Thursday, March 27, 2014

Reaction Differences

When I was in the hospital a nurse came in and handed me information on living with heart disease.  I remember thinking I had a heart attack, I don't have heart disease. The two were in no way mutually exclusive in my mind.  What a sheltered world I lived in, huh?  I had never been really sick with much more than strep throat or the occasional flu.  Carolyn over at Heart Sisters wrote about this phenomenon in her post ‘Healthy Privilege’ – when you just can’t imagine being sick. I could have never imagined this.  This was something that happened to other people, not me.

I am in the CCU which I can't believe in the first place, and I know I am looking stunned while this nurse is trying to go over this information with me.  As if I had not reached illness overload already I could hardly digest that she was telling me I now had a lifelong chronic illness. (See Post Heart Attack Stun). In my mind heart disease was for old people.  Let me tell you that 42 feels really young when you are talking about heart disease and heart attacks. A heart attack was a one time thing; it was over and now I am well and I go home. Wrong--now I go home and take a lifelong regimen of cardiac medications including an anticoagulant, a beta blocker, a statin drug and aspirin. Now I go home and decide how this defines my life.

I came home and decided this was indeed going to define my life and that it would play a large part in defining my life.  I was pissed as hell that this had happened to me.  I was pissed that it had ruined my 'healthy privilege' as Carolyn calls it.  So, never one to sit idle I posted it on Facebook a couple days after I returned home.  Even some of my closest friends did not know when I decided to put it out for the world.  After working through a whole lot of anger and an extreme fear of dying pretty publicly, I've never looked back.  I shout survivor to whoever will listen.  If you give me more than two minutes of your time you will know that heart disease can affect you and not just affect you but kill you.  Even if you don't give me a full two minutes I will still tell you I am a survivor.  I will tell you over and over and I don't care if you get sick of it. Why? Because it will stick with one person and they will call an ambulance when they need to--maybe it will be you.

I have a friend that had a heart attack two years before I did and still to this day her friends do not know.  She has a hard time with the word survivor.  Hers was not massive, but something she found out about after the fact.  She is ashamed she didn't know and ashamed that she let her health get bad enough that she had a heart attack. The funny thing, she can tell complete strangers but she is ashamed to tell those that she knows. I told her to hang on to her hat, I'll make sure she gets comfortable with the term survivor (I know you are reading this girl--you'll get there!) Not to say I haven't had my struggles with this journey but overall I think I've done pretty well.

I think what this shows is there is no right or wrong way to react to a heart attack.  Really there is no right or wrong way to react to any serious diagnosis.  Each person has to work through the journey their own way.  So, if you are new here and you have found me because you are searching the net to find information after your own heart attack, just know that you will settle in. I know the feeling of fear you are experiencing and I know you are pissed that you now have a lifelong chronic illness.  I have met enough people that have been through this and everyone handles it differently.  Every emotion is valid.

Sunday, March 16, 2014

How Do You Explain?

I have been pondering for the last few weeks how to explain the unfairness of very serious medical diagnosis to children.  There really is no easy way.  My children have been very fortunate in their lifetime not to feel the unfairness of life.  The worst unfairness they have had is the divorce of their father and I about 7 years ago and the first death of a grandparent this last fall.  There is so much tragedy and unfairness in the world that can't be imagined from our little town in Kansas. On one hand it is awesome that they don't know but on the other hand, life drips with unfairness and when it is never experienced, how can it be explained?

My heart attack was very scary for them.  Because I have been so open with the world about my experiences, they have been immersed in education about women and heart disease.  They volunteer with me at AHA--Kansas City events.  I am going to take them out of school this spring to volunteer with me at a Friday event.  It is of huge importance for them to see me take something really bad in my life and turn it into something really good.  The lesson is that life is what you make it.  I could have never not shared this and not spoken of it to them because for me that would have been be an impossible journey.  Perhaps this is not what someone else would choose and I would never fault someone for choosing not to share.  I took this chance to help and educate others and grabbed that bull by the horns.  Our lives are richer for it--richer for the people we have met on this journey that is strange, scary and beautiful all at the same time.

 I can set an example for them of how to handle the bad things, but what I can't explain is why the bad things happen. My middle school child has experienced a classmate and friend that has been diagnosed with leukemia.  She is very ill and currently cannot attend class.  The town we live in held a benefit last night in her honor if which she was able to attend.  My daughter and one of her friends went up to the rec center and were able to see her.  I think it frightened them because she is swollen and wearing a wig and from the description has some tubes attached (I didn't go because I have been very ill with strep and you certainly don't want to spread that to a child having chemo). I didn't see her appearance but I am not unfamiliar with how this treatment can change the appearance.

When my daughter got home last night I know she was looking for me to explain leukemia and then for me to tell her that her friend was going to be ok.  I want to tell her that but I also don't want to tell her that and then have her friend not be ok.  How much do you say to someone who is 12?  I found it incredibly difficult to educate and comfort because when you start explaining leukemia, there is nothing comforting about it.

So I turned the conversation to what we could do to help because I genuinely don't know how to explain the unfairness of cancer in a twelve year old (or in anyone for that matter). If I can't explain the unfairness to my daughter, imagine her parents explaining to her how sick she is.  My heart breaks for them and even though I don't know them, they are often in my thoughts.   This little girl loves Taylor Swift and wants to meet her--not that Taylor Swift will answer and I told my daughter this but I also told my daughter to get in and send and email and give it a try.  I am going to help her with that today. The worst that can happen is that you get an answer of no or that you don't get any answer.  You don't know if you don't try.  I had given her money for the things at the benefit--turned out everything was free so she donated the money.  I told her that although this does not seem like much, it is amazing what the little things can add up to.  It is a whole lot easier to explain that all of the little things that everyone in our community does for them adds up to a great big hug from our community for this little girl and her family.  All of the prayers that our community says for them, hopefully they can feel.  This is the lesson I teach because to teach the unfairness lesson is really tough to do and I don't know how to do it. 

I don't know how to do this because I still don't know how to explain why I got to live and 80 percent of women who experience what I did have the unfairness of dying. Why of those who do live my outcome has been so much better than others.  I'm quite sure in the end there is no way to really ever explain it. There is no way to explain why people suffer a devastating medical diagnosis; why some people survive a diagnosis and others don't.  It is not specific to heart attacks or cancer but is far reaching across many medical diagnoses.  I think what I teach to my children in the end is there is no  rhyme or reason and that is unfair. There really is no explanation of the unfairness but what you do with the unfairness is what matters.

Saturday, March 8, 2014

I Love February!

Happy Saturday morning to you!

I know I have eluded to the fact that I was in no mood to celebrate American Heart Month in February of 2012. Survivor was too new to me and I was not ready to embrace it. When American Heart Month rolled around in 2013, I was a little more ready to embrace it. I went to the American Heart Association-- Kansas City Go Red Casting Call.  After having been a Go Red Ambassador for almost a year, I was ready to full on celebrate survivor this year! I had some of the most fabulous ladies by my side while we celebrated!

On February 6, I summoned the courage for live TV and appeared on KC Live.  I haven't watched it because it is weird to see myself on TV but my friends tell me I rocked it so I guess I will believe them:.

That evening we went red at Hamburger Mary's:

On February 7 we celebrated National Wear Red for Women Day and my family, friends and co-workers turned out in style! They turned my Facebook page RED! You can see for yourself here. We also went red at The Red Dress Dash:

Now, I am not sure anyone will believe this but I have been the dedicated social media queen for the AHA KC in February!

On February 10, I had the great pleasure of speaking to staff at the American Academy of Family Physicians about women and heart disease.
On February 12 I spoke with the fabulous ladies at the National Association of Professional Women:

I did an hour-long radio program:
You can find the podcast here under February 23.
I  spoke to my women's group WOAMTEC.
I interviewed for a story in the Lawrence Journal World. Rock Chalk!
I shared the stories of Liz, Keri, Regan, Shelly, Monica and Teri. What fabulous stories! If you have not read them, please do--discover what makes these women so incredible!

We went red at RA Sushi:

Finally, we stepped out in style last Saturday at the Heart and Stroke Ball and Pulse After-party. What a great evening this was as Kansas City turned out in icy weather to raise $780,000!

What a great month!  Now we move forward and focus on the Half Day For Your Heart luncheon on April 25 and the Kansas City Heart Walk on May 31! The weather is starting to show a hint of spring after this brutal winter and I was able to get out at work yesterday at lunch and walk with my friend and co-worker Donita. The brutalness of winter leaves me feeling like this:
Ever the optimist I know that spring will come and the remaining cold days are just dancing the cha-cha with spring:

Even if it remains cold, this is still my favorite time of year! Selection Sunday is fast approaching and I have crimson and blue pulsing through my lucky to still be beating heart!
Rock Chalk and have a great day:)! I hope spring is fast upon you no matter where you live!