Exercise, the Poor Man's Plastic Surgery...

I am so excited! The day I have been waiting for has come! Since 2008 I have been put on extreme exercise restraint via the docs and about a year ago they took away all things heart pounding.

This sent me into a deep depression because I have probably an unhealthy obsession with Turbo Jam and Tae Bo.

 But today I was given the go ahead for seven and a half min a day! Yup that’s right folks, this powerhouse gets to exercise two and a half min three times a day with this little machine…

 

I’m only allowed to use my arms; go about the distance a snail travels in an hour at the speed of a turtle but at least it’s something right?

At physical therapy I tried to convince them to let me do it longer but theys strapped a BP cuff on me and of course after a literally one and a half mins of turning my statolic dropped thirty points...so I lost that fight...

I also ordered my wheelchair finally a couple weeks ago so that now I will be able to go out twice as often. It’s been so annoying because although I hate shopping for some reason Love grocery shopping and haven’t been able to in I don’t know how long so now I can just hop in my little zebra striped glow in the dark chair and go! They say it takes 90 to process and make the chair so I’m dying on the wait.

And lastly can I just say how thankful I am for my momma?!? She is so freakin fantastic, and my dad has been such an angel. They get it. I could not go on without them. I’m so proud to be their daughter, so lucky. They are the best examples as human beings I have ever met. Well besides Monson and Eyring.

I’m so dang blessed!

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.

The Sense of the Unstressed

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

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

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

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.