Lily U Burns

Breaking Hearts

It has been sometime since I put fingers to keys and wrote on my "Queen of Hearts" blog. There is really not any good reason. Perhaps it is because lately I have felt "fixed". The 5th anniversary of my stroke crept up on me, and it was not until someone else mentioned it on Twitter that I remembered the day. A little voice in the back of my head kept telling me there was something of critical importance on 21 July, but I kept silencing that voice.

We have also moved, a big move: Boston to Abu Dhabi.  I had the comfort and knowledge that my medical care was sound and secure when we were in Boston. I lived in the middle of some of the world's best hospitals. And now, I am at a total loss when it comes to doctors. What hospital do I go to? What if something else happens to my heart? Will they even understand what kind of heart surgery I had following my stroke? I also pushed those fears to the back of my mind and told myself that nothing would go wrong - we would just make the move and deal with the challenges as they came our way.

I am now in a place where no one knows my story. Unfortunately, my story is not unique, and there are stories out there all over the world that are all to similar to my own. I recently heard of a heart breaking one... Jennifer Perillo's husband died of a sudden heart attack several days ago. Like my stroke, it was a sudden event, no warning. No one should have to experience that kind of loss.

I have never met Jennie, I have never met her family, but she and I have exchanged brief messages over Twitter. Her news shocked and shook me. It stunned me. And haunts me. And perhaps that is why I am typing again on the Queen of Hearts, because of the hearts that break every day and there is so little that can be done.

My husband and I learned something so valuable after that day in July and again after my open heart surgery several months later... Life happens and sometimes, when it does grief comes along. It is unpleasant, it is unfair, and often there is little if any any justification for what comes our way.

Remember to hold your loved ones tight. Tell them how you feel. Appreciate the here and now, and try to let the worries of tomorrow become a little less, as here and now is all we really have. And love as deeply as you can. 

Running up the Hill

It was spring in DC - full on SPRING. It has yet to travel up the coast to Boston. I spent a few days in DC with the American Heart Association as part of Lobby Day - time to speak to members of Congress about the importance of funding research in the areas of heart disease and stroke research. For example, did you know that for all of the National Institutes of Health's budget only 4% goes towards heart research, and 1 % towards stroke, yet heart disease and stroke are the Nation's number 1 and 3 killer... interesting little fact.

So there we were - more than 300 people from 46 states across the country to discuss heart health and stroke awareness. It was an impressive sight to be sure: the color red could be seen from afar. I wonder whether they listened. The Hill is full of lobbiests. Every day, every hour, every minute people traipse up to Capitol Hill and pitch their stories. At times it seems that it takes more energy than it is worth. It is a steep climb up that hill - both literally and then it is figurative for those of us dealing with heart disease and stroke.

And then, in an instant it changes. The stories come out:

-A young girl born with a heart defect who subsequently suffered a stroke

-A woman who has suffered several strokes due to a rare brain disorder

-A woman who has had three open - heart surgeries for valve replacement, and knows that the valve will not outlive her, so she will need another (she is only in her 40s)

These are not stories of older white men collapsing on a golf course. These are the people who deal with heart disease and stroke every single day. I hope that our trip made the incline on the hill a little less steep for those of us who have to climb it everyday...

Stepping forwards & Backwards

 
(image from www.zazzle.com)

 

So, I thought that I was going to be able to start "walking" the other day. NOPE. Michael, my PT (who is amazing), pulled out a calendar and pointed out that in fact 6 wks was the FOLLOWING day, and there was absolutely no way that weight bearing would commence a day early. I literally collapsed on the PT table (ok, part of the dramatic move was for effect, part was from pure exhaustion of holding myself up all day, but part was from utter desperation and the need to get off the crutches).  He explained that I would need to wait 5 more days.

Now, that being said, I was allowed to get on the bike and start using some resistance.  OK - I will take these little victories as they come, I thought to myself.  So I got to go on the bike. I started riding the bike and turned to Michael and remarked out fast I was going (it really felt fast) and then the bike's power shut off b/c I guess I was not going fast enough. 

I managed to hit about 40 rpm. Let me tell you - I felt freaking AMAZING (I might start training for the Tour de France). 

Minutes 1-3

"Come on Michael. I mean if am feeling really good, I can do this for like  20 min, right?"

(NO LILY, YOU CAN'T) 

Minutes 4-5

"Well can I do 10 minutes a few times a day... Oh wait, the machine shut off"

(LILY, try to keep pedaling at at least 40 rpm!)

Minutes 6-8

"Um, my heart rate is not really doing anything here..."

(YEAH, OK Lily, that is not really the point)

Minutes 9-10

"I think that 10 minutes is enough. I should ice after, right?"

Oh the joy of PT... I can't wait to see what happens tomorrow.

 

Well, Then, where do I begin?

I started this blog years ago, after a stroke.  Yes, I know.  You might be tired of that word.  I myself have started to grow tired of it, and I suppose 4 years later that is a good thing.  I actually never thought that I would shy away from the word.  For so long after the stroke, it became my central identifier.  And yet now it is merely a small part of who I am and it by no means defines me.

Since 2006, I have taken an active stance in speaking out about stroke and heart disease awareness.  In the beginning, I did it for myself.  Then, as time went on, I did it for people I knew who had suffered a stroke.  Some went on with their lives, and some people's lives were taken by stroke and heart disease. Now I am truly passionate about raising awareness, and it has become noticed.  Recently, I was contacted by Harvard Pilgrim Healthcare to participate in a program they started call "Well, Then."  This is a community of individuals who share ideas about being and living well.  Topics range from healthy eating to living with diabetes to (yes, you guessed it!) living with heart disease.

When Harvard Pilgrim approached me, I was intrigued.  They asked me to write a series of pieces and post some videos over a two month period and explained that I would be compensated for my work. Another venue to raise my voice, to share my story, and to quite possibly make a difference.  I thought about it.  I thought about it a while. I knew that I had a lot going on and with the upcoming holidays, some travel plans, and a pending knee operation, I wondered whether I could commit to the task. However, I kept thinking back to my own experiences with stroke and heart disease.  I did not know all of the warning signs of stroke and heart disease prior to my own experiences.  I did not know that heart disease was the nation's number one killer and stroke number three.

If I did know the signs and the symptoms, would it have been any different? Maybe, maybe not.  But if I am able to reach just one more person and make a difference, then in the end it is all worth it after all.

 

Frequent Patient Card

I should be used to it by now... the waiting, the anticipation, the news, the no news, the anxiety, and perhaps most prominent of all, the frustration.  Yes, after all of my numerous visits, countless tests, blood draws, scans, xrays, MRIs, I still hold out hope that the next time it will be different.  But more often than not, I am disappointed.

I am a repeat customer at my hospital.  If any one of my doctors spent time reading over my chart, they would see that I am an excellent client - good for them, bad for me.  Three knee surgeries, stroke, open-heart surgery, pneumonia, all within in the past 6 years.  Pretty good stuff, right, and for someone who has not even reached the age of 40.  And lucky me, I managed to do something to my knee again, two days ago.

Not just a little something, but something so painful that I am unable to put weight down on my leg. So painful that it keeps me up at night, and so painful that just looking at stairs causes panic.  You might say, well I am a klutz or I need to take better care of myself.  That is the irony of it all - low blood pressure, no smoking, and a fitness instructor, so stuff like this should just not happen.

But let's get back to the doctors, and my frequent "shopping" card at my hospital.  It takes very little for a doctor to look at my chart and see that when I am calling and asking a question, I am not trying to be difficult, but simply looking for a response.  I do not think that it is too much to ask that I receive a response in 24 hours.  So when I called my orthopedic doctor a while back and left a message that I was in a considerable amount of pain and it would be helpful to have the results, I was less than thrilled when I had not heard anything by the next day.  I called back almost 48 hours later and was told that in order to find out my MRI results I would have to speak to radiology, and my orthopedic doctor would be given another message but that he was really busy (yes, I am aware of this, the first time I met with him I waited in the office for 2 1/2 hours...)  Radiology told me they would not give me the results as my doctor needed to give them to me, and so I was being bounced around like a ping-pong ball.  Oh, as far as my pain goes, they told me to increase the Advil and I could come in for a cortisone shot.  Um, no thanks.  I have had one of those (2 in fact) and they don't work.  Neither, for that matter, does the Advil... And I informed them that I really looked forward to coming in and waiting to be seen.  It just rocks.

I suddenly was reminded of 2006 and the preparation for my heart surgery.  I was not given direct answers, and often the answer that most people agreed upon was a run around response.  So, I consider myself an "expert" in the medical system, and I am continually disappointed.  There should be some kind of points card for frequent visitors (patients) at hospitals.  You know, those of us who unfortunately are more familiar with some aspects of the medical care system than our own doctors are.

I know that my circumstances are by no means unique.  Sadly, my situation (the lack of response, apathy, and wait time) probably happens to most people.  Why is it that when a doctor treats patient with respect that it is cause for celebration?  Or when a patient is seen within 5-10 minutes of the scheduled appointment it is considered "on time"?  Yes, there are many other variables at play here, and I am well aware of these (patients can be late too etc), but as a frequent patient I think that expectations and outcomes should be higher. 

Unwelcome House Guests

You probably do not know me.  In fact to you, I might very well be a stranger.  But I am sure that you have met my close friends:  heart disease and stroke.  You might even know them better than I do, for I have only had the most intimate of relationships with them since 2006.

I met heart disease years ago, but not on a first name basis.  Heart Disease wanted to meet my grandfathers first and become close friends with them before truly stepping through the doors to my own life.  When I was a small child I remember tracing the long scar on my maternal grandfather’s chest with my fingers asking him to tell me the story behind the scar over and over again.  Such a big scar, and such little fingers trying to understand the depth of what lay behind the incision.

In the sixth grade, heart disease decided to visit again.  This time, to my paternal grandfather.  The visit was such a surprise that we did not have time to plan… heart disease just came in, and when it left, it decided to take my grandfather from us.  However, at that point in time, I still had small hands, and there were no scars to trace with my fingers, we only had pain left behind.

Stroke then decided to stop by, and visited my maternal grandfather.  Twice.  The second visit devastated us all – however, it devastated my grandfather the most, as it left him incapacitated and bedridden for 14 years and eventually too sick to keep fighting.

I suppose my family gained popularity and status in certain circles, because both heart disease and stroke decided to visit me in July 2006.  Stroke made a surprise visit on July 21, 2006 and stayed for a while.  I later learned that heart disease (congenital heart defect to be specific) had actually stopped by on November 20, 1972 the day I was born.  However, it did not decide to make itself heard until stroke showed up.  I guess it was an attention thing…

The funny thing with stroke and heart disease is that they are the kinds of guests that never really leave.  They are always around, lurking in a corner, down a dark alley, and just waiting for the window to be left open just the tiniest amount so that they can come back.  Heart disease is the nation’s number 1 uninvited guest – stroke is number 3. 

You might not know me, but I am quite certain that you have met heart disease and/or stroke before.  They sometimes come without letting you know in advance of their travel plans.  They are not the kinds of friends or guests that you want to have in your home or in your family or friends’ homes.  They do not say please or thank you, and when they leave, it is not quietly and often a path of destruction is a reminder of their visit.

You do not have to think twice about my story or feel pity or remorse– I have started to move beyond these visits, and beyond the fear of a potential “next” visit.  I celebrate my life, with a new husband who recognized my signs of stroke. But think about yourself, your friends, and your family.  Understand the importance of limiting the impact of these unwelcome guests.  Support the American Heart and American Stroke Associations. 

Oh the places We'll Go Part 2

 

Selous... Southern Tanzania.  It was winter, and as the sun warmed our skin and the ground below, our feet crunched on the fallen leaves, and gave us the impression on fall in New England.

We were greeted by warm smiles and cool face towels.

We were met morning, noon, and night with exceptional views of the lake.

We were offered live entertainment at a moments notice...

 

And were introduced to the locals...

And this was only on day one!  

After sundowners and dinner we were escorted back to our tent by an Askari under a clear dark sky and we searched for the Southern Cross all the while peering into the night for what might come out.  We looked out into the night, waiting and listening for what might come... waiting for the next day.
  

Prometo

Prometo... That is what I told him on June 26 in front of 100 of our closest friends and family.  There was laughter.

(all photos from Jennifer Hathaway)

Filled with just the right amount of sweetness...

to make the memories last forever and ever.

 

A Pre-Wedding Ode

I learned a lot about the people in my life following my stroke and open heart surgery. You tend to quickly recognize who your true friends are and who are those people who are not so sure if they have the moral fiber to truly be there as you go throw a pretty life-changing experience.  Not to make light of it, but I think that the same is true of weddings.

I have heard  that weddings can bring out the worst in people.  True.  I have witnessed this first hand, but more often than not, it is at other people's wedding.  I am lucky enough to say that for the most part I have not witnessed this behavior, unless you want to include irrational rants and raves from the bride-to-be about scheduling, planning, and those tiny little details that one feels the desire to go over time and time and time again.  So, aside from that I have been - for the most part - lucky.  Lucky to the point that I have realized more and more every day how incredible the people are in my life.  We have an amazing group of friends and family, people with whom we have laughed and cried; people who we have yelled at, and they have yelled right back.  People who are wise enough to tell us when we are being foolish, and people who are innocent enough to think that aside from all of our faults we are super heros.

Between now and the day, we are allowed to behave like fools and feel like we have superhero powers. Because in my heart, we do have those powers.  We can, and will, do anything.

 

The Heart of the Matter

I suppose we are not really following what "most" people consider tradition.  You see originally we had an idea of renting a house in Spain and inviting about 20 people and getting married there.  However that idea was quickly dismissed and we are now onto an entirely different adventure.  Not better, not worse, just different.  That being said, we are doing our best to incorporate as many elements as we can from our original idea.  We still have a small concept.  Yes, the guest list has grown from 20 to about 120, and the location is national versus international.  But we hope to still capture the intimacy of the original intent.

All of this aside, I find it fascinating that as intimate as a wedding is, everyone has an opinion about how and what should occur in June (and I mean everyone!).  

I was recently asked by an almost stranger about my wedding plans.  When she found out that I was not going to be married in a church, a slight gasp escaped from her lips.  When she heard that there was no wedding party, she seemed utterly confused.  And at the mention of no sit down dinner or wedding favors she simply said, "Well...that is unique."  Yes, thank you, it is unique and rather fabulous.

Everyone has an opinion, and while some are really better left unsaid (although they make for great stories) there are some that I have taken to heart.  These are the opinions from my dearest friends.  Many of them have told me time and again how important it is to do what we want to do.  To not have the wedding that other people want us to have but to have the wedding that we want to have.  I do not want to look around on that day or think about that day in the weeks, months, or years to come with any regrets, and at the rate that we are going I do not think that will be the case.  At the end of the day it is about celebration, love, and our friends and family. (Oh, and it is kind of about the cake too...)  But most importantly, whether the guest list is 2, 20, or 120, it is about the two of us.