Saturday, August 29, 2009

Rollercoaster... can we have more coast and less roller, please?

Sorry for the two month hiatus, lets see if I can explain. To make it easy (for you or me?)... or possibly to add a little dimension and fun to this post (again, for you or me?)... we'll try a list format!

June 1: Started two classes - Lifespan development and History of Psychology
Way too much work for me to accomplish
Work submitted is A+ ... yay!
Work submitted late is 0 ... boo!
Work not submitted is 0 ... boo boo!
Played 'Ketchup' all three months
Ended Lifespan course with a 76%... a C... and I'm thankful.
I took Lifespan 4 years ago and ended with an A
Ended History with a 43%
Did not complete 7 assignments, one being a 10 page paper worth 40%
Talked to financial aid
Talked to Advising
Talked to disability
Talked to professor
Everything will be ok
Take out the 7 missed assignments, I had an A
Prof gave me an incomplete and until Oct 5 to complete these assignments
Yay!
Enrolling in only ONE course for next quarter
I found a shadow in my shower, in the shape of a heart
...what else???...
Scrapping down after running out of money
Down to 98 pounds... so much for trying to stay around 107
Explored my attachment style in one of my papers - I have mommy issues
Explored my personality in another paper - I'm pretty cool
Still going to RI once every two weeks to get LENS
Started a medication that my neurologist could lose his license over if audited
First 13 days, I didn't have a migraine - just a few faint headaches
That's a miracle
Last month wasn't so bad other than the stress of incomplete school work
Needed to schedule an appt with vocation rehab... like 3 months ago??
Saved all my bday money to retake my Law exam to be licensed
$75, finally
Hadn't heard about my app for 6 weeks, so I called
$75 was the processing fee
I needed $185 for the actual exam - seriously?
If I can't figure that out, I shouldn't be allowed to take it
Needed a job to make money to take exam
Needed to take and pass exam to get a job
Uh? Anything wrong with the past two statements?
Less eating = more money = money for exam
Taking law exam Sept 3rd... prayers accepted in any form
I saw the fireworks on July 4th over the Charles in Boston
... I know there's more??...
My apartment's a mess
I became pretty isolated for a little while to figure out school and exam
Was pretty apathetic about anything or anyone else's life, or new house, or new car
When I'm upset... I look happy and smiley... don't you worry!
I gave up in trying to save the world for now
I need to belong to an institution to get a grant
My school doesn't have a place for me
I applied to some jobs and its competitive and I don't have my law exam yet
I applied to a couple small jobs, and I'm overqualified
I asked around hoping someone would want to do research with me and they don't care
So I'll wait until I'm in a better place w people to support research
Whatever
I tried sushi for the first time courtesy of my friend Caleb from HS, who's now a cook
... anything fun??...
I went to a bachelorette party with my highschool girls
We had glow bracelets
Every guy asks to have one
My response "what will I get out of giving you one?"
No wonder I can't find a relationship
Their reply "... fill in blank here..."
Which translates "I won't follow through on anything... I should get one for free"
I no longer have patience for "You like to give and I like to take"
I'm absolutely bitter
My girls met guys and blew off the cab I found, but I had no money to pay
He wouldn't let me walk 45 minutes home
Drove me for free while I cried hysterically in public for the first time
Gave all four glow bracelets to the cab driver for his daughters
He deserved so much more than glow bracelets
Still shamelessly humbled by the generosity of a stranger without much to give

...ummm, anything else?...
Maybe that I'm really sorry
This blog hasn't been what I had intended
And still hope for
my Tough Boy Initiative hasn't been ground breaking for anyone
And certainly won't get me a gig public speaking around the world about this
Which I would love to do

Monday, June 29, 2009

Coincidences

For my birthday, I cruised Barnes and Noble. Being around books and reading 20 or so pages from any book in there is my way to relax when my migraines aren't subsiding or my nerves won't calm down. Seeing as I hadn't slept in days and needed to catch up on all my homework that I fell behind on... I went to calm down in the book store.

I came across a book by Robert Moss, which I bought as my bday gift :) It's called The Three "Only" Things: Tapping the Power of Dreams, Coincidence, and Imagination

In the 20 pages I read before deciding to buy it, I read all about instances of coincidence. Some might think this is a little hokey-poky... and I respect that. But if I could tell you some of the things that have been going on since my accident that are just way too perfectly timed to be just a coincidence - you might think differently.

These past two or three weeks alone, I have had some of the most BIZARRE coincidences. Including having a friend from 2005 whom I met during a week long Habitat for Humanity build (in TX) find me on a networking site... the coincidence is that I had completely been thinking about my trip out there and thinking about how I wish I hadn't lost touch while clearing out the numbers in my cellphone DAYS before he found me.

Another was spotting a book that caught my eye - went over and turns out it is EXACTLY who I need to teach me a ton of things that will help me 'change the world' with my research. The coincidences: first page I started to read announced that her therapist shared my lovely first name; it discusses the exact things I had just stumbled on that day and needed more info on; and in one chapter she talked about her summer vacations - IN MY HOMETOWN?! huh??

Last example I'll throw out there. I was trying to find an objective measure for my research on June 25th - found something that might work... might not be it... looking around the cite to see where they're located? Totally came across a convention they were showing this $5,000 machine at: where else but in Boston, at the nursing convention that was held... dun dun dun... June 25th and 26th. (and I still didn't make it down there...)

So the last three days I've been thinking of someone who I held very close to me for many years in college. A few nights ago, I had the best dream reliving some of the time I spent with this person. I haven't felt so comforted and safe in a long time... it was a really great dream where I just couldn't stop smiling and didn't want to wake up. But I have no idea what made me think of this person. Made me miss them, though. A ton. These coincidences lately have made me also paranoid (haha!) I'm going to run into them and not be able to see them because my vision stinks... or I'd actually see them again or hear from them and not know what to say... or they wouldn't recognize me... or it would hurt all over again.

But nothing yet, and maybe I'm just freaking myself out :) hehe With all honesty, though, I'd love to hear from them more than anything these past few days. Or at least send some good Karma their way :)

Thursday, June 25, 2009

I'm About to Change the World

What this little Tough Girl (aka: ME!) needs:

1) Research Funding

2) Objective measure of variables of interest that will bring medicine and neuropsychology together

3) Participants with verified symptoms of interest from a recognized diagnosis

4) Connections to the NHL/MLB/NFL/Army to test some participants who have sustained obvious concussions


So how do you feel about that??

---------------------------------------------------------

I'm on to something big. Actually, no. Correction: I'm on to something GINORMOUS. (yes, that's a real word as of the 2007 copyright of Merriam-Webster's Dictionary).

I've put together a ton of information. I just haven't been able to put it into a concise readable document yet. I have support from a few professors and even my neuropsychologist that thinks I have a legit clinical trial on my hands... and will train me on his equipment to do the work... Phew!

Also, my neuropharm advisor thinks I'm on to something he hasn't been considering in his mTBI research. And I think he's going to let me do some work in his lab to prove a connection between certain variables and how it affects learning and memory. But that isn't working with people, it's working with Murine rats.

Over my recovery, I would have more and more times where I would feel this brilliant. But it would only last a day... once every two months. I call them EUREKA moments!! In essence, I feel like I could cure cancer. And not because I'm manic and having grandiose delusions, but because I'm legitimately wicked smaht.

This Eureka moment has been going on for about a month. Straight. Well, with a few days of exhaustion in between.

I've fallen extremely behind on my psychology classes. As of June 1st, my work load tripled. I'm at the point where I could probably sustain a job of SOME sort (wooo!!) but I want my energy to be pumped into this research. I think I could change the world this this. But it's got to be pro bono because I'm not really associated on a payroll with anyone who would be open to these kinds of new projects.

But I'm completely running on fumes in my financial realm (after maxing out both my credit cards and being denied further credit). But I don't want to just give someone else the idea - because there are so many intricate details that not only relate to psychology, but will pull in neurologist and pharmacy and the healthcare community could begin to see (and fucking believe!!...'scuz the swear) the problems going on in brain injuries that have NO MEDICALLY OBJECTIVE EVIDENCE. I don't want anything to be missed and not considered.

I want to cater to people who are working their hardest to do just as much as they can do and are frustrated. I want to cater to people who look so great. I want to do this for people who are told there's nothing wrong with them and they need to "lower their standards for themselves and the doctor's who are treating them." I want to give them the data that proves that the doctor's actually shouldn't be lowering their own standards because they are working with a patient that is extremely smart.

I just want to help people feel better. And it's coming together. I just have a few more steps to go.

I'm about to change the world. But I still need a little help... If you have any ideas - let me know!!!! PLEASE!!! Even your supportive prayers will be heard :) and thank you in advance!!

Saturday, May 30, 2009

Some Fantastic Articles Involving mTBI

One thing that I really like about all the 'new' data being published about concussions... it spans a really broad area of health care. From rehab, to neurology, to psychology, and also on the molecular level. And I love the molecular level.

Understanding the nicks and knacks of different proteins and hormones and cytokine or prostanglandin mechanisms and pathways... there's so much to know. There's so much that is unexplored!


Here are a few articles discussing the Tau protein found to accumulate and be part of Chronic Traumatic Encephalopathy (CTE). CTE has been found in post-mortem brains which were subject to multiple concussions throughout a lifetime. In particular, from football players.


This is an EXCELLENT article written Mark Kram for the Philadelphia Daily News:
Deadly Aftershocks


Here's a pretty awesome picture showing the differences in a 61-yr old brain that hasn't experienced concussion in comparison to two 45-yr old brains (from the men in the story above) who experienced multiple concussions. This is to show you the damage caused by the tau protein they're talking about. (I haven't figured out how to get it to show as a picture instead of just a link... sorry!)
Click here for picture!


In addition, the daily news reports NFL concussion management standards, outlined recently - May 2007:
Special report: Deadly aftershocks: NFL concussion management

They're interested in protecting players from being Tough Boys...
The NFL will establish a "whistle blower" system so that anyone may anonymously report any incident in which a doctor is pressured to return a player to play from a concussion or that a player with a concussion is pressured to play.


Keith Primeau, who played for the Philadelphia Flyers Hockey talks about his experience with post concussion symptoms on the USAToday site:
Former NHL star Primeau warns of concussion risks, by Janice Lloyd

He's among the athletes who have agreed to help the Sports Legacy Institute and pledged their brains after they die to the Center for Study of Traumatic Encephalopathy at Boston University.


To move North a little. Dr. Michael Cusimano, a neurosurgeon in Toronto, did a little digging among hockey staffing and young players. United Press International (UPI) had a quick summary of it here: Many in hockey don't understand concussion

The study, published in the Canadian Journal of Neurological Sciences, found:

-- Up to two-thirds of players had the mistaken impression a player must lose consciousness to have suffered a concussion.

-- One-quarter of adults and up to half of children could not identify any symptoms of a concussion or could name only one symptom of a concussion.

-- About one-half of players and one-fifth of adults mistakenly believed concussions are treated with medication or physical therapy.

-- About one-quarter of all players did not know if an athlete experiencing symptoms of a concussion should continue playing (they shouldn't).



Just a little reading I thought I'd share.
Beautiful day out today! Wish I could enjoy it all day! (but I got a few good spurts of enjoyment out of it!)

Thursday, May 28, 2009

Twitter

I joined twitter.

http://twitter.com/NEdream26

Why?

Because it is quick. When I sign in to write - there's so much I want to write. So I either A) Write a ton!, or B) Don't write.

Also, people ask me quite often, "so what's your average day like?" Or, "how often do you get migraines?" To be honest, all my energy was taken away from jotting on my calendar in the kitchen and put towards my school work. I stopped keeping track. So if I'm not sleeping that night, and I'm up with a migraine (not because anyone who wants to 'follow' me will care)... its a quick thing I can jot down. And every so once in a while, I'm tempted to say, "I don't think I've had a migraine all month..." but in reality I was asked on a day I didn't have one and probably just don't remember it.

Quick. We'll see if it's actually more or less work. We'll see if it becomes just one more thing to do or if it actually is a faster, less involved way for me to keep a journal of my recovery.

Sorry I've been busy and overwhelmed and trying to get a life going... I haven't reported much! But you can find me on Twitter! http://twitter.com/NEdream26

The updates should come up on the right side bar where all the information links are... if I did it right??

Hope you're all well!!

Monday, April 27, 2009

Stroke of Insight Video - Jill Bolte Taylor

I want to be the Jill Bolte Taylor of Concussions.



This is such a great video featured on Ted.com.


I've learned so much about all angles of the brain. And today was just a great day where I had a lot of great conversation with some of my pharmacy professors - and a lot of talk about my recovery. Funny to hear that they have been talking about me, too!

My neuropharmacology professor, who I did research with a few years ago, had just told my story yesterday apparently. His sister in law was talking about her "type A - I'm going to conquer the world - there is nothing I can't accomplish" son who was just in a car accident... and he looks ok but his life is impossible to resume. I was humbled to hear that he used me as a respectable same-case example. I've completely looked up to him over the seven years I've known him. I must have intuitively known he was thinking about me!

He is actually working on mTBI stuff right now, which is pretty cool. I have some crazy ideas to what might be going on... but obviously have to be studied. If there were anyone on earth to take my thoughts and get the answers - it'd be this man, after publishing his 240th accredited journal article. He has a heart of gold and listens to me try to figure things out without knowing some intricate details about neurotransmitters that would greatly change how they react or affect other neuronal processes.

I believe a lot of the changes that happen in strokes are very similar to what happens when you're hit in the head or have whiplash. In a discussion with my neuropharm professor he mentioned that he's found a lot of chemical changes that occur in the brain after a stroke. He's studied some drugs around it, too. Nothing really speeds up recovery, only a potential for preventing damage. However, nobody thinks they'll have a stroke and nobody thinks they'll get hit in the head! Tough to prepare for something that 'would never happen to you!'

It's a great day today :)

Saturday, April 25, 2009

Call for Backup

Tough Boy tip of the day:

1) When things are spiraling, call someone who really won't mind sweeping, dusting, doing laundry, etc.

2) Wear those sunglasses! You're not a solar unit that gains energy when basking in those rays!!


3) Don't ever let your grocery cart look like mine..........








------------------------------------------------------------------
As you recover - you'll find some more comfort than before, you'll experience a longer 'better day,' maybe have some more better days each month, and you will SLOWLY feel a bigger push to just be you again!

I've felt this push a lot. I know there are things that are better. I would like to say I have more energy. I would like to say I'm closer than ever before - which I am, but I still have a ways to go.

The last few weeks I've been looking around at my apartment and started to realize that my energy is still being completely depleted at the end of each day. I might be completing my assignments (barely) on time. I might be doing more math, I might be a faster reader, I might be having better conversations and feeling like I have more energy to have an educated life again. But in all honesty, and naturally, I have let other things fall by the wayside while my priorities changed.

The order of my apartment is important for me to find things. It's important so I feel I have some structure. It's important so I can recover without losing pieces, defaulting my credit, or getting mice in my house. And often, when things are a DISASTER - I feel less put together myself. My health slips, the care of my skin slips, if I can feed myself comes out when my weight slips, my relationships with friends and family slips, and it was very hard to see it happening until everything looked as if I was now a disaster!

My 'income' right now is coming from my psych program. The energy I have been pummeling into my assignments has been redistributed from the energy I had for self-care. But I had gotten so disorganized... I had to call for backup.

Thank goodness for the people in your life that won't just 'say' "if you need something, call" and then disappoint. Thank goodness for the people who don't question why you need help putting your clean laundry away. Thank goodness for the people who will put your dishes into the dishwasher and press start. Thank goodness for the people who will listen to you verbally vomit about your life and whats on your mind and whats building up and not hold judgement or rumor or make you feel like they don't care.

Thank goodness for my friend, Maria. I've known her since I was about three years old, we lost touch for years when we went to college and recently keep in touch every few months. But she is one of these people. Not many exist.

I've stopped therapy in RI for a little while - I need to put my life back together. Cleaning was just the start. I need the energy to get through my course and do the final project. I need the energy to reapply for accommodations to retake my law exam. I need the energy that was being spent on going home, then going to RI, then coming back... just for a few minutes of LENS therapy. Although, I'm torn. I know I need it. I go there because its too much to start all over. I go there because of my history of them documenting my recovery. And starting over is just so exhausting. But I can come back when I think I can...

I think my energy is increasing. But the level of my functioning is also increasing and eating off any of the extra that I've gained. So I'm only capable of doing X amount of things still. I could do that amount when I had Y amount of energy. But as I recover I have a little more - Y + Z amount of energy. But I'm still only capable of doing X amount of things. So where's Z energy going??

I think I can account Z energy being allotted towards the 'simple' functions that are 'reconnecting' in my brain. I might not be doing more things, but I'm doing things more efficiently. Like my memory. Recognizing faces. Shortcuts. Remembering things I talked about with someone a while ago that relates to a conversation I have today. Being able to follow a conversation and not have to stop and ask what a word means - its understood rather than dwelling on it. But that little detail of remembering a definition without having to look it up, in the flow of a conversation IS IMPROVEMENT! It does take energy though...

SO that's my rant. Call for backup and get back on track!

Happy Spring!