I am oh so Thankful....

I am grateful for my disease.

Yes, you read that right, so very grateful.

It has taught me life lessons that God had been trying to teach me for many years and I wasn’t getting it. For instance, before I got sick, I wanted to be a powerhouse, dignified, kick ass, business woman. I was going to teach people with disabilities just long enough to get a feel of the educational system then move on to researching autism in the neuroscience field then go on to change legislation, education blah blah blah.

I wasn’t going to be a mom, I wasn’t going to stop and smell the roses, and I cared more about being known a bad ass then the people I actually helped.

I took everything for granted, thought homeless people were uneducated because they didn’t care enough to pick up a book, jobless, because they were lazy, and homeless because they couldn’t balance a checkbook.

Don’t get me started on healthcare I was ignorant as …well.. I’ll keep it clean.

I thought minorities needed to get over their fathers past and move onto the present and that if they weren’t getting what we so called privilege white people were getting it was their own fault in some way or another.

Fat people were lazy and didn’t take care of themselves. People with drug and alcohol problems lacked control. On and on and on.

I thought me and my fine brain with my superior, Mensa level IQ meant many people around me were simple, not worth my time. Belittling people to their face with a side handed shady
compliments were a pastime of mine.

I was fake, like many people I grew up around in St. George, I thought that behavior was normal. I didn’t know what it was to be completely genuine. And loyalty was expected of my friends but if I was unloyal, well, there must have been a good reason.

I was a horrible, horrible, person.

I don’t think god gave me this illness, I don’t believe that’s how it works, it’s the luck of the genetic roulette, however I do believe God does step in when he can and helps things along. He didn’t step in and help my family and I find the right diagnosis, or medicine sooner because I needed to go through hell. I needed for people to take my ego and rip it to shreds. To help me understand the realities of this world. I needed doctors to claim I had Munchausen’s and not believe the very real pain was experiencing so that later in life when someone came to me and said, “I am hurting, I’ve been through hell.” I would understand the importance of believing them. I needed night after night, day after day of excruciating pain to humble and heal the horrible prejudices that were inside my soul. I needed to have to wear diapers, pee my pants and all over floors in front of total strangers so that I could learn humility and not care what people think. I needed my heart to stop over and over and over again so that I could get chance after chance to visit the other side and be thought the things I learned over there. I needed it to happen so frequently so that I wouldn’t confuse those moments with the other moments of DHT release.  I needed to know what it was like to experience odd hallucinations and memory loss so that I would be able to understand what it was like for some many people I now work with today, from schizophrenics, to people with dementia. And I need my bad days, like I have had this past week where I am holding on with every ounce of self control not to burst into tears because of the pain so that all this comes back and I am reminded how much better I am because of this illness.

I now know being a mother and caregiver to another human is more important than any other carreer or political appointment. I now know better then to walk into someplace I volunteer and think that I have something to offer them that’s more important than what they will teach me, and I have abandoned the arrogance that would have clouded my ability to do that.

I don’t take anything for granted. I realize if it wasn’t for my dad’s hard work, and our good luck that my butt would be out on the streets.

I now realize I was a bigot, prejudice beyond belief and a borderline racist. I was so blind to my white privilege it makes me ache inside. How can anyone be so clueless?

I now believe people battling weight problems and addiction are some of the strongest people on earth. Every day they don’t reach for that poison that will ease their pain is a small miracle. And a waist size has nothing to do with how active or physically strong a person is.

My IQ dropped two standard deviations, and then according to my last test went back up a little. That was the biggest humbling experience ever. My words don’t come freely, they are trapped in my mind and I can’t get them to their mouth, like a prisoner I am trying to free them and organize my many thoughts so that I can learn more to further help others. It’s exhausting and taxing. Those that can find ways to progress and grow around those barriers are the true genius.

My family and friends taught me true loyalty. I’ve met people along the way who have taught me how to be truly genuine and the blessing that comes when you are truly one hundred percent yourself every moment of every day.

I am now a good, strong person.

And it’s all thanks to my illness and God waiting until I was ready to heal myself. 

So, if in this moment you are struggling, for whatever reason stop and think, what am I supposed to be getting? I'm not progressing because...and if you can't come up with the answer pray for it. Become vigilant in not yourself, but what is around you, the answer is there, waiting to smack you in the face. Make sure your paying attention or else you will miss a great lesson and chance to become greater.

Within the Bended Light

So there is a story going around you have probably seen about a woman named Brittney who has chosen to take advantage of the death with dignity law. There is also a beautiful letter written by another woman who is begging Britney not to commit "suicide." It's prompted me to just say this:

The beauty life on earth brings to the spirit mind and body together as one, is one that if it were to be described as an action, I would compare it to that of the combination of the force of fission and fusion. Similarly, when the mind body and spirit begin to separate it is one of the most humbling, spiritually revitalizing experiences one could have.

The way life, colors, light and emotions were once perceived seem nothing less then stunted. You look back on life and realize you've been living in the first ten min of the black and white sequence of the Wizard of OZ. The every day life you once lived, now seems so silly, dark, and broken. I miss those times I lived in-between the light and was able to witness the colors and emotions with the greatest intensity of vibrations that one could imagine.

I miss being bathed in music the way one feels standing beneath a waterfall. I miss knowing, and understanding things and having that knowledge feel like a nice warm blanket next to a winters fire. But most of all I miss the love and freedom from pain. I guess that's why I sympathize with Miss Britney, loving the thought that she doesn't have to suffer the pain and confusion that comes before the light bends. And as Kara points out there is something beautiful that comes before death within the grace of our Heavenly Father.

I don't know which one is right, all I know is this: when it comes to that time in your life, whether you have warning or not, don't drown in fear. Release yourself into the arms of His love. How do you do that? Pray, and ask. The calm and peace that will eventually come over you, maybe not at first, but eventually, will be the most beautiful, breathtaking experience you will ever have. Every strong emotion, every oz of love you have ever felt will be rolled up into one big overflowing blanket of peace, heavens love will surround you, then you'll see the colors, and the light will bend. After that I do not know, but I do know it's nothing short of glorious.

Brittney's Side          Kara's Side

Wyatt Earp, Hero or Outlaw?

Yesterday I felt like killing my miniature American Eskimo dog. We got him because some genius told us he was a great seizure and police dog, because they are so good with scents and people. At the time we got him I was absolutely elated because I wanted a puppy so bad. Someone to be with me when I was lonely and someone who can help alert my family when I have an event.
Someone said our little buddy would be able to do all this.

Well, someone must of been on crack, because I don't think the poor little guy has it in his genetics.

We named him Wyatt after Wyatt Earp. If names really are self fulfilling prophecy's then that probably wasn't the smartest thing to do.

On to the story- Last night I went upstairs to get a midnight snack. Coming back down the stairs I slipped on the last steps. I don't know if my leg gave out or what but I was on the ground and my lower limbs weren't working and I had partial control over my top.

I called out to my parents several times, over and over again. Nothing. So I thought to myself....Self, this is why you have Wyatt, why don't you get him to go tell mom and dad that Timmy is in the well. This was his time to prove himself.

I was able to open the door to the basement to let him out, he ran through it, sniffed me a couple of times then ran to the top of the stairs. I was so excited! Yes! He's going to help me.

 (when he was one month old)

He sniffed around the top of the stairs and went into the living room for a second then went back to the top of the stairs and sat again. He turned his head to the side and gave me a "whatcha doin" look.

I then said "Go get momma Wyatt. Go get momma!"

He didn't budge.

"Go get momma baby, please Wyatt, go get momma." I at this point was in a lot of pain and had a crackle to my voice.

He stood up and turned to go to their door, then turned around and came barreling back down the stairs and started licking my face.

He was drinking up my tears and sniffing my entire body. I'm sure I was setting off a scent that was new to him so he felt the need to explore it. Me being the idiot thinking he could understand me began expelling to him that when I smell like this you need to go get mom.

I then convulsed and I hit my head on the banisters railing. My arm twisted and my muscles started spasming so I yelped in pain and then commanded Wyatt again to go find my mom. Instead he took this a sign of attack.

At first he started nipping at my hands and nudging his nose under my arms and legs. This is usually what he does when he wants us to play with him, but after I wouldn't play and my convulsions started getting more sever he started biting and pulling on my hair. I started screaming on the top of my lungs for my parents and he kept nipping, and nudging and tugging. All of a sudden for who knows why he got up on the stair right above my head and started clawing at my hair like he was burring something. I continued screaming and he started biting at my nose.

At this point I couldn't move, I couldn't defend myself so I just had to take it. I think he thought my screaming was some sort of attack so he went bizurk.

(a couple of weeks ago in his santa suit, age five months)

It seemed like forever by the time my parents finally came. I'm sure the whole deal start to finish was about five to ten min but it felt like thirty.

I have a scratch on my forehead down to my nose and a few bruises and I refused to talk to Wyatt all day. The trainer says he doesn't think like that, that he only knows he's done wrong if we discipline him right away. Then he'll forget until we continue to discipline him right after he does it again.

I don't care I'm still pissed at him, but I'm also pissed that my parents were just down the hall and didn't hear me. My dad keeps saying I need to wear an alert button, but what good does that do if I'm stuck, and can't move to push it.

My little Wyatt may be extremely adorable and full of love, but that dude is a little fart. Were taking him to doggie kindergarten soon. Mom keeps threatening that if he doesn't pick up on the commands faster and start "doing his job" that she's going to have to give him away and get another dog that's already trained for someone like me....uh yeah, like were going to pay thousands of dollars for a service dog.

Besides, Wyatt is my baby, how could I give him away?

The Traditional Holiday Stay

It's Time to CELEBRATE!
I finally BROKE OUT of the joint. I'm ready to party... as soon as I can walk!

I'm warning you i'm forgoing punctuation and spelling tonight. Sorry Scarlett frankly don't give a damn!


Last week I checked into the hospital for one very long week, full of tests and pricks. I was welcomed with four pricks to my arm to try to get an iv in my little veins; they sure don't like those needles so they suck themselves in making it impossible for nurses to place the iv.


Finally after two nurses and four pokes they called in the life flight nurse who placed it in my left thumb. That's right, my left thumb. I'll try to post pics later.


I was set up with 27 EEG electrodes atop my fine blond curls and roped to the bed. I looked like I was ready to go to a gay pride parade with my colorful wires. Which was fitting because I kept trying to repeat their motto to myself over and over again "It Gets BETTER!"

The first night was hell because my jerks and muscle pain was at a ten, which made me paranoid that i was setting myself up to be known as the whiny patient for the rest of the week. I didn't care and eventually gave in and begged for someone to help me sleep.


The next day the EEG Spec Doc came in to inform me I don't have seizures. And that they are psychosomatic and I need therapy. Then proceeded to hound my mother about my non existent horrible childhood. We kept trying to explain my main doctor asked for the EEG just to double check for herself but we knew because of the Mayo Clinic my convulsions are brought on by low blood pressure. But she just kept her ears shut and told me I need to love myself and get therapy.


My mom laughed at her. For better or for worse my self worth isn't anything anyone needs to worry about...


This is when I knew it was going to be a hell of a long week because It was obvious she didn't actually read my file she just came in gabbin proving her arrogance was a beard for her ignorance.


My main Doc, Dr S. came in a few hours later and I was terrified that there was a big misunderstanding of why I was there. There wasn't thank heavens, Doc S explained that there was a bit of an education going on and we continued on with the adventure.


The next day after a few more of my wiggly and stretchy limbs Doc Epilepsy came in and apologized,
she kept saying i'm rare, and pointed out all the obvious signs that it war neurological and not psychosomatic. Like the fact that I didn't have any reflexes during my events, my face slid and my heart was funky.


I understand why Doc Epilepsy so easily misdiagnosed me, 50% of people who come in with seizure like symptoms are experiencing psychosomatic related events. However, after I have been to five different mental health professionals (who cleared me) and been down this road before two years ago with another doctor it wasn't a welcome visit down memory lane.


But once we finally got passed the initial annoyance we were able to make some progress. Like I said, we found I have no reflexes during my events. I exercised twice and my blood pressure went from 137/85 to 63/45 the first time and 117/73 to 42/35 the second time. I know i'm awesome. BTW my heart rate was above a hundred both times.


The week was just full of boring headaches and wiggly limbs with an occasional swollen sliding lip until monday. I had to get a spinal tap or LP that night but first I had to have a blood test where I sat completely calm and peaceful.


The intern student doc that was the most hands on kept reminding me to breathe and not think of the LP. But I was wound tight, couldn't stop bickering with my mom (we clearly had spent way too much time together in that tiny room) and as soon as the end of the test came Doc Epilepsy walked in which i'm sure made my levels go way up. So much for that test.

The spinal tap went beautifully thankfully to the Chief Resident who did it. The test for the LP was so complex that not a single drop of blood is allowed or else the whole thing is null and void. Thankfully she got it with such ease I do declare her fingers must be magical.


Right after the LP they stuck me three different times, to get blood, put in an iv for liquid to help me gain spinal fluid quicker and then another whuussy but annoying prick for blood sugar. I wouldn't of minded it so much if i hadn't been pricked so mush early that day.


I kept wondering why they couldn't have spread stuff out more.


Then the nurse came into inform me she was going to give me a shot to prevent blood clots.

amyagainsttheworld.blogspot.com

I couldn't stop laughing, not because it was funny but because if I didn't laugh I was going to either cry or cuss her out. So I laughed then begged her to put it away. I was able to talk her into let it slide since my blood is so thin to begin with, that giving me a blood thinner didn't sound like a smart thing to do.


I stayed on my back for another day then was electrocuted by a test similar to a EMG without the needles. I don't know, i've done it with the needles, and I think it was almost lest painful then the darn probs they had on me this time.


I think it's hilarious that I was so worried about the LP which turned out to be cake but wasn't even concerned about the fact they were planing on shooting electricity up my nerves.


To say the least my inner idiot got punished. Just know, I may have never given birth, but there were points in that test that I would have rather been pushin out a nine pound baby.


I finally went home late that day and had to stay on my back because my head kept threatening to scream out. Migraines after LP's are sign of the spinal fluid leaking which could be very bad, so it's vital you stay laying on your back and continue to drink water.


They unofficially gave me another title to add to my weirdieness. However I won't post it until it's official. The results from the LP need to come back before we can really jump to any conclusions.


So that was my adventure during my 2011 holiday stay at the hospital. One of these days i'll be staying at a spa during the holidays and not somewhere they are electrocuting my spine right after it was stuck with a huge needle.


I do have to say one thing, my parents are absolutly amazing. They were there consistantly which was extreamly annoying but knowing that there was someone there to hit the button when I had an event put my mind at ease. They never complained just loved.

My Tramp Stamp

It's been ages since my last post, and things have changed a little for the better!

I'm completely exhausted right now because although things are looking up this last week has been a hellish whirlwind.

I had a Lumbar Puncture, better known as a Spinal Tap on Wed. It was the second one i've had. The first time it went off without a hitch, but of course this time I couldn't be soo lucky.

I ended up being one of the 20% with the biggest brain ache in the universe that wouldn't go away. I was of course hopped up on pain meds but not even my ridiculous high dose of Loratab could keep the little men hammering away at my skull at ease.

This is the band Spinal Tap. Yes, I know, they have nothing to do with my adventures this week, but believe it or not they are actually much less scary then a picture of the real thing....probably cus they are fictitious.

I'm a he-woman warrior though and stuck it out...that was until I got this mysterious pain that started at my sternum and flushed throughout my right breast and back.

At first it felt like bad acid re flux/heartburn mixed in with a under wire bra that was two sizes too small, but then it started radiating and I collapsed to the floor.

My eyes were bursting in pain from the headache and my heart was playing ping pong along with my blood pressure. But i could barely notice it because of pressure spiraling out of control in my chest, arm and back.

I've never been in that much pain in my entire life...and that's saying something. I really wondered if i was having some sort of heart attack.

So I finally gave in and let my parents take me to the ER. An X-ray, Cat Scan and one "blood patch" later along with a heavy continual dose of morphine my body finally calmed down from its Barnum and Bailey audition.

I was put on 24hr flat bed rest yet again, making it a total of about 48hrs just lying on my back this week.

Oi.

Thank heavens I've got my peeps JN and CG to come and keep me company at my grandparents. CG works in the death business and after my fiascos we started talking about my death, which comes up often, and my grandma informed him that when I die she has a dress that may work for me.

Yup, granma is gonna out live me.

Weirdly i'm very comfortable with that.

Best part of this week, I now have a bruise that's sort of in the shape of lips. I've always wanted a tramp stamp...

Oi. Enough with the Sympathy Already!!!

So here's the thing...

A couple of Sundays ago i pushed myself to go to church even though i was feelin all shiatza. I ended up blacking out and needed to be escorted, practically dragged out by my father. Now this isn't all that uncommon, but usually i sit in the back so when my limbs get wiggly or limp i can just fall over and no one really notices.

Not this time.

I was so bombarded by Facebook emails and texts that my blood boiled. then days later people were asking me "How are you feeling?" The most obnoxious question in the WORLD!!!!

I just told them that it wasn't a big deal, but people always seem to think that i'm being under or over dramatic about it by saying that. They don't get that an "event" for me is the equivalent of a headache for them. It happens all the time, then I get over it and move on with the rest of the day and by the time my head hits the pillow for beddy-by i've forgotten all abouts it.

I just wish people would just realize it's life for me, it's not a big deal, and asking me "how are you feeling." "Are you feeling better." "I've been praying for you." is sweet. but it gets very old very fast.

It doesn't comfort me, it just reminds me, "oh, that's right my body sucks compared to everyone elses. that smells." Otherwise it wouldn't even phase me half as much as it does now.

Chi-Town Time Freak

Source

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.)

Source

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.

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.

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.

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.

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...