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 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.

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.

Lemons

Source

Got word today that a trip to the Mayo Clinic is definitely in process. It wouldn’t be so annoying if it wasn’t for the insurance company giving us a run around. I find it hilarious that in them trying to avoid sending us there and instead bumping us around from doctor to doctor we end up costing them even MORE money.

I’m just thankful we have good insurance. Goodness only knows the hole we would be in if it wasn’t for that safety net.

I’m staying positive this week even though I wasn’t able to go on a camping trip with my friends that we have been planning for a while. I’m obsessed with the outdoors almost as much as I’m obsessed with music.

However the night before the jaunt my heart started doing its thing and then the wiggly limbs began. I ended up on the hide-a-bed with my feet straight up in the air and my muscles spazing. I was so wiped out. Not going to lie, there were tears.

BUT

I’ve learned to keep my mind off of the pain by finding amusement out of it. I mean if it wasn’t for the pain just the idea of massive heart palpitations and uncontrollable spasms in odd places in your body would be pretty funny to have.

When I was growing up my best friends dad was a Physical Therapist. He had this electrode thingy that if he placed it on the right part of our arm or hand a muscle in a totally different spot would start spazing. We’d play with all the time and thought it was awesome. So I just go back to that. Hey if I thought it was awesome then, why can’t I glance down at my thigh and find the twitching entertaining now?

If you don’t let it be a burden it won’t be.

I'm going to head to a concert this week to make up for the camping. I bet it will be worth it. One of my best friends dad gave me this awesome art piece too that I probably would have missed out on if I went up. See, when life gives ya lemons, stick em in your bra!

And THAT is how you make life perfect my dears! <3 span="">

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...