Thursday, March 29, 2012

Dear neurons:

Dear surviving neurons in my brain,
       I know that there are only a few of you left and you have been forced to blaze all new 'neuro pathways' in different parts of my brain. Thank you for that, seriously you are amazing.  Now please use them effectively!
Love always, Me

PS- Please forgive me when I don't give you enough rest! I am trying my best too!

Thursday, March 22, 2012

Dear Me- a note to self

Dear Me,
 Working three days a week may still be pushing your limits too much, just for future reference.  Even if it is only four hours a day with a day to recover between.  Thank you for trying, but please remember this next time you agree to this schedule.
 Love, You

Tuesday, March 20, 2012

My short "Bio"

I was asked to participate in this year's BIANYS annual Brain Injury Conference.  This sort of thing is exactly what I love to do now-a-days and I am almost really excited about it (I don't really experience excitement like I used to before the aneurysm).  It reminds me of "being a teacher" without all the nonsense of "classroom management".  I know I will struggle with the answers for 'spontaneous' questions at the end of the seminar, but it will be a good growing experience and there will be another survivor and an "expert in the field" to help too! This is the shortest "bio" I could come up with so far......your input is welcome (I have until May 11 to submit it)
 I think this was the hardest version of my story to write. It dawned on me today why.  I almost felt like I was writing a eulogy for the "old Lisa". I am thankful that I could end it with a sense of renewed hope!

Lisa grew up in a tiny rural town in Central Upstate New York.  She has a BS degree in Elementary Education with a concentration in Psychology from Houghton College. Lisa married her husband, Nathan, on June 1,2002.  Before her injury, Lisa was working on her Masters at UAlbany as a Literacy Specialist, however, her first job out of college was working in a special education classroom (her real career passion).  While driving to work on February 1, 2005 she suffered from a massive ruptured brain aneurysm, which nearly killed her.  Lisa was found off the road, over a bank, and unconscious, but still alive.  She was brought to Albany Medical Center, where her family was notified to arrive quickly to "say goodbye".  Lisa miraculously survived the repair of the aneurysm but was left without any use of her left arm and hand as a result of the stroke that followed her bleed. Lisa went on to survive a second rupture and a third bypass surgery in her brain.  She had months of rehabilitation therapy at Sunnyview Rehabilitation Hospital where she did eventually regain most of the use of her left arm and hand and was able to relearn many other skills for independent living.  Lisa loves to share her story and advocate for those who are unable to have a voice about living with a brain injury. She hopes to eventually be well enough, to return to the education field and advocate for children with brain injuries and educate teachers about working with this disability. Currently, Lisa writes a blog about her daily experiences.  You can visit it and learn more details of Lisa's miraculous story at http://www.walkingtalkingmiracle.blogspot.com.

Sunday, March 18, 2012

afternoon on the farm

Okay, so I grew up throwing hay to feed our horses. I always HATED it (the hay throwing)but loved the horses,so it is fun to visit a place where I am not responsible for the creation or distribution of dreaded HAY....here was our afternoon on our friend's farm:

Showing off my pink mud/manure boots!

"Driving" the chopper

Look how tall the tire is!! I'm such a DORK!

Humoring my husband!

Me and "Farmer Nate"

It is so 'cute' but it eats A LOT of hay :-( !!!

Friday, March 16, 2012

Praise God for miracles of all kinds!

here is a link to another incredible story.....Just click here

Random thoughts from a random girl!

There is a patron at the library I  'work' at that is convinced that I posses some great knowledge about learning.  Here is the story: Talking is exhausting and I like to say that I no longer enjoy doing it but the truth is; I just can help myself most of the time, no matter how exhausting I know it will be.  So, I was at the library helping check the morning rush of books in when a patron needed to check a book out.  I wear a hand brace on my left hand to help me with the lingering tightness from the stroke/rupture.  I am asked about it several times a day when I am at the library.  Feeling like I should at least tell people the brief reason why I wear it, I told this patron about my aneurysm/stroke and how the brace is to help with the lingering effects! Upon further curiosity, I described how I had to "relearn" how to do a lot of basic things like walking, the alphabet, how to cross a road etc.  Of course, this patron was fascinated by this since I look "perfectly normal".  I don't feel like I hold any secrets to learning.  I was simply blessed and I work hard every day to figure out how to do things now, instead of the way I remember doing them before my injury (perhaps the term is 'differently abled' now?).  In the book 'Gabby', Kelly compares a brain injury to a hurricane.
"It's like the drawer of a filing cabinet came open, and all of the files got blown up in the air," he says. "And some of them fell back into the correct place. Some of them fell in the wrong place. And some of them are gone forever. I see that with Gabby. Her memory is really good. But sometimes, when she looks for the correct word, she'll get the wrong word. Sometimes the correct word is there. And then sometimes it's in the wrong place, but I've come to learn that your brain can rewire itself to some extent. And she can find where those words are now located."

Yesterday, I met a job coach filling in for my job coach for a brief time.  She began asking me questions about how I did things now too.   All I could tell her was that I used a lot of "checklists" and have a folder for each day of the week containing papers I need for that day, and I write EVERYTHING down.  Of course, somewhere along the way somebody had to mention that when I looked at a calender to make an appointment I had to not just see if that day was free but now I had to look at the days surrounding it and consider if they were busy, to allow myself enough time to 'recover' from each activity! If the day before I had more than, say, two things I was supposed to do, like grocery shop and stop at the post office, I am not going to schedule something for the very next morning or I won't be able to safely make it where I need to be.  Sure, this was not a problem before my aneurysm BUT IT IS NOW!! Things like this just never occurred to me until someone pointed it out.  It was like the alphabet.  I could rattle it off in perfect order but when I went to actually put names in that order I made plenty of mistakes.  I learned (from a kind job coach, who noticed I was making a lot of mistakes) that I could no longer visualize it and I had to use an alphabet strip like a Kindergartner.  So, I used the alphabet strip and after using it hundreds of times I was able to visualize it in my head and I was able to put the alphabet strip away.  It is still way more exhausting to use than it ever used to be but I cope! I take a brief break to use the bathroom or get a drink of water if I need to rest for a moment or two!

The other question I get all the time is "don't you get bored only working four hours, one day a week?  What do you do the rest of the week??" My answer; what is bored? I can not remember being bored since my aneurysm.  What other people find "boring" I have to work hard at, so I think of it as "exhausting" not boring.  Like, folding laundry, most people find this "boring". Why?  You don't have to think about it really.  Your brain kicks into auto pilot and just folds it.  I have to think about every single step of it and how to get my right and left hand working together. What is rote and boring for you, is exhausting for me! And, my theory is that to be bored,  you must actually have the energy and therefore the desire to do anything other than the comfortable familiar!! For example, I can watch a favorite show over and over again at the same time each day.  This to me is relaxing and comforting and takes little energy to follow! This would have driven me crazy before, I (the old Lisa) would have been bored. Not now! So what do I do the rest of the week?  Well I have a cleaning schedule, laundry, grocery shopping and lots and lots of doctor appointments, oh and I love blogging and Facebook too, and if all else fails, I am probably taking a nap or resting to quiet classical music (if I can handle it, and don't need absolute silence). I need a lot of rest and recovery time now, it seems like it 'wastes' a lot of time but it is essential to my survival!!!!

Wednesday, March 14, 2012

Brainline.org link

An email I got today, thought I'd share...............................................................
Hi Lisa!

Congratulations! Your story was picked up by brainline.org! They were unable to use the first part (they are not funded for acquired TBI,as in aneurysm, only for traumatic), but they picked up the second portion, The Girlfriend's Guide.
Congrats! This is a very popular website! Take a look:

http://www.brainline.org/content/2012/03/the-girlfriends-guide-to-tbi-or-everything-your-doctor-wont-tell-you.html

Thank you Paula for helping me share my experience with others in a meaningful way!!

Friday, March 9, 2012

BIANYS story

Here is a link to "my story" as told by Paula Schmidt from BIANYS, I think she did an outstanding job, what do you think??
http://braininjurystories.org/2012/03/09/lisas-story/
thank you Picknik for the tan :-)

Saturday, March 3, 2012

TRAPPED

        ****please note that this entry was compiled this week, as I had an insane number of doctors appointments and was feeling overly tired by the pace of this week which makes me overly emotional!! I am just trying to be "real" for those fellow survivors who just want to hear someone say, "I have been there, I understand ,and it gets better"

     "One of Gabby's nurses just said, 'Hey Mark you gotta come here quickly,' " Kelly says. "Gabby was sitting in her wheelchair in the bathroom with just this look of terror on her face, tears streaming down her face, hyperventilating. And she was trying to say something and really couldn't.
"This was the moment she realized that she couldn't speak. Before that, she was in this long, hazy period of just coming out of the coma and recovering from her injuries. But at this moment, the light bulb came on and it's like, 'I cannot speak. And am I going to be trapped like this forever?' That's what she was going through and it was difficult, difficult period of time. I just held her and I told her it was going to get better. I was going to help her through this. And she has a lot of people that care for her and love her and we were going to get through this and it's gonna get better. And it did." -From "Gabby" by Mark Kelly and Gabrielle Giffords. 
     Have you ever felt "trapped" in your own being? I can totally relate to Gabby, while I was able to talk, I often felt "trapped" by my inability to process language at the speed it came at me, sometimes I still feel this way.  This "trapped" feeling creeps up on me from time to time.  I feel "trapped" by this new world of daily doctor appointments.  I always have a follow up of some sort or a new doctor to try to diagnose a new "phase of recovery".  It seems that I go through these phases like: throwing up, blacking out for a moment due to blood pressure, or a series of migraine auoras.  I feel "trapped" by other ailments that the medical world has no answers for.  My new limits often give me that "trapped" feeling.  It seems overwhelming that I need days to prepare for and days to recover from things as simple as grocery shopping or taking a weekend trip to visit family.  I feel "trapped" by my inability to hold a full time job, and even more "trapped" that I can't tolerate a job of any kind in my field of training. Or how about "trapped" by the knowledge of my short term memory problems. "Trapped" because a functional life now means a series of 'checklists' before everything I do! Of course, I know that "man makes plans, but God directs the paths." So, I'm not really "trapped" by these things but instead I am living safely in God's directed path. I am human after all, and my broken brain feels "trapped" by new limitations and situations.  I struggle with the occasional "panic attack", still, as I claw my way from the "trap" within my own mind while still very thankful that these "traps" mean I am here and able to share life's experiences with others!!! I think Bebo Norman says it best really, "Take my time here on this earth
                                And let it glorify all that You are worth
                                For I am nothing,
                                I am nothing without You......"

Tough?!?!?!?!?

I generally consider myself pretty "tough" these days when it comes to medical procedures, being tough is much easier when you know you have a bottle of Percocet, "just incase".  I still dread most procedures and I always prefer to be "knocked out" or at least given a good dose of "happy drugs", but all things considered I generally think, "it can't be as bad as the recovery from 3 brain surgeries in less than a year!" So, I have had this stubborn lump/lesion on my tongue for the last few months.  It drives me absolutely crazy as it scrapes across my teeth as I talk or swallow.  I have tried steroids, mouth guards, and a diet free of acidic foods! Nothing will get rid of this thing! I think I was slowly driving my doctors even more nuts than I usually do! Someone finally sent me to an oral surgeon to just 'take it off and have peace of mind'.  The oral surgeon doctor took one look at it and told me he was not going to take it off because of it's location, it would be too painful and he didn't think it looked particularly problematic.  He wanted me to wear my new dentist issued mouth guard while sleeping to see if the irritation went away.  I faithfully wore it as he instructed! The stupid irritation was still there.  So, at a follow up visit he reluctantly agreed to remove it even though he still thought it was just going to be too miserable for me.  There was a small insurance deadline to meet so, off it came.  I was just SO sure I was going to be just fine.  I even shared my story about how wisdom teeth taken out proved to be so much less traumatic than everyone made it out to be, I was just sure this would be the same!!! I WAS WRONG......stitches/a biopsy on the tongue proved to be just as painful as they promised it would be!! I am so thankful this doctor kindly tried to spare me from it!! I, of course, was very angry at myself for being so "neurotic" that the doctor felt cornered to take it off against his better judgement!! So, I hope this takes care of the problem and we can all just move on with our lives without my silly 'tongue drama'!
Ouch!!