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Life In Focus

Surrounded by amazing people everywhere I looked, it was one woman I met while at the Women’s Conference that affected me deeply.

I was milling around the EmpowHER booth as I was to be interviewed by the lovely Michelle King-Robson, CEO of EmpowHER.  As I was standing there, watching the crew arrange the set, a woman approached the booth.

She must have mistaken me for an employee of EmpowHER because she asked, “What an interesting idea for a booth!  What does this company do?”

Feeling like part of the family, I responded, “Well, let me tell you!” With that I began to tell her of all the wonderful things EmpowHER has done, and will continue to do, for people on it’s website.

I detailed the ‘Ask A Health Question’ aspect of the site and told her how it helped me.  We talked about the interesting concept of hosting a live Health and Wellness TV Program and I told her of the professionals being interviewed.  I then mentioned that I was to be interviewed shortly in their segment about heart health.  She was intrigued.  That’s when the conversation turned personal.

What Brings You Here?

“Heart disease!”  The look of shock could be seen a mile away.  Although she didn’t say it, I could see it in her eyes.  Somehow, she understood.  And then she began to say; “I lost two close friends of mine to heart disease.  It’s a terrible thing.” 

Standing maybe five feet tall, a rolling bag behind her, I was amazed to learn that this vibrant woman had lupus.   I was shocked!  She seemed so healthy.  I asked her about her condition, as I was unaware as to what it all meant.  Slowly she explained, “I have a difficult time breathing.  Most days I have to use oxygen”.  She told me of how she has good days and bad.  How family members almost get it and of the incredulous looks she gets from onlookers when she uses her disability placard. 

A Universal Truth

I tried to prepare myself for any contingency at this conference.  The idea of being interviewed in front of a live audience, being star-struck by meeting Michelle King-Robson and the sheer size of the conference.  In all of that, I found myself completely taken with this wonderful lady who happened to be passing by.

Her story is my story.  No matter what the condition, we all face the same challenges.  Although I can’t remember her name (thanks, stupid Lipitor), I’m eternally grateful for the opportunity to meet such a courageous person. 

It’s a big world out there.  Don’t forget to focus on who’s right in front of you.  It might change your life.

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“The day was finally here.  I have nine whole days to relax in Maui; nothing but fun in the sun.  It’s a week I’ve been looking forward to for several months.  Too bad I have to take Rebecca with me.”

— Rebecca’s Heart

Sometimes I imagine my heart disease has a life all it’s own.  After all, it deserves a vacation too, right?  It’s got to get sick of me eventually.  All I ever do is complain about it, tell others of its horrors and wish it away with every fiber of my being.  Is that wrong?

Life Goes On

Perhaps it isn’t very realistic to think of my condition as a life force.  No doubt, some would argue that to do so is a bit egotistic.  I mean, after all, we all have problems, right?  How can it be a good thing to attribute human traits to something one can’t control?

Well, ask anybody who has this, or any other, stupid disease.  I bet they’d tell you the same thing.  Sometimes to come to terms with your condition is to acknowledge it and toy with it.  What do I mean?

Vacation’s All I Ever Wanted

And who wouldn’t?  I want a vacation from all of my troubles, worries and responsibilities.  Therefore, it stands to reason that what comprises me would want the same.  So what if I talk of my condition as wanting a vacation or speak of it as a living entity.  When you face life each day with the prospect of dying, you’d be a fool not to make the most of it.  If that means teasing myself and that which consumes me, so be it.

Kudos Kathy Valentine, Charlotte Caffrey and Jane Wiedlin.  Who could imagine the impact your song would have:

‘Can’t seem to get my mind off of you’

‘Back here at home there’s nothing’ to do’

‘Now that I’m away’

‘I wish I’d stayed’

‘Tomorrow’s a day of mine that you won’t be in’

 

Wouldn’t that be great.

But You Don’t Look Sick

Is that supposed to be a compliment?  I guess it depends upon who you’re talking to.

It’s hard for me to express my true feelings when the inevitable response is, “But you look so good!”  Ummm, thanks?  I sometimes wonder why people bother asking how I am.  Apparently I look fantastic!  That being said, I guess I can’t fault them.  After all, the people in my life must care about me; otherwise they wouldn’t keep asking how I’m doing. 

I appreciate their concern, I really do.  It’s just sometimes I wish my condition showed; like a broken arm in a cast. 

Get The Balance Right

Having a chronic condition that no one can see presents a very unique challenge.  It’s a situation many people face; not only those with heart disease, but also those who suffer from other chronic conditions, such as fibromyalgia.

Like anything, there must be a positive side to having an invisible illness.  After all, it’s completely up to you how much you divulge as to how you are feeling.  That’s a definite plus.  Some days I just don’t feel like dealing, you know?  Other days, when my closest friends surround me, I feel more at ease to talk at length about this stupid disease. 

Of course, as mentioned at the outset, there is a flip side.  I guess what’s important is striking a balance unique to your situation. 

Is Seeing Believing?

Not when it comes to heart disease; but that’s ok.  Perhaps at this point I should quit worrying about what other people think and focus more on helping them understand.  Perhaps this will work:

Dear Friends and Family;

Just because you can’t see it doesn’t mean it doesn’t exist.

Love, Rebecca

When I was diagnosed with heart disease in 2007, it took me a while before I could wrap my head around it.  While I was glad to finally know what was wrong, I was completely overwhelmed as to what it all meant.

Overcome by feelings of worry and fear, I started to panic.  With these thoughts swirling through my head, my darling husband suggested that I write them all down.  I’ll never forget what he said that day in December, “Perhaps your story could help other women who suffer from heart disease”.

On December 6, 2009, I began Rebecca’s Heart.

It surprised me to learn how many women are in the dark about heart disease.  I’ve heard from dozens of women who were thrilled to learn that they weren’t alone.  So many with strange symptoms that doctors passed over for stress; so many survivors of bypass or multiple heart attacks; some at a very young age.

Apparently my little blog with just over 3000 hits is making a difference.

Now, I need your help.

I am proud to say that I am involved with EmpowHER’s 1000Women Campaign.  Through the 1000Women campaign, EmpowHER is recruiting 1,000 women who will then each tell 1,000 women about this campaign. The goal is to create the biggest movement for women’s health and wellness in recent history!

Please support this fantastic event by clicking here.  My story can be found under ‘Rebeccaheart’.  If you like what you’ve read, please vote for me.  If you think others would benefit from it, please pass it on.

When the goal of contacting 1,000,000 women is reached, EmpowHER will donate $50,000 towards women’s health research, and YOU will have had everything to do with that!

Thank you for adding your voice to a very worthy cause.

Misplaced Pride

Women are a unique breed.  This is especially true of women with heart disease.  Why do I say that?  For all of the empathy and care we shower on our loved ones, we constantly neglect ourselves. 

Once diagnosed with heart disease, we attempt to live life as usual.  We continue to work, clean the house, shuttle the kids around, make dinner, etc.  All the while suffering in silence.  Is this because women are somehow able to rise above the pain and ‘push through it’?  Not in my case.  Truth be told, I’m the biggest wimp around. 

Perhaps the reason lies in our motivation.

Family First

Ask any women if she believes that her family should come first and the answer would be yes.  That’s just how we are hard-wired.  To be sure, it should be that way.  We pride ourselves on our ability to care for our family’s needs.  We relish the successes our family experiences and may even pat ourselves on the back now and again.  All fine and good…to a point. 

Here’s the question: At what point do you quit pushing yourself passed your set limits to help others?  Do you really think that, by doing so, you are helping your family?

A Prideful Heart

Perhaps it can best be explained by way of example.  Last week my family and I went to Disneyland.  As usual, my husband asks me if I think I’ll need a wheelchair.  It’s 8:00AM; I feel good so I tell him that I won’t need a wheelchair.  The look in his eyes was one of disbelief/confusion/annoyance.  He says, “We both know you won’t be able to make it down Main Street let along walk all day long!” So why did he ask the question?  He did so to help me realize that my decisions regarding my health directly affect him.  Poor guy, had I insisted to skip the wheelchair, he would have had to walk clear to the other side of the park!  I wasn’t about to do that to him again. 

The bottom line is my pride got in the way.  I know my limits.  I’ve had this silly disease long enough to know what I can and cannot do.  Still, I experience what I call ‘selective memory’ on occasion.  I’ll have a good day, maybe even two.  All of a sudden I think I’m back to my old self.  That is until I insist upon pushing myself ‘for the greater good’.

Do yourself and your family a favor; let go of the pride.  Admit you need help.  Don’t be embarrassed or ashamed to ask for it. 

Heart disease may not show on your face, but pride can be seen a mile away.

“I felt so sorry for you.  I didn’t know how I could help you.  All the doctors you saw said there was nothing wrong with your heart.  It took five years to finally get a doctor to listen”.

The conversation I had with my husband last week nearly broke my heart.  You see, all this time, I had neglected to see how my condition had affected my husband.  It has now been eight years since the onset of symptoms.  Eight years of worry for my family. 

It’s one thing to have to wrap your own mind around a chronic condition.  To somehow express to your family the anguish and worry your constantly feel.  All the while trying your best not to let the acknowledgement crush you.  Sometimes your family understands, most times they act like they do.  How can they fully understand?  I’ve heard it said that to empathize is to feel your pain in my heart.  Perhaps it could be better said, I feel your heart pain in my heart.  Is that even possible?

Help Them Understand

Men are different creatures all together.  If your husband is anything like mine, it’s all about the facts.  While emotion plays into everything in life, when it comes to heart disease, it’s the facts that enable him to react.  So, get your facts straight.  Learn all there is to know about your specific form of heart disease.  Share this information with all those you hold dear.  Thankfully, we have so much more information online than we did even a few years ago.  Websites such as EmpowHER offers health professionals who enable you to ask your health question and get a response with 24 hours.  Free of charge, no less.  So, really, the opportunity for you to take charge of your condition is yours for the taking.

How They Can Help You

First and foremost, let them help you.  Yes, you are the ‘expert’ on your condition and only you can know the depth of its affects on you.  That doesn’t mean that they don’t have anything to contribute.  The best advice you’ll ever receive doesn’t come from within.  It comes from your friends, from your family, and from your online community. 

Second, appreciate them for the situation they find themselves in.  Life was drastically different before you had to go and get heart disease.  Let them take the necessary time required to grasp that concept. 

Healing begins with understanding.

It’s Not In Your Head

I know I’ve touched on this topic before, but I think it’s time we revisit it.

It absolutely breaks my heart to hear from all of you and to hear how difficult it has been to get a correct diagnosis.  Without exaggeration I can tell you that I know exactly how you feel.  The numerous trips to the ER in the middle of the night… the incredulous looks from doctors… the disbelieving family members.  Been there; done that.

While all of that is bad enough, what is borderline dangerous is when those of you with valid heart trouble are referred to a psychiatrist.  Although perceived as an attempt to help, what this actually does is discourage you from further pursuing a diagnosis.  Are the doctors to blame?  That’s hard to say.  How can you blame a doctor who hasn’t been trained to diagnosis the heart conditions specific to women?  He (or she) can only diagnosis what they know.  What, though, if what you are experiencing is outside of their area of expertise?  Then the burden of proof falls to you my dear.

So, what do you do now?

DON’T GIVE UP

Yes; I meant that to be in all caps.  It’s not that I’m yelling at you… I just really want you to get the point.  Nobody knows better than you when there is something wrong.  I don’t care if you’ve been to the ‘best’ cardiologist in town.  Find a better one in the next town over!  Travel further than that if you have to.  Just don’t give up!

So many of you write to me and tell me that, if it wasn’t for your loved ones, you would have given up a long time ago.  Remember them the next time your heart hurts.  Find the answers you deserve for them.  While they may not fully appreciate the lengths you are going to at present, they’ll thank you when you are on the road to recovery. 

Written in honor of Catherine.

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