Dear Reader;

Alas, it is time for me to put down the mouse and discontinue my blog, 'Rebecca's Heart'.

This blog has been instrumental in working through my condition. However, I believe that this avenue of therapy has run it's course. It is now time to move on to other, more satisfying, endeavors.

I would like to thank you all for your kind readership and, if my experience has helped even one person, then it was all worth it.

Good health to you!

Rebecca Fortunato

Filed under: Heart Disease

It’s not a _disease_; it’s a _condition_.

So says my fantastic doctor, Dr. Margo Minissian.  She said it in just the right way, too.  Not downplaying it, instead, focusing on the positive.

After all, when you have a ‘disease’, you sound so, well…._sick_! 

Let’s compare. 

1.) Disease: an impairment of the normal state that interrupts or modifies the performance of the vital functions.

2.) Condition: a usually defective state of health.

Both definitions have a certain amount of right to them.  After all, who among us would argue that chest pain et al ‘impairs our normal state; or impairs our functioning.”  And, clearly, who would argue that our state of health is ‘defective’.

SEMANTICS It feels more like a matter of he said/she said.  Take your pick; Heart _Disease_ or Heart _Condition._  Now, say it aloud.  Which sounds better to you?  I’m leaning towards condition.  It sounds like something I can fix.  Something that might go away in time.  Something that won’t kill me.

THE HEAR AND NOW Asking you, dear reader, to say both aloud may seem a bit odd.  But listen to the words as you speak them. 

Heart _Disease. _

Heart _Condition._

Decide which is better and incorporate it into your vernacular.  Who knows, saying it aloud might make it go away after all.

Filed under: Heart Disease

February is fast approaching.  The ‘red’ month… and I don’t mean Valentine’s Day. 

It’s a fantastic thing that a whole month is dedicated to raising heart disease awareness.  Anytime attention is focused on an issue that affects millions of people, it is a worthy cause. 

Overall, much is being done to spotlight what can be done to _prevent_ heart disease.  Heard this one before?  ‘Check your numbers’; ‘Exercise regularly’; blah blah blah.  It would seem that the only awareness being raised is on how best to avoid it.

Since we don’t have that option, what we need now is information on how best to _live_ with heart disease. 

COME TO TERMS There.  I said it.  It’s like anything in life; you win some, you lose some.  So what if I have heart disease.  Everybody has something to contend with.  What’s important is how you view it.  Does it define you?  Or, by living your life the best you can, do you conquer it?

 CHALLENGE YOURSELF Mentally, not physically.  That’s a given.  Truth be told, I spent the better half of the day in bed.  However, the other half of the day was spent doing the things I love most.  What is it that you love to do most?  Stop to think before you answer.  Sometimes the more profound realizations come when you are quiet enough to hear them.

 CONTINUE TO LEARN The beauty of the Internet is that it continues to evolve.  Six years ago, you’d be hard pressed to find _anything _on the Internet regarding Microvascular Heart Disease.  That is beginning to change.  So, we need to change.  We need to continue to read and to research and to learn all we can about our condition.  You never know… perhaps we can, in some small way, dictate the direction of our care.

 STRETCH FORWARD Like a cat waking up from a nap.  Your condition might be static, but you don’t need to be.  Expand your horizons.  Volunteer.  Take a course.  Read that book you’ve been meaning to.  Remember, its the small victories that add to the richness of your life. 

Make this a February to remember.  Join the most important cause imaginable… yours.

 

 

Filed under: Advice, Diagnosis, Experiences, Living With Heart Disease Tagged: Attitude, Cardiac Syndrome X, Chest Pain, Coping, Coronary Microvascular Disease, Decision, Depression, Heart Attack, heart disease, Ischemic, Living Heart Disease, Microvascular Coronary Disease, Women Heart Disease

For women, the symptoms of a heart attack are very different from men.  Dr. Smolens, Director of the Women's Heart Center at Banner Heart Hospital explains:

Filed under: Advice, Diagnosis, Experiences, Heart Disease, Living With Heart Disease Tagged: Chest Pain, Decision, Heart Attack, heart disease, Hospital, Symptoms, Women Heart Disease

‘Heart Disease’.  With these two words, the lives of millions of women are changed in an instant.

While there is a sense of relief in knowing why your heart hurts, it is impossible to predict how this knowledge will affect your life.

Beyond the questions lie the reality that your life has taken a dramatic turn.  Although chronic by nature, your viewpoint of your condition doesn’t have to be.  It would seem, though, that this is a lesson best learned in retrospect.

20/20 As in ‘hindsight is’.  I’ve always thought this to be a strange saying.  It suggests that looking back is the only way to see if your chosen path was correct.  It makes sense, I guess.  Looking behind is the best vantage point from where to view the road ahead.  Only from this perspective can we know if we’ve made the best use of our knowledge and time.  This is the place where changes can be made and attitudes can be adjusted. 

PANORAMIC VIEW If you’ve seen ‘Pride and Prejudice’, you’ll recognize this scene:  She stands on a precipice, wind blowing in her face, clouds float by intermittently shading her closed eyes.  When she opens them, she has made a decision; one that she sees only now; now that she’s found time to stop and see where life has taken her.  Though probably not the best time to mediate as she is standing on a cliff. 

 STEPPING BACK FROM THE EDGE Taking a moment to meditate on the past year has brought me to some astounding conclusions.  First and most importantly, I’m not alone.  While the numbers already suggest that, it’s the stories we share with one another that count most.  Secondly, the decisions we now make matter absolutely.  Will be chose to learn and share and live our lives or will we waste the time we’ve been given. 

While heart disease may be in your future, how you get there is your choice.

Filed under: Advice, Diagnosis, Experiences, Heart Disease, Living With Heart Disease Tagged: Cardiac Syndrome X, Chest Pain, Coping, Coronary Microvascular Disease, Heart Attack, heart disease, Hospital, Ischemic, Microvascular Coronary Disease, Symptoms, Women Heart Disease

What’s worse; suspecting you have heart disease or knowing for certain that you do?

If you answered that fear lies more in suspicion, you’d have research to back you up.  But do we really _need_ research to tell us what we already know?

STATING THE OBVIOUS Congratulations, Science!  Another fine example of useless information disguised as ‘research’.  It’s ridiculous to think that good money was spent researching what we already know to be true.  Of course we fear the unknown; especially when it comes to our health.  When something goes wrong, we turn to a doctor.  We ask questions.  When answers don’t come, our minds run wild.  Then we question ourselves.  “What is causing this?  Can they operate?  Am I going to die?”   

DELIVER ANSWERS; NOT SOUND BITES Anymore it seems that we, Joe Patient, need to rely more on ourselves than our doctor.  While it is true that no doctor can be completely versed in all-things heart disease, one would hope that they could recognize their own limitations. 

We read so much about heart disease; how stress contributes to it, how blood pressure affects it.  But it’s what we _do_ with the information that defines us.  Do we allow what we read to embolden us or lull us into quiet complacency?  Do we rely too heavily on the ‘professionals’ out there or do we take a more proactive approach to our health?  Are we waiting for them to make it right?

STOP WAITING So much of our time is spent waiting.  We _wait_ for appointments.  We _wait_ for test results.  We _wait _for answers.  Waiting takes your power away and places it in the hands of someone who doesn’t have chest pain like you do.

An ancient proverb states that ‘Expectation postponed is making the heart sick’. 

Waiting is a luxury your heart doesn’t have.

Filed under: Advice, Diagnosis, Experiences, Heart Disease, Living With Heart Disease, Microvascular Angina, Research Tagged: Cardiac Syndrome X, Chest Pain, Coronary Microvascular Disease, Heart Attack, heart disease, Ischemic, Living Heart Disease, Microvascular Coronary Disease, Research, Women Heart Disease

If asked if the current state of your heart disease is acceptable, how would you answer?

It’s a tough one; I know.  Just yesterday I was asked this very question.  “If, when we first met, your chest pain and quality of life was terrible, 10 being terrible, what number would you assign your quality of life now?” asked my super-hero of a doctor, Dr. Bairey-Merz.

Looking her straight in the face, I responded, “That’s a tough thing to quantify”.

How do you assign a number to the quality of your life?  Of course, I understood the question.  I realized that she needed a figure to determine where I am on my journey.  How else is she to know what to try next. 

Leaning back in my chair, I looked down at my hands and fiddled with my ring.  Slowly raising my eyes, I assigned a number to my life. 

“I estimate my quality of life currently to be a 3”.  Her face relaxed a bit, but I saw no smile.  “About 75% better than when we first met; would you agree?” she asked. 

That’s when it occurred to me.  Her face gave her away.  This was the best it would ever be.

THE BEST COMPARED TO WHAT? Every six weeks I visit my wonderful doctors.  With each passing week, however, something very interesting has happened.   My visits with both Dr. Bairey-Merz and the fabulous Dr. Margo Minissian focus more on managing my condition and less on curing me.  _‘Curing me’_….  Only now am I beginning to realize how stupid I was to think that I would be cured.  After all, I have _Microvascular_ heart disease.  You can’t operate on the tiny vessels around your heart. 

WHY COMPARE? I know my life will not be returning to the old ‘normal’.  To be sure, 75% better is better than 0% better.  Even still, the problem isn’t so much in the number assigned to my quality of life as in having to _assign _a number. 

It’s hard not to compare.  But remember; comparisons do one of two things; they either make you feel bad because others have it better than you or make you feel better because others have it worse than you.  Either way you lose.

So, I will stop comparing my current self to my old self.  I will stop comparing what I could do then to what I can do now.  I’ll stop comparing -- period. 

Call it a compromise if you will.  But life is worth living.  Nothing compares to that.

Filed under: Advice, Bairey Merz, Diagnosis, Experiences, Heart Disease, Living With Heart Disease, Microvascular Angina Tagged: Attitude, Bairey Merz, Cardiac Syndrome X, Cedars Sinai, Chest Pain, Coping, Coronary Microvascular Disease, Heart Attack, heart disease, Hospital, Microvascular Coronary Disease, Research, Symptoms, Women Heart Disease

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.

Filed under: Advice, Diagnosis, Experiences, Living With Heart Disease Tagged: heart disease, lupus, Women Heart Disease, womens conference

“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.

Filed under: Heart Disease

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

Filed under: Diagnosis, Experiences, Heart Disease, Living With Heart Disease Tagged: Fibromyalgia