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.

MOO

Have I mentioned my AWESOME stomach? Along with my whacked out nervous system, third uretor, and paradoxical brain I have an awesome slow moving-lazy stomach…that hates lactose.

I’ve been gluten sensitive for a while, realized about two months ago that I’m showing a little bit of gastroparesis downward spiral and my doc put me on a strict diet limiting to things that digest more easily.

No raw veggies, only white bread, if I eat fruit I skin it first. I can only eat meat and eggs when I prepare it certain ways, for example, scrambled eggs don’t digest as easily as a little nervous over easy egg does. Then to top it off I’m not just sorta lactose intolerant, my stomach starts reenacting it’s own version of Texas Chainsaw Massacre as soon as that drop of milk touches my tongue. Apparently I can’t have bread, chocolate, or anything else with even small traces of milk in it.

I won’t die if I have milk, but over time my stomach will start looking like a crack addicts pot-holed skin face. But the only immediate consequences I get are constant trips to the bathroom, vomiting like crazy and tootin like a boy scout around the campfire.

It could be worse I guess. I could be completely gluten intolerant too…or be trapped in a cage with Sara Palin and Gene Simmons.

Growing up I always wondered why cows always hated me. I figured it's cus we'd go tip em over every night....Did they know my body secretly hated them too?

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...

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

Source

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.