seem to help and the doctor suggested that I try the Ortho Evra patch, I was in love and it worked. It worked so well that I used the patch from August 2005 to December of 2008. The bad part about the patch was that it hurt like hell when you pulled it off and it left glue residue behind. Which I racked up as minor annoyances and focused on the benefits.

The benefit was that the patch made my pre-menopausal body into the body of a normal 20 something. In December 2008 I got brave and asked about the Nuva ring, since I was planning on having kids within the next 3 years the doctor thought it would be a great option. So I gave it a whirl and for the most part it did its job. Up until October 2009 I was a believer, I thought the Nuva Ring was a gift from the heavens, until the moment I found myself standing at death’s door.

On October 22, 2009 the Nuva Ring almost took my life. I was admitted to the ER with an oxygen level of 40% and my heart was in sinus tachycardia, I was fading fast and the ER dr paused and asked “are you on birth control?” I said yes and he ordered a d-dime test which lead to a CT scan that revealed the massive blood clot that was stuck in the main valve leading from my left long to my heart and the lower half of my left lung had collapsed. As soon as the clot was found the life saving efforts began, I ended up having a stroke right in the ER, it’s probably the best place to be if you are having a stroke. I was only 26 and this, this whole thing happened 5 days before my 27th birthday. I spent more days in the hospital than I care to count and it took me 1 year to recover fully. My life became a cycle of lovenox injections, INR checks, pulmonology visits, CT scan, blood tests, therapy, and a mountain of medical debt. On the bright side I got pregnant 6 months after my PE/Stroke, it wasn’t ideal and I was considered a very high risk, sadly that joy was short-lived and my son left this world before his feet even touched the ground. After his death I learned that he will be the one and only child I will carry.

It took me even longer to come to terms with the fact I will never be able to have a child of my own. I spent thousands of dollars on 2nd, 3rd, 4th and 5th opinions, at the end of the day the facts were still the same. I made a choice, I put faith in our government and I believed that I was doing the best thing for my health, in the end my hormonal contraceptive took my health and left me infertile. My body no longer makes the hormones it so desperately needs and because of the blood clot I can never be on hormonal contraceptives of hormone therapy again. Nuva Ring took my ability to carry a child away from me and for that I will no longer be able to say that birth control revolutionized woman’s health.

Recent studies have shown that todays birth control pills may double a woman’s risk of blood clots, pulmonary embolism, and strokes. According to a WebMD article published in October 2011,

Being on the newest kinds of pills, which contain the progestin hormones drospirenone, desogestrel, or gestodene along with estrogen, doubled the risk again, making it six to seven times as high as women who weren’t using hormonal forms of birth control. Still, on average, about 10 out of 10,000 women taking newer kinds of birth control pills had venous thromboembolism in a year’s time. Although that’s a serious increase, it is still only half as high as the risk of blood clots seen in women who are pregnant or who have recently had a baby.

Per drugwatch.com, third and fourth-generation progestin have been linked to increased risk of deep vein thrombosis (DVT) (blood clots) and pulmonary embolism (PE) (blood clots in the lungs). In addition, the risk of heart attack and stroke is also increased. These complications can lead to death. Other popular contraceptives like Orthra Evra and Yaz/Yasmin also have been associated with blood clot risks. Yaz/Yasmin, which uses a fourth-generation progestin, has been associated with a 74 percent increase of developing blood clots.

Whoa that’s some really great information and is truly something women should know about. Over the past 5 years I have crisscrossed the country speaking to and meeting a lot of awesome ladies. Many have told me that they never knew their birth control carried a risk of blood clots and even in rare cases death. It hurts my soul that women do not know about the risk of blood clots, I too was blinded and had no clue that my birth control could cause blood clots, that was until I saw the fluorescent lights of the ER bay. In that sheer moment of disaster my passion was born, my mission became clear and I set out to take on the world. I lawyered up and found my voice.

My life will never be the same again. I no longer dream of looking at my own flesh and blood. Instead I dream of my “gotcha day” and know that somewhere in Asia there is a child waiting for me, somehow that makes this whole situation all right.

I ask you to do only one thing, the next time you insert the ring, pop the pill, or pony up for the shot, think of me and all of my survivor sisters. Just maybe in that moment you will remember to ask your doctor “so what are my risks, you know of possibly developing a blood clot?

To Learn More Please visit:

Drug Watch: http://www.drugwatch.com/nuvaring/

WebMD: http://www.webmd.com/sex/birth-control/news/20111026/newer-birth-control-pills-may-double-blood-clot-risk

http://www.npr.org/blogs/health/2014/02/09/273145327/nuvaring-contraceptive-settlement-leaves-women-weighing-risks

Cosmopolitan Magazine: http://www.cosmopolitan.com/celebrity/exclusive/blood-clots-young-women

Saint Louis Today: http://www.stltoday.com/business/local/fda-approved-nuvaring-despite-experts-safety-concerns/article_9994f863-f5cb-58d7-b33a-ce519e3dd486.html

Women’s Health Magazine: http://www.womenshealthmag.com/health/nuvaring

http://www.huffingtonpost.com/2013/12/18/nuvaring-blood-clots_n_4461429.html

{Hearts on 22} Love With All of Your Heart

Sophia and featherChristmas is when I miss Charlie the most. Mostly because he got cheated. Cheated out of meeting Sophia. He was anticipating her arrival and received status updates on the progress of her birth. A trial kept him in New York and he couldn’t wait to hang up his traveling suit and snuggle his niece in his arms. Charlie never got to see her smile, hear her laughter or feel her tiny hand in his. Sophia never got to meet the man who dreamed of taking her to Paris and who would have spoiled her beyond her wildest imagination. Charlie died loving the tiny girl he never got to meet.

As I sit back and reflect I can’t help but to think about all of the people who have never laid eyes on their niece or nephew. Sure deadly drunk driving accidents stick in our minds. After all one drunk driver took Charlie an 4 other people out on a wintry Valentine’s Day. That was one moment in time, yet in that moment hundreds of women lost their lives to heart disease and stroke. Hundreds more died that day from a Pulmonary Embolisms or other hormonal contraceptive related side effect. Those lives never make the news, they just fade quietly into the timelines of history.

If it were not for my care team I would have joined the fading time line. I would have been another casualty not a news worthy story. There isn’t a day that goes by where I do not thank God for keeping me on this earth. For answering my silent prayer and giving me the strength to fight. For giving me the strength to stand up and shout my story from the roof tops. With each word spoken I began to heal my broken heart, I penned my name on a legal services agreement and became a plaintiff in the Multidistrict Litigation against Merck. I put myself out there in hopes that I could save one woman from enduring my hell. I love with all of my heart and in a sheer moment of utter disaster my passion was born.

My purpose is clear “educate those around me about the dangers of hormonal contraceptives, blood clots, stroke and pulmonary embolism warning signs.” I will not rest until the Nuva Ring is pulled from he market and until doctors properly inform their patients of the risk associated with the use of hormonal contraceptives. Charlie was the one who pushed me to share my story with the world. He took up my mission and would stand in the wings watching me with tears in his eyes as I brought tears to the audience. I am alive today because I listed to my heart.

When Charlie died my heart was broken and it healed each time I held our niece in my arms. Each time I heard her laughter, held her tiny hand in mine, and listen to her whisper Auntie” for the first time. To think the Nuva Ring almost robbed me of those moments. My birth control almost cheated me out of being an aunt. The Nuva Ring almost claimed my life and it changed me in more ways than I could ever explain. However it will never ever stop me from loving Sophia with all of my surviving heart. Sophia will grow up with the notion that she is one lucky little girl. Because she could be holding a picture of the woman she calls Auntie. Instead she gets to hold her aunties hand and play. She is lucky because God allowed her Aunt to be the 1 out of 5 who got to walk away from a massive pulmonary embolism on October 22, 2009.

As I watch Sophia unwrap her gifts I will be thinking about all of my sisters who lost the battle. About all of those who would gladly take my seat at the table and those who are fighting with all of their hearts. Families will gather and thousands of children will hear stories about the women they never got to meet. Heart disease, strokes, and pulmonary embolisms are taking to many aunties out of the equation. To many children are walking in memory of the woman they never got to call “Auntie” and never got to love with all of their hearts.