Remembering Joyce

Yesterday, our wired  sister Joyce passed away from complications unrelated to her heart issues.  To many in our community, Joyce was a breath of fresh air who frequently liked to discuss in chat or post on her FB page weather statistics.  Although Joyce lived in Maine, we shared similar weather (in western Wisconsin).  Joyce bragged about her granddaughters, who were grown women, but in a way of deep pride, Lisa loves working with animals and boy does she like her Jeep.  Trisha experiments with cooking, the same way I have. 

Joyce and I had a special friendship, and it was her frequent discussion in our Saturday morning WIRED chats about the many kinds of pies she liked to make that led my husband I to plan our vacation around those pies!  We took our first trip to Maine, spending time in Kennebunkport and further north, in hopes of finding moose.  We arrived at Joyce’s home to meet her entire family; son John, wife Norma, granddaughters Lisa & Trisha; their boyfriends, and another surprise — our own wired sister Jean-Marie, who as it turned out, lived in the SAME small town as Joyce.  There were 5, count them — FIVE pies that Joyce had made special for our party.

It was a really special day, and one that helped cement our friendship, two years later, Joyce came to visitSONY DSC us for 9 days (June 2014); it was an experiment of sorts, to see if Joyce could handle traveling alone and managing her oxygen machine — in order to attend the 2015 WIRED4LIFE Gathering in September.

We had a wonderful time; SONY DSCshe had always wanted to check out an IKEA store and we just happened to one near the Mall of America.  We spent an entire day there, enjoying lunch in the cafeteria and exploring the store.  It was really fun!

I also introduced her to my lSONY DSCocal friends; Joyce and I made a special meal to serve at this luncheon.  Mari, Marge, Nellie, Steelie and I regaled Joyce with the stories of how we had met.  We added Joyce to our circle, and we oohed and aahed over the delightful pecan pie.

One Sunday afternoon we took Joyce to see the llama’s, a friend has a farm out in the country.  It was a great day!  Rest in peace, sweet Joyce, until we meet again! xoxoox

 

The language of friendship is not words but meanings. ~Henry David Thoreau


 

 

 

 

 

 

Third World Heartache

There is no greater heartache than being told you need something to live and not being able to afford it.

Federico Alfaro, MD, a Guatemalan physician, was treating a seventeen-year-old patient. The boy had a heart condition cardiologists refer to as “heart block”, an affliction in which the heartbeat continually slows until one day the heart just stops pumping. The boy’s condition was curable. The problem was he was poor. Dr. Alfaro tried desperately to find financial assistance to provide the boy with the pacemaker he needed. But in the end he had to watch the boy die.

Heartbeat International has a long history of saving lives in developing countries. Cardiovascular disease (CVD) is the world’s number one killer, but it disproportionately affects poor populations that do not have access to healthcare and prevention awareness. According to the World Health Organization, of the total 17 million annual CVD deaths, 82% of them take place in low- and middle-income countries. Focusing on those populations, Heartbeat International currently works in 15 countries with a network of local doctors and hospitals who donate their time and expertise to help save the lives of their countrymen. We have three main programs:

  • Pacemaker Program – For more than 25 years, we have been saving the lives of patients (link to Our Patients page) that do not have the economic resources to afford the pacemaker and ICD operations needed to survive. Relying on our network of generous medical manufacturers, doctors, and hospitals, we have saved more than 11,000 lives!
  • Doctor Training- We host an annual workshop for our volunteer doctors to help spread technical and practical knowledge of the latest advancements in the cardiovascular field.
  • One Heart Global Cardiovascular Alliance – Our guiding vision, this alliance is our solution to the growing cardiovascular epidemic that is predicted to worsen in the coming years. We are determined to counteract it with the help and collaboration of other like-minded organizations.

If you’d like to make a very important donation to an organization that is desperate to help more people across the globe receive a pacemaker — please consider Heartbeat International.

Biotronik, Medtronic, St. Jude Medical and Boston Scientific are all partners for this organization.

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Heart Disease Wanted

Can you imagine if, mixed in with your junk mail were flyers advertising for heart disease?  Not for cures, but the opposite; for the actual disease?  Would you be mortified?  Would you think the world had gone wonky?

Were you one of the millions that was thrilled when the magazines stopped accepting advertisements from cigarette companies?  Or when Petco announced last week they would no longer sell dog treats that came from China?  I cheered!  Great news!  Save the people!  Save the doggies!

But when you continue to smoke cigarettes, eat whatever you want “damn the cholesterol readings,” and adhere to a life as a couch potato, you might as well know that you are contributing to your own heart disease (and diabetes, obesity, lung cancer, the list goes on).  Yes YOU.  It’s your fault.  You are to blame. 

You are telling heart disease; come get me.  Here I am. 

It’s not a pretty concept, yet this is what people do.

Is this too harsh a conversation to have?  I don’t think so.  I smoked through TWO pacemakers.  I knew it was bad for me, I knew it was extremely hard to quit, I made a lot of excuses and hid my habit.  But it’s hard to hide the stink of a cigarette.  I quit in 2008.  I breathe so much easier now, I’ve yet to have a cold turn into bronchitis, I no longer have a chronic cough, I am not wasting thousands of dollars on cigarettes ($60 a carton????), are you nuts?  I smoked for nearly 30 years, there was never a thought in mind of how much money I could save by quitting.  You need a reason to quit and it better be a good one so you never go back.  Do you know what it was for me?  My husband gave me an ultimatum, keep smoking or keep him.  Cut and dried.  No attempts to quit, “MUST QUIT.”  I called my doctor, she ordered Chantix, by the end of the first week I had quit and I never resumed.  I chose my husband, but in reality — I chose ME.  I chose to live.  Powerful words.

The entire month of February is dedicated to supporting and educating women about heart disease.  If you already live with heart disease — then I sure hope you understand that it’s your job to educate all of the women in your life about the risks; and then the choices.  The healthy choices.  Some of us are born with heart defects, some learn about the need for a pacemaker from the aftermath of a car accident, some took diet pills and wrecked their heart, some were born with pieces missing from their heart (walls, valves, etc.).  No matter what brought you to a life with heart disease, you are here.  Do you want to live a healthy, long life?  QUIT doing whatever you are doing that is counterproductive to that outcome.

This is preachy, I know.  But it’s for me — as well as you.  I’ve been sitting on an extra fifty pounds around the middle (my muffin top is actually an entire muffin!), I have pain in my knees and hips – this makes it hard to exercise.  But I have good days,  and when I have them — I need to refocus my energy on losing the weight and getting healthier, so I can continue to enjoy a long life with my husband, but even more so — for me.  To enjoy my own life; healthy and active.

The WIRED4LIFE fan page is to encourage, educate and provide a few laughs as we go through life together; but every now and again –  I realize, it’s time to crack the whip, tighten the belt, remind our friends and fans of why we are here in the first place.  What is your motivator to even be alive?  Your kids?  Your family?  Career?  ??  How about YOU?

 

 

 

You will live

The past couple of weeks have been incredibly challenging for me; regarding health issues.  Pain caused havoc on my physical & mental state of being, a torn tendon felt instead like a ripped piece of cartilage, pain like I had never known before.  As I battled my way through pain, a cold bug knocked me down hard, and for 72 hours I could not will myself out of bed.

During this time I was angry at my body for not responding to what I felt it needed; ice, heat, drugs, rest, fluids and crackers.  I could not sleep and was desperately tired.  The more I fought, the harder my body resisted.

The advice of others was lurking just past my state of normalcy.  “Slow down.”  “Rest.”  “Drink ginger ale.”  These all seemed ludicrous.  Yet, out of desperation I succumbed to the advice.  I drank an entire bottle of ginger ale (thank you, wired sister Nelly Schroevers!) in six hours, it felt so good on my throat, it seemed to calm my tummy.  I rested and slowed down to a snail’s pace.  I sat on the sofa watching all of my DVR shows, I napped frequently, I stayed off the computer and even my phone.  No one called.  No one asked of me what I couldn’t possibly produce.  No one expected dinner on the table or chores to be done.

I asked for prayer and let my own lapse, I didn’t have the energy to pray.  I didn’t have the energy to function as a human being.  I was letting myself off all of the hooks.  Just curl into a ball to get better.

As the pain raged and the incessant sneezing continued, I started to feel better.  It was actually pretty amazing.  I looked at the clock and it was 12:30 on Monday afternoon and I realized I hadn’t coughed in hours.

It was the prayers.
I believe this with 100% of my being.

As a sidebar, my sister likes to remind to speak in the positive.  So instead of saying:  “I’m not sick.”  You are to say:  “I’m feeling healthy.”

Lastly, know that no matter what is bothering you, you will live!  You will feel better!  You will smile again.  :)

HAPPY HOLIDAYS

On behalf of our entire wired community, I wish you a happy-whatever-you-celebrate!  May your heart be happy, healthy and may your time with friends and family be peaceful. In our home we celebrate Christmas, so I will share this poem with you! ~Dawn Huberty, Founder WIRED4LIFE

Celebrating a wired life

Today, one of our WIRED sisters celebrates the 5th anniversary of her pacemaker implant.  As wired people, I think it’s very important to make a big deal out of this day.  Balloons, party hats and cake for everyone!

hooray

Why is it so important?  Because it’s the day we were given a second chance at life.  For me, it’s the reason I am alive today.  I think that’s a pretty darn good reason!  Many years ago, I think it might’ve been my 10th pacemaker anniversary, my sister threw a little party!  We had cake!

What was your life like prior to your pacemaker or defibrillator? For me it was years of undiagnosed heart disease, chronic fainting spells and the last year prior, it was downright depressing and frustrating.

For many years I lived without the term “wired” in my vocabulary.  I didn’t even consider that I was “living with heart disease,” as I was so thrilled to have the pacemaker solve all of my heart problems that I literally never thought about it.

BOOM.

2004 arrives.  Time for a new device.  No longer a kid of 27, now I was 40 years old and anxiety was my middle name!  I had far more questions than answers surrounding this procedure and wished I had someone to talk to; someone that could hold my hand and calm me down (literally and figuratively).  I was blessed to have an incredible and supportive pacemaker nurse – but I still longed for ‘someone like me.’

WIRED4LIFE.

The journey began.  The quest to find women like me, and now – ten years later, I’ve found lots of women like me!  And they’ve founds lots of women like them, and they’ve started their own little groups on Facebook and these were offshoots of what began in 2004 in my head, and my heart.

happy-anniversary-heart-graphic-imageSo mark the date on your calendar of when your life began AGAIN and celebrate!  Make a cake, send yourself a card in the mail, honor the day that the word WIRED became part of your vocabulary.

 

 

And…no thanks is necessary!  I’m happy to have traveled this journey with you!  thankyou for sharing the journey

 

 

Never and that’s not possible

I’ll tell you what makes me crazy.  Device professionals (cardiologists, device nurses or manufacturers) telling someone “it can’t be done, it’s not possible, no, that would never happen, we can’t do anything about it.”

WE, on several occasions have told all of these people:  1) It happened to me, it is possible, I won’t live like this, I will not take no for an answer, etc.

I still receive messages from wired folk who are being told some of these ‘stock’ answers.  This is why getting a second opinion is very important when you reach a point of no return.  Make certain your appointment is at a NEW facility (not the same), and extra credibility if you were referred by someone you know!

When you live with a heart valve, stent, pacemaker or defibrillator, I can almost 100% guarantee that you will be living with this device the remainder of your life.  There is NO reason that you should ever have to ‘suffer’ or ‘live with’ pain.

Your doctor or nurse, device clinic or manufacturer exists at all, because of  YOU.

When our dog Max was a puppy, he got labeled at PetSmart grooming as being “difficult” and then received a mark on his folder, I believe it was a color system.  We were told this by one of the groomers that didn’t like working there.  So, Max was treated different when he came in for appointments, maybe he was even muzzled, I don’t know the details.  But when we got wind of this; no more PetSmart grooming.  We found a local groomer in town and she adores Max, she says he does best when we leave because he knows what is expected of him and he is a good boy.

People can become the same way; perhaps there is a note in your file; a ‘difficult’ patient, or demands too much, or asks too many questions or complains too much.

Bedside manner.  Does your doctor have a good one?  Does he treat you like a human being or a number?

I believe it starts at that first appointment.  When you leave, were your questions answered?  Do you feel like a nag for asking too many?  Did they make you feel rushed?  Are you afraid to talk to your cardiac team because you feel threatened by them?

YOU are the boss.  You give them a paycheck.  The patient has the right to be heard.

Be your own patient advocate.  Be heard.

 

 

Excerpts from WIRED4LIFE book

41KA7ez6DGL._SS300_Just in case you haven’t read my newly published book; WIRED4LIFE, I thought I’d share a bit of it with you. 

INTRODUCTION

It appears from your tests that you have “third degree heart block with syncope.” October 9, 1991. I heard these words for the first time. I finally had a diagnosis after 27 years.   A pacemaker implant the next day and my wired journey began.

I cannot imagine for a moment what my life would look like without WIRED4LIFE being a large component. The women I’ve met, the experiences I’ve had, the knowledge I’ve gained, the overall feeling of wellness. A path clearly marked now, by the footsteps of many wired sisters.

The idea for a WIRED4LIFE book has been living in my heart for a number of years. Many wired sisters and friends have encouraged me to write this book. I am starting with what I remember and what has been shared with me through the years. I pray you find your story here too.

 

From wired sister Sandy, who shares her own story in book:

It was during my research on pacemakers and settings that I found WIRED4LIFE. I will honestly say that initially I didn’t join as it was a ‘pay’ group. I had been visiting another group that is free but there was a lot of politics and while researching the posts could be helpful, the site seemed to have an almost high school environment – there was definitely an ‘in crowd’. I never felt like I belonged. There was a lot of technical information which for me, in the beginning, was needed. I like to know how things work and it allowed me to find a list of questions to bring to my doctor with questions, but I grew out of that fast.

Then I decided that I liked the idea of a group of women supporting each other. WIRED4LIFE has a much different feel. I’m still quiet most of the time, but I don’t feel like there is an ‘in crowd’. Everyone is ‘IN’. Everyone is equal and welcome

This group isn’t something you ‘grow out of’ it is a community of women that is evolving and growing and is there for each other no matter what. It is truly special and that is because Dawn is special and each of you are as well

We are fortunate to live at a time where first of all we have these crazy contraptions that can save our lives and in many cases improve them and that we live in this digital world where we can connect with people from all over and support each other.

 

And because I’m a huge believer in “laughter as the best medicine” the book ends with funnies shared from Facebook!  :)  The Q was if you had ever been asked a stupid or funny question relating to your device!

Helen: An elderly lady who had a friend with a pacemaker told me (before my first pm implant) that the procedure was ‘just like having your ears pierced’. I wanted to grab her afterwards and ask who the heck pierced her ears.

Claudia: The “strangest” comment I have had was a person I knew suddenly went into a long story about a friend who died and the “pacemaker” kept trying to keep them alive.

Jennifer: I had just turned 25 when I got mine. My daughter was in kindergarten and told her teacher that her mom had gotten a pacemaker. So her teacher thought I was in my 60’s. When she met me she said you’re a lot younger than I thought.

Kerri: Always the same “at your age?” Like heart disease is only a senior special.

 

There are 138 pages in between, many wired sisters shared their stories, as well as device manufacturer and cardiac-specific information, as well as the entire journey of mine – becoming wired, starting WIRED4LIFE and what it all feels like and looks like ten years later.

Wired4life: My Journey to Becoming Wired
by Dawn L Huberty
Link: http://amzn.com/1500909831

Thanks to all who have purchased the book, and a special thanks in advance for those who are sharing it with the world!  ~Dawn Huberty, WIRED4LIFE Founder

 

 

Why we do do do

On October 6th I had foot surgery; it’s been a challenge on so many levels.  Pain and restrictions kept me quiet on the sofa with good drugs and bad television to bide my time for a few weeks.

Then when I realized I could hobble around with a cane and knee walker, now it was time to get back to everything I had been silently seething over; stuff I couldn’t manage to do, or really ask anyone else to, either.  Like REORGANIZE MY OFFICE????  Not like move a few things around (stupid on a good day), but go through stuff, throw stuff away, make piles and fill bags and drag the vacuum out and rearrange and MOVE furniture (granted, plastic carts with bins, but still)!!!

I’m sitting in a room that looks awfully similar to “Hoarders” but I’m getting there.  But….I just received strict instructions from hubby this morning to RELAX, AND DON’T DO ANYTHING.  (Because massive shooting pain started occurring at midnight and continued long into sunrise).

I did.  I really did try, I should say.

I am stubborn.  Norwegian.  Virgo.  And.  Yes.  A.  Control.  Freak.

I am of the school that if it needs to get done (properly) then, I am the ONLY ONE WHO CAN DO IT.  I really dislike this side of myself.  It used to be something that was easily manageable with lists.  I was the QUEEN of lists.  But then 40 came and I started forgetting where the lists were and then I had piles of notes and lists and sticky notes and now I had more lists than chores.

I still keep lists, but they don’t really accomplish anything.  Probably because they are in notebooks and where did I put those???

I’ve ruined perfectly lovely events obsessing about EVERY.  LITTLE.  THING.

I am incredibly blessed to have people in my life that 1) know this side of me, 2) love me anyway, 3) call me on my $hit,  4) encourage me to keep growing, letting it go, ask for help, etc., and finally 5) take over when I’m having a meltdown.

Why do we have this need to constantly do-do-do???  Is it because there aren’t enough hours in the day?  Are we afraid to ask for help; lest it be seen as a sign of weakness?  Are we ‘women, hear us roar’?

It doesn’t matter if you’ve recently had a defibrillator implanted, hip replacement or teeth removed.  Take the time to heal, get better, rest.

But don’t follow my lead!!!  :)

Happy Healing!

 

Depression with heart disease

This is a subject that is difficult to discuss, but I believe a very important one.  I could have changed the title to “Depression with A, B or C health condition,” because it’s a likelihood for all who have chronic health issues or even a one-time health epidemic or condition.  However, I choose to always write about “what I know” so will share with you some of my opinions, relating to my journey in heart disease and depression.

dpression

I believe that depression may be higher in women, although I don’t have facts to back it up; as the primary caretaker of our family units, we tend to bear the brunt of “doing” for our family – so they don’t have to ‘do.’  And in all this ‘doing’ we actually push aside our own needs in order to care for them. It’s a vicious, vicious cycle.

When we are ignoring our needs, it tends to spiral out of control.  First comes physical neglect.  We are so busy running around to care for others (keep in mind, we may be home just a few days from having a pacemaker implanted or open heart surgery), and yet, it’s our job to keep the ship afloat.  We let ourselves go; not meaning to, or even wanting to, it’s just easier than trying to squeeze the time into our already crammed schedule.

Mental neglect sneaks in the back door.  We are forgetful, frustrated, we miss appointments and even trash day.  We snap at the people we love and are nice to the people we don’t know.

Somewhere in the middle comes depression.  It’s not just being bummed out that you can’t manage your life, it’s a deep, heavy cloak of judgement and pain.  It comes on gradually, people may comment that you seem so down, or if you would just take some time for yourself, you’d be okay.  (Oh wouldn’t that be a joy, to take time for yourself!).  But you cannot.  There is stuff to be done, and you’ve not been doing a good job getting it done, so the hole you dig, continues.

Let’s step WAY BACK for a minute. 

Hey — you just had something wrong with your heart.  Maybe you had a heart attack, or a device implanted in your chest,  maybe your arteries were clogged and now you are the owner of a new stent, or heart valve.  Blood thinners and appointments with cardiology and a list of things you can’t do and a list of things you MUST do, and sure – there is a support group on Thursday nights at the local library for those with heart disease, but it runs from 5-6 pm and you must get dinner on the table.  (Ooops, but I digress)….you — yes YOU have experienced something that takes some time to mentally and physically heal from.

You will be NO good to anyone else, if you can’t take care of yourself first.

Ask for help.  Reach out to those who really love you and you can trust to be honest with; “Hey, I’m drowning here.”

Depression can continue if not addressed.

Heart disease rarely is healed with a pacemaker or even a new heart.  If you’ve got heart disease, YOU’VE GOT HEART DISEASE.

So this is something to remember.  You are not alone.  You may feel alone, you may live alone, but we are here.  365/24/7  WIRED4LIFE — here for you, here to talk, to cry, to learn or teach.  We need what you have; a heart!

Option 1 Facebook:  WIRED4LIFE (Free resource, daily posts, drawings for goodies, a place to ask questions and learn)

Option 2 Core Group:  $20 yearly due. Includes all of Option 1,  Saturday morning chats, newsletter 4x a year, snail mail birthday card, member-only conferences and/or local events, private access to groups, special prize drawings and more!  Membership is by approval.

Whichever you choose, we are glad you are here on the journey with us.  No one is an island.  You need people.  You need support.  And we’ve got literally hundreds of years of experience living with heart disease.  And for those who think to themselves: “I’m okay, I’m managing, don’t worry about me, because I have everything under control,” we are here — for when you decide it’s too much, or you just need a friend.

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Because there is no such thing as “just needing a friend.”