Tag Archives: pacemaker defibrillator

Discarding my Obsessions with Understanding Death and Illness

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Today, another step in a positive direction;  I’ve officially turned off my Google Alerts for the following keywords:

  • Scleroderma
  • Mixed Connective Tissue Disease
  • Pacemaker Defibrillator
  • Heart Failure
  • Autoimmune Disease and autoimmunity
  • Lupus

Sure, it’s great to know what’s happening and at times I even find articles within these alerts that I write about here, YET they do more harm than help on my mental state most of the time.   Every single Scleroderma alert typically opens up with an announcement of someone’s death that is covered in a small town newspaper.  It talks about their fight with this incurable disease, and how this good person didn’t stand a chance against it… and while I purposely don’t let it affect me, it must do damage and terrify me on some level because I think of them from time to time.  Really though, who needs to read about death every day?

The thing is, I’ve gotta keep my head in the “game”, and my healing and positivity game when it comes to my condition is pretty on point right now.  I’m happy to let these obsessions go.  Once upon a time I felt like if I read every single piece of information regarding my condition(s) available out there on the web I would miraculously cure myself.  Like, if I could just wrap my head around these illnesses, or narrow it down to the very second I got ill, or my heart started failing, and somehow make myself understand, I would make it all disappear…

Happy to be at this point.  Baby steps, but progress nonetheless!  The only Google Alert that I kept?  My fave, Stevie Nicks.

The Pacemaker Defibrillator on Display

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It’s that time of year again when layers of winter clothes can no longer hide the metal box in my chest from the rest of the world.

The first couple of hot days that I wear t-shirts or tanks are always quite strange.  It’s easy for me to forget about my pacemaker/defibrillator (I call it my “Kicker“) while I’m out and about, because it’s just part of my body now.  But today was an eye opener.  I see people staring at my chest wherever I go;  kids wondering what it is protruding from my bony clavicle, the bank teller, the girl in the shop, and the list goes on.  People try not to stare but it’s the double take that gives them away.  I can actually see their thoughts taking form in their brains trying to comprehend “what IIIS that in her chest?!“  (Also, if they just asked I would be happy to show off my high tech piece of machinery).

I’ll get used to it just like I have every other summer since the Kicker was implanted –I just forget how “naked” it feels now that I have nothing to cover it up with.

Yet, I’ve always made sure not to hide my Kicker.  I am proud of her and I find that if you walk through life feeling ashamed of something it will do some damage to your psyche in the long run.

So, stare away everyone.  This Kicker is keeping my heart healthy and strong and pumping every day.  It is there to tell you that this woman is a warrior.

Figuring out an electric life

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Finally!  I was able to gain some weight over the last few weeks.  I love when I gain weight because it means that my body is healthy.  I also feel more like myself when I have a few pounds on — I don’t really dig the “sick” look when I’m lingering around 100-105 lbs.

The only issue with this is my kicker (pacemaker defibrillator).  Since there are three wires hooked up to my heart, they run throughout the left side of my body.  The “third lead” is a wire that goes into the back of my heart by way of my lower ribs/ left abdomen.  Since this wire is sending electric impulses with every beat of my heart the wire sometimes hits a nerve in my diaphragm causing my stomach to “hiccup” uncontrollably.  Usually this happens when I lie on my left side, or if I lie on my back a certain way.  Now that I’ve gained some weight however, it’s happening almost all of the time!  My body expanded so the wire is hitting the nerves in my diaphragm quite frequently.  My stomach is jumping all of the time now!  It is super annoying.  It takes my breath away every time it happens.

I like my weight and even plan to gain some more so we have to figure a way around this one…

Found Freedom

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It’s amazing what a few weeks absent of doctors does for me.

It’s obvious from this journal that I have become somewhat obsessed with healing myself which includes attending many standing appointments each week –most of which I have come to convince myself that I now wouldn’t be able to live without.

It takes a lot for me to leave this “routine”.  I feel like a missed acupuncture session (I go once every two weeks), or osteopathic visit (once every three weeks), or pain management therapy (once a week) could be the difference between a happy, able-bodied Lauren and complete illness or disability.  It’s very black and white in my mind, and I am always striving for that illusive balance.

Being away from my every day life for a short time helped of course.  I decidedly push myself into certain circumstances where I may not feel 100 percent safe (within reason of course).  I mean traveling, or being away from my resources: my “team” of healers and doctors and an arsenal of herbal remedies, healing teas, and supplements (I have an entire cupboard dedicated to this).  I feel compelled to force myself outside of my comfort zone often otherwise it’s just too easy to stay confined to a bed, a couch, my apartment, and a small circle of life which makes my world smaller and smaller by the day. You start to believe you cannot do things. In my opinion, that is not living.

So the past three weeks has been about pushing.  Again, within reason (I’ve learned that pushing too far in either direction is no good).  But, I write today very happy and feeling healthy.  I am always a little bit closer to accepting that my health condition will never be perfect, and I must do things that many people my age won’t have to worry about for another fifty years.  But, I’ve come to enjoy being conscious of my heart, listening to my body, respecting when it shows me signs of distress, which in turn keeps me incredibly grateful for every new day. I’ve never felt so proud walking up subway stairs (with mini breaks of course)!

Now the test will be to keep in this head space.  I have an illness within an illness to control here: it’s the phone calls, insurance companies, doctors offices, and general healthcare insanity that I find infects me.  Trying to keep up is ultimately oppressive and heavy –and often times even on a good day a bad phone call could crumble it all.

It takes a lot of strength not to feed into the cycle.  I’m ready for the challenge.  All I keep repeating to myself is:  I am healthy, my heart is healthy in its own way, and everything is gonna be alright.

The Heart Truth – Awareness

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The Red Dress show was exciting and full of happy energy.  Any efforts made to raise awareness for heart disease are a great thing in my opinion.  You had all the ingredients for a buzzworthy event: celebrities, beautiful dresses by top designers, press, and bags filled with fun stuff for the guests.

I do wish I could have enjoyed the show itself a little more.  By the time the show started I had been standing for almost two hours in line.  I did not anticipate this, and I was exhausted.  It’s really hard for me to stand for long periods of time and I had to keep sitting down to rest so I lost my place in line each time I took a breather.  Thankfully I got a seat for the show because I was meant to be in the standing section.  I couldn’t help but wonder about any other heart patients that were invited.  I found it a little ironic considering that I was invited based on this blog, yet no considerations were made for women like myself.

It’s quite a challenge to explain your limitations to others especially in very public situations.  I find it difficult because I look “normal”.  You couldn’t upon first meeting me tell that I have a metal box (pacemaker defibrillator) in my chest and that I can’t even climb stairs on most days.

If I am invited again next year I’ll make sure I won’t have to stand in line for a long period of time (and having an assigned seat would be nice too).  My heart simply couldn’t take the strain and I felt exhausted that night into the next day.

Another day at Columbia Presbyterian Hospital

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IRM

(click above to hear song)

I like this song because I feel like it’s an appropriate soundtrack to my doctor and hospital visits.  It evokes this mechanical robotic vibe and it feels very institutional.  Yet, her singing is melodic over it all which is sort of how I try to approach days like today.  There is a lot of harsh reality surrounding me, and I may get upset, but my positive thoughts and strong hope are the equivalent to her soothing tone of voice over the oppressive clanking and hammering.

I read somewhere that Charlotte Gainsbourg came up with the song when she suffered a head trauma and had to go for MRI’s frequently over the course of 6 months.  It was the loud clanking sounds that inspire the rhythm to the song.

Anyone who’s been inside one of those scary MRI machines knows about those sounds.  They add to the already uncomfortable experience of being tied down and slid into a tunnel.  The whole experience is unnerving. Luckily I am not allowed in those machines anymore because of my pacemaker/ defibrillator (no magnets please!).

By the time you’re reading this I will be in my appointment.  Here’s to good news.

Insomniac

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Sometimes I don’t go to sleep because I cannot (despite feeling exhausted). Thoughts that race through my mind keep me awake and staring at the ceiling until the sun comes up.  It’s torture.

Sometimes I don’t go to bed and rest my body purposely because I am afraid of the bad dreams I’ll have.  There are phases I go through where my dreams are so incredibly real and terrifying that I actually avoid sleeping so I won’t have to experience them.  This isn’t so bad, I find something to do during the night and keep busy. Anything besides waking up in a sweaty panic.

Then there are nights like this one.  Nights when there are so many emotions and so much information to process.  It’s overwhelming.  This happens every few weeks, I download my recent experiences and it all feels so… HEAVY.  There’s always something new to accept or an obstacle to overcome mentally just to get through the day (most recently it’s been all about heart stuff again.  I’m so afraid of my defibrillator firing).   Instead of shutting down I seem to do the opposite.  I am wired… like I can stay awake for days thinking, reading, researching, planning, figuring out my next steps.  How do I get better?  How do I fix my heart?  It’s an obsession.

I’ll surely see the sun rise this morning.  I’ll fall asleep to people starting their days, heels on the pavement, squeaky brakes of the garbage trucks, kids going to school.  And I’ll wish that when I wake up everything is better.  Like magic my heart works!  Every time I close my eyes I’ll never stop wishing for that.

If I really believe in this it has to come true…  Right?

ICD Clinic at Columbia Presbyterian

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Yesterday I headed up to Columbia to the ICD Clinic.

The Clinic is where my pacemaker defibrillator gets a check up.  I am supposed to go every four months but this time I put it off way too long and it wound up being eight months since my last appointment!

It’s not my most favorite thing to sit through.  Basically a nurse tech interrogates my device by going into my pacemaker defibrillator through a special computer.  This always freaks me out big time.  While in the “system” as I like to call it, the nurse creates a print out of all of my data since the last interrogation and then checks my leads.  This is where I get queasy.  I have three leads (wires) so she takes the time to test each one by bringing the wire up to a certain intensity and then back down again.  You can feel each chamber of the heart speeding up as she tests it and then going back to normal.  I’ll never get used to feeling my heart beat fast (as if I were running) while I’m lying on my back.  Creepy.

Up until now there has never been an episode recorded.  Thankfully, I haven’t been shocked (you are shocked if you have an arrhythmia or if my heart beat goes above 180), but my device records all episodes where my heart goes above 150 and there were a bunch this time!  Confusing for someone who doesn’t workout or climb stairs.  There was also one tiny “blip” as they called it.  This I did not like … I had a “bad rhythm” for 2 seconds.  Scary because if it happened for 8 seconds longer I would’ve been shocked.  A huge fear of mine.

I asked to have my own copy so I could study exactly when these episodes happened.  The technology is so incredible it actually can tell you the exact day, time, and for how long these episodes occur:

The crazy arrhythmia is the very first one at the top.  Then, you can see as you go down the list how fast my heart was beating at different times it was recorded.  162 is really high.

I’ve combed through the list.  I wanted to see what I was doing during each episode.  I can see a lot happen between midnight and 2 am which confirms all of the times I wake up in a panic with my heart racing.  It actually wakes me out of a deep sleep.  Anxiety? Is it something else?

One thing is for sure, this has really messed with my head.  I know it isn’t logical but now I am scared to exert myself.  I feel like it will bring on an episode.  I think of how often I’ve been driving by myself lately and it’s so hard to continue doing so with this information.  I can’t even get my mind together to go to yoga tomorrow as planned.  This is just a big deal to me and it’s setting me back right now.  I feel scared and I really don’t want to.

I just wish my heart was protected.  I wish it to be strong and safe and episode-free.  I also wish this flood of emotions will dull down.  It only takes a little thing like this to work me up again.

Thanks Dee for coming with me xoxo