Approach vs Avoidance

One of my favorite blogs, Heart Sisters, recently ran a repeat of an excellent article on why we so often do not heed our physician’s warnings of adopting a healthy lifestyle. You can read the article here: Heart Healthy Advice

My own doctor (the general practitioner) is an aggressive proponent of healthy living and over the years has lost patience with my lack of self-discipline. Although I love his painfully honest style, I find myself avoiding an appointment with him just to avoid the inevitable lecture. The last time I was in to see him (months ago, as I keep postponing my checkup) he gave me a raised-voice talking-to that left me feeling ashamed and very much like a child whose parents love her no more.

Guilt is a life partner that looms ominously in the background to keep me aware of my failures, and this particular doctor appointment fed the monster like an all-you-can-eat buffet. Weeks of ignoring the monster softened the blow, but the trauma remains. I’ll reschedule that appointment, but not until I’ve lost enough weight that “Doc” will be proud of me.

In the past he’s tried the approach goal with me but because of my own lack of self-discipline, those talks yielded no change in my habits. I was plowing through life, full steam ahead, living on caffeine and cigarettes, and eating whatever I wanted in ridiculous proportions. Weekends were a bourbon and food celebration of making it through another week working my butt off in a job that didn’t suit me at all.

After reading the article referenced in the Heart Sisters blog I pondered what might have worked with Doc’s lectures to motivate me to really implement a healthy lifestyle. Counseling, perhaps? A group of friends didn’t work for me; those precious gals couldn’t be with me physically and it was so easy to mislead them to think I was on my best healthy behavior. I honestly don’t know the answer. What would have built my self-discipline enough to win this battle?

Perhaps more self esteem.  Caring enough about myself. Loving myself. Ugh. That’s a subject for another time.

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Just to Let You Know

Yesterday morning arrived with the best attitude ever and a burst of energy that caught me by surprise. For a few hours I tackled one project after another: dusting, paperwork, tidying…I even opened the blinds to let the sunshine into this otherwise appropriately named “Man Cave” in which I spend most of my days.

I even sang a few bars of some old favorites! Oh to sing again!!  My heart soared!

And then it crashed.

The coughing began a little before noon and continued mercilessly for four hours, intensifying so much that I doubted whether I’d survive. That is, in spite of the ICD in my chest.

Weak and lifeless, I remained in my chair, thankful for its spiritual and physical comfort. Here I am eighteen hours later, still so weak that even tapping this out on my laptop will require a period of recuperation.

I’m not giving up; I’m just resting. And with an open, realistic mind I believe I’ll work on my Last Will and Testament a little more. It’s actually fun to think of giving away all these things I’ve collected over the course of 52 years.

Before I forget…I am profoundly grateful for the snowy view outside my door. Just between us, I wonder if it’s the last one I’ll see.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

The Proverbial Rug

When faced with an unexpected medical diagnosis of dilated cardiomyopathy, one feels the “rug pulled out from under” dynamic in full force. We may float around in the pool of self-pity for a while, but most likely we’ll exist in an anti-gravity capsule with no sense of direction or purpose.

We try to stay alert and focused as we wait for a clear indication of the next step in our journey but it’s so difficult to hear – equally difficult to see – while floating in this soundless, odorless, dim capsule, our bodies surrounded by thousands of memories of our finest – and less than stellar – moments, and questions that have no answer. Death seems imminent as there is no longer a clear view of our future that once seemed so very promising. Darkness lurks in the capsule corners and we watch, attempting vigilance to keep the darkness at bay.

There is no exit. There are no instructions. There is no beauty and no breeze.

There are other capsules that float nearby but the inhabitants, like you and I, are alone and confused. Some are flailing wildly, overcome with panic, and some have closed their eyes in surrender. Most remain awake and observant, like us, waiting for the epiphany of a MacGyver-esque escape plan or a maybe a hero who will burst through the isolation with answers, instructions, and comfort.

As time passes slowly the Encapsulated Ones go through the motions together…isolated…alone.

Six months into my own encapsulation, I can look back and clearly see the path I’ve traveled even though the path ahead remains foggy. There were days when the darkness of depression consumed my isolated world, and there was a day or two that I closed my eyes in surrender to it all. Even though there is still no exit I have been visited by many heroic souls who decorated my capsule with colorful – sweet, blessed color! – messages of love.  My capsule is more comfortable now.  My world is less stark and I am more content.

At this random moment there is an inaudible message that permeates the capsule and fills the air around me. My world has changed and I cannot return to the exact being I was before the encapsulation, but that does not mean I will cease to exist. Call it a second chance, a new start, or whatever you like, but it is an opportunity to continue to live my life although with a different purpose and direction. This is not the end, but the beginning. I am profoundly blessed to have spent this time in my capsule, learning that I am loved by so many more people than I ever imagined. It has been a precious and wonderful gift to know that my existence has meant something to this world. I have worth! I am loved! I don’t have to know all of the answers to my questions right now; in fact, I don’t have time for that right now.  I’m in a hurry! I have an idea – no, I have several ideas! I can do this, or I can do that! I finally have time for those, and those, and those, and those!!  Oh for crying out loud – I am READY!

And with that, my being moves past the capsule boundaries and toward the purpose that awaits me there. I do not look back. I cannot go back to being the person I was, and I accept that with a grateful, albeit tired, heart.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

And then there was…

…a good day!  Surprisingly, sleep would only stay with me for three hours last night.  This is not a good thing for a heart with DCM (dilated cardiomyopathy).  There are even theories that sleep apnea is a viable cause of DCM.  In spite of this fact gnawing at the back of my brain, I could not force myself back into sleep when I woke up at 3:30am.

I got up out of bed, thinking I would be able to have a nap this morning before driving into town to run a couple of errands.  That didn’t pan out either; no morning nap to make up for lost sleep.  What the heck?!  Giving up, I readied and steadied myself and hopped into the truck for the 40 minute drive to “town”.

The summer heat wasn’t a problem even though the truck windows were down and the elusive sleep monster must have stayed at home because my body and mind felt awake, and….stronger.

Dare I allow myself a sliver of hope?  Am I getting better?  Five weeks after the ICD implant, five months after the initial diagnosis, maybe…just maybe?!…I really am getting better!

The dry cleaner’s, the oil-change place, the electronic cigarette place, the bank, and a drive thru for a sandwich and diet soda to accompany me on the way home.  Walking was at a minimum, and manageable.  My mind ran an inventory of internal organs and external limbs and found no duress nor the typical exhaustion that would be expected.

Arrival at home, a few minutes of putting things away, and then to my chair for a well-deserved nap.  A nap that doesn’t come.

Why am I still so awake? My legs are starting to swell and breathing is getting a bit labored but no sleep yet.  My mind then begins to replay the events of the day.  Did caffeine sneak into play at some point when my eyes were looking the other way?  Did the body receive its medicine in a timely manner? Hmmm…I honestly had no idea, and it’s definitely perplexing.

It’s 10pm now and there has been no nap but plenty of resting on my laurels.  My ecigarette catches my attention and there is a sudden realization that the liquid I’ve been using for two days has twice as much nicotine as the 0mg-6mg liquid I typically use.  Maybe that’s it.  At this point it doesn’t matter.  I’d very much like to go to bed now but my son is still out with friends and I won’t rest well until I know he’s home safe.

So there it is.  I’m so exhausted at this moment that I’m miserable.  I’m hoping tomorrow morning will find me rested and ready to go, because I’m planning yet another trip to town.  Have to keep pushing the boundaries, you see, or I’ll never know the full extent of my capabilities.

Goodnight. May your sleep be peaceful and your dreams a soothing balm for your tired soul.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Walking a Painful Mile

The old adage “walk a mile in his shoes” is a good credo to weave into your way of thinking. Consideration of others and a nonjudgmental attitude goes a long way toward lifting spirits and making the world, frankly, a better place. Scripture also warns us not to judge others. My favorite is Luke 6:37.

For those of us with chronic internal pain or limitations like congestive heart failure and osteoarthritis, this attitude defines our world. Don’t judge me if I just cannot summon the strength to talk with you on the phone. Don’t accuse me if you see me hobbling slowly around the grocery store. Stop yourself when you start to feel impatient with me.

Memes abound on social media now that encourage us to evict the negative people from our lives because they’re slowing us down. Let me just take a moment here to tell you, in all your self-centered righteousness, that maybe you need a little slowness in your life. Maybe you need to come spend some time with me so you can appreciate your energetic life. Maybe you don’t “need” me in your life, but just maybe I need you in mine, you self-righteous snob.

Spend a day walking in my shoes, if you have the guts. It’s no picnic in spite of the fact that I do not whine to you daily about how terribly handicapped I am now and how much I hate being handicapped. Put on your “big girl panties” and get ready to give up…totally give up…the life you have known. Get ready for a few surprises:

  • Getting up from a sitting position is difficult and painful (this includes getting up off the toilet)
  • You cannot trim your own toenails anymore
  • You cannot lift your left leg, so climbing in and out of the shower requires the help of the fifteen-dollar handicapped stool you have to keep in the shower to sit on because – you can’t stand that long without excruciating pain
  • You’re already on three different types of medication for the pain, and six more because of your congestive heart failure, so popping an Advil isn’t an option
  • You can’t cook anymore. Standing in the kitchen even for the 30 minutes it takes to fix a spaghetti dinner is painful and slow. Remember – you have to use a crutch to walk, so every step in the kitchen is limited to one available hand. By the end of the 30 minutes, you’re soaked in sweat from the energy you burned up moving around. And think about it – how do you get that pot full of water from the sink to the stove? By carrying one manageable container at a time from the sink to the pot. How do you drain the pasta? You ask for help, or you dip it into a container to haul it to the sink where the colander is waiting.  No more quick, two-handed, two-legged moves.
  • You can’t go to work anymore. There is no more praise from the boss, no more team challenges, no more laughs from colleagues, and no more feelings of accomplishment as a corporate team.
  • You are confined to your house most days. Isolation imprisonment. Which, frankly, you don’t mind too much because your personal hygiene habits are going by the wayside.
  • You cannot clean the house, and you cannot afford a maid. So you sit among nose-burning dust, tumbleweed dog fur balls, and cobwebs galore. You’re not afraid of spiders anymore because you don’t have the strength or mobility to fight them.
  • You sleep on scratchy, dog hair lined sheets on the bed most nights because pulling off the comforter and washing the bed linens is literally an all-day project.
  • Are you still reading? Or perhaps you’ve already grown tired of the list and you can’t imagine ever allowing life to imprison you this way. “I’ll work through the pain,” you think. Yeah. Right. That’s what I thought too. Sit tight, Starbrite. You ain’t seen nothing yet.
  • Intimacy is a thing of the past. There is no position that doesn’t hurt or leave you exhausted.
  • Every single day you have to face the fact that you are just a fraction of the person you once were
  • Your mind wrestles with depression every day. EVERY day.
  • You can’t eat, because with such limited activity, everything causes weight gain.

I could go on, but for your sake I won’t. You’re damned right I’m angry. I’m trying to accept this; trying to get on with what’s left of my life, and trying to remain positive for your sake.  I’m going to leave you with two simple thoughts:

  1. To the nonafflicted:  STOP JUDGING OTHERS
  2. To the rest of you (us):  STOP JUDGING YOURSELF!  You do have a purpose, and there IS hope, and although this is a different life, it is still your life, and you are going to figure it out and be amazing.  Stay tuned for that post.  Fun times!

As for now:  I need a nap.  That was a lot of emotion.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Leaky Emotions?

My darling husband drove me into town for my annual check up with the eye doctor this morning. Yesterday he had to work from home so he could take me to visit the heart clinic to check the ICD implant wound and the ICD itself to make sure everything was in working order after the implant two weeks ago. It pains me to be so dependent on others, but that’s another post.

After the eye doc appointment this morning we went to my favorite store – Home Depot – to pick up two things. I walked from one front door to the other across the front of the store. Not a great distance.

Then a 20 minute rest while we ate cheeseburgers in the truck – thank goodness for drive throughs!

On to a small town type grocery store where I stubbornly hobbled along with my cane instead of using a motorized cart. Trying to get a little exercise here and there.

But by the time we got home and I collapsed into my recliner, leaned back and closed my eyes, it was too late. I was beyond exhausted. I could barely speak and the pressure-pain in my chest was worrisome.

Is exhaustion an emotion? I don’t think so, but is there a state of being more intense than exhaustion? I can’t think of an appropriate word to describe it, but it’s the state of physical exhaustion to the degree of leaky emotions. You know what I mean: when your eyes are tightly closed and you finally fully exhale, relaxing every muscle in your body and a warm teardrop slides down your cheek. Then another, and another. Just a few though – and it cannot even be defined as crying.

It’s not crying. It’s all that determination and courage you had to employ to get through the past four hours – at least what is left of them anyway. You let them flow, take in a deep breath and then let it out slowly. Just as quickly as they began, they end. No more tears. Just a sweet, wonderful, lifeless kind of surrender that can only be understood by those who have walked the tightrope between life and death.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Progress, By Another Name

“You’re making progress.”

Am I?  The very word would imply a marked improvement of circumstance or situation, wouldn’t it?  Progress measured in leaps and bounds.  Progress worthy of a teacher’s gold star.  Progress of a civilization changing its culture across millions of acres, hundreds of thousands of lives.  Progress that can really be seen.  Detectable progress.

Since the implant surgery one week ago today (AICD: Automatic Implantable Cardioverter Defibrillator) I’ve not felt like doing much other than sit in my trusty recliner and watch television.  Even balancing the checkbook has been too monumental a task.  Not so much for the lack of physical energy, but more so for the lack of ambition.  Maybe the dread of seeing how the loss of my income has strained our lives so much.

Today my husband drove me into town for a nice dinner date.  He’s so good to me, but that’s a post for another day.  At the restaurant of course I had to hobble in with my cane, and he kindly let me out and picked me back up at the front door to minimize my steps.  As we were leaving he asked if there was anywhere else I would like to go.

“Yes,” I said, my voice weak from conversation over dinner.  “I’d love to shopping, but I’m just too tired.”

He sensed my unspoken lament and said, “We’ll get there Baby.”

“Will we?” I asked.

He went on to explain how I’m already better.  How I’ve already made progress.  I suspected he was either exaggerating, trying to soothe my aching heart, or he’s just not been paying attention.  Then he lined it out for me: “Today, for example.  You took a shower, then you put your makeup on, then you even helped me gather the recyclables together. Then boom…we got right into the truck and came to town.  Just a few weeks ago the shower alone would have exhausted you and required two hours of recuperation in your chair.”

Well I’ll be.  He’s right.  Amazing!  I am making progress, and praise be to God it may not be in leaps and bounds, but in my mind and in my tired, oversized heart, it’s blessed, beautiful progress.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

A Bad Day

Let me hide behind these four walls

With only myself to blame

Body, spirit, and mind are worn

From dealing with the pain.

Please don’t ask me to talk with you

Don’t ask me to be kind

Don’t accuse me of just laziness

For wasting so much time.

Every fiber of energy I can pull

Every shred of hopeful light

Must dedicate itself to choose

Not death, not yet, but life.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

Old Habits Die Hard

Old habits die hard, and evidently so it goes with old science.  The Internet is filled with tons of information both good and bad. The pitfall seems be that unlike the most recent edition of an old-fashioned print encyclopedia, you cannot be certain that the information you’re viewing on your computer is indeed the most recent information available. So you have to research the research to learn the date of that particular piece of information. If the information is medical and sixteen years old, conventional wisdom states clearly the information surely must have been superseded many times over.

“You have Nonischemic Dilated Cardiomyopathy,” the cardiologist said to me, “Your ejection fraction is 10-15%”.

Still in a fog from the sedative used during my catheterization, questions were rolling their way through my mind but quickly became lost before arriving on my tongue. “Oh,” was all I could muster. Comments from staffers at the hospital and fellow patients went something like this:

“You’ll take the next three months off work and rest.”

“You will probably not be able to return to work at all.  Start applying for disability as soon as possible.”

“Oh Honey, you’re so young.”

“You need to start exercising and lose weight.”

“Do not exercise under any circumstances. Don’t worry about losing weight.”

“A lot of people live normal lives with an EF [ejection fraction] this low.”

“Here, sign this.”

“Here, sign this.”

“Here, sign this.”

One after another staffers wandered in and out of the ICU room with papers informing me of ridiculously basic things like “Eat a heart healthy diet,” supported with ten pages of poorly-copied information that might have been interesting – or legible – if presented in color on a quality printer. As I looked through them and tossed them into my recycle bin at home, I had to wonder if these staffers received their salary and benefits documents in the same careless way. Ah, but I digress…

Anxious to find all of the answers that were unattainable through the staffers and clear up some of the conflicting information, I turned to the internet. There I learned that this condition affects only one person out of every 10,000 and the mortality rate is 50% within 5 years. There is a legitimate concern of Sudden Cardiac Arrest, and that turns out to be the number one killer, so to speak. Treatment includes three months of inactivity (rest) combined with a regimen of medicines that will slow the heart rate, remove excess liquid from the body, and add potassium all in an effort to help the heart function efficiently. Heal? No, rather, reduce in size and pump slower, allowing the muscles of the heart to continue functioning. The studies were thorough, but were dated 1999 – a full 16 years ago. Surely there have been more advances and studies since then, right?

Good luck finding them.

Lamenting the lack of information to the cardiologist, the general practitioner, and the pulmonologist resulted in a playback of their comments from the beginning of it all:

  • “Keep living your life as you normally would just be careful and don’t push yourself too hard”.
  • “Do nothing but rest for the next three months: no work, no cooking, and no cleaning, just rest and take these medicines.”
  • “Here is some updated information for you (accompanied by another ten pages of printed information full of underlined links that obviously cannot be “clicked on”).”

Wouldn’t it be nice if this supposedly life-altering condition came with a real manual? A Guide To Dilated Cardiomyopathy: Answers to Every Question You Could Possibly Have.” Yes, oh yes, that would be grand. Perhaps I’ll start on that straightaway. Perhaps this condition is not as rare as previously thought in 1999 and maybe….just maybe….it’s not as deadly, either.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016

If It Must Be, Let It Be Me

After receiving a diagnosis of Dilated Cardiomyopathy – for the second time in my life – I’m struggling to make sense of it all.  I’ve lived half a century on this earth and have no idea how much time is left in my visit here.  There is no need for obsession or regret, and there is no room for cries of “why me?”.  If someone in my circle of life must carry this disease/condition, I would prefer that it be me.  As martyristic as that may sound, there is a simple arrogant logic: I am best equipped to deal with it.

My children are grown adults, my husband is loving and supportive, and I have a great network of family and friends.  I have the chutzpah to push through questionable situations, and the tenacity and strength of soul to manage life in spite of the challenges.  So if it must be, let it be me.

Now to other things:

  • Working on the Last Will and Testament
  • Working on a formidable Bucket List
  • Making an extra effort to show love and understanding to everyone in my world
  • Trying to figure out how to pay bills with no income
  • Forcing myself to move through the intense, unforgiving pain of osteoarthritis
  • Managing stress, guilt, and all the other haunts in my mind
  • Trying to understand, improve, and get a solid grip on, my relationship with God
  • Finishing all the home improvement projects I’ve initiated in this old house
  • Observing and analyzing everything from the simplest pleasures to the most complex algorhythms

I’d love for you to join me on this journey.  The more, the merrier, as they say.  Be forewarned: I am candid to a fault, sappy, soupy, and even superfluous.  And I do use two spaces after each period – old habits die hard.

 

© Maria R. Conklin and Journey Of A Tired Heart, 2015-2016