Monday, March 26, 2012

Bring on the spring (Heart Ball reflection and more)

A small bit on the ball:

So, I'm hoping you've had time to watch the video from the Heart Ball.  What a day, what an experience.  When the local chapter of the American Heart Association first asked me and Brian to participate, we thought it would be just Brian who spoke.  Then the idea evolved into me making the special appeal (request for $) to the audience.  I have to say, I make a living raising funds for a good cause (yay SLLIS!), but this particular ask was much different. And of course, who can say no when you bring a cute baby (the "heartbreaker" if you will :)  ) on stage?  Happily, not many.  Our appeal brought in over 300% more than 2011's ball!!!!!  That is a good chunk of money for a great cause and if sharing my story publicly means more funds for heart disease research and awareness..well, you might not hear the end from me. 

The slightly more surprising (though it really shouldn't have been) part for me, though, was the amount of love and support I received from my close friends and family.  A dear friend sat with me to take notes and help arrange my thoughts as I crafted my speech.  My parents sat in the hotel room with me and entertained Cam as I tried to calm my nerves (rather unsuccessfully - I get the WORST stage fright).  More friends and family came to sit with Brian in the ballroom.  With all of these people in my life sending all this love my family's way, all of the nervousness just melted away.

I had only imagined that evening as far as giving my speech and getting Cam to bed.  It did not occur to me how many of the guests would want to chat with me or share their own experience of heart disease.  Moms and dads and siblings and grandparents with heart disease and heart stories- all in one room.  Hearing their stories and having them thank me for sharing mine makes me feel like if we ALL keep talking about heart health, that maybe one day, someone will find a cause/cure for SCAD.  One day.

My stress test and ultrasound is tomorrow afternoon.  The last one I had was 2 months after my heart attack and not too much had improved in that time.  I'm hoping that, having completed cardiac rehab, taking my meds and continuing regular exercise, that there will be a difference.  I do worry about that damaged part causing me trouble at some point but I guess only time will tell.

On a lighter, happier and more exciting note, Cameron turns one next week.  My not-so-little-baby/toddler-boy is going to be ONE.  I can't believe it.  Where did the year go? What were Brian and I like before Cameron came into our lives?  Last night, the three of us enjoyed our dinner on the patio and when Cameron was finished (when he starts throwing his food to Mowgli), we let him crawl around.  He pulled up on the back door, cruised along the siding and grabbed ahold of my chair. He then fastened his hands on the table and alternated between his tippy toes and letting his legs swing slightly as he dangled from the table. To Mowgli's dismay, he made a game of chasing the dog under the table and to the edge of the deck.  When it was time to come in, my little boy had dirt under his nails and a few little scrapes on his knees - maybe a small glimpse of the not too distant future?

I can't wait to blog about the birthday boy next week.... and Heartiversary the week after!  If it's not already on your calendar, my Heartiversary Happy Hour is Friday, April 13th at 3500 Winehaus.  A suggested donation of $25 will get you food and wine samples.  The restaurant is also donating back a portion of the wine by the glass/bottle sales that evening and my friend Kerry who made our wedding cake is making a heartiversary cake!  We'll be there from 5:30-8:30pm and proceeds from the evening will benefit the local Go Red for Women movement and SCAD research.  Please consider dropping by, even for a quick visit - I have received such wonderful messages from friends and acquaintances near and far and would love to share this milestone with you.  I know it's opening day for the cardinals - keep your red on, come after the game and recharge before you go out!!

"In the end, what affects your life most deeply are the things too simple to talk about."
-Nell Blane

Sunday, March 11, 2012

Heart Ball, Part I - The video!

Whew.  Yesterday was amazing. And exhausting and nerve-wracking.  And amazing again. A HUGE thanks to my dear friend Jeremy for bringing his video camera and stepping away from his role as "guest" for a few minutes to capture this for me.  Here's a link to the unedited version of the video.   You can stop watching after Brian, Cameron and I leave the stage - it's not so entertaining after that and I'll tell you the ending-  my live appeal made $104,000 (!!!!!!!!).


More to come... now it's time for bed!

Thursday, March 8, 2012

March Madness, Part II - The Cosmic Joker NEVER misses a party

"Sometimes, I feel the fear of uncertainty stinging clear
And I can't help but ask myself how much I'll let the fear
Take the wheel and steer."- Incubus

I won't share all the details of the story, just the important ones.  Half way around the world, a young man, in his mid 30s, collapsed.  He was rushed to the hospital and it was determined he was having an aortic dissection.  Open heart surgery and 2-3 dozen pints of blood later, he was critical but stable.  And now he's recovering, slowly but surely,  and I bet, getting used to his own new normal of being a young heart attack survivor.  It is nothing short of a miracle that he survived. 

I don't believe I've shared another survivor's story before, but this one is different.  The man is my cousin.

No cardiologist has really given me a reason for why I had SCAD.  There are theories and ideas and likelihoods, but no "reason".  Considering everything I've learned about it, I've been comfortable with the notion that my pregnancy was the biggest risk factor.  This has been my truth, my reason.  But now, it feels like there's a twist in the story.  Could there be a genetic factor? Could it be an absolute coincidence?  What does this mean for my other cousins? And most scary, is this something I could have passed along to Cameron? So many questions. No answers.  I brought this up during my cardiologist visit this week and thank goodness for experts.  Dr. B drew a family tree.  Asked some questions about my dad's side of the family.  Made a few suggestions. Created a list of next steps.  Put a process to something that felt like absolute madness to me.

My cousin, whom I haven't seen since a trip to India at the age of 5, is in my thoughts every day. So is his wife.  I send him the best of wishes as he adjusts to his new normal.

"I'm trying to tell you something about my life, maybe give me insight between black and white.The best thing you've ever done for me is to help me take my life less seriously, it's only life after all. Well darkness has a hunger that's insatiable and lightness has a call that's hard to hear........There's more than one answer to these questions pointing me in crooked line. The less I seek my source for some definitive, the closer I am to fine."  - Indigo Girls

Of all the things I expected to feel this week, sad was not one of them.  Anxiety maybe, or anticipation or excitement.  For at least the last five years, I have believed in the cosmic joker.  This wiley character sneaks into your life just when everything seems to find a balance and likes to cause trouble.  The cosmic joker can be blamed for most things ironic and all of  those annoying, irritating things you never expect and then can't believe actually happened.  My doctor's appointment this week went quite well, with the two small exceptions.  I've been waking up periodically with a pounding, irregular heartbeat (not painful, just strange) and my cardiologist suspected my thyroid could be to blame (which, honestly, would explain why at 95 lbs, I am at my high school weight.... silly me, I thought it was diet and exercise!!).  Altered thyroid function could be the reason for the arrhythmia.  However, my blood test came back with normal thyroid function and normal electrolytes - so, hooray for diet and exercise :) But...... Damn. This was the most likely explanation.  Perhaps it could be that by nighttime, my meds have worn off and my heart is having difficulty compensating.  So, for the next 30 days, I'll wear a monitor to bed (oh so sexy!) and hope to catch the episodes in action.  We'll see what happens. And I'm back to taking my beta blocker twice a day.  Because I have multiple stents, staying on all my meds for another year is the plan.  

Summarily, I had a great appointment.  I have a stress test and echo schedule for 3/21 and that will tell us if my heart function has improved any from last summer.  This is ALL good.

So why the sadness?  The best I can guess is that going to the doctor reminds me that I'm being treated.  Treated for something crappy that happened to me, that I have no control over.  Something that has totally changed my normal.  In a previous post, I mentioned going "back to normal".  The old normal doesn't exist - there's nothing to go back to.  All of a sudden, this tidalwave of anger and frustration knocked me over.  When I got home from work, I sobbed into Brian's chest about how this all just sucks sometimes.  And we laughed together because I was being totally ridiculous and then I cried some more because I had to get it out.  And then Cameron came home from Grandma's house and I stopped acting like a ridiculous, whiny mess because I'm here.... I had THE BEST outcome.  And as Brian said, people go through far worse.  Of course, I only have my experiences to go from.  But if given the choice of being perfectly healthy with no Cameron, or keeping things as they are.... well, I'd suffer a thousand more SCADs for that boy.

After going through such an emotional process this week, it has become that much more important to share my story at the Heart Ball.  I have struggled to find the right words (funny, because blogging has been a great outlet) to express what it means to live with heart disease.  It appears that, in letting my guard down a bit, the right words found me.  I am eager to share this experience with you next week.  And pictures of my gorgeous red dress.  It's sooooo pretty :)

"Just when we think we figured things out, the universe throws us a curveball. So, we have to improvise. We find happiness in unexpected places. We find ourselves back to the things that matter the most. The universe is funny that way. Sometimes it just has a way of making sure we wind up exactly where we belong." - Grey's Anatomy

Monday, March 5, 2012

March Madness

*I know I'm bad about this sometimes - there's totally another story that deserves telling, but it's not quite ready yet!  So in the meantime, enjoy this little update!*

In like a lion, out like a lamb.... right??? That's what I remember hearing about March. The month has only just begun and yet, there's been plenty of excitement. Cameron is 11 months. ELEVEN MONTHS! The last few weeks have been a rapid evolution from a belly on the floor army crawl, to this goofy sit/crawl, to a one-leg gets dragged along crawl, to a full on hands-and-knees crawl.  He cruises around from couch to coffee table and this past weekend, it was discovered he can climb stairs.  I swear, this kid has no fear. Here he is at the park - his favorite park activity is the swing... I dare you to try to take him out of one!

Cameron is also quite affectionate. If you ask him to "give kiss" he presses his lips, open or shut, up against whatever part of your face is closest to him - nose, ear, cheek. He's also a fantastic snuggler.  This picture continues to make me laugh because it's as if he's waiting for breakfast in bed.
And here are my boys taking a nap.  Tooooooo freakin' cute.

With every new milestone Cameron achieves, he becomes that much more fun.  I continue to be surprised at how much I enjoy each of them.  And I can't wait to celebrate his first birthday in a month.  WOW.  Time really flies.

March is exciting for me too.  I have my first stress test and ultrasound since last June (when I was in the hospital for the second heart-related time). I'm hoping for only good news of course and am eager to talk with my doctor.  Other than a few random things (periodic rapid heart beat, tingly fingers at night, easy bruising), I've been feeling pretty good.  I'm not sure if feeling good = being good (or the best I could be), but I'll take it.  When I workout, I can get my heart rate up to the 140s from my resting rate range of 60s-high 70s. I felt guilty having a grilled cheese sandwich a few days ago and then realized I hadn't had one since I was pregnant!!!  At least, not one with real cheese (as opposed to soy.) So, I'm confident about my diet and have been taking all my meds - there can be nothing but good news, right?

Even more exciting and nervewracking, my heart story will be shared at the American Heart Association's Heart Ball this Saturday.  And I will be speaking! EEEEEEKKK!!  I have always been comfortable writing about it and chatting about my experience one-on-one. But talking about it to a room full of people - that's definitely equal parts thrilling and terrifying.  I am looking forward to sharing the video with you all (will post on 3/11).  It sort of feels like coming full circle even though heartiversary isn't for another month.

So wish me luck! I look forward to sharing another update next week.

"If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome."  ~Anne Bradstreet

"Spring makes its own statement, so loud and clear that the gardener seems to be only one of the instruments, not the composer."  ~Geoffrey B. Charlesworth