Monthly Archives: May 2010

The “What Nows?”

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I find myself in such a new place right now. Feels like I am completely starting over and to be honest, I am feeling a bit lost.

Clearly the past three years have thrown me for a loop.  Whatever life I was living came to a screeching halt and got flipped upside down and shaken and stirred and sent on an insane roller coaster ride the second I heard the words “Lauren, your heart is pumping at 15%.”

While it’s true that I wish I never had to witness my body struggle with illness and heart failure, I am grateful for the transformation I’ve watched happen.  It’s changed me tremendously and taught me things about myself that I may have never otherwise learned in a lifetime.  True, I am grateful every day, but I can’t help but go through bouts of frustration with my “What Now’s?”

Since I am feeling better (and better and better and better), I am slowly gaining the luxury of living outside of the survival mode I’ve been in for so long.  Questions like “what is my passion?” and “what will fill me creatively, or  intellectually?” are beginning to surface.  It’s like going through a rebirth of sorts, viewing the world with endless possibilities all over again.  It’s overwhelming in a good way.  It’s simultaneously terrifying and liberating, and all of the by product emotions that come with those sensations.

The strangest part about this is living “in between” worlds; the world where I see myself as a healthy human exploring my future vs. the world where my sensible side reminds me not to “push it” physically and to keep up with my health regimen, doctor appointments, and all of the necessary upkeep of researching my medical options (open heart surgery in this case). This balance is so illusive!  Two weeks ago I am feeling amazing and free and healthy, making big plans –only to find myself in bed for most of last week struggling to work up energy to buy some groceries or even eat them.

What will this week bring?

Frustration

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I’m at my best when I stay far away from the doctor’s offices.  Unfortunately, I cannot stay far away for very long considering that I have a standing appointment with my heart failure specialist at Columbia every three months.  They like to keep a close watch on my ticker since it is quite the mystery…

In between appointments I keep my mind in a great place.  I truly believe with every cell in my body that I will heal myself, that my heart will improve –if not heal completely.  I work really hard with different healers and holistic doctors, I do my own work, I read and research.  But most of all, I believe and I stay positive.

There’s nothing like a trip to the hospital to drain that from you.  It’s like going into battle for me.  Simply walking into the hospital is enough to give me an anxiety attack.  I prepare mentally for the worst and I put up a shield so no words can hurt me.  Not that my doctor wants to hurt me but their “frankness” can be a lot for anyone to handle.  For instance, this time around a single sentence is what stung the most; when I asked my doc what she would do if she were me in this situation she began looking through my files and started her answer by saying “well, eventually we are going to have a problem…”  meaning, according to her medical training my heart is bound to only go in one direction.   She’s the expert, that’s why I go to her, but I just can’t think like that. No way.

So, here I am in the aftermath of a trip to Columbia at the end of last week.  Part of me has to be sensible and prepared so I do my research and consider what we’d have to do in the event that I do need open heart surgery to repair my valve.  I hate even thinking about it, but it would be stupid of me not to.

My current problem is how do I do both?   How do I believe and stay my own course of healing while making preparations for the sensible world of western medicine?

I’m very cranky today.  Sometimes I get incredibly fed up with having to make decisions about my health/my life constantly.

Beginning of the Month = Refills on my Meds

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I am very happy to say that I have cut down my meds to the bare minimums.  No more chemo-like toxic drugs, no more steroids — only the very necessary that I need for my heart.  Having said that, it’s still more than your average twenty something year old.

I stay away from taking anything that I absolutely do not need and I have taken myself off of things the docs insisted I “needed” yet I found to be making me SICKER.   There are days when I need painkillers (unfortunately I still have bad days), and there are other sorts of meds that I take as needed when a crisis arises, but for the most part these medications are not ruining my quality of life.  I’ve gotten used to the heart meds and have figured out a good schedule to take them throughout the day (the intense drowsiness and low blood pressure they cause used to make it impossible to get out of bed sometimes… and forget about standing up too quick)!

Thought I’d share a couple of shots of my medicine and the drawer they live in!  I took this opportunity to clean out that drawer and found a couple of stragglers…

Found !  Leftover steroids a.k.a THE ROIDS a.k.a. crazy pills.  Sure, these little guys got me up and running while I was still very weak and experiencing lots of pain but that came at a cost:  my sanity!  It’s amazing what these tiny pills can do to a person.  They made me a cranky, irritable, sobbing, mess.  I had to taper off them before I completely lost my damn mind.  Straight to the trash can little suckers!

Do not lie down for at least 10 minutes after taking this medication.

Dizziness.

May cause headache.  May cause blurred vision.

Heart protection.

Looking forward to the day I can use this drawer for jewelry and makeup… It will happen.

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.