{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
Image (4)
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.

{Divorced Life} Emotions In My Pocket

IMG_5539.JPG
The above quote has kept me going on my toughest days. At the end of the day we are all just little nuts trying to hold our ground. What we do with that ground is what matters. What matters is that we hold steady in the winds of change and stay true to who we are when the storms end.

My life has been anything but easy and there are moments where I look up and say “why me?” I didn’t choose this life, it chose me. I am the human Bermuda Triangle and I always brace myself for hurricanes. I have built up walls to hide the hurt and to keep people out. My heart it’s been broken and patched a time or two. I am afraid that if I put it out there it will get sucked right back into the triangle.

Survivor, that’s a term I hear over and over again. I want to be more than a survivor. I want to be more than a grieving mother, friend and fiancé. I want to be more than broken. Broken is what people see when they look at me. I am strong and mighty on the outside, but on the inside its a different story. I live with one foot in the now and one in the past. Emotions, I am not good at dealing with them. I tuck them in my back pocket and march on.

I cannot out run my emotions, or the heart ache, or the fact that I survived, and definitely not my past. In order to move on I need to face the very things that made me who I am. I need to embrace the very things that terrify me and to realize that I too am human. I, I need to face my shit and deal with my neatly pocketed emotions.

When I deal with the past, face the ugly, and own my shit I will be able to face myself. I want to have healthy long lasting relationships. I want to actually connect with a man on a deep you know all my secrets kind of level, and to stop pushing my dearest friends away when I feel they are to close.

Year 32 is going to be the year of been there, done that, and I owned my shit. It’s not going to be easy, yet I am not scared. My family and friends are cheering me on and all of them think owning my shit is a good idea.

After all in five short years I had a stroke, lost a child, got a divorce, lost friends, fell in love, lost my fiancé, got sick, and yea the list goes on………. It’s time to face all of those things and to deal with the emotions of the past. I am finally ready to face what’s in my back pocket and mostly I am ready to face myself.

{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.
3365
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.

tent5

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.

{PERSPECTIVE} 10 Years of Have Bear Will Travel

10 yearsTen years ago today I boarded a plane with 67 strangers bound for Glasgow Scotland. The only thing I knew was “I’m going to Scotland and will live in a palace.” Everything else was left up to fate. That trip lead me to start havebearwilltravel.com. It was my attempt to stay connected to friends and family back home. I wanted a place where I could share my adventures in real-time. Scotland was only the beginning, it was my starting point to an amazing adventure.

I got to travel Europe, attend the Edinburgh Tattoo, saw the Queen at the Highland games, and there is nothing like spotting a hairy coo in your front yard. I went looking for Nessie, but came up empty-handed, pub crawls, yea I’ve gotta few under my belt, art was a plenty, ghosts were all around, the underground can’t be beat, Rosslyn Chapel is way prettier in person, and if you listen you just might hear the footsteps of giants. I was an intern with the New Scottish Parliament, they thought it would be highly entertaining for me to give tours of the building to school children and tack stacks of papers.

Scotland truly was one hell of an adventure and I now have a place to call “Home” in the Midlothians. Once I returned home I continued to blog about my adventures and encouraged others to step out side of their comfort zones. Funny thing, little did I know that this blog would see me through thick and thin. It has been my outlet to the world, a place for me to gain perspective, encourage others, and a place for me to write my story.

Looking back I did a lot of incredibly amazing shit, so amazing that I have to stop and think “yea you actually did that!” Ten years ago I had no idea where life would take me or what the future would hold. I am a firm believer that everything should be left up to fate. Fate will never fail us and as long as we believe, she will come through. I’ve been married, became a step mom, had a pulmonary embolism and a stroke, became a mama, got a divorce, quit my job, found my voice, fell in love, said good-bye, and hello.

I am literally in awe of my life. I have walked the beaches of Sardinia, stood on Mount Tibidabo, sailed the canals of Venice, climbed the pyramids of Egypt, zip corded through the jungles of Belize, set sail on the high seas, collected sea shells in Mexico, panned for gold in Alaska, and shopped in Morocco. I have stood on three of the seven continents and hopefully will see the remaining four before I die. My soul needs to travel this world and as long as I am able I will always choose GO.

Go? Alfred who is now a very ratty teddy bear still goes wherever I go. He is after all the “bear” in Have Bear Will Travel. That ratty old teddy bear has seen me through the good, the bad, the ugly, and the down right hilarious moments of my life. We never grow up, we just tuck our teddy into our suit cases and no one is none the wiser. I will carry that ratty teddy bear with me until the day I die.

If I could go back 10 years I will tell my 21-year-old self to enjoy the journey and to live in the moment. Moments make us who we are, without them we are books with blank pages. I would tell her to hold on tight because you are going to have more potholes than smooth pavement. That life can be cruel and unfair. That she will endure heartache, turmoil, and fight for her life, only to say goodbye to a son who never walked the earth. Mostly I would tell her” “You are stronger than you could ever imagine and to not worry about law school, you will change the world without a law degree.”

{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

{MN Heart Walk 2014} Why Will YOU Walk?

This Saturday thousands will descend on Target Filed, not for a Twins Game, but to walk for a purpose. To walk in memory of a loved one, in honor of a survivor, for themselves, and to show their support for others. They will walk on behalf of the American Heart Association to raise awareness and funds to stop the number one killer of all Americans. Minnesota is home to the largest Heart Walk in the country and words cannot describe how moving it is to see thousands of people walking for a better day. The MN Heart Walk means I get to put on my survivor shoes and walk for those who have touched my life.

I walk for Emma, she was the first infant in the state of Minnesota to receive a heart transplant. Sadly she died 3 years later due to complications of the common cold. Thou her life was short, she made a huge impact on pediatric cardiology. What they learned in those three short years is helping save thousands of babies each and every day. Emma may be gone from this world, but she will never be forgotten. Since her passing Minnesota has become a leader in pediatric cardiology and we have a tiny little girl to thank for that. I walk because Emma never got to grow up, she never got to graduate from high school, go to college, travel the world, and because her sister Chloe got cheated out of having a best friend.

Ice Cave 16My Father Greg is my best friend, psychologist, sounding board, and my compass. No matter where I go in this world I always manage to find my way back home. I walk because God gave my father a second chance. Twelve years ago I was a freshman in college when I got the call that he was fighting for his life. His body was weak, his heart was sick, yet there was a small ray of hope. Knowing that he was at the Mayo brought us hope, they did not give up and they put this broken man back together again. They fixed his heart and 10 years later he got to say hello to his first granddaughter. Research saved his life and it will continue to save the lives of others. Without research we have no hope.

Hope is what keeps me a float on bad days. October 22, 2009 was one of the worst days of my life. It was the day I became the very survivor I was advocating for. It’s still hard for me to believe that my hormonal contraceptive device almost took my life. I drove myself to the ER with sever chest pain, shortness of breath, and a whole other mess of complications. They quickly ruled out a heart attack, yet they knew something was terribly wrong. The ER Doctor explained it was most likely an infection in my lungs and that I would be out of there in no time. For some reason unbeknownst to me he stopped in the doorway turned around and asked me “by chance are you on a birth control?” I quickly replied yes and he asked the nurse to order a d-dime test. I was being wheeled to x-ray when he stopped the nurse and told her to bring me back. I will never forget the look on his face and the fear in his eyes as he explained that the d-dime test came back positive. I got a CT-Scan and within 30 minutes a code blue was issued.

_MG_2225 I was in serious trouble, a blood clot in my left lung was blocking the main valve to my heart. I was in sinus tachycardia, my oxygen level was falling and my blood pressure was rising. In laymen’s terms “I was fading fast.” Clot busters were administered and my stroke was stopped in its tracks. The highest dose of Heparin was administered and I would be staying a while. The ER Dr. walked with us as they rolled me to the elevator bay. He took one look at me and said “remember for as long as you live, that you should be going down there, that’s the morgue and not upstairs. Very very few people survive this. Remember that!” I walk because I got to blow the candles out on my 27th Halloween themed birthday cake.

Research has allowed me to live a vibrant life and it has given me five borrowed years on this earth. In those five years I said goodbye to my son, stepped out of a loveless marriage, moved to uptown, adopted a muppet like dog, fell in love, became an aunt, found a job that I love, but mostly I shared my story and found myself. None of the fore mentioned would have been possible if it were not for the life saving research that is funded by the American Heart Association. I walk because their research saved me.

{Survival} Into The Woods

imageIt seems that bad news and rainy days always collide. It was raining the morning I found out I had a massive blood clot in my lung and the rain it poured down around me on the day I found out my son had left this world. I looked past the rain on Thursday, I thought it was just a coincidence and kept my spirits high as I waited for the nurse to call me back.

The nurse, she was warm as always. We joked that I needed my own parking spot and coffee cup since the clinic has become my second home. I’ve been to the doctor every week since March 21st. That’s a lot of appointments, scans, and biopsies.

I waited for the doctor, the rain continued to fall and I still held onto hope. Hope that this was all for nothing and I would walk away with a prescription for an antibiotic. I didn’t get that prescription, my heart sunk when I saw her face.

The words they didn’t make sense, I asked her to back the little bus up and to speak to me in regular people terms. Those terms cut through my heart like a knife. I was not out of the woods. I am in deep and I will need to walk past a few more flying monkeys before I see the sun.

The doctor very calmly told me “they found a small number of atypical cells in your lymph node biopsy. This, this is not something to tuck away for another day. You have to deal with it now.” Her eyes told me I was in trouble and that time was slipping away. I had no other option than to deal with this head on. I was quickly whisked away to Paula who scheduled a consult for Monday with a surgical oncologist to go over my options.

Options are all I have right now.
And I am clinging to the fact that they only found a small amount of atypical cells. I pray to God that we caught it early and that I will be out of the woods sooner than later.

Everything in this moment is in the hands of fate. Only she knows if I will walk out of the woods without struggle. Only she knows what will come and I have to believe that all of this will one day make sense.

{Collateral Damage} Merck Settles for $100million in NuvaRing Injury Case

NuvaringLast night when I got home from work I pulled a large white envelope out of my mailbox. I didn’t give it much thought, I let the muppet like dog out to pee, and when we came in I tossed the envelope on the table. I went about my routine, bracelet in the clam shell, sweats replaced my dress pants, and I fed the dog. Mundane I know, yet as I kneelt down to grab the muppet’s bowel the large envelope caught my eye.

It’s a logo that I’ve seen dozens of times, normally it rested on smaller envelopes, never a large one. I quickly dumped food in the muppet’s bowel and grabbed the envelope. I ripped it open and read “After more than five years of hard-fought and difficult litigation, Merck/Organon USA Inc. has agreed to a Settlement Program to resolve the NuvaRing claims. I read that sentence a dozen times, it didn’t sink in, so I took to Google. The NY Times, The Huffington Post, and so many other media outlets validated what my letter said. I needed validation even thou the settlement was laid out in black and white before me, I needed someone else to tell me that I wasn’t dreaming.

To be honest I never thought I would see this day. I never thought Merck would ever come to the table. Yet they have, Merck, maker of the NuvaRing, says it will pay out $100 million to settle thousands of liability lawsuits from women who say they were harmed by using the product. The settlement was offered to about 3,800 women who have filed lawsuits in federal and state courts. In a statement Friday, the company said: “We stand behind the research that supported the approval of NuvaRing, and our continued work to monitor the safety of the medicine.” The above statement falls on deaf ears, I am 1 out of 3,800 I will go to my grave claiming that the NuvaRing turned my world upside down and injured me. I know in my heart that the NuvaRing is bad news bears, however in the eyes of Merck I am just a casualty, I am the collateral damage they planned for, and I will be nothing more to them.

Tears are still falling even as I write this. Sure I am angry just like everyone else, however I know it makes no sense to beat a dead horse. We wore the white hat, we fought the good fight, yet in the end it wasn’t enough. $100 million seems like pennies compared to the amount Merck’s pockets hold. However this is the only offer and if 95% of women do not opt in, we risk losing it all. I never went into this to become rich, I wanted to stand up for myself and to prevent other women from enduring my fate.

I never had a number in mind, because Merck can never give me back what I want. No one has the power to turn back time and undo the wrongs. Then again on the same coin, I wouldn’t trade what happened to me. The NuvaRing was my sling shot, in a moment of sheer disaster my passion was born. I could have been just another cup of ashes in an urn, instead of an urn I got to see my 27th themed Halloween birthday cake. Almost dying 5 days before your birthday changes your perspective.

Merck brought the NuvaRing into my life, I chose to use it, but I did not chose to have it almost kill me. In all honesty I had no idea that the NuvaRing could cause thrombotic events. Hell I didn’t even know what a pulmonary embolism was until the exact moment I was diagnosed. In that moment my life was changed forever, I lost my sense of youth and was thrown in to survival mode. It looked bleak, my clot sat in a shitty spot and my lungs were dying, yet I pulled through. Because that is what I do. I operate best in a crisis, mainly because I just keep on keeping on and throw caution to the wind.

My lung has healed, my heart is strong, yet I am empty inside. Empty because of complications due to my pulmonary embolism I can never have children. To be honest I went on the NuvaRing in an attempt to regulate my cycle in hopes to get my hormones in order so that I could become pregnant. A lot of my friends went on it, they got babies and I got a blood clot. I got the shitty hand while they were dealt the motherhood card. I can never be on hormonal contraceptives or under go fertility treatments because I now have an increased risk of blood clots. If by the grace of God I were somehow able to conceive I would need to be put on blood thinners as soon as possible. This in its self is a risky decision, because I run the chance of giving birth to a child who is anticoagulant dependent. Like I said the risks are far to great and at the end of the day I must play the cards I have.

I want more than anything to have a child of my own. Merck will never be able to restore my ability to have children, they will never be able to make me whole. My heart aches when I hold a new born, I feel that tug, yet I know it was never meant to be. The NuvaRing crushed my dreams, I will never know what its like to carry a child and I will never get to hold a baby of my own. This, this is something Merck cannot put a price tag on. They just chalk it up to collateral damage and promise to monitor the product.

In there eyes I am nothing more than collateral damage, my quality of life means nothing to them, my struggles are mine and mine alone. The only thing they care about are the profits that the NuvaRing rakes in, so what if it damages a woman and crushes her dreams of motherhood. For every victim there is another woman to take her place in the pharmacy line.

If you would like to read more about the NuvaRing Settlement Please visit the following:

Birth Control And Blood Clots: Women Still Weighing The Risks http://n.pr/1dvY3OZ

Federal judge in St. Louis endorses $100 million settlement offer for NuvaRing cases : Business http://bit.ly/1h71yk2

Merck To Pay $100 Million In NuvaRing Settlement http://huff.to/1g2BAxr

Merck to pay $100 million in NuvaRing contraceptive settlement http://reut.rs/1jkdWAn

{Hearts on 22} Why I Go RED

Left: 2009 /  Right 2013  Looking back and celebrating 4 years of Survival

Left: 2009 / Right 2013 Looking back and celebrating 4 years of Survival

On October 14, 2009 I had my annual check up and birth control renewal appointment. My Doctor asked me if I had any concerns. I said yes. “Yes I do, I have this incredible pain in my leg and it won’t go away. My leg is deep red in spots and I am having head aches.” The doctor said and I quote “oh you just need to exercise and drink more water. You will be fine.”

October 22, 2009, 7:00am I was driving through rush hour traffic when my chest started hurting. At first it was just annoying and I thought “oh I will just take some Tylenol when I get to work. It’s nothing.” The pain kept on getting worse and worse, my heart started racing, at this point I could barely breath. Again I though “I will make it to work, take Tylenol and I will be fine.” I kept on driving. My situation wasn’t improving, my arms were starting to feel numb, I was becoming light headed. I thought to my self “should I call my mom. No, don’t do that she will panic. Should I pull over and dial 911? No, don’t do that you don’t want to be stuck on the side of the road. Oh look Lexington parkway. Take the exit.”

I did take that exit and somehow by the grace of God I drove myself to the hospital in Woodbury. The last thing I remember is seeing the security guard hold out his arm and I collapsed. I woke up to a nurse telling me “I can either cut your clothes off or you can help me take them off.” The staff had all ready hooked me up to monitors and an EKG machine.

The doctor came in and said “well we know you are not having a heart attack but something is wrong. I think you might have an infection in your lung. Well take an X-ray and get you some meds and you will be out of here in no time.” Ok I said. Then he stopped turned around and said “are you on birth control.” Yes I said. He ordered more tests.

My heart had been in sinus tachycardia for over an hour, my oxygen level was below 40 and I was fading fast. The D-dime test came back positive and a CT scan was done. A blood clot the size of a 10 cent gum ball was blocking the main valve to my heart and my body was being starved of oxygen. Within minutes of this discovery, I had a stroke.

The ER staff was kicked into high gear and the life saving efforts began. Clot busters were injected, they gave me the highest possible dose of Heprin, and my life was saved.

But what gets me is this “this all could have been prevented if my OBGYN had truly listened to me, she could have ordered the d-dime test and the clot would have been found and it would never have traveled to my lungs.” I almost died 5 days before my 27th birthday. I got the best gift in 2009 and that was my life.

So please listen to your heart and mostly your gut. If something doesn’t feel right keep on pushing until you find the one doctor who will listen to you. Don’t end up like me, I learned the hard way. Now I never take a doctors word at face value and I ask questions.

One moment changed everything, I was robbed of my youth and now I am going RED because no woman deserves to fight alone.