Elissa's Voice

Elissa, a reader from St. Paul, MN, found out about my blog from the American Heart Association Go Red for Women campaign. She's the reason all my hard work is worth it!  At 28 years old, Elissa was diagnosed with heart failure for the second time.  Today she's searching for strength.  Please open your hearts and send her all your healing energy and strength.  Below is Elissa's voice.

Gratitude

If you Google the word gratitude, you find an endless explanation of its meaning. 

It's a powerful word.

One that I've learned to love.

Ten years ago, when I was 18 years old, I was the typical girl.  Fresh out of high school, engaged to be married to my high school boyfriend.  Life was good.  It was all I had imagined it to be.

Until the eve of my best friends wedding, when chest pain and shortness of breath sent me to the hospital.  From that moment on, my life was never the same.

I was diagnosed with Viral Cardiomyopathy.

The following years were filled with fear, sadness, and loss. 

I lost more than I could ever describe.  My love, my security, my innocence. 

My gratitude for life.

Gone. 

I was jaded, and angry.  I couldn't make sense of why this happened to me.  Why did I have to be different, why did I have to be sick?

The years went by, and I started to regain some footing.  Outwardly at least.  I tried to live as normally as possible. 

My physical health went up and down.  It was a struggle. 

That brings me to this last Christmas. 

I knew.  I just knew.  Something was wrong.

I went to the doctor after the holidays, and was diagnosed with Heart Failure. 

My heart.  My one and only heart, failing again. 

The heart that for ten years, I forced myself to love, to accept for being "different"....for being weak.

I have always thought of myself as a positive person, someone who knows the power of grace and dignity. 

But in the face of illness, I tend to forget all of those things. 

I started to ignore, to refuse to accept that this was happening again. 

I didn't want to be sick anymore, I wanted to be a normal 28 year old woman.  I wanted to play, and date, and run, and work, stay up late, drink too much red wine....the whole thing. 

I wanted it all.

To make a long story short, (okay, shorter...) I tried to live like that "normal" girl for awhile.  Only taking a break to slip away to my doctor appointments, hoping nobody would ask me where I was going that day.  I wanted to hide the fact that I wasn't just like them. 

Nine months went by, until I found myself laying on my couch in the house I was renting at the time, sobbing with grief.  I finally let it all sink in.  How long I had run from my reality, how long I had deprived my body of much needed rest and tenderness.  

I made three phone calls.  My dad.  My mom.  My brother Ryan.

I barely had to say a word.  They knew. 

Within a week, with the help of my family, I moved to Saint Paul.  The city where my doctors are.  My wonderful, caring, amazing doctors. 

I knew in my heart that it was time to take control of my life.  To accept that my number one priority is me, my heart.  My beautiful, strong and sometimes weak heart, that has tried so hard to get me through this journey.  It is my turn to give back, to give it everything it needs to fight, to stay as strong as possible.

So here I am, in my tiny studio apartment. I've been here three weeks.  My dog Bennett is sleeping on my feet.  She and I are two country girls living in a new city.  I am within minutes of my doctors, which is amazing.  I am creating a life that is all about health, and healing.  One step at a time.  I call myself a full time Healing Junkie!

I have good days and bad, but one thing that remains a constant is this...

Gratitude.

I am grateful for my journey.  All of the things I've lived through had a purpose, they brought me to today.  I am grateful that my heart is beating in my chest.  I am grateful that I finally put my health and well being first.  I am grateful for my amazing family, for holding my hand every step of the way.  I am grateful for my doctors.  I can actually say, I am grateful that I am living with Heart Disease.  I truly am.  It has created a depth in me, something I might never have had.  A wisdom.  A sense of purpose.  I am grateful that I'm living with this, that I'm surviving.  One day at a time.

I will continue to dust myself off, and walk on. 

I still get scared, and have days where it takes everything in my power to get out of bed.  I get angry and frustrated, and sad about the things I have lost. 

 I allow myself that.

I figure that I deserve that much.  Being sick is a challenge, one that you can't really describe.  It is ugly and defeating.  But at the same time, there is so much beauty as well.  There is magic underneath.  I can promise you that.  Even if you have to peel away the layers of yuck, it's under there somewhere.

If I had to leave you with one piece of advice, I would say this...

Remain grateful.

Even when it hurts.

I am so honored to have been asked to share my story with you. 

I wish I could say, happily ever after....but at this point my story is still unfolding. 

It is still being written.

So for now, I will say this... I am on to a new chapter of my life.  One that I hope is filled with a new understanding of my body, a new acceptance for its loving ability to keep me going.  Every day I will take time to be grateful.  I will place my hand over my heart, feel the constant thump of its beat.  And I will say, thank you, thank you, thank you.

All my love,

Elissa

Vision Board Inspiration

If you ever feel lost or confused, I recommend putting together a vision board.  Sit down and look through all the magazines you can find, scour pages online and cut out photos, phrases and words that speak to you.  I have a few vision boards, but this is one that inspired me in creating Voices to Share.  Discovering what you want from life is one of the hardest things, but once you realize your hearts desires, you can manifest anything!  I made a conscious decision years ago to fight for my life and live each day to the fullest.  I hope you'll do the same.

Halloween Cakesicles

Today I wanted to change things up a little.  I love to bake with my daughter.  At least once a month her great grandma "Gigi" will come over and bake pies, and she loves making cookies with her Nonna and Auntie Natalie.  Since Halloween's only a few days away, we're going to try out these Halloween Cakesicles from Family Circle Magazine. 

Easy Halloween Cake Pops

Prepare cake mix following package directions. Cool, break into crumbs and stir in 1 cup canned frosting. Roll into balls (about 50 per batch). Melt 1 pound candy melts (such as Wilton). Dip one end of lollipop sticks in candy and then insert into cake balls (this keeps them from coming loose). Freeze to set. Dip pops in melted candy to coat, decorate as desired, then press sticks in a styrofoam block to dry. (If drawing faces with an edible marker, let candy dry first.)

By the way, my daughter and I attempted to make this recipe this morning and I had to post it because it made me laugh!  I used ingredients from home and didn't have the popsicle sticks.  They taste delicious, and we had a fun time making them.  I had to take a picture:)  Just in case you were looking for a fun activity...  Happy early Halloween!

Meredith's Voice

When I brought my first daughter home from the hospital, I was overwhelmed by every emotion.  First, I couldn't believe the doctors trusted me to care for this little, beautiful being.  She felt so fragile, and I'm the world's biggest klutz.  I was certain I'd drop her or do something that would permanently scar her for life.  It's scary enough bringing a child home for the first time, so what happens when you get a phone call that tests came back and something's wrong with your newborn?

Meredith is a new mommy friend.  When her first son was 3 days old she was told he had a translocation on his 16th chromosome.  She writes:

What did that diagnosis mean? Nothing? Death? Something horrible in the middle...  I have a hard time remembering what I felt that night except for being completely numb. When the shock began to wear off, I began to lock every window to my heart. I needed to save my baby, and I could not risk falling apart. 

Many describe receiving a traumatic diagnosis as being punched in the gut or kicked in the head. I felt my pain in my heart. It was broken. The days and nights that followed were filled with panic, dread and guilt. Why did I take Zofran for my nausea during my pregnancy? Why could I not nurse this baby who might be sick? What kind of mother was I? Guilt and fear washed over me, day in and day out...

Once I gave in, the despair struck me like a hurricane -- and then quieted into a soft, gentle rain that soaked me to the bone but was a relief nonetheless. I crawled into bed next to my son and allowed the anguish to take me over. I couldn't stop crying as I stared at my perfect, sleeping baby boy. Afterwards, for the first time in weeks, I slept.

After I awoke, I looked at my son differently than before. He was no longer someone who was breaking my heart, but someone who would strengthen and mend it. Little by little, minute by minute, my heart began to heal. I began to cry regularly and freely. While I looked weaker on the outside, each tear was a release. There was time to cry and time to feel. Each tear was a reminder to slow down and realize that my son was still alive, and I loved him.

Meredith's son is not only alive today but he's almost 5 years old and thriving!

You can read the entire story at Momlogic.  Please keep sending me your stories so, like Meredith, you can help inspire people.  Thanks for reading Voices to Share, healing hearts one voice at a time.

Throw Away the Mommy Guilt

Why do us moms feel guilty when we try doing something for ourselves?  Tonight I took a class and came home to a sick baby.  Five minutes after I walked in the door I could hear her moaning.  I held and rocked her to sleep, but it's times like these when I question my path.  Is it fair for my young daughters that I'm working on this blog, building my on air hosting career and a lot of etc?  For me it's a rhetorical question.

After going through what I've been through I know how fleeting life is.  I want to savor every minute of it; whether working on my personal and career goals or spending time with my daughters.  I want my girls to know how important it is to live life with no regrets!  It's easy to fall into a daily routine where you're living life to pass time.  Stop feeling guilty or fearful of change.  The happier you are as a person, the better you are as a parent.  Besides, our kids are always going to point out things we did wrong later in life, just like we did to our parents, so you might as well be fulfilled while you try your hardest not to screw up the kids.  Thanks for reading Voices to Share, healing hearts one voice at a time.

Grateful for Diagnosis

Photo from Donnabella's Angeles, a non-profit organization dedicated to providing inspirational art with healing images to medical clinics, patients, and caregivers.

Last week I wrote about What Happens When You Get the News?  I shared my battle with heart failure and didn't know what to expect, but I'm blown away by the response.  Thanks for all your love and support!  I hope my voice inspires you.

This takes me to today's subject...  Gratitude.  When you get diagnosed with a disease or endure a personal crisis, how can you remain positive and grateful?  For me, I was fearful of sudden death from cardiac arrest.  That fear transcended to every part of my life, and I was generally terrified of living.  I would wake up in the middle of the night screaming.  I went through a brief "why me" phase, but spent more time thinking I deserved this.  I had almost everything I wanted in life.  I felt like I wasn't worthy.

That's when I learned about the law of attraction and the power of positive thought.  Negativity and stress are toxic.  Rather than feel sorry for myself, which is really easy, I started meditating on the things that made me happy.  Initially, it was a challenge.  I thought about my relationship with my mom and my boyfriend (now husband) who stood by me when it was so easy for him to run away.  The more I started shifting my thinking, the more grateful I became.  Now I find myself talking to my daughters about simple everyday things that I'm grateful for like a butterfly, cookie or the smell of fresh air after it rains.  Today, I'm even grateful for my diagnosis.  It gave me a better understanding of who I am as a person and who I strive to be. 

Every night before you go to bed jot down three things you're grateful for.  Catch yourself when your mind starts wandering to a negative place, and start focusing on something that makes you happy.  Read as many books you can get your hands on about the law of attraction, the 7 chakras and the power of positive thought.  Thanks for reading Voices to Share, healing hearts one voice at a time.

Here are a few books...

The Law of Attraction by Esther and Jerry Hicks

Ask and It Is Given by Esther and Jerry Hicks

The Amazing Power of Diliberate Intent by Esther and Jerry Hicks

The Seat of the Soul by Gary Zukav

A New Earth: Awakening to Your Life's purpose by Eckhart Tolle

The Secret by Rhonda Byrne

What happens when you get the news?

Last night I couldn't sleep.  My girlfriend just found out one of her oldest friends was diagnosed with stage 3 breast cancer.  It brought back so many memories.  My battle with heart disease started when I was a senior in high school.  I went in to get my wisdom teeth pulled.  It was routine, but my teeth were impacted so they had to hook me up to an ekg and put me under.  As I was waking from the anesthesia they were yelling that something was the matter with my heart.  "Get her mother in here right away," they yelled.  I looked over at the ekg monitor and all of a sudden it went dead.  I barely remember this part, because I think it was so traumatic but my mom said I screamed at the top of my lungs, "I flatlined, I'm dead, help me."  My mom rushed me over to see my grandfather's cardiologist.  He immediately evaluated me and determined that I just had irregular heart beats or an arrhythmia.  I was getting ready to leave for college and we asked my doctor if I needed to stay close by and change my plans.  Fortunatey everything was fine, but deep down I always knew there was something else going on with me.  College was great except for the occasional run in with the university health center.  One day I went in for a twisted ankle and walked out in tears with my ekg strip.  After taking my pulse, the nurse insisted that I needed to get an ekg right away and consult with a cardiologist.  "After all, you don't want to drop dead after you leave here," she said.  Gotta love her bedside manner.  I made it through 4 years of college and really lived like any normal student, refusing to believe that I had to change my lifestyle completely for my "hiccuping heart" as my cardiologist called it. 

After graduation I came home to LA, got a master's in broadcast journalism was teaching spin aerobics and wham...  My entire life changed with one simple sentence.  "You have cardiomyopathy, otherwise known as heart failure," my doctor said.  I looked around at my mother.  She could barely look at me.  My father got up and walked out of the room to gather his emotions and thoughts.  The memory is so intense that I can't help myself, I'm crying as I write this entry. My mom and I took the entire day together just hanging out.  I looked around and was shocked.  How could everyone go about their business like everything's normal when my entire world was shattered.  I remember worrying about how I was going to tell my boyfriend (now husband) at the time.  Why would he stay together with a 25 year old woman with heart failure?  Talk about baggage.  Then there was the rest of my family and friends.  Even though everyone tried to be supportive in their own way, I felt completely alone.  It was actually at this point in my life when I thought of the idea for Voices To Share.  I wanted a safe place where I could hear about other people's stories and know that I wasn't alone.  Especially considering that every heart disease website I visited showed pictures of aging grandparents walking on the beach or overweight people who never worked out.  It just didn't make sense. 

So the big question is what do you say to your friend or loved one when they give you the news.  The most important thing is to try and treat them the same way you always did.  Please try and refrain from looking at them and just crying, after all who's the one really dealing with the issue here.  Also you know that look of despair you get when you think someone might die?  Please don't look at us this way.  Tell your friend that you'll be there for her in whatever capacity she needs you.  Maybe she just needs to cry and vent about how crappy life is, or maybe she wants to see a movie.  If she has kids, offer to have them over for a playdate so she can rest.  If she's single, see if you can bring over food or go with her to one of the hundreds of doctor appointments.  Just follow her lead.  I truly believe that my heart wouldn't have improved so much had I not accepted the support and love in my life.  That's the other thing, if you're sick and you don't want to burden anyone with your problems it may take a while, like it did for me, but when you open yourself up to love it can be the more powerful than any drug out there.

How do you balance everything?

I want to know how you moms do it!  I have a tough enough time pulling myself together in the morning, now I'm responsible for two little girls.  And let me tell you, brushing a three year old's hair (and teeth for that matter) is not easy.  The past two days have been an emotional roller coaster for me.  I'm trying to balance everything, and I'm beyond exhausted both emotionally and physically.  Every night I'm up at least once with my kids and any free time I have I'm either coordinating schedules, working on one of my many careers or talking to my hubby, mom, mother in law or step mother in law.  I feel like I'm such a bad friend right now.  The minute I try and talk on the phone my three year old yells, "mom get off the phone now!!"  I used to meditate every day but lately I haven't had to time wash my hair let alone meditate!  Today as I had one of my minor break downs, ie uncontrollable tears with both my best friend and my dad, I realized that I have to make a change in my life.  Although I'd like to think I can do everything, I can't do it anymore.  Besides, that's how I got sick in the first place.  So tonight I'm writing my TO DO list and reevaluating everything.  There's no sense in doing something if you're distracted or not present.  Tomorrow I'm going to start putting myself back on the list, and a meeting with my spiritual therapist, meditation and yoga are top of the list.

Stop judging bottle feeding moms!

So I had to stop breastfeeding my second child after a month and it was heartbreaking!  I'm one of those moms who doesn't mind pulling out the boob in a public restaurant or even in front of my father in law.  Of course I'd cover myself, but I think it's a beautiful thing to see a mother nursing her child.  When I was told I had to start a second heart medication I was devestated.  I spoke to everyone, and it was exhausting.  I heard everything from why would you want to risk harming your child by breastfeeding to all you have to do is learn how to listen to your baby's heart beat, but you can keep breastfeeding.  When I really started thinking about it, I realized where a lot of my underlying emotions were coming from.  There are so many fears.  Am I poisoning my child by giving her formula?  I feel such a bond when I breastfeed, will that go away?  And lastly, but I didn't realize how important it was until I broke down to the nurse in my daughter's pediatricians office, what will people think of me?  Breastfeeding, like vaccines can be such a polarizing issue.  I have to admit that with my first daughter I judged women who didn't breastfeed.  Like Gisele's comment on how there should be a law demanding that women breastfeed for the first six months, I couldn't understand why women wouldn't do anything in their power to protect their babies.  Then I faced my own reality.  I could keep breastfeeding my child and monitor her heart rate, or I could let go and give her formula.  A friend of mine sent me an article http://www.theatlantic.com/magazine/archive/2009/04/the-case-against-breast-feeding/7311/, it's definitely worth taking a look at.  Whether you have difficulty producing milk or you have to go back on medications, I think it's important for people to stop judging and start supporting one another.  Especially exhausted new moms!

A Daughter's Heart Saves a Mom

I saw the most amazing story on the Today Show yesterday.  It was about a mother who lost her daughter in a tragic ski accident.  Taylor Storch was only 13 years old and her donated organs saved five lives.  One of the recipients was a woman suffering from heart failure, the same condition I have.  Fortunately my heart improved where I didn't have to think about a transplant.  But when it was brought up in the past, I always thought about how the core of me would change with the death of my heart.  Everything I do comes from my heart.  In fact, I'm pretty sure that the constant giving of my heart lead me to this disease.  So what happens when a piece of you literally dies and is replaced?  You hear all the stories about organ recipients developing strange tendencies, like a vegetarian craving a cheeseburger.  I'm sure it's nearly impossible for scientists to quantify, but you never hear about the 13 years of love that developed in that heart between a mother and child.  Like Taylor Storch donating her heart to a mother of two.  Taylor's mom visited the woman whose life was saved by her daughter's heart, and listened to her dead daughter’s heartbeat.  She said her daughter's heart "had this huge kick".  Being a mother myself I could only imagine the feeling of loosing a child, and hearing my child's love in another body.  And coming from the other angle of being a heart failure patient, the thought that both Taylor and I would be given a second chance at life in our own ways is beautiful thing.  The story is so powerful!  Through the death of a child and devastation of one family comes the rebirth of hope in another family.  You can watch it at http://today.msnbc.msn.com/id/39456266/from/toolbar.