Wednesday, April 16, 2014

I forgot I had a defibrillator (& other dumb things I've done recently)

 *** It took me a day or two, but I found the funny in it ..... ***  (Still not sleeping well, but that'll come!)

Well, it's official. I've joined the "Bless Her Heart" ranks in the highest degree possible. You know the ones... the members of these ranks get told "Bless your heart" a lot, right to their face... and while being discussed by others who see the problem you would see a lot of slow, shaking heads, and hear a lot of "ohhh bless her heart"... sometimes even in unison! What they really mean when this statement is made (at least most of the time) is "She ain't right", or sometimes " "That poor thing, there's not much hope for her is there?, and also very often these words might mean " That one's a special kind of stupid isn't she?" LOL!

Before I tell you my latest Bless Your Heart Moment, let me give you a quick background.
  I was diagnosed with Sarcoidosis in 2008. My diagnosis, came after an original diagnosis of stage 4 metastatic disease... cancer... less than six months to live... not much hope... "you've got to get your shit together cause your expiration date has been handed to you".....

Two months into my expiration day journey I had a burning need to find a doctor who would do a biopsy on my just so I could get a name for this cancer that was about to devour me for a meal.... they said it was everywhere, but I figured it had to start somewhere... there had to be a primary spot.. and oldest tumor SOMETHING to be able t give it a name. I wanted to know what to call it. I had a bone to pick with it. I asked my oncologist about the biopsy, and he said "Why do you want a biopsy? You already know you have cancer" And I simply said I needed to address it by name. He fought me on it for a few hours, but finally consented to take me up to the computer room and have a look at my PET scan... the one that prompted 4 other doctors to confirm the cancer diagnosis. And so we went.. and looked... and discussed... and by the time my questions had all been asked, he was convinced a biopsy was in order as well... and I will just say from here, to shorten the story... within ten days I had had a biopsy, and a whole new name for my monster. Diagnosis: Sarcoidosis. And it's been up and down and up and down, but for the past almost 2 years, a lot more ups than downs. I've been feeling fantastic! I've dropped tons of weight, I've gained back energy that I was certain was gone forever, I've become 100% more active, back to really living this life I love, playing with grand children... enjoying my photography more than ever before, and LIFE. IS. GOOD. So good, in fact, that I really tend to forget that I've got an insidious disease that can rear its ugly head in unexpected moments, and Sunday, this is what happened:

My youngest grandchild Addlee Laine turned four on the 9th and her birthday party was at the skating rink on Sunday. There I was doing my thing... you know... barefoot with the babies in the bounce houses they have all around the skate floor! I had just sent a little one down the slide to her momma waiting at the bottom and started sliding down myself. About half way down the slide I'm blind. Pure white lightning flash in my eyes, body lifted up from the slide a few inches, and I'm thinking "OH MY GOD, there's a loose electrical wire on this thing and I just found it with my butt!! They need to shut this thing down and fix it. And I stood up at the bottom and "BOOM WHITE LIGHTNING FLASH, Somebody's freakin horse kicked me in the chest from the .... INSIDE? OUCH DAMMIT! Oh HELL. That was my defibrillator. SHIT! I rub my eyes cause everything is a little blurry... spot my two older kids and my parents and head their way. WHITE FLASH AGAIN... BOOM GOSHDAMN HORSE KICKIN PIECE OF... and I hear a yell... a LOUD Yelll. Oh my god that was me yelling... shit. I caught my breath and my mom's attention as well as my youngest son and screamed CALL 911 my defibrillator keeps firing and about tha time WHITE LIGHT BOOM HORSE pos what did I ever do to that horse damn! And my dad is at my side holding me up, trying to get me to a safe place to OMG WHITE LIGHT BAM BAM HORSE SHIT.... the Shit was my dad. He got shocked tooo. But he never let go. Still walking to the side bench and just before we get there ahhhhhh WHITE LIGHT BAAAAAM!! HORSE a;nd MAYBE A DONKEY TOO this time. and Dad feeling it again... Dad I"m so sorry.

A really nice lady I don't know helps me take my pulse until the Ambulance crew gets there. She calms me down. Soon the Paramedics arrive, hook me up, My mom goes to my office for me to grab my wires transmitter so I can fix my defibrillator journal to the docs in Colorado, the paramedics are watching, watching, and waiting... no more shocks, but it took a good hour to stabilize my very high blood pressure and very fast heart rate. And I was grateful, and emotional, and terrified for the first time in 4 years of my defibrillator, and a little loopy, pretty exhausted, and praying that all was caused from a malfunctioning defibrillator... which didn't turn out to be the case. Spent much of the evening up at the hospital while they got things documented, and started me on heart meds for the first time in my life. My doctor called me this morning from Denver and they are setting up the National Jewish Lab Rat Maze (that's what I call the testing times when I have to go there lol) and will be calling soon with dates.

I was feeling so good. I didn't even remember that I had a defibrillator... Every test I've had in over 2 years was awesome. Last time I was there, the little one (my name Sarc doctor's nickname cause she's petite and adorable and reminds me of a lit stick of dynamite) told me she didn't want to say I was in remission, but I was as close as I'd ever been and she felt okay with not rescheduling an appointment for awhile, so I didn't... and promised her I would call if I needed to. And that was that. About six months or so ago, my defibrillator downloads to Colorado were still showing lots of short runs of Vtach, but they were kind of letting me be the guide on it all. I wasn't having any episodes that were making me dizzy, nauseated, light headed, or weak. While I could sometimes feel fluttering, it ever lasted too long, and I didn't feel that I needed to be concerned with it at all I have the downloads every three months, and a checkup once a year. Guess that will all be changing. I guess my whole point here is this:

I believe in living my life. And I don't regret ANY of the way I have that since my diagnosis. And I think I'm even okay with the fact that I did forget my defibrillator too. Because I don't want that damn thing to define me... even thought that's pretty much exactly what it's done for the past 48 hours.. But in general, No. Most people don't know I've got one. I"m not ashamed of it by any stretch of the imagination... I just don't use it for an excuse, or a reason not to be normal.... and of course the downside of all that is... you think you've slid your butt across a loose, live electrical wire on a bouncy house slide before you remember it's just you and your Thumper. I issued a letter of apology to all of the parents at the birthday party for upstaging their event for awhile and forcing them to have to answer questions from their little birthday party goers.... "Mommy What was wrong with that lady making those noises with fire coming out of her ears?" Just kidding on the fire... but there might have been smoke... just sayin.