Brainy Nerves

I took a quick gander through my blog, and not only was I reminded that I never remember anything I write, but that I haven't given the latest details of my diagnosis. So here they are and I'll keep it short.

Some how, don't ask me how I have no idea other then the fact my Spinal Tap was involved; they figured out that the neroceptors, and receptors in my brain are deteriorating and not firing correctly. Similar to Parkinson's Disease. However to my understanding Parkinson's involves the whole nerve to malfunction and break down.

Hence the reason why my symptoms are spastic and have a relapsing/remitting nature.

At this point any news, even the bad news, is good news.

The Pure Me on Thanksgiving

Happy Thanksgiving to ME!

This year is the first year since 2008 that I will NOT be in the hospital for Thanksgivin'!

I know, crazy cakes!

For some reason every year they have always managed to let destiny plan my stays (for overnight EEG and other testing) that covers the week of Thanksgiving.

Last year I spent the entire month deteriorating at the Mayo Clinic, however this year I get to be closer to home eatin turkey with the grandparents!

Sadly I have not escaped this years tests all together though. In December I'll be stayin a week or so at my states amazing Hospital that is one of the top notch research hospitals in the country! The heads of the Neuro and Cardio, Gyno, and Gastro departments will all be collaborating Mayo style to get in my brain and figure out if there's anyway we can slow down this madness.

I'm excited for the hope this brings me and my wonderful parental caregivers. They surely do need a break too so having someone else coming to my rescue for a week will be a huge burden lifted.

BAD SIDE....I have to go off ALL my meds. They want to see my body as clean as possible to see exactly what it does on it's own. So far I've only gone off three of my million...okay eight...medications and already I'm a limpy wiggly child. I don't know if I'm going to survive a few more weeks of detox. I am really happy I get this opportunity though. I'm always so scared that my meds may be causing extra symptoms so now we'll really get to see. The pure me.

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...

Babies!...I can't believe i'm talking about this...

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I just have to say how thankful I am for my life. I was watching last Friday’s Barbra Walters Special, (“The matter of life and death”) and as I listened to David Letterman admit that sometimes he finds himself sobbing uncontrollably because he’s so happy to be alive, I could most definitely relate.

This next month my only brother is having his first baby. I’m completely ecstatic! Honestly I’m not the type of girl who sits around dreaming about one day being a mother, however a couple of weeks ago I helped out in my friends churches nursery. The Kids are all so sweet, I have many friends with many babies, but usually it doesn’t really phase me and I never get baby hungry.

But there I was in nursery holding this little boy not more then a year and a half old, talking as if he’d been talking for years, telling me about how he got a bruise on his head. His big blue eyes, soft squishy skin, and cute little voice made me melt. For the first time in years I thought it would be nice to have a kid of my own. As long I was guaranteed it was just like him of course.

I’m scared to be a mother because I know that if I were a mother right now I would not be able to take care of it as I should. In fact we’ve been discussing getting me a dog, we finally found one I liked and before we went to get it my mom sat me down and crushed me with the reality of things. I couldn’t take care of it on my own, and my parents, as much as they would LOVE for me to have a dog, are too exhausted taking care of both me AND the puppy.

That hurt…not gonna lie. The feeling of being a failure has already consumed me because I’m not near where I should be with school, but this was the first time it really hit me just how much of a burden I am on my parents. They try to tell me that I’m not and assure me they don’t mind taking care of me but the truth is I’m a lot of work on my bad days. It HAS to be exhausting.

So how can I be so selfish in even entertaining the idea of being a mother. I’m excited to be an aunt because then I can still share in some of those moments with my brother and sweet sister in law. It’s still hard to come to terms with though.

People always tell me not to worry that I’ll be healthy enough someday to do everything I want to do; I believe it for the most part. I will be well enough to carry on with school and my career. I’ll live a very happy yet not so healthy- productive life.

I just don’t think it’s a reality for me to have kids in this condition. It wouldn’t be fair, the guilt would kill me and I just think it would be selfish of me. I'd have to marry rich and hire a nanny.

I love my heavenly father, I know that with his help I’ll get through all of this. It’s just moments like this, I kind of with I could talk with him face to face so he could help me feel better about whatever is supposed to be.

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.

Small Favors of Real Angels

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Angels don't have to have wings. I don't like calling people hero's because I believe that the acts that "hero's" do should be standard behavior. However it's obvious that so many of us ignore our heroic intuition inside of us so those who do stop and listen should be noted.

My dad ran into a doctor that's one of the top cardiologists in our states biggest hospital chain. He somehow knew of my condition and asked my dad about it. He didn't have to, it must be annoying having people bum advice off you every day. But this doc didn't just listen and give advice but he offered up others doctors names who specialize in my disease. Who will hopefully really be able to help. He ended up emailing my dad the names, and a secretary to whom he called to let her know we will be contacting her soon.

It wasn't much, it only took a few minutes out of his day. But we have gone from doctor to doctor and the times we get someone who truly listens and doesn't just nod and half care, are few and far between.

I realized I can't complain any more about the docs who don't care; because I also brush aside and half listen to many of my own conversations. Hopefully now i'll be able to live as todays angel and go that small extra mile that will be able to make someones day.

It's Salt's Fault

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Part of my new life is I have to intake 10 g of salt a day. Yes...10 grams!! The average person has about 3-4.5 g a day. I also get the pleasure of drinking 2.5 liters of water a day. I'm supposed to drink Gatorade but i'd almost rather drink gator pee...I said almost.

I pour it on my food, in my drinks, and guzzle it plain because the salt tablets that have been prescribed to me cause instant up chuck.

You ever need to get poison out? Just throw one of those monsters down ya and out it'll come!

Still with all the guzzling and chugging back i'm not getting even close to the suggested amount.

My dad's threatening to install a salt lick in the back yard for me.

... he loves me so much?

Professional Nonsense

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Calling all idiots: Maturity is purely biased on opinion. A serious life is nothing but a stubborn one. An elitist prude is just as much of an uncultured swine as a redneck white trash wife beater. And my generalized judgmental remarks are just as sophisticated as a four year olds sense of self.

My maturity peaked when I was twelve; it’s just been down hill since then. But what really decides maturity? Is it the way we communicate with one another, is it the way we react to society’s unspoken rules and morals? Is it our experience with life’s obstacles and trials?

What about professionalism? From my observations we gauge ones professional behavior on how serious, devout and unattached the worker is.

This certain behavior is what I’ve generally experienced with doctors. I truly believe they mean well, but the healthcare system has become a physical wellness version of a fast food chain.

My diagnosis along with thousands of others have been delayed, overly scrutinized; yet over looked because of the manner doctors and health care professionals have approach the situation.

My experience however at the Mayo Clinic pretty much shattered my generalized belief of what the health care system is capable of. They prove that professionalism does not require a doctor to become aloof and unattached to be able to fully provide the care needed for their patient.

Between battles with insurance and doctors, it took me three and a half years to get to the Mayo Clinic. I was told there was a possibility of getting help there but not to get my hopes up. From the moment we checked in the organized offices, patient/customer service and bedside manner blew me away. For the first time in years I felt like my voice was actually heard. They listened to every detail; every concern then they attacked the problem, not the patient.

I had a team of doctors from different specialties gather together with and without me to talk specifically about my case.

In two weeks I had more tests knocked out then I had within the last two years. Each test examined by each doctor, evaluated then the results were immediately passed down to me. It’s been believed that I have POTS , although my disease has a lot of similar symptoms it’s actually caused by my heart rate and blood pressure having minds of their own, along with other random glitches in my system.

My old neurologist told me flat out that it’s impossible that I’m still fainting because I have a pacemaker, yet we discovered that is far from true. My heart rate can be high because of my pacemaker and in normal range yet my blood pressure can drop to freakishly low levels.

Never give up and never surrender your patient rights. I had to push my local doctors to give me a second chance and allowing me to go to the clinic. The medicine and therapy regimen my doctors have put me on has completely turned my life around. I still have my bad days; I still sometimes have to push myself one moment at a time. My bones still freeze muscles still spasm but my energy is up along with my hope.

You don’t have to be a hard ass in order to be a good doctor. I think it’s funny that many judge Doctors abilities about his knowledge about medicine. But what good is that knowledge if you’re too stubborn and cocky to see the whole picture or judge the patient too quickly. Professionalism is not run by maturity, but by common sense and the ability to see with your eyes and not your ego.