The Sense of the Unstressed

The fantastic fortitude of a positive attitude still astounds me. I absolutely love it. The mind is so intensely powerful that it’s no surprise that we know really nothing of it and never will. Many believe that those with a sudden onset of a chronic illness had a trigger aka, trauma in their life which exasperated what was silently waiting to take over.

I completely agree. I’m certain I was born with this illness; the first signs were shown when I was in fourth grade, continued very silently through my adolescence and only really showed through exercise or long days sitting in the classroom. The first hit that took place that let those close to me know something was wrong was when I was twelve after several stressors. It was slight but very present. It didn’t start getting annoying and disruptive until I was a jr in high school, and didn’t show it’s dragon like face until after I graduated and I had two sudden traumas that occurred one after another. Not only my mind and mental state was in shock, my body went through a shock and caused the genetic disease waiting inside me to crawl out and burn throughout my body. Studies back me up on this state of thought, thousands of patients will attest that they too had a trauma that brought it out.

So if a sudden trauma could cause a fault in your system causing a chronic illness to peek it only makes sense that meditation, stress reduction and positive attitude will help. maybe not cure, but calm the disease. All the more reasons to do what you love, cut out the people and subjects that are toxic from your life, and live hard while parting like a rockstar.

The Hard Workin Man

Right now i'm visiting my brother, him and my dad are getting ready to lay some gravel in the front yard. My brother has been complaining about his back because he messed it up snowboarding a couple of years ago. I've found myself wanting to go out and help, but i know the movement of bending over to sweep up the dirt and then up to place it in the wheelbarrow would cause my P.O.T.s to act up sending me face down in the dirt. And although the idea of a mud bath sounds fun right now i don't think it's for the best.
I would have never thought I'd miss manual labor as much as i do. I've always enjoyed mowing the law and still do it every now and then but it causes a bad reaction and i can surely expect an event that night.
I grew up in a fairly small town, pewney compared to the major cities, my best friends all had ranches and corrals. I'd go out and help with gathering up the hay, bringing in the horses, fix fences, everything you'd see in a good cowboy movie.
There's just something inspiring about hard work. I love it. I love that feeling of completing a task and that pride sweeping over you. It bugs me that the only thing i make with my hands now days is girly woosie needle point and birdhouses.
It's my goal to get back to doing as much as I can, I walk a little more each day, and push myself in the small things more and more to help my endurance grow. It'll get there. I've been teaching myself how to endure the pain in my heart. Every time it comes on i just take a deep breath and i guess, meditate, almost go into myself and tell my brain i can take it, it's not as bad as it seems and with my mind try to psyche myself out into thinking I'm fine.
At this point it only works like 30% of the time, but I'm expecting it to get better.

Chi-Town Time Freak

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Vomiting is the best form of humor I’ve decided. Nothing makes people giggle more then a good story about a vomiting and accidental peeing of the pants adventure.

Glad to be a source of good cheer dear fellow.

But honestly, good golly, I’d swear there’s little men in my body just having a hey day switching those spark plugs in my brain on and off. But I digress…

The last week was a fabulous one. I visited the majestic city of Chicago.

When I was there I was surprised because I felt fabulous 95% of the time, a record for the last couple of months! We’ve decided it’s because Chicago’s at 500 ft above sea level, (much closer to sea level then where I live) and this makes me wonder if going and living my dream of settling off the coast of Oregon would be a good game changer for us.

One of the days I was on my own because my dad was preoccupied with conference calls and such so explored it on my own.

We were on the magnificent mile, and for those of you who aren’t Chi-town savvy, it’s one mile filled with shops, one sign said over 600. (most of them were in a mall.)

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I went camera crazy visited an Episcopalian church which was absolutely beautiful, I meditated and digested it’s beauty. I had a good 4 hours to myself with no problems till I stopped for a bite to eat. I ended up at Jimmy Johns. I remember ordering, paying, and then all of the sudden I was across the room holding a soda cup, and I was waiting for my sandwich, when I realized it was already in my hand.

I have NO idea how I got there or how I got my sandwich. That’s when I knew I best be heading back to the hotel.

I called my brother and stayed on the phone with him to make sure I was back to normal, then headed to the hotel room as fast as I could so that if I were to lose time again I’d be at least closer to the hotel.

I can handle a lot, But man the whole losing time thing freaks me out, it’s like a bad acid trip without the exciting colors.

The plane trip wasn’t half as hell-ish as we suspected, I was very thankful for that. I only felt like dying during the major changes in altitude. I’ve got to admit I was disappointed my pacemaker didn’t set off any of the metal detectors at the airports though. Such a bummer, I love being suspected as a terrorist.

More and more people have suspected me to be a bad girl since I chopped of my hair and colored it a dark brown almost black color. I have better street cred now, little children cry and run away when they see me. I’ve been hit on by a lot of dudes with tattoo’s which I can’t say I’m opposed and I’ve all of the sudden get more perks at the music venues. Here I’ve been going for years and stuck out like a sore thumb as a cutiesie little preppy chick and all of the sudden because I look like I’m the type of girl who hangs out in alley ways with needles in my arm they adorn me with respect and free merch. Who would of thought a change in color would do so much for a girls persona. Maybe it’s not the hair and just the fact that they can now sense i’ve been schooled in the back streets of Chicago on how to be a real woman.

I’d say ‘don’t mess with me I’m dangerous,’ but I’m pretty sure my hair and wicked street cred says that for me.

Dear Porcelain Gods

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Okay, that's it! The VOMITING is OUT OF CONTROL!!!

Dear Porcelain Gods,

I wish to never visit you again. Please don't take it personally.

Thank you,

Your most frequent visitor.

It's official, my visits to the "situation room" are out of control and way to frequent. I'm trying to find ways to deal with it, so please, if you have ideas, pray tell.

I used to never throw up, then it started every couple of months and it progressed to daily. Now I wake up and drink my traditional two glasses of water the doctors have me drink before I get out of bed, and within min i'm throwing up. I eat I throw up, I work out I throw up, I just sit, I throw up.

So please i'm desperate, i really don't want to continue looking at my food and thinking, I wonder what this will taste like coming up.

mmm! Yummy!

Nomi the Lonely

i love this picture it reminds me of when i was a little girl and i would sit on the shore of a lake we used to visit in my big sweaters and almost bigger bows.

When you’re struck with a chronic illness it’s not uncommon to feel a great sense of loneliness. It’s there in that great big package your body gives you along with the aches, nausea and confusing fatigue. It comes even when your family and friends surround you and often have friends around. It’s just something you have to deal with.

I’ve felt loneliness before I got sick, everyone does at some point in their life. However the years coming up to it I was too busy to get lonely I was too many quests and had too many adventures to stop and think.

But as of late my thinking has been too much, the late nights when I’m still awake and it seems the rest of the world is sleeping it’s hard not to feel lonely.

I ask myself why, because I’ve got a great family and many friends and lots of support. But I think the reason I have the loneliness is because there’s no one else who knows exactly what it feels like to go through this. It’s not a “oh sad, lets feel sorry for her.” sort of thing, it’s just matter of fact. No one does, and quite honestly I thank God. Ours is an illness that no one sees, and it’s not like cancer where people have more awareness and understanding. Plus lets face it. Dysautonomia is just weird. Especially when you’re a paradoxical mess like I am.

But I’ve decided I’m thankful for these lonely spouts.

They’ve allowed me to really understand myself more and gain the most out of my experience. I’ve always had a hold of who I am. Now days fitting in is the exact opposite of what I want to do, and I love myself for it. My very conceited cousin was telling me how hot he was the other day and I thought to myself how odd our family was because we’re all so confident. But I realize the reason why we are is that we’ve been faced with a lot of challenges. Not necessarily more then the next family but for some reason a lot of us have come out with an extreme sense of self.

Now don’t get me wrong, my cousin’s a little twit but I’m proud at the same time that even though he’s in the scary high school stage he can hold his own.

I’ve embraced the lonely and turned it into a time of meditation, further understanding of myself, my progression and trying to psyche my body into healing itself.

I’m not going to lie, my spiritual ambitions are not what they used to be. I think it comes from long absences from church because of my bad days, but I think I’ve also realized how amazing it is that I can still develop testimony by studding, reflecting, and searching for answers at home by myself. Don’t get me wrong the church community is greatly needed in ones development because we learn and lean on each other. However I’m not entirely disappointed in my self progression with studding on my own.

I guess it’s one of those “if no one was watching what would you be doing?” sort of things. I’m proud of what that answer is.

But one of the most important things I’ve learned within the last weeks, it’s okay to cry. Not for an hour, not for days at a time, but sometimes it’s okay to let loose. I’ve never been one to cry over emotions, especially self pity. But I broke down the other day to my best friends and I didn’t even know why, it was over something extremely stupid.

But it was because I just finally broke. Yeah, it sucks that I’m not able to do the things I was able to do, and that the doctors go back and forth and I miss working, I miss playing soccer, and having as much energy as I used to when playing with my babies. And I feel a guilt that I’m not there for my friends and family like I used to be.

So I cry. Just for a min. Then I remind myself that I am one strong woman. Freakishly strong in fact, and that I’m going to get through this, because when you have trials God helps give you the strength to handle it. I will find a way to defy all the odds, and day by day I will get better. Even if I don’t get better physically I will get better mentally. And I remind myself I’m not ordinary, I’ve never felt ordinary. And unordinary people do extraordinary things.

Brittany Murphy, Dysautonomia (Pots syndrome), Her Brother

Actress Britney Murphy went into cardiac arrest and died December 20^th 2009. Many speculate that she died of a prescription overdose because of the toxicology reports. Mainly because of the prescriptions found in the home, however I’m not so convinced, the drugs in her system were all over the counter drugs except for one, so she would have only had one prescription. Her Husband who also died from heart failure not long after her death claimed the other prescriptions were for his severe heart condition.

She had a severe case of pneumonia and the drugs found inside he could also just be helping her get over that.

There just isn’t something right about claiming it was an overdose. Her family members are determined to get the word out and spread awareness of what they believe contributed to her death.

Her Grandmother, Aunt, and half brother all suffer from Dysautonomia and P.O.T. syndrome. Although she was never diagnosed they say she displayed many of the same symptoms, including high heart rate, and extreme weight loss in a short period of time. Many claim she had anorexia but others believe it could have just been because her heart was overworked, or maybe a bit of both.

The following is a video of her brother Jeff who has suffered from Dysautonomia for years as he talks about Britney and P.O.T syndrome. The hope is to help spread awareness and open the eyes of medical professionals and the public on the severity of the disease.

Dissing Dysautonomia

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Ms. Nomi (what I call my Dysautonomia) has been visiting me a lot lately. The doctors have been tapered me off my beta-blockers because I’m paradoxical and they want to experiment with different meds before I hit the Mayo Clinic. So I’ve taken up some hobbies since I can’t do the usual fighting crime, turning trix and acting as britney spears body double.

I’ve become quite the little crafter and for my fellow P.O.T heads I’ll tell ya, get your craft on man!

My bestie and I hit JoAnn’s the other day for some sales. We looked online for coupons and found our share of deals. Take time before you go out and clip some coupons, we saved about twenty bucks. I found some adorable bird houses that just needed to be sanded and painted they started from 1.00 and went up to about 25.00.

I also got some things to start needle pointing. There’s something charming about dirty sayings in needle work.

It’s been such good therapy for my fingers. My hands aren’t what they used to be. I don’t know why but just typing is hard some days, and forget about piano playing. But I swear the needle work, knitting, and pushing myself to play the guitar and piano has really helped me.

I also make sure I walk at least 10,000 steps per-day. I try to up it each week, but of course on my bad weeks during that gifted ‘special’ time each month I’m lucky to get half that.

My heart rate is more messed up then Farrah Fawcett on letterman. I went running the other day and of course tracked my heart rate closely. It stayed between 65bpm and 120bpm. The faster I ran the slower it got. I know, once again, paradoxical. So I’ve discovered that if I just walk on a steady incline it stays at the highest beats per min. Who would of thought. The good part of having such a messed up heart rate is on my good days I can run forever. It’s exciting and disgustingly fun! I bet I could do the Iron Man…that is as long as I had floaties on during the swimming portion in case lost movement in my right side. And I would need to find a way to bike without actually balancing on a thin piece of metal in case I passed out and fell off. And I probably shouldn’t run because after drowning from swimming and passing out from biking I bet I would look like a heroin addict on the side of the road. (Nomi survivors are probably the only ones who would really understand that reference.)

Anyways, I know it’s hard my friends, but keep on keeping on, you’re never given anything you can’t handle, and if you view your life as just a pathetic joke, it makes it a lot more entertaining.

Ride on man, ride on.

"Doctor there's no way I can be pregnant, gestation freaks me out."

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Today I had the privilege to go visit my ObGyn and as I was lying there and feeling like I was on a crate of dynamite while riding a horse I began to have a delightful discussion with mydoctor. Why is it that when something new and weird shows up the doctors always resort to asking if I could be preggers? Even the ones who KNOW how much birth control I’m on, including the ultimate beauty of abstinence. That’s right people I’m abstinent, by choice! I know who’d a thought that there were still virgins in this world? Well I could show you a few people who qualify. Yes, we all live in bomb shelters and have never been exposed to the outside world. Beside even if I wasn't a nun I still would do everything in my power not to get pregnant, gestation freaks me out.

So Dear Doctors,

Just because I’m weak all the time, have extremely low blood pressure, and vomit every morning at the exact same time and after every meal; it does NOT mean I’m pregnant.

Please figure out what’s wrong, and believe me when I say, there’s no way in hell it’s possible!

Sincerely, your high paying patient.

On a more happy note I received my Mayo Clinic paper work in the mail today. It’s been a long fight, many tests, even more doctor’s visits, a couple of surgeries but I finally made it. I’m on my way! And even though I know that there’s no cure, I still believe a miracle can happen that will help treat me so I can have a better quality of life and longer life span. Wootie! Wootie!

And to top it off Jimmy Eat World’s on letterman tonight! So minus the lame brain doctor It’s been a freaking awesome day and I’m one happy girl!!

The Art of Dying

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Growing up I always wondered what it would be like to die. I dunno I guess I thought it would be much more exciting and dramatic or something then it really is. But then again the several times I died I only died for seconds to minutes so who’s to say I actually got the whole big shebang. I sure hope not. Maybe I just got the commercial preview and not the actual cinematic production.
I had several near death experiences, they were wonderful and i'll hold some near and dear to my heart but it wasn't like a big cinematic event. I was expecting to be Robin Williams in "What dreams may Come" But it was simple.I’ve always thought trumpets should be blazing, thousands of people I have no memory of and ancestors from centuries past should be there to greet me with flowers and heavenly gifts. There should be a party in my honor and for a good hour or so I should be the center of attention and queen of the party; tiara wearing and all.I don’t think that’s the case anymore, in fact I don’t think it’s even close. I bet when you die, you experience the illusion of light brought to you by the great nerves going off like fireworks in your brain. Then you sit up out of your body, look back, think to yourself ‘gosh darn it, I sure was a sexy beast’ then pow! You’re in heaven.A couple key players would be there to greet you but it’s no big tah-do, then you’re immediately put to work.I’ve never understood why people think once someone dies, the dead go back to their own funeral to watch. I personally have already experienced my life, I don’t need an inflated optimistic summary of it. I think I’d fall asleep and drool all over my wings. That is assuming that I already earned them.I bet I have. Earned my wings I mean. I’m a pretty fantastic girl I think. Or at least that’s what a pompous self-righteous dogmatist told me yesterday. He said I had an over exaggerated view of myself as far as my saintly-hood goes. I may think I’m sexy but I do not think I’m a saint. I don’t share my Oreo’s enough to be a saint. But just to be safe I asked my shrink and she agreed, I am not a pompous narcissist.
I really hope God let’s me come back and haunt people on my breaks. I think I’d hide a lot of shoes. I like the idea of messing with the thermostat so that people sweat once they see their electric bill. Isn’t that ironic, sweating while looking at the bill for excessive air conditioning? Gosh I’m funny. Or just really tired.I hope heavens cold. I hate the heat, but maybe that’s just because my P.O.T.S. makes it so I’m an over worked farmer. By the way, holla at my peeps over there in the fields, you deserve way more then you’re getting paid! Keep bringing on my tomatoes, I’d die without them.
That would really suck if that’s how I died after all. Here I am spending all my money on hospital bills and over priced medication and then I die from shortage of tomatoes. Just my luck. I knew I’d die from something stupid.My dream way of dying would be slamming into a large gas tanker after a long high speed chase. Preferably with a psychotic super spy, not the police… I’m terrified of having a record. The huge explosion and thrill of the chase would make the whole dying thing much more entertaining and less of a bummer.But alas I’ll probably die because of tomatoes. Tragic, I was such a lovely person....I really shouldn't write these when i'm this exhausted.

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The Insanity Plea

When you are going through the hell of figuring out what the heck is happening to your body it’s a steady mission; a quest per say of which it is easy to find optimism by looking at it as an adventure. Of course it’s a crappy adventure but none the less you can trick yourself into thinking that with every new test, every new diagnosis you are just educating yourself. Educating on how the medical profession works, education on peoples body language (that may sound weird but I can now read doctors like an open book) and education in yourself.

I now am much more aware of chinks in my armor. I’m still fabulous but now that I’m more aware of myself it’s easier to admit when I’m wrong...which of course is rare, and when I should change something.

When all this started I was little miss independent. I hated getting help from others, because help was for the weak. I worked like crazy, studied like crazy, exercised like crazy, and partied crazy (well at least for my cities standards.) I only dated for the fun of it and only had one really big relationship out of high school that had absolutely no strings attached. It was much more fun moving from man to man, date to date, party to party, group of friends to group of friends. The only constant in my life was my family and an old friend Jess that came up to school with me from my home town.

Sickness humbles you; you have to admit you’re just as vulnerable as the Roman Empire. I had my ten year plan; I wouldn’t have ever seen myself here.

When you go through the hell of diagnosis you go through all the stages of grief over and over again every time the doctors change their mind or get new results from different tests.

Then you have other outside forces pulling you, like friends and families. I lost a lot of friends when I got sick. There was even one that complained that I wasn’t paying enough attention to her and her problems. Others just don’t keep up because they don’t understand what’s going on or they’re were just bummed I turned from being a crazy fun loving gal to one on a couch most of days of the week completely passed out. I’ve even had a little drama with my extended family because of it. they simply don’t understand the disease. At first this bugged me but now I’m glad. The friends I have now are few, but really very loyal. I take the relationships with the sexy man friends more seriously and I’m still a work in progress but them taking care of me doesn’t make me uncomfortable anymore. I know my family will come around, my bond with my mother is stronger then the wall of China, and the respect and love my father shows me would make any daughters heart melt.

Then when you  FINALLY get the actual final diagnosis and everything is pretty much sign, sealed, and engraved you have to go through the steps of grieving all over again.

I’ve finally found a way to deal with this.

I plea insanity.

Simple as that. I just don’t care anymore, I’m now a complete ditz, my thoughts are never completely formed and the flap between my brain and mouth that filters what I say, doesn’t really exist. At least I won’t go to hell now for lying.

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So I plead insanity, I dance in the streets, bounce in puddles, have long conversations with strangers, wear what I want to wear no matter how insane it looks, cry for no reason, take bigger risks, and many other fun things I won’t say just incase it will incriminate me later.

And you know what?

It’s AWESOME being insane!!!

The Compromise

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I had another little chat with my nero yesterday, i'm so tired of the back and forth but I just keep reminding myself, it's not their fault they are just "practicing" medicine after all.

We rediscussed the school option and I explained the importance to me, that i'm not like most people and that I don't "stress" out over school except during exam season. We came to the compromise that I'll take online classes, something that never involves me having to go on campus, nothing that leaves me unsupervised in a testing center, and nothing difficult. They want me to start out with like a film class or art 101.

So I was able to take a DEEP breath, a chill pill, and realized I really should take it one step at a time. I'm so used to my five and ten year plans that I never thought i'd ever be making a one month or one week plan.

Oh well that's my new life, i'm just ecstatic that i'm going to be able to take an online class! woohoo!!!!

Today I Discovered I am a Masochist.

I have a HUGE weakness. Here in this part of the country we have a BEAUTIFUL place, a MAGICAL place, a PERFECT place we like to call...THE PIZZA FACTORY.

The addiction started in high school it was our little hang out spot then it didn't get any better when I became friends with the owners son. Oh dear oh dear. It was bad.

When I moved away I was sadden by the thought of departing from that perfect pasta (yes it's a pizza factory that made pasta) and heavenly, succulent, bread sticks. If man and food were allowd to marry I would marry those bread sticks.

So with tears in my eyes I parted ways and never looked back.

But then the other day I was looking for a place to eat with my auntie C and as we were driving up and down the hills throughout our beautiful city I saw the clouds part, angels started singing and there it was...a Pizza Factory glistening in the sun calling out my name. I almost fainted with excitement and had to put pressure on my chest because my heart started pounding and jumping out of control.

Because of it my aunt and I have gone there not once but three times in the last week and a half.

Now many of you may be thinking big deal, that sounds wonderful. but the thing is, I think i'm gluten intolerant or something. When I eat too much bread I not only spend the next three days in the bathroom puking and other things, but I also end up having episode after episode.

So it was NO surprise when I had a big ol' doosy of an event last night. It was one of the most terrible events I've had for a couple of months. Every sensory nerve in my body was going nuts. I couldn't touch anything without stings of uncomfortable spikes pressed through my skin. I can't explain it any other way then it feels the same way for your skin as it feels for your ears to hear finger nails on the chalk board. Clothes off, I was on my tip toes with my arms stretched out and my legs spread so that nothing was touching me. Including the carpet. The only thing that seemed to help was an intensely cold shower and spending a good couple of hours out in the cold. Then the migraine and wiggly limbs came.

and it may all be because of those heavenly bread sticks. (BTW when your obsessively track what you eat and do then compare it to your episodes and events, this will allow you to connect what triggers them.) Oh dear. Yes I know. So last night I swore I would refrain, not allow myself to be weak and never go back. But then my aunt came over and she needed a fix. Oh no, I've made her an addict. She was jonesing bad, and honestly, so was I. My mom gave me that look, you know the mom look. But my cravings were pushing me, chewing at me, my heart gave out and I went. Ordered my usual salad and bread sticks. and now 'I've been going back and forth to the bathroom and I know that by the time the sun is up my brain will be extra foggy and my i'll be fighting off my wiggly limbs.

I must be a masochist. I still want another one.

Dysautonomia Today I'm a Daisy.avi

Thank you Michelle for sharing it. :) []jOaMi

Telling Me what I Can and Can Not Do will Only Make You Look Like an Idiot Later On

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I've been staring at the wall for the past five minutes wonder just how much force I would need to use in order to punch my head through....F=ma

This week has been from Hell, I mean, you might as well send me down and chill with Hades for a while. I was asked by one of the Nero's if I've thought about just ending school all together. I asked him how he'd feel if he just stopped taking showers all together. I mean REALLY? How the hell am I supposed to keep my head up and have hope when my docs are telling me I should just chill at home reading novels about Fabio getting it on with some desperate hooker? And what person in their right mind actually thinks thats a good idea? I thought they meant just for now, but nope he clarified that I can find a good job suitable for my "disability" and that way I can practice on getting better and not "over doing it."

OH the Stupidity.

I'm really sick of the stupid. Maybe that's what I can do, I can figure out a way to end all the stupid. After my doc told me to stop trying so hard to continue my education I went out and bought several books on mathematics and the Quantum Field Theory.

I mean really? Really? Like educating myself is really going to stump my recovery.

No wonder most of the blogs about Dysautonomia and P.O.T.s are filled with horrible hope and a depressing longing for happiness. Doctors are dicks. And apparently it's common for them to strip patients of all hope.

This week as i've said has been hell, I've refrained from posting anything because I kept hoping something good will come of it. That hasn't happened, but I refuse to let this be it with my life. And the rest of the week will NOT be Hell. I've been thinking of everything the docs have said the last week (i've seen three) and I've decided I'm going to do this. I don't know how, but I'm going to do what I want to do and i'm going to excel so well that when someone else is diagnosed with a chronic illness that makes it almost impossible to stand up in the mornings they will know they still have a life worth living.

Pitty really, I feel bad that so many actually feel that a life in bed is all they can live because that's what their doctors make it sound like that's all they can do.

New rule, Doctors aren't allowed to say "we may not be able to do anything else for you." These words are detrimental to a person in my position. We don't need you to find a cure. We don't even need you to find away to make the pain or the events go away. We just need to know that our doctors are trying as hard as they can to find a way for our quality of life to improve. There is ALWAYS something else you can do. ALWAYS.

Just you wait, I WILL fly.

Internet: The Hypochondriacs Bible, or an Excellent Research Tool?

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I learned early on that looking up info on WebMd to figure out a diagnosis for your symptoms is pretty much a death sentence. Doctors can sniff a world away if you are a internet WebMd hypochondriac, the bad part is they also easily confuse those of us who honestly have issues with those who just like to live their lives with a theatrical stick up their butt.

Because of those lovely people the rest of us have to suffer. So I learned very quickly, play stupid, try to ask the right questions and steer away from the computer. Otherwise they'll sniff out the fact that you've been researching on the internet, scoff then refuse to even look that direction as far as the diagnosis.

Generalizing here? Heck yes I am, but after all the doctors i've seen and after all my experiences I think i've earned the right to say a lot of doctors arrogance shows off their ignorance.

A few years ago when my symptoms really started increasing my boss tole me she watched a show called Medical Mysteries. The girl on this one particular episode had all my same symptoms, ended up having Dysautonomia, and my boss referred it back to us to ask the doctors about it.

We made the mistake of telling the doctors where we heard of Dysautonomia and the three doctors we mentioned it to all shot it down.

So you can probably understand why I’ve just been getting my information from the doctors instead of researching it myself.

Today i've decided that's bull crap and I should have the right to take it into my own hands and research however I can. This is an odd illness, and with how chronic it is, I SHOULD be able to study it all I want. I see the reasons why doctors hate internet-itis they have a good point, it's feeding hypochondriacs everywhere.

With all this being said it taught me something important. I am very glad that my doctors had such resistance over researching on my own because now I realize I need to take all the info I do find on the computer with a grain of salt. If I read an article I need to really look at it with an open mind and a critical point of view and don’t let the Hypochondriac part of myself get the best of me.

If you look at the information you find this way critically you will be much more informed then if you were to read article after article and take it as gospel. Medicine is a practice, they will never be completely right and that is why as a Patient you must be patient; and keep an open mind.

I Cant Post a Title because I've Forgotten how to Spell

Yesterday I was told by one of my doctors that I need to put my education on hold even longer, and another doctor second it. Apparently my brain is being ‘over worked’ in their opinion. They say I need to give it a rest and let my body heal before I go back. This will be the fourth year I’ve been on leave from school. Yes, right now I’d be working on my masters if ‘nomi’ didn’t bother me.

For many people this wouldn’t be a really big deal, but it devastated me; almost as much as when they told me I shouldn’t be teaching in a classroom until I get better control over my body. They also told me today to think of it as if I’m just one of those students that take a year off and go to Europe. I almost punched someone. I’ve already taken three years off I think I’ve had a good rest, don’t you?

…Now time to find the upside, because the purpose of this blog is not to whine, but really see what can I make out of all this, how can I kick some Dysautonomia butt? So today after I was pathetic and climbed into my hole and moped for an hour I got bored, so I decided to make one of my lists of things I’ll do instead. Everything I can do with all my beautiful ‘limitations.’ NOTE: I promised I would take a break from my studies, but I’m a nerd through and through even in my deepest darkest parts. SO…I may ‘take a break’ but I bet my definition won’t be congruent to their definition, and frankly I don’t care I’m doing it for my own sanity.

New Activities and Goals

Write children’s books explaining disabilities to a younger audience, I see so many issues with some of the younger kids today, they are so confused about certain disabilities and the misconceptions even among adults is devastating.

Get my craft on. I’ve been inspired by our city’s art festival, and etsy.com. I figure even though being able to sew a straight stitch is as impossible as Heidi Montag going scuba diving without her boobs exploding; the other crafts are most defiantly doable.

Become a fabulous photographer. I’ve decided it’s something I can physically do easily and since one billion people are now buying camera’s and then photo-shopping the crap out of their photo’s to make master pieces why not I be a joiner too? One of my best friends actually has genuine talent. She has no need to try to channel Merlin to make her magic. So I’ll mooch off her knowledge and make her make me the Kodak Queen!

Calm my inner nerd. I will chill out on my studies and research even though I think it’s lamer then the Lord of the Rings trilogy. I’m still going to read the good stuff with real substance because if I was forced to read romance and Oprah’s book club novels my mother would probably end up finding me burning all the books in the back yard as I threw myself in the fire to put me out of my misery.

And last but not least I’ll find my inner chi. My best friends were really in to meditation in High School, and of course I was too ADD and couldn’t care less about calming my inner soul. Calm people make parties a drag. Plus I never understood why you would want to sit for hours on end mimicking the same position a monkey sits in as he eats his banana; especially if you’re not allowed to eat a banana.

However I’ve had a change of heart, an awakening of sorts, and I’m going to put my wiggly limbs to use. I still refuse to chant.

So the past couple life card’s I’ve been dealt really are making me wonder if I’ve got some bad Karma, but that will stop. Not necessarily because the news will get better, but because I refuse to let it define how I live my life. It’s my life, and I’m still going to figure out how to live it MY way! Wish me luck. I’m off to change the world.

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...