Learning about mTBI

Helpful Hints:

1) Learn. Learn. Learn. Read everything you can about mTBI. After you've canceled out every diagnosis that doctors actually know something about... and TBI seems to be your last hope... READ, LEARN, QUESTION EVERYTHING YOU CAN FIND ABOUT IT.

2) Keep track of what you learn; you might forget later.

3) Find someone you can relate to - on the internet, in real life, in books. Justification for the problems you are facing can help a lot in recovery.

4) Know that you know what you're experiencing is real.

5) When people doubt your symptoms - Read and Learn all you can about what you're going through, and where you might be able to get help from someone who's seen the same problems before.

6) Stay tuned. I'm always reading to keep my brain functioning. If I find something good - I'll try to put it here!

7) I believe you.
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It breaks my heart to read about people with medical issues that are just not recognized. It breaks my heart to see people less fortunate than myself. It absolutely breaks my heart to know I am having these frustrating difficulties and absolutely struggling day to day... and then to pass by people who are visually more disabled than I. It makes me feel selfish. It makes me feel ignorant. It makes me feel needy and pitiful. I feel absolutely ungrateful and dramatized.

How could I stand here absolutely confused and uncomfortable when I am fortunate to have graduated college and live alone? How can I claim my physical strength or my cognitive skills have ceased from a once notable level; I am capable of reading, learning, writing and communicating in a way that I may seem outstanding still? My awkwardness is not often perceived by others and fishing for words is not easily noticed. How dare I feel I need help when I should be helping others??

It breaks my heart that in a time where I need the most help I've ever asked for, I still debate the necessity of putting myself first. It breaks my heart to have isolated myself from the thousands of people I used to know because I can no longer do favors for them or solve all their problems. I have isolated myself because I look so 'normal' and don't have the energy to waste on arguing with the people who knew the 'old me.' I have isolated myself because these people see what I see - other people who are visually more disabled than I.

Lastly, what breaks my heart more than for those less fortunate or my own struggling, I feel so much remorse and compassion for all of the people in the world who also feel lost and frustrated. I might have mentioned this before, but today in my daily "reading" I came across another example of someone going through the same frustrations... only four years after trying to adapt to his changes, had he started learning about mTBI and making sense of his issues.

This guy particularly interested me because he referred to himself as a "high-functioning" survivor. He's intelligent, had always been a hard-worker and persevered. Most takes I've read that are seemingly "most important" around this topic are stories about people who actually needed their head cut open, are now quadriplegic, lost all ability to read and write, or have to rely on other people. Very few instances have I found someone that does not fall into the "severe or moderate" category of their accident. Very few examples have been mentioned separate from those added to 'broad symptom' overviews. Very few have I been completely able to relate to.

He calls himself brokenbrillant; he started a blog with the same compassion I have for others just like him. I'm not sure how long he worked on what he's put down - but it's slightly more organized than mine. And he hasn't written anything since January... which I'm guessing has to do with him pouring so much energy into educating others with his blog that he "just couldn't" do it for a while. No big deal - maybe he'll be back to say more, maybe not.

He has written somethings that I swear I've said outloud and he just wrote the words...

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

I find his blog particularly humbling. Support groups are wonderful for any disability or particular subset of struggles. Dr. Ed Halowell - one of the gurues in ADHD psychology - started the first ADHD support groups and wrote about the amazing results his first 11 participants... or 16? I don't remember. These people were functioning and a little disorganized but clearly capable to live day to day - but were astounded to relate to others who understood them!

His blog is humbling because I need the support right now. A friend of mine whom I don't see often said to me a few weeks ago... "stop mentioning your problems, talk to me as if you're normal because I don't see or hear anything wrong with you." Although I'm sure his intention wasn't to hurt me, the fact is that I am stuggling. If I don't talk about it and work through it, or find ways around it, I feel lost. It's a big part of my life right now and I need support. I have not had the energy to quite find support groups at this time - but I read about another story of a former PhD in Economics, graduate from Duke and Yale. Her take on support groups:

In Austin, Anne eventually attended a support group. At meetings, she looked around at the quadriplegics and others with severe head injuries and felt fortunate but not always supported.

As difficult as it is for me to 'take time to heal' and to put myself first for once, I need it. And there are other people out there that need it to. I left a comment for brokenbrilliant saying, "for what it's worth, I believe you." I hope to hear from him. And I hope sometime down the road I'll find a ton of other "high-functioning" TBI survivors that will give me another chance to say "I believe you." Because although it doesn't get less frustrating, I know it's worth a lot to be believed.

Does this milk smell bad to you??

Brilliant:

1) Keep a Sharpie marker next to the fridge

2) Write the date you open the milk on the carton (or other perishable) on the day you open it for the first time! Right then! Before you pour it!

3) Write the expiration date found on the bottle, if more appropriate. But make it BIG so you can see it!

4) Check the date written on the carton and check your calendar every morning before adding milk to your cheerios....

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Not a great day today. Not a great last two weeks. I have a lot of times like this actually... but I'll try not to go down 'pity-me' road ever. However, I had originally wanted to try to have SOME sort of organization to make it easier for people to follow. But I just can't. It's just too much... I just can't.

So I'll stick to shorter things like this. And longer stuff I'll post after working on them for a while so they are kind of legible? able to follow?? organized????? I need to lay down.


I hate that phrase. But... I just can't. :/

That Sun!

Alright, Tough Boy:

1) Never leave home without your sunglasses!

2) Lost your glasses? A Red Sox baseball hat can help, too. Ok... so I'm a sox fan!

3) Get a significant amount of rest for 2-3 days prior to spending a day in the sun.

4) Worn out from being outside?? Allow yourself to rest.

5) Pay attention to what stores you "loose your brain" in. It could be their lighting!

6) Online surfing? Dim the monitor; avoid white backgrounds; find what colors you tolerate best

7) Colored Eyeglasses - who knew?!

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How ironic to name a blog "Tough Boy" and make it entirely pink! Well maybe because I'm a girl?? Nope.

Answer: It's easier for me to read.

I met with a psychologist I knew from my hometown a few months ago. Although he was unable to take me as a patient, he spent over an hour giving me a ton of information. Little did I know he had twenty-plus years of experience diagnosing, treating and rummaging through research surrounding head injuries. While getting lost in circles for a long time not understanding a lot of things, this guy was right under my nose with a plethora of knowledge!! Some of the random things he told me I might have forgotten and I wasn't able to look up much of the stuff I remembered. But there was one thing I did find.

He told me someone had found that people with head/brain injuries/whip lash were found to not tolerate light as well. Well I knew that from experience... But then he told me there was research out there showing this group of individuals actually struggle to process specific wavelengths of light often emitted from certain fluorescent lights, the sun, etc. And they developed certain tinted/colored eyeglasses to help. My words might not be his exactly but Google helped me find the Irlen Institute.

This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe - just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I'm out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.

Dr. Tosta stated in her research:

It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.

Other articles and reading are available throughout the sight. There's information (that I haven't quite read) including how the use of these glasses can benefit other problems including migraines, asperger's, and ADHD. And if I haven't said it already- much of the issues seen in post-concussion are very close to symptoms seen in ADHD (and they are often misdiagnosed on both sides... I should have saved that article on it, darn).


So, I spend a lot of time inside with the lights out and my dark shades down. I try not to go outside in the sun more than one day a week, and never without my sunglasses. I go for most of my walks or trips to the grocery store after the sun has set (NOT the best thing for your circadian rhythm, however). I only go to retail stores in the quiet hours, on days I'm able to accomplish something - like filling a prescription. If I'm going to wait, I'll usually find a less-abraisive store to browse nearby if the lights are too much.



When I tried reading research articles again, not only was the medical terminology not processing very efficiently, but I was greatly concerned/frustrated by the way my eyes were picking up words. There was a bright light behind each word as it seemed raised from the rest; to move to the next word I had to actively 'drop' one and 'pick up' the following. Here's a picture I just came across... not exactly what it was like... but close.










Were the white pages making it difficult?? I'm not sure and still don't know, but I do know that most things online are easier for me to read when they're not on white backgrounds. Brighter colors (whites, neons) are more difficult; dark ones are ok, but white letters are hard to read. Yellow words on dark blue is tolerable, as well as black on pastel backgrounds. Even though the background color could be subtle, it's amazing how much it can help.

And thus - I hope you enjoy my pink page!!

Incentive? Initiative? Inclination??

In fumbling around this new blog of mine, I needed a title. I know I want to write about what I'm going through to help others. So... yeah. That's as far as I had gotten.

I'm still not sure if "Initiative" is the word I'm looking for. The first letters, mTBI, are reflective of "mild traumatic brain injury." It's the only thing I really was given back in February '08... the neurologist I had seen told me it would be best if I were to learn everything I could about my new diagnosis and "use the internet and search 'mTBI,' that should give you a start..."

I decided on the T and B to represent Tough Boy. The most mention of concussions in the past and present surround sports and professional athletics. I kind of believe that much of the "minor" perspective on this kind of injury has resulted from many professionals coming out of game after getting knocked out - and then sent right back out there to play in the next inning/quarter/round. No professional men's hockey player wants to be called a "girl" because he couldn't hack a little check into the wall. You ready yet, tough boy? Get out there and play!

I might not be a tough boy. My income wasn't coming from playing sports. My job and everything I did involved using my brain. I was constantly using my brain in every second I was awake... and thus the challenges I've been facing and the constant frustration stems from all the changes my brain is going through. I can't use my brain as easily and I need to re-learn just about everything you can think of.

But many people, who don't play professional sports, also are struggling with their own changes. Many are trying to be a "tough boy" (or girl) and hack through it, never realizing what was really going on to make their life so challenging now. So my initiative, or whatever, is to help those tough boys who just need a little guidance... or some no-brainer to just smack them in the face to help them better cope with their new-found troubles. I don't know much, nor do I claim to know everything... but I know I wish I had someone throwing these ideas and suggestions in my face a loooooong time ago!

The who, what, why...

Tough Boy:
1) Use a word processor on your computer to save ideas and unfinished work (I love Word for Microsoft XP). You can go back as much as you want before you send an email or post a blog!

2) Spell Check is a life-saving invention

3) What's the word?? While in Word, right click on the word you're unsure about, scroll down to "Synonyms." If only I could do that while talking!!

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In November I was walking to my “job,” the unpaid rotation in my sixth year of Pharmacy school. I had a presentation that day, which I can’t remember what it was on… but I also had an interview for one of the medical schools I had applied to. I was running my strengths and weaknesses through my mind. I was preparing my presentation of how as a doctor I would love to work in the emergency room, trauma-surgery unit, or become a cardiovascular surgeon.

If you told me that morning before I left my apartment that my entire life was about to change – I would’ve probably said, “you’re right, I’m about to ace my interview and get accepted to medical school!” I would’ve run out the door without blinking at the thought.

That morning, I was hit in the head and my entire life has changed.


As I continue to recover from a world-altering closed head injury, I hope I can find the energy to record some of the "no-brainers" that aren't so obvious when you have no brain... or at least one that isn't working properly.

I have been slowly learning about concussions and mild traumatic brain injuries (mTBI); unfortunately there's nothing mild about them and they are not fully understood.


Too often, when I would try to find out things about what I was going through, I would come across advertising websites. Where they all had great information, they were all saying the same thing. Also, they were all connected to personal injury lawyers hoping to make bank off this “invisible” suffering. That’s all fine and dandy – but if doctors are telling me there’s nothing wrong, I need to find the answers myself… even if it takes me forever. I’m educated enough to look deeper and make sense of what I might find (um... well, eventually). Forever is a dreary time, but when the hope for my future is darker than the present, spending the insane amounts of time and frustration may help me slowly become more comfortable.

I am still not ok. I have a long way to go. I can, however, fake-it-till-I-make-it. I try not to make it an issue with people I am just meeting. I look the best I’ve looked in 7 years - I’m a knock-out. However, the most annoying thing I hear is “Really?? Cause you look great!” They don’t see me every day. They don’t see me when I am on my 6th quiet day spent inside with the lights off; my main goal being to just get to the next day. On my good days I might be able to open mail from a month ago – not saying I read any of the stuff I keep, but I try to throw out the junk mail. On bad days, I really can’t tell you how I have spent my waking hours other than reading “mindless” things online. Two or three sentences, short blogs, horoscopes, updates on the recent Red Sox developments… but I won’t register most of it.

If I decide to go out or when I am going to a friend’s house for the weekend, I feel obligated to push through it, smile and charm, and “be as normal as I can.” I might go days without sleeping and I will be ultimately confused. I try to have VERY minimal light and sound exposure in the days coming up before I have to drive. I try to “rest up” as much as I can to get “energy reserves” so I can better hold conversations, meet new people, be a friend… have a life… in the days that I am down there. Nobody likes a party pooper. And if it ever comes to the question of “what do you do for work?” or “why aren’t you drinking?” I try my best to follow along with what the “past-me” would have said, until I have to tell them I’m actually retarded now. “But you look great!!” Ugh….

I’ve been doing this on my own. I am very smart, and I’m sure I am still above average on many levels. The frustration is with the dramatic change. The part where I have to RE-learn what I’ve been molded to do since I was born. How I group things, how I count, how I view numbers, how I listen, how I read, how I send out my rent check, how I communicate, how I react to others and situations. I look great, I am very smart… but I am not the “me” I had been for the 22 years before my head injury.

There are certainly glimpses of “me,” and therefore leads many people who were acquaintances to not understand what I’m trying to say about my new world and my new difficulties. And some of those glimpses have driven me to want to “figure it out” when everyone else has no suggestions. I read a lot of blogs to pass time. I also read a lot nonsense articles. But sometimes, I come across something that seems so obvious, something that is so much “common sense,” that I am baffled by my discovery.

When you have a brain injury, as discrete as your problems may seem to others, your brain just isn’t able to see the obvious. The confusion makes much of the “common sense” not so common to you anymore. And these “no-brainers” that I didn’t have the brain to figure out on my own – were absolutely some of the best trinkets of advice that took me WAY too long to find.

So this is where I’m going to put those trinkets. For anyone who stumbles on this blog, if you have any trinkets of your own (even if you’re perfectly functioning), PLEASE let me know. It takes me MONTHS to do something that might take you two seconds; any help would be completely appreciated. Eventually, I hope these things can help people that are just starting to figure out how hard it is to find these things on their own… the people who aren’t as fortunate to have the same resilience that’s peaking through from the “old me.” And maybe, just maybe, I can make that difference in this world I had thought I would in the pharmacy world, medical school, or as a cardiovascular surgeon… but maybe I will be able to improve enough to make a difference by teaching the healthcare providers who are treating, and become an advocate for, those who are struggling despite just how fantastic they look.

"If I can dream of a warmer sun, where hope keeps shining on everyone..." -Elvis

No-Brainers for Tough Boys:
1) Laugh

2) Think about laughing

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I've had some lousy past few days. I'd like to explain my prerogative a little, but may not be able to muster the sentences together tonight. But here's a start of what I would like to do...

I will probably write my heart out on something I've found or tips that I feel are helpful for my daily functioning/feeling more comfortable while recovering from a brain injury (Nov '07) that's literally changed my world. Then I will most likely pick out the "important" points to take away and bullet them at the top. Why? Because (on days like today) when someone struggling with the changes of their brain is on an "off" day; sometimes it's hard to register any and every thing they read. Sometimes it'd just be easier if someone said "well, the point of the story was..." or "the only thing you need to know is..." rather than having to read everything yourself. And although I've always been able to write, sometimes I ramble and may be struggling to put words together effectively to make sense.
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So tonight, I was just trying to keep my brain moving on random short articles about... whatever. I have no idea what I was reading for most of the time. There were moments when I would have to tell myself out loud to "read the words!!" It's so frustrating. But then there were a few times when I enjoyed a story and it was short enough (and easy) to read and comprehend.

In relation to struggling with a brain injury - my muscles all around my neck, shoulders and back have been relentless this weekend and will not loosen up. I'm very uncomfortable, dizzy and confused. And I'll save the migraine talk for later. A naturopathic physician that I had seen back in December had suggested a lot of stress might be adding to the pain. He told me to think positively with the phrase, "I'm getting better in every way, every day."

Now in my mindless wandering online, I came across these two brief articles that are kind of exploring the healing and hope in optimism and laughter. Or at least grounds for stress relief. Maybe I'll watch a funny movie tomorrow and see if my neck muscles will take a rest for a bit!!