I just... ugh

I feel incredibly stagnant.

I have felt like I just need a door to open somewhere. Somewhere, just a crack, I’ll kick it all the way open myself. I need a J.O.B. I need one A.S.A.P. I need something promising to happen to me. I give and give and pray and put in a lot of effort towards wishing other people well, sometimes I just wallow a bit and wonder, “ok, I really am happy and all, but what about me?! When may I expect something back, when will it be my turn to receive?!” So when I feel like this, I resort to the only logical thing – giving more.

I passed my law exam and finally got my pharmacist license. [Uh, now what?] I finished the makeup homework from my course that I almost failed. And promptly, I was down for the count. Three endless weeks of trying to sleep, tending to migraines, and doing my best to hope it’ll pass sooner than later. Four days of no sleep followed by three days of incapacitated migraine, then a few hours of rest only to battle a constant burden of being uncomfortable. And I think the streak ended yesterday. So I’m writing.

The little time in between this battling, I was redirecting my attention back to what matters most to me. People. I have an extraordinary amount of love to give and I have an immeasurable amount of compassion for people. I would try my best to spend one-on-one time with some of my friends. It tires me out a bunch but it is honestly the best investment of my time when I’m not able to do much else. Not only am I giving my individual attention to them and sharing my woes intimately with them, I am keeping myself connected.

I luckily spoke with my friend from high school – who I have always admired since high school band. I read her blog daily and am so amazed that I never knew how incredible she was at writing. I asked her how she gets the energy to remind her self to write every day, and she said “it’s what I’m passionate about.” How did I not know this? I have been passionate about writing since I could hold a crayon and squiggle!

I never want to comment on her blog, because I don’t want to link my blog to it and thus pull the curtain off my anonymity. It’s important that I have a place to talk about my struggles in an uncensored and candid forum. However, I shared my blog with her because she is so candid with her life and I have utmost respect for her passion. I comment on her facebook instead, or tell her through a private message what I thought about her writing. And after talking with her two nights ago, she said something completely profound to me: Start writing again.

Well, I do… and sometimes all the time. But about things that are trivial – like mommy issues or why I find all boys to be duds and how to break up with them without breaking their hearts. Things that ruminate in my head that I don’t really care about but I pay mind because it feels like these things need to be settled and dealt with to be cast aside. However, I don’t think writing about these things to deal with the ‘here and now’ stuff is moving me in any direction – but when I read about concussions and reasons why LENS helps my vision and why my resting heart rate is consistently at 130… I want to move forward, I want to find a way to be creative and announce it to the world and to educate and inspire. I want to be the genius I used to be and I want the endurance to be that genius at all hours of the day without getting tired or falling short to a migraine.

I am three weeks behind on my homework – yes, after finally getting caught up I went down for the count! I am eleven assignments behind. ELEVEN. But nobody’s dead yet. And I think I just needed to find something to write about. I needed to find a little fire. I needed to read about what I’m passionate about; to get excited about solving the mystery of concussions and brain injuries and the desire to teach the world and make it a better place. So I’m incredibly behind and I’m feeling absolutely stagnant, but I needed to write.

Thanks, C. You’ve done more than you can imagine. More than most. Although, I can’t promise everything will now be hunky-dory.

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

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??

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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!!

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..........

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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!

Despite the Boston Celtics Loss today, Brian Scalabrine makes my Headlines!

Logo taken from NBA.com in honor of

playoffs beginning for the reigning champs

All Tough Boys can learn a little something from Boston Celtics' Brian Scalabrine's Story:

1) Post-concussion syndrome isn't very understood - but it isn't very fun either.

2) When people are injured, often physical signs are easy to see. With concussions - be honest with yourself and others on how your feeling.

3) You will get better. It can get worse. But it slowly and gradually gets better.

4) Recovery happens. You often can't push it.

5) Your temperament might change. Scalabrine's wife tracks his moods!!

6) Think positive. Even optimists benefit from support!!

7) Go Celtics :)

8) Go Bruins :) [and please be gentle... despite playoffs...]

9) Go Sox :)
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I saw this article about Brian Scalabrine of the Boston Celtics from Boston Herald.com a few days ago and was EXCITED!! I have been curious about Scalabrine's concussion since it happened in February - announcing him BENCHED FOR THE REST OF THE SEASON?!?!!

Don't get me wrong, I haven't had a lot of juice 'upstairs' in my own head for a while to really pay attention to every detail in the sports world... so I didn't go digging for information. I'm still waiting to hear if Lugo, from the Red Sox, might have had some more serious complications from a concussion last season that has led him to being MIA most of this season (in conjunction with other injuries, etc). Of course, I'm still wondering!

With Boston sports playoffs just off the hook in my back yard - and I want SO badly to pay attention to all of it - this article just made me thrilled to hear about Scalabrine finally!!

And well - the verdict - he has PCS. And the prognosis - well, uhhh - wait and see? Time and rest? Here are some quotes I liked from the article:

Can a touch of pain lead to a spiral away from normal living?:

When the symptoms were at their worst, and Scalabrine suffered from repeated headaches and dizziness that interfered with basic comforts like sleeping or reading a book

Coach Doc Rivers said:

“I just wanted him to make sure that he’s being honest with himself. It’s different from other injuries, where you can look at someone like Kevin(Garnett) and tell from his gait how he’s doing. We literally can’t get inside Scal’s head with this.”

Scalabrine input:

“But I feel that one day I’ll consistently get better and better and I won’t have any more of these setbacks. Even coming now and watching the games there’s a couple of symptoms.”

I know exactly what that might be like. I went to a Celtics game in November - near the time of my first Bruins game. I don't remember the second period even though I know I was watching it... in a seat. And I zoned out for the ENTIRE THIRD PERIOD! I was actually just walking around trying to 'calm' myself... or look normal despite trying to avoid people and noise... until my friend texted me "where the hell are you?! you've been gone for 15 minutes!!" Talk about a wake up call... or text! I was all sorts of turned around!

This tough boy has a lot of brain to him. I'm glad he had the sense to even ask his doctors about what 'kind' of concussion he might be dealing with. But more importantly, in the following quote, I can just see what I was like a year ago - scared out of my mind that I lost my brain! Wanting answers and not getting any. Wanting SOMEONE to tell me I was going to be OK... that I was going to get it back... that the pain would get better... the symptoms are 'normal' or probably better stated: "expected." Scalabrine's inquisitions are not far away from those questions that I had - and I really wish I could have worked side by side with the doctors who are "experts." Who are they?? How can I get a job with them?? Are they looking for a pharmacist that has personal experience with concussions?! (and are they willing to let me start working real small hours and build up my endurance?????????)

“You go to the extreme - like there are six football players who had some kind of self-inflicted death, you read about them. I actually brought that up to my doctor, and he said that’s a different kind of concussion from what I have. I don’t have a situation where the brain hit the skull and then swelled.”

Here's a great tip that Brian gave: Bless his wife Kristen's soul for putting up with the man through his mTBI recovery! I bet she could be a spokeswoman for caretakers and family who deal with the worst of the worst!!

Scalabrine:

“My wife is always keeping track of my temperament, seeing that I’m consistent with my temper, and not getting really aggressive because of this. The only thing I really have are the headaches, which I’m slowly getting rid of.”

Mark Murphy concluded his article with the best sentence that should be taken to heart by anyone recovering from post-concussion syndrome... because you might be out of work, but to hell to those who think it's any sort of vacation!

After all, even the most positive thinkers need support.

Somebody get Skalabrine my number - I want him to start running my Tough Boy Initiative on a larger scale!! Hope you feel better soon!!!!! And thank you for being so honest to so many people despite how normal and fantastic you look!!!!!!

Go. Celtics.
Go. Bruins.
and of course... Go. Red. Sox. Yay!!

And as a side note - I was watching both the Sox vs. Orioles and the Bruin vs. Montreal Game 2 tonight with a friend... and although it was a lot to really pay attention... I remember looking at one of the smaller screens showing the hockey game and thinking - Holy COW. I can read the small print. I can see the score. I can SEE the seconds winding down. I can SEE the penalty clock in the corner. I CAN SEE CLEARLY the three white letters of the score bar AND their scores (5-1 by the way ;) haha) But my vision had been so horrible that even 6 months ago it was as if I wasn't wearing glasses and it was fuzzy and I couldn't figure it out. It still gets that way sometimes... but my vision was amazing today :)

NEdream: 1 Concussion: 0
Let the playoffs begin!

Mood Swings Happen

Oh, I'm an angry Tough Girl...

1) Recognize what feelings you've always had before your concussion.

2) Recognize the new mood swings are often precipitated from being overstimulated.
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Ick.

Ugh.

Argh!

What the... uhhhhh... I don't... just... how do... AHHHHHHHHHHH!!!!!!!

My anxiety has been building all night. I'm not sure why... I'm aware of the thoughts ruminating through my head, but there is honestly NOTHING that has been different or more stressful or anxiety-causing this week that has been more than past weeks.

But this happens sometimes. And all week it's been building. I'm in a "I just want to swear all day" mood. I want to drop F bombs all over the place. I want to tell people to screw off. I want to tell the world that I don't give a hoot about anything they have to say so they might as well shut up. Bother someone who cares.

The ironic thing - is many of these feelings aren't really true. I do care. I do want to know. I do want to have discussions and talk and hang out and yadda... but my anxiety is saying different.

I must have overstimulated myself this week.

I've had a lot of company lately, which I love!!! But I think this wasn't a good week to love it. I have loved it... but at the same time I've been constantly urked by STUPID LITTLE THINGS. Like when I wait for someone who said they're going to show up by 1 am... but I stay up until 4 am waiting for them to get off the night shift - only to wake up at 7 am with a migraine that won't go away for the next 4 days... while you sleep. And then wake up wondering why I'm short tempered and ask you what day it is.... oh... Saturday, for the 12th time. Usually when I've asked for the 4th time... I know I'm having a bad day.

I'm in a Don't F'in Touch Me mood. I'm cuddly by nature... a true female. But this week I cringe at the idea of having a friend over that wants to hug hi and hug by. Don't touch me you slimy, lying, always-crossing-the-line leech! Haha... but they're not slimy or lying... they're my friend that I'm usually leeching onto! What IS going on in my head?!

I have had these types of moody episodes before my accident. I recognize that. Usually they would take part when I hadn't slept because I had 4 exams, 2 presentations, 9 club meetings, 3 nights out with my friends, and a weekend full of working for money... and it would come in the form of dropping things. I would always always drop things.... and it would make me mad, like I could control it. The WORST was when my contacts case would drop into the sink... oooh no it didn't!!!

But this is different. I'm angry at people who have good intentions. I'm angry at people who don't even exist. I'm ruminating over situations that stress me out and I just want to scream about them. I'm having an anxiety attack. I just want to shout several phrases that don't make sense and aren't complete sentences...

I don't even care that.... I just wish I could... I wouldn't even know where to... I'm not even... I can't believe.... if I knew this was.... I don't understand why they.... urrrrgh.

The thing that isn't different, is that I'm probably really tired. Instead of coming from an overloaded schedule, much of this is resulting from an overloaded sensory system. The last few days - regretfully I haven't been outside - have been so bright and sunny. Which I love. But it wears me out and overstimulates my eyes even though I'm still inside with the shades drawn. And its from having a constant migraine all week. It's relentless. I think I have good sleep and then I wake up with a migraine... and all the 'restfulness' goes out the window.

I'm ultra annoyed. I want to sleep. I want to stop hating. I know this isn't normal. I am completely aware that I'm just having an anxiety attack and that it could be from where I was stimulated with neurofeedback last week, could be partly due to being stimulated and not being on a mood stabilizer, could be due to legitimate concerns I have but haven't any reason to be thinking about them right now.

I am very aware that the way I am thinking is not the normal way that I think.

I have this feeling that if I just get up and make myself puke that the world will just get better. It's kind of like if you've had too much tequila and you can't sleep... but if you make yourself puke you'll feel better. I haven't had a drink in a long time - nor am I bulimic - but I feel like puking would somehow cleanse my mind/life of the garbage I'm ruminating over. I know it won't - so I never try it... it's just that internal feeling... and it might be hard to understand.

But I still want to tell people to F off. I want to fight and I want to scream and argue. I want to tell people how stupid they are and suggest ways they could be less stupid in the most demeaning ways possible. All to be spiteful and hurtful. And none of this I really, truly would do... even if given the chance. My blood is boiling and I'm short of breath... and this whole entry might make you think I'm a quack... but its so hard to explain the short-temper that seemingly calm and collected people can develop after having a concussion. Its so hard to even imagine a sweet little girl like me RIPPING APART seemingly caring individuals.

And I did this a lot in the first year of my accident. As I tweaked and reacted and screamed and cursed, I was completely sorry I was doing it... but would never admit it or hold back. Its been a while since I've been this heated.... this angry... this 'I want to tear the world into pieces' annoyed... But it happens. It happens to the best of us.

And I'm truly, truly sorry.

So I hope this post... if anything... just provides an insight into how real these mood swings can be... and how patient and accepting the family and caregivers of newly injured (and possibly those through long-term recoveries) might have to be if they see this kind of attitude in their loved one. Its hard enough on them as it is to knowingly be hurting you and yet not having the energy to hack it out and explain every nuance that's traumatizing their life to you. Try to understand that it usually has nothing to do with you... at least deep down at the root of the problem. And hopefully one day it improves and they apologize.


I just want to cry all over the place. Uggggh but if I hear the garbage truck today I'm going to freaking kill someone. Imbeciles! I need a hug :(

Brain Injury Press

Photo from Natasha-Richardson.org

I know Yahoo.com doesn't have the best cited information - but I stop by for some small information and headlines sometimes when I'm not feeling my best. I like to continue to read, even when I don't think I can comprehend much... and this is the kind of small reading I tend to go to!

Anyway...

The news of Natasha Richardson's death is absolutely horrifying. However, I feel this couldn't be a better time for the increased awareness of brain injuries and just how severe they actually can be.

Since the day of my accident, I have felt that somehow I've been affected at a moment where NOBODY knows much about mTBI. And as much as this fact has stunk up any easy recovery... as the months go by more and more situations arise which start making mTBI a HUGE deal on this planet. This is just one example of the awareness that I feel I might be in the middle of when I'm finally well enough to make a stand and become an educator and advocate about the horrifying ordeal that concussions can lead to.

A few days following Natasha's skiing incident/death - I am not sure the exact date, but had thought to blog about it! - I had noticed in the bottom right of my browser on Yahoo.com "Today's Top Searches" that "Brain Injury" was number 6!!!

Now, I didn't ever think I was going to die. I was in excruciating pain for a good 8-14 months, but I never felt my life was at risk. I had significant pain which I thought I was dying or going to have a seizure or pass out and hit my head again and bleed to death (dramatic I know...). I hadn't had a CT of my brain at the time my head was hit, but my CT of my neck was less than impressive and my MRI of my cervical spine a month later wasn't showing anything significant either. In February, I finally had an MRI of my brain and everything seemed clear. I was thrilled to see I had a brain!! wooooo!!!

I hope this link works. This is a pretty inspiring video of a little girl who was hit in the head by a baseball and was 'talking and she was fine' and had 'a bump on her head, but no symptoms whatsoever' until she started to have a migraine a few days later... she had a similar acute epidermal hematoma (significant bruising/blood clot) to what killed Natasha.

It makes me wonder if I might have had a similar hematoma that disturbed some of the blood flow to the neurons I've had to rebuild over the last year plus. I'm just thrilled this girl was so strong and can't imagine what pain she might still be experiencing - but bless her having the strength to forward the brain injury awareness to the world.

My mother also told me that she heard Obama recently mention in one of his speeches that he was awarding troops or veterans increased funds towards treatment of brain injuries - anyone hear this too?

I know I'm not the best at citing references, etc... but I'm working on it.

Perfect Moment of Relief

Perfect Moment Roses

I received years ago

Tough Boy:

1) Assess the stresses that are preventing you from focusing on recovering.

2) Get creative. Think outside the box!

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An article headline caught my attention just now on Yahoo.com in the Finance section. It read: "More women needing cash go from jobless to topless." Ha. I got a little chuckle out of it. I didn't read the entire article, but if you're interested here's the link.

The irony of this... I've actually thought about this as an option to make money. Thankfully I kept holding out until I could make better decisions; but desperate times call for desperate measures and as a young woman in her early twenties... I kept it in the back of my mind (as for some other options I'm not too proud of!).

Financial stress has always been the number one variable to cause worry and anxiety - even before my accident. I know I'm not alone. With this economy, brain injury or not, anxiety has heightened about how people will can cut back on frivolous spending and maintain their sanity. My biggest concern - and others - from not having any income points specifically to how am I going to pay for my rent, keep my home, maintain the stability and security that is provided from the roof over my head.

I don't have the answer for this. But I do encourage creative thinking. Asking people you know for money is easy when you're raising funds for people you both don't know, for walks and charities. It's a whole new ballgame when you need money for yourself.

How have I done it? I was able to get a credit card that (for a fee) would cash advance money into my bank account, I have an amazing landlord that has let me live month-to-month until I couldn't do it anymore, he moved my 'last month' that I paid when I moved in 4 years ago to be February's rent, and most recently had many prayers answered. I don't own anything and can't get a loan, I've maxed out my credit options, my family cannot help much... so what other options do I have? Stripping? Phone sex operator?... uh... where are my morals???

I needed something that could give me a lot of cash by April 1st. Something that wouldn't require 'working' just yet... I just can't yet. Something that will be easy enough to BS my way through. Something I might enjoy anyway...

Whether God answered or I just got lucky - pieces started to fly together and it started to become clear that the only loans I could qualify for were for education, as long as it was a graduate degree. By the grace of having the stars align just right... I 'stumbled' on a Master's in Social Psychology that was starting on March 2nd - the day my student loans from Pharmacy school would become delinquent. I busted my butt to get the application in ASAP, within two days I was accepted and started the student loan process.

It just made sense. It isn't a free ride - it's still a lot of work. I read Psych all the time and I like to write (even though this stuff requires a TON of energy for deadlines etc...). It deferred my loans for in-school status from the DAY I needed it most. It went off my 2007 taxes (when I worked before I was hit!) and I now have about 11 months of rent coming. The application fee had been waved for a few weeks right when I needed to apply. It's COMPLETELY online and I can do it while still going to RI for treatment or at 4 am on the fourth night of insomnia/migraine.

Honestly - I have to believe nothing is a coincidence. It came at the perfect moment with all the right answers. I believe I'm in my apartment because "someone bigger than me" knew what I was about to go through and believed it would be what I needed to make a recovery through these horrible few years. I had to believe "they" wouldn't take it away from me until I no longer needed it to recover 100%. It was my biggest challenge while trying to develop a minuscule amount of faith. I now have the biggest financial stress on quiet for a while to allow me to focus on getting back into Pharmacy and building up some work endurance ever so slowly.

I am so thankful. Not everyone is as lucky. And I encourage you to continually keep pushing buttons and thinking outside the box. Answers will come at the most critical time - last minute! Creativity, creativity, creativity... its not easy, but just imagine the possibilities!!

March is Brain Injury Awareness Month!!

Pass it on, Tough Boy:

1) March is Brain Injury Awareness Month!! Spread the word!!

2) Still feeling that pain? Look into acupuncture or craniosacral therapy.

3) Do your body good! Avoid the junk. Replace your sugars and simple carbs (like white breads/pastas) and bring in some more whole foods, veggies, and fish that have tons of Omega-3s!

4) Get moving! Just a short walk outside, ten or fifteen minutes. I know, its tough... but it'll help!

5) Check out the other blogs I've collected under "Personal Stories" to the right. They've all got some insight on their own struggles - which might be just like your own.

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Just a quick stop by - as my situation hasn't dramatically changed at all. And I'm quite exhausted still.

But March is Brain Injury Awareness Month!!! How could I not stop by to leave some support to my fellow supporters and those looking for some relief! Spread the word and start creating awareness for our invisible struggle - who knows who'll notice, who knows who will be grateful to have found someone they can relate to, who knows what an impact it could make?? Just send over this link and start the discussion!


Relaying Tips

Got some awesome tips from some great online supports I've been leaning on (whether they know it or not!). Feel free to read verbatim what they wrote in the comments of my last post!!


Colette mentioned that her experience with acupunture and craniosacral therapy - often found at places that do massage and naturopathic therapies - has

help[ed] the pain, energy and feeling more balanced.

Unfortunately, you may find that most insurance companies will not pay for these services.


Broken Brilliant stopped by to remind me of healthy choices. These really do make a difference!

it's easy for me to make poor food choices, and then I can't figure out why I feel like crap.

I first read about the effect of sugars and simple carbs in a book written by Edward Hallowell, Driven to Distraction. It's a great book for those who have ADHD/ADD. However, one way to acquire ADHD/ADD... yep, you guessed it!... is from a mild traumatic brain injury.

I have seen first hand how much the brain 'changes' after a concussion - what makes me think that it hasn't changed how it responds to foods? Then again, ADHD/ADD is also genetic - and right before my accident, I had found out I have the genes. I changed my diet to eat less sugar and less cheese ravioli and cheap pizza - what a difference! So I know making healthy choices can be great!

If you don't want to 'diet,' eat as much vegetables as you want - just make sure you're eating better choices. Try veggies and whole grains. Vitamins and fiber. Proteins are important, too! Fish that contain Omega 3s are brain-tastic (especially SALMON! which I have learned to LOOOVE). Most artificial crab meat also has Omega 3.

Also, BB mentions exercise.

when it comes to my moods, but things like getting moving, going for a walk, etc. can make a lot of difference for me.

ADHD or not, exercise can alleviate a foggy mind, anxiety, depression, and just make you feel a little better.


How'd you find me?

The most common way people find me - is searching for "Happy Face" via Google. All because I linked a picture of that happy face on one of my posts. Oh brother!

But these search words that I stumbled on kinda made me laugh a little: "mtbi and quietly insane"

You don't even know the half of it. hahaha. Hope my site helped them a bit!


Read Personal Stories

I sometimes stumble on other blogs of people who are going through the same stuff. I find it comforting to read their struggles and know that I'm not alone and I'm not as crazy as I thought I was... or maybe I am - but everyone else is, too!

Here are a few that always check in :) Other links can be found under "Personal Stories" on the right.

Colette Amelia's Blog

Kazzel's Journey Blog

Brokenbrilliant's Blog

I've mentioned him before - he was the first one I found!! And he has TONS of information dedicated to just Brain Injuries.

Also, I haven't done it yet, but I'm about to check out the video he has linked - a guy in the Boston area made a 6-part video of his TBI presentation he's been giving for a few years.


Always finding good stuff!! Thanks guys!

Keep Applying, Keep Appealing, Keep Faith

Some small tidbits for a Tough Boy as we wait for Spring, longer days, and more sunshine (for those in North America)!!

1) Apply for your Statewide Head Injury Program (SHIP). Not all states have one, but it's worth looking into. This is the link for Massachusetts SHIP info.

2) Denied Social Security Disability? Here's an online appeal link.

3) Explore other - sometimes less obvious, less solid, less structured, or less tangible - avenues for support. Whether you have faith, want faith, need faith; whether you believe or you know others that believe in something different, religious, greater than you, or spiritual. Pray, have others pray, or dig a little deeper in yourself.

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Today I received a long awaited letter from the Massachusetts Rehabilitation Commission regarding my application to the Statewide Head Injury Program (SHIP).

I have been determined ELIGIBLE!!!!!!

This could potentially lead to a less grueling attempt to participate in vocation rehab - which I so desperately need to begin working again.

Not all state rehab services have a specific head injury program to apply to - but it's worth looking into. I'm also not sure about other countries (such as Canada or New Zealand). This is the link for info on applying for Massachusetts' SHIP.

Even if you aren't found eligible for services, it's important to apply anyway to help create awareness of how, when, etc you were affected by a head injury or concussion. A lot of funding governed towards these programs are allocated based on numbers - and those numbers are probably largely inaccurate for mild brain injuries. It could be your little impact towards better recognition and awareness for this frustrating invisible disability.

Update on My Life

I've been a mess the last few months. Uncharacteristically, last week I had a really great week. However, I am back to experiencing different levels of anxiety, neck/back pain, some depression, and a lot of unknown and uncertainty.

Thank you for checking in on me - for those who have - I'm still alive, just crawling along. I really do appreciate your thoughts and/or your prayers.

Low Energy Neurofeedback System

I know I am still yet to talk about the LENS treatment I've been getting - but I had gotten "too much" neurofeedback about a month ago and it resulted in the most unstable emotional state I've ever been in. Its important that someone who treats you with LENS knows how to go slowly, or to slow it down if you experience a week of instability.

To just touch a little on how bad it was: I cried... no, I weeped and ruminated in a persistent panic attack from the Thursday morning to the following Tuesday afternoon.

I knew it wasn't normal, I knew it wasn't how I think, and I'm fortunate to have been aware enough to know the difference. Needless to say, in that time, I really felt if those feelings would continue until my next weekly appointment, I needed 24 hour observation and a team of qualified mental health professionals to stabilize me. I had called my insurance about inpatient coverage, I had found McClean Psychiatric Hospital and found someone to take me there if I needed, I discussed admission procedures and even discussed with my lawyer, if I were to go what my options would be to cover the expenses. I was completely ready for a two week intensive psychiatric intervention as an inpatient.

There Just HAS to be Something Bigger than Little Me

That Thursday, I went to the book store and bought a book found in the 'Christian' area. For the entire weekend I was finally willing to really devote myself to reading about why 'God' makes people suffer and how 'He' plans to redeem you.

I found a book written by a psychologist that works with adults who were sexually abused as children, Dan B. Allender, PhD. His book, "The Healing Path," was not very preachy - which is exactly what I needed to begin to think about and maybe begin to accept something bigger than me, possibly called "God."

I was baptised both Roman Catholic and also Protestant. I attended a protestant church when I was very young, but my upbringing really didn't stress religion at all. By the time I was attending college, I gave up the fact that the bible would ever influence me. Three or four years ago, I actually flat out denied any faith - if I felt the need to pray, I would deliberately stop myself and say out loud "No, God doesn't exist. Anything I say will be wasted breath."

I can't sit and read the bible. I don't have the patience. I don't understand the language. I need someone to tell me in layman terms. I don't want a ton of (possibly fictional) bible stories as examples; I want real people who believe to tell me why I should believe, how they pray and what he's done for them. I'm a tough critic. But part of it is a readiness to accept a faith and put everything driving me to stress out, hopefully, into someone else's hands. I was so very much at the bottom of the world and ready.

This book was really good for what I personally needed. I am still not religious, or pushing it on anyone, but I am making a conscious effort to believe God has a plan. I am making a conscious effort to pray for Him to love me - for everything I am right now, as I am, despite everything I am incapable of doing right now. This book got me through the week until my next appointment.

Stressed and Overwhelmed

So between getting denied social security, missing the 60 day deadline to appeal the denial, not hearing from SHIP, not getting on a list for vocational rehab services until at least April, not having a dime for April 1st rent and beyond, having to RELEARN six years of pharmacy lingo and thousands of drugs to take my boards March 12 and 19th, and having absolutely NO energy to pull myself together - I'm trying not to freak out. I'm still alive.

One thing at a time. And some things might start to look a little up... but before I count the eggs in my basket, I'm still waiting anxiously for some very critical things to fall into place. Please continue thinking of me and I will try my hardest not to tweak out before jotting down any other things that can help you in your life through your recovery.

If it helps - I'm thinking of you, too.

Just barely getting by

Tough Boy:

1) Just keep going.

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I haven't been myself the past few months. I really have no idea what I've been doing. I have nothing constructive to show for the time that's lapsed since December. I have been struggling to figure out how to keep holding on to some of 'me' though.... The last time I had spent a night with my friend in RI was towards the end of January, but not since December 2nd the time before. I usually hang out with her each time I go down, once a week. Not to say I had completely isolated myself... but I noticed I just couldn't find the energy to watch her sing Karaoke so I just didn't go.

In an effort to pull myself back, I spent a few nights of the last two months trying to be social or once in a while hanging out one-on-one with someone. I just have to make sure I'm still remembering to eat!

I'm just in a funk. I have just enough energy to do the bare minimal of "thinking about" doing things... but nothing to start or attempt to complete projects. This includes my appeal for the Social Security Disability denial decision I received. My 60 days to file has already passed... I just don't have the energy.... :(

I'm hanging on by a string the past two months. It's a rollercoaster I just can't get off. But I'm not having fun anymore. I haven't liked this ride from the moment it took off - or rather, buckled me in.

What does YOUR Consistency List look like?

Consistency, Tough Boy, is the secret to maintaining comfort. Here's a list (in no particular order) of some things that you and I may normally take for granted, but might not realize how significant a small change can affect you while recovering:


1) Never running out of hot water during your shower

2) Heat - not too hot, not too cold

3) A bag hanging on the wall, next to the door you always use, to put your keys in the second you walk inside (yes, I bought a calculator for my keychain to struggle less with my new inability to do mental math... don't judge... it's fantastic!)

4) Family who try to understand


5) Friends who try to understand

6) Hope. It gets better. It has been worse. I am improving. I will still continue to get better.

7) Faith - I'm jealous if you've got it. Say a little prayer for me please if you have some extra time...

8) Safety and Security

9) Electricity, gas, light bulbs, internet

10) Thick window shades to block out the sun

11) Quiet

12) Food and nutrition

13) Daily multivitamin

14) Toilet paper

15) Charged up electronics

16) A decent, sharp pair of scissors

17) Stapler - not jammed, not empty

18) Working pen and post-its or scrap paper, accessible near the fridge, in your car, on your nightstand... everywhere you might come up with something brilliant!! (Which is everywhere)

19) Trash cans in every room to prevent clutter buildup

20) Weekly pill holder

21) Sunglasses

22) Clean underwear - seriously, just go out and buy a ton... I think I have close to 100 pairs. I hate doing laundry.

23) Big huge desk calendar to jot things on - sleep much? migraine today? 2/10 or 10/10 pain? met a friend at a loud bar and were OK? ears rang for three straight days afterwards? Any trends?

I would put my doctor or physical therapy appointments here as well so I would see them every day as a reminder - prevent over-extending priorities and consider these appts the ONLY thing necessary to highlight (highlight for health! haha)

24) The calendar and alarm on my cell phone that is always with me to keep appointments in

25) Earplugs for loud events

26) Fresh milk

27) Food you'll eat in a pinch - I like choco chip granola bars and raspberry nutrigrain

28) Dishwasher - seriously, just use it.

29) Money - but I haven't a clue how to help you here.

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I guess these go into 'organization?'

I absolutely acknowledge that one of the best things I could have been blessed with during my recovery is the pure-luck that I have been able to pay for my apartment (and I have an understanding landlord that is allowing me to pay month to month for a little while). This is my safe haven, my home-base. Things work the way they should, I live alone, I can control my environment, and nobody is messing up or breaking things that I'll have to fix for them.

I haven't discussed the LENS therapy yet (but I will!!) which I get weekly. Therefore, I spend a night at my parents house once a week. A big issue for me is temperature changes. They cause insane nausea when I get too cold, or when I get uncomfortably hot. My parents keep the heat at about 62 degrees. I freeze and the migraines begin, but they're pretty comfortable upstairs with each other's body heat. In my apartment, I have radiator heating and it's always about 70-73 degrees in here. There is very little variability and I stress less knowing there is consistency.

My father has a habit of keeping the water heater on its lowest setting. When I'm freezing, or my muscles are squeezing my shoulders, I hop in the shower for warmth. The relief isn't possible when the water goes cold after 10 minutes. Do I take long showers? Guilty. But in my apartment I have never run out of hot water and I can rely on it being there when I'm seeking comfort from a fluctuating body temp.

Fun fact: Changes in your heart rate can lead to migraines. Some biofeedback methods use a heart rate monitor (called Emwave) and hand warmers. It takes much dedication, attention and concentration (which might be too much to invest) but can be very effective in preventing oncoming migraine discomfort. If you have cold hands, this could be a sign that your heart will fluctuate to keep perfusing your vital organs... warm up those hands, put on a sweatshirt! If you're overheating (if I spend too much time in a hot shower) your heart rate will try to adjust to help you sweat out the excess heat inside your body! Heat changes put a demand on your body, and sudden changes from your natural thermoregulation responses can be extremely uncomfortable! :(

My parents also have their routines of making a lot of noise that they are unaware they are making. Washing dishes and clinking them all together, watching TV louder and louder, or when the phone rings with its obscenely high pitch; all these environmental noises I couldn't control with my family who didn't understand my sudden irritability and discomfort! Noises get louder as you get more tired. Sometimes, the pure vibration that I could feel in the walls from the television was too much. I don't have an explanation for it. It can be very difficult to communicate to people who have no clue if you're just trying to pick an argument or if you're seriously debilitated as the noises pile up.

Thankfully, after 6 months of trying to adjust to me, I have become a little more tolerant (where I'm not angrily cursing, but politely reminding them) and they have been a little more aware of their own actions when I'm home. My mom even found wireless headphones that my dad uses to watch the TV - they're a blessing!! I've got to take a picture... he's hysterical. You can't pick your family, like many other stories - mine hasn't always been there for me, but even the little efforts go a long way. Therefore, family is also on my list.

Finding consistency and reliability is a huge step towards increasing your comfort. It sometimes might be taken for granted until you are moved into a 'new' place with different amenities and rules. Obviously not a complete list, and highly individualized to my experience (and my scattered mind today!), so feel free to create your own!! And then make sure the things on your list stay in order to make your life a little easier :)

QEEG - Quantitative EEG

To begin Low Energy Neurofeedback System therapy (otherwise known as LENS) I've been going down to RI once a week for the last two or so months to begin my neurofeedback.

One of the first meetings was to take my brain map to get an idea of where my brain isn't "normal." It's called a Quantitative EEG. They put a swimmers cap on me with tons of electrodes attached and 'injected' goopy gel into the holes where the electrodes are. The gel is supposed to aid the conduction of your brain waves to be read from your scalp. These maps are utilized in many different disease states - depression, epilepsy, migraines, ADHD, mTBI - and are pretty complex. They can be taken while you're doing a project, like talking or reading or math problems; they took mine while I was to sit there with my eyes closed and told not think of anything for 12-13 minutes.

There are several brainwaves that are always present under that skull of yours. Depending on what you're doing or if you're injured their are different ratios of those waves present. But it takes someone really educated in the mapping to interpret them (for example: ADHD kids will show too many delta waves, increased theta waves, decreased alpha and no significant change in beta waves all in the prefrontal and frontal lobe area... I'm not sure if they have to be doing something or just sitting there for that combination).

The waves are given names in groups of different frequencies. Delta are generally the waves 1 Hz to 4 or 5 Hz. Beta waves are the higher frequencies - 12 Hz to 25 Hz. High Beta include faster waves to 30 Hz. The program they use to measure all your frequencies that are present at the same time sorts them and creates colorful 2-D pictures to give you an idea of where it picked up how many, what amplitude, and by each frequency (1 Hz - 50 Hz) and by the clusters of frequencies that would make up each kind of wave.

This is an example of one of my faster waves in the Beta range:

It really doesn't tell you anything except there is more in the back right of my head than the front. The real information starts to come when they take this data and create more 2-D graphs after comparing your info to those of people in your age range and gender that are "normal" or "healthy" or people with no injuries or problems. If you are "normal" and just like everyone else like you should be - you will have a completely green brain!!

My alpha waves are perfect!!

The scale on the bottom is a standard deviation scale - based on a general bell curve I believe. So Green is normal... and Blue would be very low, Red is WAY WAY WAY too much!!

So this is where the cool part comes for people like me - who were starting to think they're a hypochondriac because nothing is showing up anywhere. MRI, CAT scan, whatever - nothing is wrong with you. Well I got hit in the head and things just aren't right... but there's nothing to show it.

Here's one of my higher frequency (28 Hz) waves after being compared to normal people - can you tell where I was hit? Can you see where my migraine was the day I had the map done? THIS IS SO VALIDATING!!!

And then when grouped into High Beta (25 - 30 Hz) it's an average, but still very clear to me!!

Sooooooo cool. It's pretty much used as a diagnostic. And guess what - I got hit in the head and my brain waves changed.

People with mTBI generally have WAY too much delta (the slowest waves, present when you're at your deepest sleep) and WAY too much beta waves (the fastest waves, present in anxiety and panic attacks) that can be seen where their injury occurred.

This... THIS is a mechanism. This is why my vision in my left eye has been ridiculous, this is why I'm just not the same, this is why I get easily over stimulated, this is why I can't think correctly all the time, this is why I've had to relearn everything in my life, this is why my personality has changed, this is why my sleep schedule is screwed around, this is why something actually happened when I was hit. This is what's wrong and where we can begin to see where I can benefit from LENS therapy. Which I'll talk about next...

Drugs or No Drugs

Tough Boy:

1) The first place you'll go is to a Neurologist - they're great if you're having problems that need medication.

2) Find a NeuroPSYCHOLOGIST that has worked with brain injuries, head injuries, whiplash/car accidents, concussions. They can't give you drugs but they know more about the cognitive part that many neurologists aren't educated about (but they can give you the referral!!)

3) Can't find one? Visit the Brain Injury Association state directory - give them a call and ask if they know any neuropsychologists in the area that can evaluate you and your brain injury.

4) Ask questions... and if you're on drugs - talk to you pharmacist! They'll go over your medications with you and might know some things you won't get from your doctor!

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My neurologist gets a kick out of seeing me every 4-6 weeks. Why? Because I'm the pharmacist that doesn't want to take drugs.

This isn't entirely true. I know a lot about drugs. I believe they can be an incredible aid towards the quality of life or even extension of someone's life expectancy with certain diseases. I believe they are important and a crucial part of health care - when used correctly and monitored appropriately. Drugs get a bad rap sometimes but I'm a firm believer that they can be pretty extraordinary... again, if used correctly.

The trouble is - even as a pharmacist, especially now that my circadian rhythm is all screwed up, I'm not taking things correctly (same time every day, 2 hours before or after eating dairy, missing several days in a row because I'm sleeping, etc etc). And there are many important little tidbits people just aren't aware of with their medications. Just another reason why it takes six years to get your pharmacy degree, and another reason it's a Doctor of Pharmacy and not an Associates or Bachelors. And why patients should ask any and all questions to their pharmacist to get them involved in their care.

I know a lot about medicine and disease states, which made it very difficult to be the patient when I was at the worst of being sick. The majority of learning about pharmacy is learning mechanisms. There's a mechanism to why your heart isn't pumping efficiently and there's a mechanism to how it can be fixed - and generally there's a drug that performs that very mechanism that will make you feel better or extend your life. But with a brain injury, with everything I had been going through, there wasn't a mechanism. There are symptoms that resemble other disease states, like migraines and dizziness and fatigue, but the why and how wasn't there. The only mechanism - "you have an mTBI, you had a concussion." So until I know what is going wrong, until someone can really give me the mechanism - I haven't been too keen on taking a bunch of their suggestions (however, if I were having seizures I'd be taking those drugs!!).

My neurologist finally talked me into taking a 'triptan' for my migraines. It was like breathing. I'm smart, I've had my 'brain' start coming back slowly, I've been re-learning my mental math, I've been understanding things a little more and a little faster as every month passes, and I've been very slowly seeing parts of my personality come back. I'm just living in this cloud of a constant migraine, sometimes worse than others, sometimes with head pain and sometimes with just insane nausea. If I could just get rid of the cloud, if I could just breathe, I could regain so much of my daily functionality! Taking the Axert that first time, I was like... "wow."

Imagine being in your hot shower, or in a sauna for too long that it's hard to breathe and hard to get much other than heat into your lungs - then you get out and open the door and... ahhhhhhh, breathing. The colder air fills your lungs and your panic decreases and you can think and... ahhhhhh, breathe. I decided that day that the next time I would go to my neurologist I'd say, "yes, give me the Topamax," I know it works for people who have migraines, I know it is known to work, I know I've read the literature, I know that I need to live without the migraines.

I went to my neuropsychologist the next week and he agreed that I'm really smart and I could function better if I could get rid of the migraines. Great, same page! But when I mentioned the Topamax, he was adamant about trying something else first, "don't go on Topamax, you have such a good brain, you have so much potential." Apparently, in his 30 years of experience he has seen that Topamax really does work - but it has some cognitive decline, it has a tendency to make people lose a ton of weight that is really unhealthy for them - and being so young and smart he didn't want me to experience the potential decline, and being tiny already he didn't think I could afford to lose anymore weight (and I completely agree).

He suggested to try biofeedback. The following week, my neurologist was not thrilled that he had talked me out of the Topamax and believes that biofeedback would take way too much time and attention to get results - and I think he's right. However, back at the neuropsychologist, we decided that Neurofeedback, a pretty new practice, might be the answer for me.

In a few more months, if this neurofeedback doesn't help me as much as I need it to in order to start working and having an income again - I'm going to see what drugs would be best for me, and Topamax might be it. But until then, I at least know that this recovery is expected to take a long time as it is, so a few more months of trying something unconventional isn't going to be much of a loss. Just think of all the things I can gain!

Impact of a Stroke

My grandparents on my mother's side have been there for me throughout the past decade of ups and downs. This past year especially.

My grandmother has always been a spitfire woman. My grandfather is absolutely the love of my life. At 83 and 87 years old, they celebrated their 64th (yes, sixty-fourth) wedding anniversary on November 18th. They are often up and about, still driving, and don't take more than a multivitamin. My grandfather would tell you - at his yearly checkup everything came in clear as day; cholesterol is perfect!

I love my grandparents. When I worked weekends for a few years, I called them every Sunday morning for some small talk before it got busy. Every holiday or anniversary, every birthday or every picture they sent me, I would send them a card or a thank you note. Both things I haven't been able to do in over a year - it's been too overwhelming or too much.

I am fortunate to have them close by, so when I started therapy in RI, I was leaving my mother's car at their house and my gram would pick me up at the T when I needed to drive down for a few days. Since July, I had been lucky to start seeing them a lot as I would get my attention and processing therapy or whatnot.

My grandmother has never been very tactful. She means well, but she surely lacks tact. I've had to ignore some of her comments and remind myself she means well. Such as "If you just went back to work, you wouldn't have to play all these stupid games that aren't getting you anywhere and you'd be just fine," or "you start to wonder how far 'support' goes until you're just plain babying someone..."

And it's OK, I know she just doesn't get it. I know I don't get it sometimes. I know that a lot of people just don't understand. I know there are instances where people have concussions and they are, indeed, perfectly fine. But I know more than ever, there are cases where that bump in the head isn't just a bump in the head and there are serious things wrong. I know because I'm sure I've been bumped in the head before and was fine. I know because this particular bump in my head was more serious and definitely changed my entire life and future.

Throughout all of this, accepting that she and others do not understand, I have never once wished they would. I have never wanted anyone to actually "get it," and the day I walked into the hospital and saw my grandmother absolutely beside herself because she "got it," I could only relive the dispair I had felt a year ago after my accident.



The Friday before Thanksgiving, my grandmother had a stroke. She's doing OK. She looks great - really great - fantastic actually. And she hates hearing it. As I do.

She gets it. And when she sees me when I visit, she just cries and says sorry - which causes me to cry and not be able to say anything except "it'll be OK, it comes back..." She asked me "how have you done this for a year, this is just so frustrating, how do people do this and not just want to quit?"

She can't do a lot of things she used to right now. She is beside herself as she tells doctors that she can't mechanically write, the words are just scribble - I got my love of writing from her, I got my verbose and often superfluous nature from my gram. She was going through old stories she's written - and she can read, and she's shocked she can still read when she can't write. She's also shocked she was able to do so much before. She gets it.

When I went in to visit, I brought my favorite photograph of her and my grandaddy from a few years ago to have at her bedside. I also brought some playing cards because she loves solitaire. Lastly, I brought her a 'word search' book. She loved the photograph - as it connected her to people who care about her. The cards and word finds - just made her discover some new things that are harder than they were before.

She speaks very slowly and is processing things even more slowly. On Thanksgiving, I watched as my family talked so normal to her and she pretended to listen, but her response just showed it was too fast for her to understand. I slowed my speech for her to answer her when she asked if she had just stayed at home and not gone to the hospital if she would have been worse. And she got it, she understood. She's still bright, just different. She gets it.

That day in the rehab nursing home, as the family was around she was telling us about her decision to be DNR. She was asked if she understood that it meant "do not resuscitate?" Her response was that she absolutely did and she doesn't want to live if she has another stroke. I don't think she will, most strokes that actually become a DNR decision happen one after the other, and their clots are just firing all over the place. But I don't think she'll have a life threatening one. And if another one happened, she just might become a little more disabled... this woman could probably still run circles around you and I. But the point is that the loss of who she used to be has had her thinking about dying. Her brain injury from the stroke has completely taken the life-loving spirit out of her. She gets it.

Finally, touching on personality changes that happen to those brain injured, some people, like me, get angry and resentful. However, my grandmother's clot was in the area of the brain that "controlled inhibitions." She went from being a stickler to saying outlandish, hysterical things! My father said, "Holy smokes! She is not herself, she's practically ready to run Saturday Night Live!!"

As comical as that is, it still breaks my heart. It had frustrated me that she didn't understand before, but I would go through it all again - the pain, the sleepless nights, the frustration, the anger, the loss, the fear, the unknown, the desperation, and all the struggling through this recovery - I would do it all over again if she never had to know. If she never had to really understand what I was going through I would experience it all over. Watching someone you love go through this, for me it resonates so profoundly because I've been through it. I get it.

When your day begins as an Epic Fail, you haven't necessarily failed at Life!

Alright, Tough Boy:

1) Don't be too hard on yourself. If you're not ready to set expectations, it's okay.

2) It's OK to say no.

3) Pay attention to what overwhelms you and think of ways to lessen the impact. IE: Receiving mail. Lessen the impact by having someone else go through it, or putting it aside until the anxiety about it has passed.

4) Take a deep breath and keep reminding yourself that nobody died because you couldn't do something.

5) Celebrate your progress.

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It has been a long while since I have had anything intelligent to say... (ha! and not just here!). Sometimes, well actually quite often, I get easily overwhelmed with the idea of an expectation. If I think I have a good thing to write here - I just get so overwhelmed and end up not writing anything. I can't pin point it on a migraine, on being exhausted, or even having something else to do. I just freeze and I'm really not good at handling any - and I mean ANY - stress above waking up.

Mail stresses me out (paper mail, e-mail, facebook messages). BIG TIME. Paper mail: I don't open it and put it in a bag on my counter... when I'm feeling like I can open/sort through the bag in an objective manner without the attached anxiety... I'll go through it then. There's a lot I can throw out which helps. There's also a lot of things I know I can't do anything about right now but stresses me beyond belief!!

Waiting to go through these letters takes away the urgency of "respond today or die," because honestly - I'm still alive. It'd be ideal to delegate these things to someone else. While you're recovering - your brain stops trying to heal each time stress comes at the forefront. It is a totally different lifestyle than I was used to before my accident, but I've definitely had to remove any and all stress.

Being reminded of how capable I seem vs. what I'm able to do stresses me out. So, I celebrated my one year post-accident a few weeks ago. A friend of mine who I used to tutor in Organic Chem took me out for dinner to "celebrate" the amount of healing and number of obstacles that I've hurdled over slowly. I have a long way to go but I wanted to re-address my perspective to focus on the optimistic "wow, look how far I've come..." outlook. I never thought I would have come so far past the excruciating pain that plagued me for 8 or 9 months. The pain I have now, although obnoxious and still debilitating at times, is far less than even four months prior from today. And for that I'm thankful.

I was about to attempt the first day in over a year that I would plan more than one activity to complete in one day. I failed miserably. I had planned to join a friend at her yoga class in the morning and then I had planned to attend my first support group for 'high-functioning mTBI survivors.' I failed.

I don't know what it was- anxiety, expectations, exhaustion?- I wasn't able to sleep until 6 am, then not able to wake at 730 am. Finally at 10 am, I wasn't able to officially wake up or fall asleep. I had to cancel on yoga. By 1230 pm, I was still feeling overwhelmed and cancelled my trip to the support group. I couldn't sleep and my migraine was prominent. Finally at 4 pm, although still exhausted I felt like I could try to accomplish something. I bought some groceries :) I'll try again in a few weeks...

It's so difficult to come across binders full of post-its, accomplishments, plans, or my resume of a million-and-one activities I could organize and execute with my eyes closed while going to school full time and working on top of that... the contrast to what I'm struggling with now is more than apparent and quite frightening. I miss my superwoman self. Every day is a new day to remind myself that I still have much needed time to improve and recover. Thankfully, I'm still seeing improvements... but it's OK not to be superwoman while I'm recovering. I look fantastic, but these obstacles are real and I can't force them to come back all at once - but they will slowly come back. If they don't, I'll learn new ways - I'm not lowering my standards for myself that easily!

For Maria's Daughter

5-year old Tough Girl:

1) She knew about the sunglasses before even reading about it! Get the darkest ones you can find - they're gold :)

2) Take a nap if you start feeling cranky. Just pass out!

3) Dark, quiet room with a comfortable temperature (if not a few degrees cooler than perfect) is ideal to recharge in.

4) Skip the TV. Not a good idea when you're dizzy/confused/head hurts.

5) Turn off all noise. (I wish I could tell my neighbor this... it's 5 am, and their party is still hoppin'! ugh)

6) Vibration is tough to drown out - mp3 player (creative zen) - with music that doesn't have high or low pitches. Also might be great if your ears are ringing!

7) If your fingers are cold, put them on your temples or cover your eyes. A sleep mask or "beauty mask," on the cooler side would feel great on the eyes.

8) Gatorade or pedialyte.

9) Decrease any stress! ASAP! Save it for another day! Find ways to deal with stress - hot bath, meditation, reading... whatever you enjoy doing that doesn't take much "brain" to do.

10) Hang in there!! It gets better... more comfortable days are ahead! Even though they seem soooo far away!!

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That's the beginning of what I've got. I am 11 months post-concussion - and I'm writing this at 5 am, in which my headache has not subsided from yesterday afternoon. However, I can honestly report that I am quite sure the pain and migraine is definitely not as bad as a few months ago. I can honestly say, although not able to estimate to what degree, the migraine gets better as time goes on. My sensitivity to light and sounds has become more tolerable. I have more hope than I've ever had before. And as the fog thins slowly, I find more glimpses of the intelligence I have missed sooooooo much!!!!! That intelligence gives me hope that I have not completely lost the "old me." I'm in there somewhere - and I'm going to pull that girl by the hair until she pops back out of the black hole she fell into!

.......... So Maria's little girl............
I'm going to underline suggestions, I tried to put most at the top - but there are always a ton!

What a smart girl! She should work for me - I have no income of my own to pay her at the moment... but I want her on my team! I remember the day it dawned on me to wear sunglasses; or the day I first wore them inside (back in June). It's like breathing. Like the moment you can't stand to be suffocating in the heat from your shower, you hurriedly open the door of the bathroom, and - ahhhhhh! Breathing :) She's brilliant!

In the first year after a concussion (which I'm still in, so it's based a lot on what I've read...), the most crucial thing someone needs is rest. The first 9-10 months, and I'd like to think a little less often now, becoming overstimulated happened so easily! I couldn't rest enough. I couldn't get enough sleep to deal with anything. The sun was brutal. I eventually completely isolated myself to stay inside with the lights off and all noise cut off. I can handle more sun now, often a few days in a row - I still have some majorly bad weeks, but I think a lot of time and rest has really helped my brain heal and slowly take more stimulation in without killing me.

Lay your girl down with her favorite teddy bear more often than before. If you feel she's getting confused, squinting, getting cranky, blocking her ears, changed disposition (talkative -> really quiet)... it might be time for a nap. The best atmosphere is somewhere dead quiet. I would be more upset from hearing the vibrations of a TV through a wall when I knew I just needed quiet rest. And I couldn't even hear the TV, didn't know it was the TV, and nobody in the world would be able to feel the vibrations I could feel. As parents - try to make an honest, exaggerated effort to be quiet. Put down the dishes, turn off the radio, stop walking around, go outside and clean your car out at the bottom of the driveway away from her window... There is something ridiculous about how hypersensitive someone becomes when they have a headache/confusion relating to post-concussion. For example: I can't stand trash trucks. If there happens to be a national announcement about a strange tire-slicing bandit that targeted all the tires belonging to garbage disposal trucks in the greater Boston area... I may be very grateful. But for the record, it wasn't me... I'm just sayin'. :)

I've read that a cooler environment is helpful. I don't like it too cold; I feel my muscles tense up and I may start to shiver - both make me feel worse. But too hot can also increase blood flow and blood pressure etc, which if her migraines are sometimes vascular related, there's too much blood flowing too fast to her head causing pain... so this isn't good either. For a sure shot, just ask her, aim cooler while arming her with a plush and comfy blanket. Touching her temples and forehead or covering her eyes with a cool cloth can feel pretty nice - again, cool, not freezing!

I went from going to Fenway Park for 20+ games last season... to only being able to tolerate one a month - if that! And two of those games, I saw in RI with the Pawsox because the crowd is a lot smaller. I'm a die-hard sox fan... and I eventually had to completely walk away from following them after the game I saw on Aug 9th. I just couldn't handle it. And I still can't handle too much of watching them or even knowing if we're winning or losing during the game!! I digress... it's ALDS playoff season...

But limiting TV might help. The biggest issue with concussions includes a decrease in processing speed - With television, the frames change so quickly during shows, people talk real fast, and the lighting seems to resemble flashing sometimes - all are not very easy to tolerate after a concussion. You get stuck on one frame, and can't transition throughout the movie/episode/Red Sox game very quickly - causing frustration and more confusion = stress and more headache.

Some weather may exacerbate the confusion/headache cycles. The days that are 'hazy gray,' overcast but bright. Perfect example: The day right after fall becomes too cold to skip the gloves and boots; it's a gray sky full of clouds and it's about to SNOW ANY MINUTE. And then you see that first snow flake. Right before you see that first snow flake - that's the 'hazy gray,' relentlessly mind-wrenching weather that does something to the sunlight that shakes up a brain recovering from a concussion. Sunglasses are very helpful - but there is something unique about the fractionating of light that makes this weather disruptive far after you've invested in the best pair of shades. It's overcast that makes your brain fizzle. Before a thunderstorm, before snowfall, before a light rain shower... I have nothing intelligent to suggest in guarding against this weather phenom!

I wrote about frequency of light being a problem - but I also believe there's an issue with frequency of noise. Turning off all noise, if it can be accomplished, can help settle the brain down a bit. But those trash trucks... when they come around, I'm sure to grab my iPod! Vibration can be very difficult to drown out, but can make someone VERY confused and disorientated in a short period of time. She's young, but there's a small Creative Zen player you can find for cheap at BestBuy. Load some Disney princess songs on for good measure - or something else :)

I had a very hard time getting back into some of my music - and still have trouble, but it's getting better! I had to stick to songs that were relatively even-keeled on the sound frequency/pitch. Dave Matthews (minus extensive violin solos), Rascal Flatts (minus tons of bass), no screaming, no new songs that I did not know the words to... and I absolutely hated listening to "I kissed a Girl" because there's an incredibly high pitch in the chorus that just hurt.

If in silence, her ears ring, listening to an mp3 player might also help distract away from it. Sometimes the ringing can become nauseating. Teach her not to ramp up the noise too high either. There's a theory that the ringing happens from a sudden stop in the stimulation to the hairs in the ear that measure the noise... not sure where that theory is from....

I'm not sure if she's old enough to realize how significantly different her balance gets when she's dizzy... five-year-olds are very observant, but I'd love to hear about how she communicates it all to you. Much of the dizzy issue, for me at least, would be considerably worsened because I was extremely scared. I would wake up to my alarm at 7 am, and on my way to my alarm clock I would get WICKED dizzy. Then around 8:10 am, I would wake up from the floor and realize the alarm was STILL going off. I would get half way up and my vision would just disappear, I'd feel like I need to puke, and I'd become drenched in sweat. And the advice I received from a physician was "take a deep breath." I wish he hadn't been so rude about it - it really is great advice. Let her know that it will continue to happen for quite a while, but it's all part of her brain adjusting and healing. If she stops freaking out about it when she gets dizzy, she'll be on her way to controlling some of the hyperarousability that may be adding another layer to her migraines.

Dizzy upon standing? Get up really slow; my blood pressure still drops 20 points between sitting and standing. Hold onto the wall/door knob whatever is close when she gets dizzy and until it passes. The best advice I ever read in the "Coping with Mild Traumatic Brain Injury" book I invested in: While walking, touch the fence you're next to, continually graze the bushes as you walk - touching something stationary and guiding your path can help to "re-ground" your footing. I do it all the time. I'm awesome at faking 'normal' - but my best friends know when I can't see clearly or walk straight, I'm usually skimming the walls with my finger or reaching my arms out to sweep the fence as I walk. I'm also usually trying to laugh a little about it so I don't stress myself out and worry myself to a point of no return... which still happens and is so not fun.

I drink a ton of gatorade. Staying hydrated is key. For a little girl, there might be too much sugar in gatorade. But in contrast to water, there has to be something positive about maintaining electrolytes. One day I'll run a study and prove it - but you'll have to take my word for it... I feel a little more "balanced" when I drink gatorade; and I'm yet to successfully feel I can switch back to water. For a kid - in the baby section of most retail drug stores (Rite Aide, CVS, and even Shaws, etc) there's a great electrolyte drink called PediaLyte. Highly recommended for children and elderly (and adults of any age) who experience vomiting and/or diarrhea and need to rehydrate. It's a simple electrolyte formula usually in "original" or "orange" flavor; but it doesn't have all the sugars found in gatorade, powerade, etc. And of all those, I prefer the original gatorade - primarily because it's history to make the Florida Gators football team perform better... so it's data based in my head :)

I'm a writer at heart. And when I can't write, I enjoy reading. I also enjoy taking pictures. Find something she can 'mindlessly' do to distract her from the pain and discomfort. If she can't fall asleep, if she's cranky and irritable, if she can't sit still, if she just has to get moving - what could she fall into that she'd enjoy enough to stick with it despite being uncomfortable? Something that might relax her. I REALLY love the way piano keys feel on my fingers. I don't know how to play yet, but I can bite the bullet to teach myself some notes of a simple song in a beginners book. For me, there's something therapeutic about the feeling of making music through my fingers with those cold weighted keys.

Talk to your daughter before she gets into her headache. Stress is a huge factor for post concussion migraines. She's lucky she's not worried about returning to a job and paying for rent on time! But if you're asking her in the middle of the worst, "what can I do to make it better?" or "what will help you?"; it's not the time. The feeling of the migraine is so hard to explain. Especially if she experiences migraines without head pain. But I know the moment my face goes numb, the nausea kicks in, or my arms fall asleep - I need to remember what has made me feel better before. I'm not going to come up with anything while I'm in critical mode and can't answer questions, let alone correctly hear what you're asking. Come up with a plan while she feels good and can think about what she'd like you to do. Come up with a plan how she can tell you to just leave her alone for a few hours if needed. I can't tell you how many times I've belligerently screamed at my mother because she just wanted to help and didn't know how... but I just needed her to stop asking me questions so I wouldn't blow an aneurysm. Your daughter is five, I am twenty-three... big difference I know... but the stress of questions at the wrong time may impact how quickly it's possible to recover from the headache.

Yikes - I've written a lot. And at 6:30 am, the party across the hall has shuffled out.

Lastly, your daughter is very young. Chances are, this is her first big bang to her head. If she has another, the pain and headaches may get worse or take longer to resolve. The sensitivity to light and everything else gets worse and has a higher chance to become permanent with: a) the more injuries/concussions sustained, and b) the older the brain is. At five, your daughter has a brain that will reap the benefits of plasticity! Plasticity is something brains have been seen to do, and recently explored and discussed. It's the ability to change and to rewire. The ability to grow and heal, often remarkably overcoming deficits and injury. Many mature brains have demonstrated this plasticity, but are more 'hard wired' through the years and aren't as pliable as a child under the age of 12 or 13. And she's smart! If she hangs in there, hopefully the over stimulation of lights (and maybe sounds), the dizziness (and maybe confusion), and the irritability will begin to lessen in severity and/or be more tolerable. Take this time to learn relaxation techniques (which I haven't been able to do yet... so I have no real advice...) such as meditation, breathing, etc. Find and abolish things that irritate her - always reaching too far for her crayons, put them down a shelf; always losing her fake-car keys, hang a small bag next to the door where she can always put them the moment she gets home ;)

It's a rough time - but it could be a great bonding time to really communicate with your daughter. She's really lucky (maybe also because she's so young) to have someone who truly wants to do everything they can to help her feel better. You can stop by and make me dinner any night!! haha... I have a hard time eating, I'll write about it later.

Best of luck!! Stop by and let me know if anything helped, or how she recovers. Or if she has some suggestions herself!