The REAL Broken Heart

I had to give up my kids this month. My students, my little loves. I taught kids with disabilities, loved every moment and understood them in ways the normal mind will never understand. I never knew why I had such a connection with my students, or other kids growing up who had disabilities. It’s been made very clear however the past couple years that we are in some way on the same plane in this great universe; and honestly I wouldn’t have it any other way.
The mind is incredible, the spirit is not only an intense substance but one that holds ultimate powers unknown to the average mind. When I’ve talked to others about my student’s and their minds I am often left wondering why people don’t truly grasp just how powerful these little angels minds are. So many restrictions and limitations placed on them because frankly, the teachers and aids are just too lazy to press forward and really teach them the power of their own existence.
I had to leave them because I simply am too sick. It’s gotten to the point where I can’t work for more then a couple hours at a time. Most days walking up the stairs leaves me completely out of breath. I have to take a break between showering, doing my hair, and then putting on my make up.
I’m not complaining, only informing. It really has just taught me patience and determination. I now have to push twenty times harder to do tasks that others easily achieve. Dysautonomia patients often get mistaken for being lazy bums. This may be the case with some people, but I guarantee, most patients actually have more drive, better work ethic, and a bionic endurance levels.
I’m heart broken I will no longer see my students bright cheery faces every day, or receive the love that only they can give. I am more then ever determined to continue my education to learn to better their development. Emphasizing on the importance of early repetitive lessons that help them not only better their quality of life, but lead to a progression that will enable them to turn around and show their fantastic skills to the world and receive the respect they all so greatly deserve. Whenever I find my circumstance hard to deal with I think of them, then my perspective really snaps back into place. They are the kings and Queens of this earth, and I can’t wait to be charmed by their greatness once again.

Lemons

Source

Got word today that a trip to the Mayo Clinic is definitely in process. It wouldn’t be so annoying if it wasn’t for the insurance company giving us a run around. I find it hilarious that in them trying to avoid sending us there and instead bumping us around from doctor to doctor we end up costing them even MORE money.

I’m just thankful we have good insurance. Goodness only knows the hole we would be in if it wasn’t for that safety net.

I’m staying positive this week even though I wasn’t able to go on a camping trip with my friends that we have been planning for a while. I’m obsessed with the outdoors almost as much as I’m obsessed with music.

However the night before the jaunt my heart started doing its thing and then the wiggly limbs began. I ended up on the hide-a-bed with my feet straight up in the air and my muscles spazing. I was so wiped out. Not going to lie, there were tears.

BUT

I’ve learned to keep my mind off of the pain by finding amusement out of it. I mean if it wasn’t for the pain just the idea of massive heart palpitations and uncontrollable spasms in odd places in your body would be pretty funny to have.

When I was growing up my best friends dad was a Physical Therapist. He had this electrode thingy that if he placed it on the right part of our arm or hand a muscle in a totally different spot would start spazing. We’d play with all the time and thought it was awesome. So I just go back to that. Hey if I thought it was awesome then, why can’t I glance down at my thigh and find the twitching entertaining now?

If you don’t let it be a burden it won’t be.

I'm going to head to a concert this week to make up for the camping. I bet it will be worth it. One of my best friends dad gave me this awesome art piece too that I probably would have missed out on if I went up. See, when life gives ya lemons, stick em in your bra!

And THAT is how you make life perfect my dears! <3 span="">

My Favorite Sports Ad of All Time:

Tinkle Tinkle Little Star...Yup I'm going there...

So life is about living and dealing with the crap that gets sprung on us and figuring out a way to make it entertaining. Now this next post most definitely lyes under the TMI category. But i'm posting it anyway. Why? Because, everyone who knows Dysautonamia KNOWS it's bound to happen every now and again.

Okay now for STORY time:

A couple of weeks ago I was in the pool and it happened. Every girl has experienced that feeling, where you're in the middle of nowhere and you feel it. Aunt Flow is taking over! So I cus under my breath turn to my cousin and tell her i'm pretty sure "George" has come to visit. She rolls her eyes in sympathy and I proceed to get out of the pool.

It twas then I realized. Oh $#@%! That is NOT Aunt Flow!

I was stuck I didn't know if I just let myself tinkle or rush to the bathroom with my legs crossed. For a second I stopped to deliberate with myself....thankfully i'm a quick thinker. "Self?" I thought. "Should I stay and just let my body do its thing even though this pool is a salt water pool and contains very little chlorine, or do I jet?"

I looked across the pool at my cousin..."If she finds out I peed in this pool she'll kill me!"

So I booked it, hoping the force of the run wouldn't cause any accidents on the cement. Luckily my physics lesson paid off. I was in the clear!

Damn that bladder...ah what a great pun! I need a dam in my bladder...

Anywho.

I wasn't embarrassed then, just pissed. But now typing this, knowing it's going out in the cyber world for the universe and future employers to read i'm a tad nervous. But it needs to be said. For you the fellow sufferer, who knows the power incontinence can take from you. Take it back. It's not going to ruin me, it doesn't make me any less of a lady...however i know this post might.

My Fellow P.O.T.S-heads I feel your pain. I too have experienced the ultimate uh oh moment! I'm here for you. Just remember. Everybody poops, and everyone with a condition like ours ends up losing control every now and again!

Howard the Pacemaker and how I became a Pot Head.

Howard was good to me, immediately my memory, my strength, cognition, everything improved. We were ecstatic and thought it was over. We gave it a couple months because we knew it would take some time for my body to get into the swing of things but the events kept happening.

So in summary: We ended up going back and getting a over night EEG in November, told to go to more therapists in case it was psychogenic. (Between the time I first started seeing symptoms to now I've had 5 therapists and psychologists who all told me it was medical and not psychological. But the doctors wouldn't believe them so they kept sending me to different mental professionals. Don't get me wrong i'm an advocate for therapy and mental health. In fact I've thought about becoming a Nero-psychologist for many years. But after FIVE therapists sign you off, wouldn't the Doctors get a clue?)

Had my hormones checked realized they were out of whack along with some other stuff and had a mini surgery. Went to Genetic Testing. Had another tilt table test FROM HELL. (worst experience I've ever had in my ENTIRE life!!!!) It got so bad I started praying for God just to take me.

Got the results back from the second tilt table and geneticist and Wahl a. That's how I became a P.O.T. head.

So that's my history in a nutshell. I'm too tired to write anything else. It's late and I hope it makes sense. If not oh well. Now I can start the fun posts tomorrow.

First Diagnosis and Stanley

Long story short I continued experiencing weakness, chronic tiredness, and passing out. I went to the doctors twice, both times they thought I was pregnant, then thought I had mono, then thought I had the flu. I rolled my eyes knowing it was none of those. The first time they just patted me on the head and told me to get some sleep...cotton headed ninnie muffins.

The second time however they sent me to get a Tilt Table test. I'm not going to bore you with the details, but I will say that this event was what baptized me into the "I don't care who see's me naked club." They couldn't get the Iv in and for some reason every tech on the cardiac floor felt the need to come help, the whole time I might add my hospital gown was wide open because they were also trying to get my EKG. It's okay, I have nice boobs. ...just kidding. Sort of.

ANYWAY. Within four min my blood pressure went to something like 28/35. I was clueless to what it meant so it wasn't until I got home and told my brother who's pre med that I realized that's not so good. I went to my Cardio, he told me I had Nerocardiogenic syncope, told me to take salt pills every day and drink lots of Gatorade and sent me on my merry little way.

That was at the first of June. I only remember bits and pieces of July until April of the next year. I apparently started having events that looked like seizures although a stent in the hospital for an overnight EEG didn't come up with anything. During that time I was sent to a Nero who didn't know anything, didn't do anything but blood work and sent me to a million other doctors. He was such an idiot at one point my parents both started freaking out on him one day, he faked a phone call and ran out. I was sent to a second cardiologist who ended up thinking I was faking it. He humored me though and made me wear heart monitor after heart monitor. I apparently flat-lined or came close several times while i was wearing them, but the techs "Just thought I unplugged it." Because the heart drop was so fast.

Then I was then sent to a muscle doctor who told me it was in my head (sound familiar?) and sent me to Cardiac Rehab just so that I could "gain confidence in my body again." When did I ever lose it?

I was a good girl and went any ways. I went three times actually and my heart rate plummeted each time. In fact I'd walk in get my blood pressure taken, run for a while take it again, then bike and take it again. All three times my blood and pulse would stay the exact same no matter how hard I ran or biked. In fact if anything it dropped. Then like clock work at the end of my workout when I was almost done or at the cool down i'd end up on the floor with all the old people staring at me terrified I just died.

It's one thing if people in general are scared you're dead on the floor, but I got to tell ya it's just awkward when a bunch of old men who have diapers under their jogging shorts start crossing themselves and praying to God for my safety.

So after each event we walked to my first cardiologists office and showed him the reports on what just happened.

That's when I officially became one of my Cardiologists youngest patients. In the waiting room it was usually me and 70 something year olds. It smelled. Just sayin.

In the last week of Feb of '09 My doctor decided to put in a permanent heart monitor. It was the size and shape of a pack of gum, metal and thin like a pacemaker and was placed exactly where the pacemaker is placed. I named it Stanley. I only had it in for a few weeks but had a hard time getting my events transfered over the computer. When we finally got it figured out it only took two events when I got an urgent call to come in and get a pacemaker.

On April 15th I got Howard, My pacemaker.

First Signs

Dying is highly overrated. What? It is.

I've died many times and so far i'm still sane. Sure I may not really have a tight grasp on reality, but who needs reality anyway? I'll leave that mess to Snookie.

I remember the first time I died. At least it's the first time I remember dying. In the first couple months of 2008 I was running on my favorite path right outside the city near the mountains. I loved it because it's extremely hilly and absolutely beautiful. I was training for the marathon and had been running on average 8 miles a day. I had only gone about three miles as I was running up the first really large hill. I remember having my headphones in at the bottom of the hill with the song blaring, I was pumped to reach the top.

The next thing I knew I was at the top of the hill, spread eagle, earphones two feet away with another song blaring from the speakers. I don’t remember actually running up it.

I was dazed and confused and not the good kind. I caught my breath, and continued running. I pushed it away because almost exactly a year before I was on a motorcycle trip across the state with my man-friend. I was riding on the back when I had him pull over. I remember tapping him on the shoulder to stop then the next thing I knew I was sitting Indian style on the side of the road with my helmet off. I didn't remember getting off the bike and I didn't remember taking my helmet off. I thought it was just my period then, so when I found myself on top of the hill I dismissed it once again as my period and kept treckin on. ...you'll find out very soon that i'm kinda an idiot and when common sense interferes with what I want, I tend to simply ignore it.

It didn't hit me until months later what happened. The thought of me running through the mountains and on city streets not to mention one of the scariest parks in the state while passing out every now and again...well I was lucky I guess.

Maybe no one noticed because I fit in with all the druggies at our local ‘needle’ park when I passed out...that explains a lot actually...