More of my 'weirdness'

Ever since my aneurysm, you know I get easily confused about the simplest things! So here is something I just thought I'd mention for those who find these things fascinating (like I used to, but now the fascinating is just daily life).  I have a terrible time with the numbers 6 and 4.  My brain pretty much uses them interchangeably when it comes to new information.  So, if I am trying to remember a number (that is NOT in my 'long-term, pre-aneurysm brain' already), I pretty much never know if I have it right or not involving numbers 6 or 4.  So weird, at least if I really focus hard on it, and reason through i,t I can usually get it right.  When taking down library numbers over the phone I usually have to have a person repeat the number at least twice before I can focus enough to get the numbers correct; it makes me feel so silly sometimes! The one thing that even when thinking about it I don't always get correct, is my right and my left.  You would think that a spastic left side or the chronic ache from a few craniotomies on the right side would be a pretty obvious clue, but nope!  It is pretty much a 50/50 chance of getting it right every time! Oh the joys of being me :-) I am thankful that my faith tells me, I am "fearfully and wonderfully made"

Life in the S L O W lane!

 I try to just be amused at the things that "no longer occur to me".  For example, I was making cookie frosting for Nate last week.  I only had about half the amount of sugar I needed to make the full recipe.  Naturally, I decided to just cut the recipe in half, that should be simple enough, right??? Well, I actually managed the second grade math, for the first few ingredients, but then somewhere in the middle I simply forgot I was cutting the recipe in half.  The result: very runny, very almond 'extracty' cookie frosting.  It actually was pretty funny and mildly edible.  Next time, I will write down all the 1/2 measurements and only look at those numbers! We live and we learn!!!

The next day I was much less amused when I looked for my GPS holder before visiting a dear friend.  I really tore my Jeep apart, knowing it just HAD to be with the actual GPS unit!  After stopping what I was doing for a second and taking a deep breath (I was getting very frusterated, very quickly) I flipped the GPS unit over and guess what was already attached?? Yup, you guessed it, the GPS holder for my window.  At least I found my multiple extra sunglasses (I can't live without sunglasses outside, and see at least). I also now have a 'cleaned out' console and glove compartment!!  Just when I thought I could not be any less amused, I came home from a wonderful day with my friend.  I opened up my fridge and there right in front of me was the jar of garlic I couldn't find the night before.  I was exhausted the previous night and I knew it was there but just didn't see it.  So, I am laughing about it now and giving myself a little credit for at least trying.  Trying to make frosting from scratch, trying to make food that didn't come frozen in a bag, and trying to overcome my hermit like tendencies by visiting a friend!!

Do You Trust Me??

One of my favorite scenes from a movie is the one below where Aladdin says "do you trust me?" then stretches out his hand to offer help.  It just makes my heart melt a little every time I watch it. 

Last night, I was fighting off a migraine and feeling very restless over the report of a 16 year old girl we know being found unconscious  in her bed when her parents went to wake her up for church.  I prayed for this family and tried to push my own migraine anxieties out of my mind.  As I lay there doing my deep breathing exercises, I heard those words running trough my mind, "Do You Trust Me??".  I knew it was a still quiet voice from the Lord reminding me for the millionth time HE alone is in control of all things, all the time! Silly me, I was looking at things like Jasmine, "is it safe??", I wanted to know.  You see 'magic carpet rides' defy human logic and reason.  We can not be assured of their safety, we just have to trust.  Our sermon this Sunday then popped into my mind (as it always does in the week that follows it).  Our pastor, talked about fully surrendering ALL areas in our life to Jesus, often times our own personal struggles are just areas of our lives we have not fully surrendered, and so a quiet voice in me said "yes, I trust you" and I drifted off to a restful sleep!!

Aladdin - Do You Trust Me?

Olympics

If the Special Olympics had a brain injury division, I think it would have events like "making spaghetti for dinner" or "grocery shopping".  These would all be classified, not as sports like "skiing" or "ice skating", but instead, "things you all take for granted".  That just sounded like a game show, right?? Yes, these tasks feel like Olympic events every single day.  For example, tonight I went to make spaghetti with frozen Texas Toast.  Do you know I went down stairs two times to get the toast and both times I came up without it.  I did however, switch the laundry and get clothes out of the dryer but, NO TOAST for dinner.   Frustrated, I resorted to asking Nate to go get it for me!  I would have lost in that event, unless it was a relay!! What I should have done was write it on a piece of paper and carry it with me so when I got distracted the paper might remind me, oh well!Oh and I almost forgot the "answer a phone survey" event! Last night, I answered our house phone (I usually don't, but I was waiting for a doctor office to call back and sometimes the caller ID isn't very specific) The women on the other end asked for a male in the house old enough to vote.  "He can't speak with you right now", I said.  Before I knew it she had engaged me in the survey instead.  After 9 minutes of "rate this and rate that", on some unusual scale of 1-7 I stopped her and said, "I gotta be honest, I am just making up numbers, my brain is so tired I have no idea what you are talking about".  I then asked her how many more questions there were; she didn't know.  She could only tell me the survey usually takes 17 minutes and I had only 'endured' 9 minutes of it.  Out of annoyed exhaustion, I simply told her I was no longer going to continue with this 'pointless survey'.  I knew I needed to save some brainpower for making dinner (Olympic event #2 of the evening)  She wanted to call me the next day to finish, but I think she realized how pointless it would be and moved on to bigger and better things to annoy other people with!! I already had my mind set on not answering the phone anyway!!! Have a great weekend everyone!!  :-)

Just Some Tips.................

For my fellow aneurysm/TBI survivor friends. Memory is such an issue for us, especially short term memory.  It can be very frustrating and at times embarrassing and overwhelming.  Here are some strategies I use in my daily life to cope. Yes, I have OCD and I taught special education for a year right out of college!!!!
* write EVERYTHING down in a planner you carry with you everywhere!!
* take a list of questions you have for your doctor (I write things down as I think of them).  I then bring the list to my appointment and cross them off as they are answered.  I write down things that I want to remember when I leave or I have my doctor write it down on a prescription that I can take home and show my husband!

My daily "survival kit"

* I have a "professional looking" three ring binder that zips up and has handles.  Inside it is a folder for each day of the week to put papers I need for that day.  It is also well supplied with 'post-it' notes, pens and a magazine to look at while waiting for an appointment! I take this everywhere and keep my smaller planner in my purse, because it is smaller and keeps me from trying to do a million things in one day, it simply doesn't have the space to write a lot of  'to do's',

* I found the book "Brain on a String" by PJ Long very helpful for helping me keep things as organized as possible.  PJ Long is a TBI survivor and also wrote "Gifts from the Broken Jar" which was very good too!!!
* I have a reminder set in my cell phone(calendar) to ring every night to remind me to take my pills.  It rings until I turn it off.  I admit that this works well but sometimes I do get distracted along the way and end up forgetting anyway, but it isn't too often!!
Most importantly find a "system" that works best for you and your "new brain".  Ask someone who knows you well, and you trust, for help if you can't do it yourself!! This is not 'fool-proof' and I still have my moments but this has really helped me and some of my daily my anxiety a lot! Hope it helps you too!!!

PS- I have recently discovered that a planner broken down by hour slots really helps me to organize my day better being able to even write when to leave my house to get to an appointment! I really should have listened to the Rehab Therapist years ago but it seemed unnecessary to me at the time, as I had not fully accepted my brain injury!!! But, alas after years of floundering and fumbling my way through things I have returned to this modified version of the planners they use at the Rehab hospital! My iphone also has a format like this so I may eventually switch over to that completely!

Planner by Day Timer

Now for my last "life lesson." It began early on with a list in the order I needed to stop of the places I needed to go since I could not look at a list and decide where I needed to be. So, before I left the house (even if someone was driving me) I sat down and wrote out the order of my stops. So, it might look like 1. Target-bring list 
               2. Hewitts-seeds (plant place)
               3. Library- (returns only today.)
And that my friends, would have been more than enough for one day. Likely, back then it would have been one stop then home and dinner being madewas a 50/50 chance. Now, I usually jot down on my shopping list where I need to stop. Now, I usually post quick things that might not make a shopping list like stopping for gas along the way! My job coach says, everyone could benefit from this strategy.  DO NOT, I repeat, DO NOT try writing a note while driving. You will be very, very sorry! But when you come to a safe stop write a quick note and stick it to your radio. Since I tend to obsess over things I usually am able to remember what I wanted to write. Keep it simple, a word or two!   My post-it is a loud color so I am more likely to see/notice it (a gift from a dear friend who 'totally gets me'!) I also carry post-its in my purse and write things down that I need to stop for and stick them to my radio face when I get back to my "car". You can thank me later ;-)

GGGGGGggggrrrrrrrrrrrrrrrrrrrr.....

As my good friend Mer would say, "GGGGgrrrrrrrrrrrrrrrrrrrrrr" to this past week.  I gotta say I am just so tired of trying to talk people into doing their job.   Getting medical records sent to a new office has turned into an ongoing nightmare.  Now I am just so fixated on getting them ALL to the new doctor I won't give in!  I think you could just say my name in any doctor office and they will cring, but, I am determined that my records WILL get to the new office.  The whole process has left me so exhausted and burned out I should probably just give up on it but,alas I am me, so I won't. I have lived through two ruptured brain aneurysms, a stroke and live with a TBI, JUST SEND MY RECORDS ALREADY!! Seriously, I am so sick of getting that "you're a neurotic, crazy person" look!! I get really, really sensitive about this(except in the company of friends and family who will love me "just the way I am")!! I don't like being this way BUT this is what I have been driven to!

I am all worked up about my records and a story about Rep. Gabrielle Giffords comes on the TV and suddenly my petty problem doesn't seem so big.  It reminds me of my own recovery and I begin to cry.  It hits a soft spot that has still not healed, and it may never. I think it will always "hit too close to home".  In her story 'Gabby' talks about how doctors only allowed her to know small pieces of her story at a time.  That is how they did it for me too.  When I woke up, my family simply told me I was "in a car accident".  I was so confused about why I had no memory of it! Then at some point the doctors told me I had a ruptured brain aneurysm.  My family wasn't sure how I would react and wanted a doctor there when I was told. I was on so many drugs and was so confused that I just said "ok", and that was that.  Then, they sent me to rehab where I was told, "you have a brain injury".  I then first witnessed people literally "flipping out" over the fact that I was alive.  I think that even 6 years later I am only slowly beginning to grasp it.  Perhaps I will never grasp it and that's okay.  I do need to work on accepting what I lived through, and the reality that my limits are different now!! I look fine and actually usually function somewhat "normally" so it isn't always easy to 'believe' how hard it is for me to carry on and 'just live life'. The one thing a regret a little now is that I didn't 'let' anyone take many pictures or videos of my therapy/recovery.  At the time, I just thought it was so awful that I didn't want any documented reminders of it.  I could not imagine that there would ever be a time when I would want to share it or look back myself.  In my head, it was just SO terrible it should never have to be revisited!!! Now though, I watch 'Gabby Gibbons' and Bob Woodruff's stories and how they have helped others understand recovery better and I am thankful they didn't have my "short-sightedness". They actually let/encouraged their recovery be documented!  I am thankful for the pieces that my family was able to slip by me and I will continue to write about my recovery or what I remember or have been told in an effort to reach those who so desperately just need someone to relate to, who has been there, and struggled with that too!!

can't explain me........

I can't even tell you how fried your central nervous system is after a ruptured aneurysm/stroke.  I grind my teeth at night (have since I was little).  Now-a-days I think I get my tongue at night too leaving it "sore" all day. I have asked two doctors and a dentist about it.  They all think it looks "perfectly normal", but to me it is always sore/sensitive.  I am beginning to think I am completely crazy as another doctor guesses what might be causing it.  I think I may have to resort to the expensive mouth guard from the dentist and hope it goes away, so I don't get that look like,"you're fine, you just freak out too much"......MY NERVES ARE FRIED, Yes, EVERY little thing drives me more nuts than I think I ever was before (YIKES)! My poor doctors, I think they have given up with me :-)

My attempt at "making lemonade"

I am considering these 'conversation starters' from Cafepress.com. This way, if I am acting "strange" people won't have to wonder...lol

Copyright Cafepress.com



"Brain surgery? Been there, done that!" Copyright Cafepress.com

"I fought an Aneurysm and I Won"Copyright Cafepress.com



I already own this one...........................






"I'm in a forest of crazy" Copyright Cafepress.com



Drama

I would not call myself a drama queen, at least I don't think I ever used to be.  However, since my aneurysm my life seems filled with it.  And I really hate drama, unless it is on a stage intended to entertain, and even then I sometimes find it stressful!!! A simple thing like having records sent to a new doctor turned into this big battle, where I was forced to 'threaten' the office with calling their corporate office and filing a complaint.  Are you kidding me??? They are my records!  The story goes like this.  In August, I, along with 3,000 (I was told) other patients, were informed that our doctor was 'no longer affiliated with Prime Care Psysicians'.  No advanced warning, no smooth transition to a trusted office.  Nope, more like 'good luck, fend for yourself suckers'. Now any 'normal' person would simply find a new doctor assuming they all have a medical degree.  NOT ME! I have been with this PCP doctor since before my aneurysm.  She knew my neurosurgeon team and I trusted her! Everyone in the office knew me and it was familiar. Upon finding out of her leaving her practice I contacted my neurosurgery office and, as always, they spoiled me and got me a list of doctors they and their patients like or trust!  So, after hours of waiting on hold to ask if doctors accepted new patients, and looking up how people rated the doctors online, I finally choose a new doctor (I still can't believe a doctor could be younger than me). So, in the 9 years of being with the previous doctor I never once had my records sent to any specialists I was supposed to see.  The office staff always blamed it on the doctor holding them up for approval, but I really liked the doctor, and she really knew brain injury so, I just 'put up with it' .  I suspected that my old doctor was only part of the problem so, back in September (as soon as humanly possible for me), I sent my release form to their office for the records to go to the new office, with a note specifically stating they needed to be sent by October 27 for an appointment.  Last week, I checked with the new office....NO RECORDS. I called the old office who assured me they would send a note to the records coordinator and would be sent ASAP, even though I had "volumes of records, that must be retrieved from storage"(that was the excuse for not sending them)!!  I still had my doubts.  Monday I called the new office again....NO RECORDS. My rescheduled appointment was the next day, and I am NOT a simple case, I didn't have the energy to explain my entire medical history again, it is so hard to constantly rehash it!!! So, Monday I marched myself into the old office to take care of it in person.  The records lady was 'out for lunch'.  The secretary wrote a note and assured me they would be there tomorrow.  Now, if you know me, I fixate on things (some call it 'obsessive' others call it,' persistent', while some just find it annoying).  After running one errand I went back to the old office and there was a different secretary this time.  The records lady was still not going to talk to me because she was "busy working" (on what, I'm not sure).  "What is it that you want me to do??", she asked.  "I want somebody in this office to look me in the eye and promise me the records will be there tomorrow", I said as nicely as I could! I got the usual eye roll and defensive, "I don't think it is very professional for you to ask me to look you in the eye and tell you those records will be there.  And, just to let you know we have 30 days to release them ".  Now I am just so mad I can't even think and reply, "YOU ARE WAY OVER YOUR 30 DAYS, YOU HAD MY RELEASE FORM IN SEPTEMBER, PLEASE HAVE MY RECORDS THERE SOMEHOW TOMORROW OR I WILL FILE A COMPLAINT WITH PRIME CARE." (Thank you to my experienced friends who helped me write down a response before I went there, knowing what would happen from their own experience)!
As it turns out, I went to my appointment and was scheduled for the wrong doctor at the new office.  So, yesterday they had an opening for the doctor I really wanted.  I went to her and I really, really like her.  You have no idea how thankful I am, and the records were there. They were all annoyingly out of order, which I suspect may have just been out of spite. I do, however, find it hard to believe they are the complete collection since the new office 'only' had 103 pages.  I have seen my current file and there are way more than that just in the one I saw.  I suspect there are some missing files!! I am just so tired of the drama and of nobody doing their job and of nobody caring! But, since I got the flu shot in one arm and tetanus booster(out of order records= new doctor couldn't find vaccination records) in the other, I will fight that another day when I don't feel like I've been 'hit by a bus'.

Not 32 yet, thank you very much!!!

Upon arriving home from the new doctor, I was ready for a nap!! I glanced down at the new prescriptions she gave me and noticed my age on them was 32.  I panicked, I thought I was 31!! Was I really turning 33 this year???  I got out a calculator and, it said 32, also. Now I really thought I lost it completely.  Now, I am thinking, "great now I have to learn my age again, I thought I had gotten beyond that!!!"  It then dawned on me that it was not December yet, so this year I will turn 32 not 33.  The computer and my simple calculator calculations did not take into account what month it was in the year, just that this year is 32 years from the year in which I was born!! All is well, prayers about a new doctor have been answered!!

DREAM ON THE RUN

Wow!!!!

Stonewall quote!

 You know how obsessed with quotes I am.  This really spoke to me but, I confess I am not always this brave, but I should be!!


"Captain, my religious belief teaches me to feel as safe in battle as in bed. God has fixed the time for my death. I do not concern myself about that, but to be always ready, no matter when it may overtake me." He added, after a pause, looking me full in the face: "That is the way all men should live, and then all would be equally brave" -Stonewall Jackson

a little insight from Dr. Seuss!!

“We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it love.”


― Dr. Seuss

Deficits still, really?

Every time I meet a new person and begin speaking to them about my aneurysm/TBI I always get the same response "I would have never known; I couldn't tell at all, how long ago was it??" My hair covers my scars really well and the 'sink hole' in my skull, from surgery, is also well covered by hair.  I almost always wear my hair down now because wearing it up for too long causes physical pain from he added stress and weight of my hair on my 'still sensitive scalp'!  I am so thankful that only well trained medical professionals question me about the "slight droop in my left side when I smile".  Living day to day, with the constant fatigue caused by the need to think about every little thing I do( I think they call it "loss of executive function", you would not believe how many things you just do without specifically and deliberately thinking about it), I forget it isn't obvious to people! Thankfully, my heart still beats automatically!!!!!  I guess it is not fair to say, "I had to relearn everything", but that is just the best way to describe it.  I still had the long term memory of how to do something. For example,  I knew how to do things like talk and the words for most things, I knew how to say the alphabet, I understood walking meant putting one foot in front of the other.  I just had to relearn "how to use everything" tucked away in my long term memory. So,  saying the alphabet and putting things in alphabetical order are V E R Y different.  For that, I had to use an alphabet strip until I learned how to put them in order in my head without physically touching the letters to see what came before/after each other! The general concept of walking was still there, it was balance that was so terribly messed up (not to mention, how to walk around an object, or that an object needed to be walked around) So, as you can see my deficits are very real to me even if you can't see them most of the time (and for that I am very thankful)!!! For my survivor friends here are some of the deficits I can remember I still struggle with......

* short term memory loss problems and if the setting is loud or has lots of commotion around me it makes everything a million times worse. 
* hard time concentrating or doing any task longer than 10 minutes.
*FATIGUE, FATIGUE, FATIGUE- I need frequent breaks or I have melt downs or panic attacks! After about 4 hours of standing/being upright I need to lay down for a bit in a dark, quiet place free of extra sensory stimuli!
* tightness (tone, it's called) in my left hand and loss of fine motor skills on that side not to mention the "left side inattention where my brain doesn't recognize things to my left side even though I can physically see them).
* talking to people exhausts me in general.  I have a hard time following conversation and sometimes wonder what we were talking about! The phone is the worst, please, just send me an email, unless you have a quick question!!!
*sometimes I still hear things but they don't actually process (so if I just keep saying 'uh huh' that is usually an indication I can hear you but am not actually processing information)
* I take/understand things very literally!!
* I obsess or fixate on things without being able to "let it go".
*I am incapable of multi-tasking and changing tasks is horribly exhausting (hence, the reason I can only last 4 hours at work and then need the next day to recover from it).  It is always 'one thing at a time', I am either talking or scanning in books, not both!!
*sequencing is a nightmare (cooking is very hard for me).  Every day, I make a numbered list of the things I need to do for that day!!
* I am horribly light and sound sensitive.  If you meet me in a store this is most likely how you will find me.  My dear friend, Mer, thinks I may have turned into some kind of 'woodland elf' the way I shield myself from bright lights (again, my pupils no longer dilate properly, it is a 'function of the brain')!!

So, while you won't notice my deficits most of the time, they are very real to me and I will continue to be amazed that you don't notice(or it's not obvious) how hard I am working to carry on 'normally'!!



So despite the fact that it has been cloudy and raining/snowing the last few days this is how you will find me outside my cave/house blocking out every trace of light I can!!!



Restless

I remembered that there was a song I heard and wanted to look up after my Dr appointment. I made a note to "look up Switchfoot song" but I couldn't remember the word for anxiety, uptight, unsettled (I just remembered the gist of the song).....After a google search for my 'lost word'; this is the song, RESTLESS :-) Just feeling a bit 'restless' this week :-)

Narnia quotes

Just when I needed a little encouragement we watched "The Chronicles of Narnia: The Voyage of the Dawn Treader".....................................I obsess over words these days and how they are put together in meaningful ways.  It is still such a struggle for me to do without help!! If you ever spend time with me, or watch me listen in church, you are sure to see me scribble things I like and want to remember, fast and furiously! Of course, not even I will be able to read my own 'chicken scratch' (I can't focus anymore and it is like a million things flying through my head at once, and you never know what will end up coming out of all the chaos up there) but it makes me feel better that I tried! Here are my favorite quotes from the movie which were 'Googled' for accuracy in translation!!

"Extraordinary things only happen to extraordinary people. Maybe it’s a sign that you’ve got an extraordinary destiny. Something greater than you could have imagined" -Reepicheep

OR

"I've spent too long wanting what was taken from me, and not what was given." -Prince Caspian

OR

"You doubt your value. Don't run from who you are.” -Aslan

Bathroom Redo.........

So, after a week of recovering from the repainting process,and several shower curtains later, here are the "after shots".  I decided to accept that I live in a log cabin and embrace it fully instead of making it a "spa-like" style as I would really like.  I much prefer the controlled environment that the indoors offers and am, admittedly, NOT an "outdoorsy" person"!!!

AN INCREDIBLE STORY.............

You know I love stories of "God's unusual providence", or 'miracles' as some would call them.  Stories that doctors and textbooks can't explain!  While doing my devotions this morning I read of a man named Christopher Coleman.  His story will inspire you and make you cry!  It made me also want to go back to teaching 'special education' and love those kids most teachers/society forget about! Read his story here...... Christopher's testimony.  Have a wonderful day :-)

Determined To Paint!!!!!!!!!!!

Why on earth would it take two weeks to paint a tiny bathroom?? Before my aneurysm, I would have had it done start to finish in two days, tops! But, now EVERYTHING takes slow, deliberate planning.....EVERYTHING!!!!!!!!!!!!!!!  I have this list (I love making lists, they are like false control over something, anything really).  So, I have this list that is labeled "When Energy......", and I put down all the things I'd like to do if I ever had the energy or mental concentration over like 5 minutes so I could actually complete something and get it off my list!!  At work one day, I was telling my supervisor how every fall I have this urge to pack up all my belongings and go back to college.  Maybe, it is my longing to function like I used to with some vague sense of  "normal", this is not saying I could ever be defined as normal, but could usually function pretty normally (you get my point).  Anyway, my supervisor said, maybe every fall I should start something new, like redecorate a room, or learn a new language (ha ha, how about mastering the one I already try to speak, as I constantly search for words when trying to communicate).  SO, this year I looked at my 'list', the "When Energy" wish list.  Although, I didn't feel particularly energetic I decided(was determined) I would tackle repainting our bathroom, anyway. It has been on my list since right after we moved in. Right after moving, I just took down the old 80s wall paper, filled in major holes and painted just to get it looking presentable to guests! It needed a lot of TLC!!  So, I carefully wrote down all the steps I would need to do to complete the project then broke them down into what I thought were 'managable pieces'." Manageable pieces" were like, Spackle on one day, the next day sand and vacuum up as much dust as possible.  Then repeat(there is one week), "taping around trim/doors" was one day followed by "painting the trim around doors,day" then there was the "get paint, day". OOPS....I just messed up the order again, just noticed while editing, you need to but paint before painting, should have looked back at my 'list'! Sequencing things still gets me, every time!!!! My 'lists' are always labeled with numbers for the order in which to do things.  I make an ordered list each evening for the next day. As you can see, each step was one whole day's worth of energy for me, plus you need to factor in the days I was really just too tired to tackle anything!! On the "roll walls with paint, day", I stepped back and wasn't sure I liked the color I picked on "get paint, day" (don't worry, paint samples were hanging on my wall for over a year before that day, actually arrived) .  I can't make a decision/compare and contrast to save my life.  While this is probably more genetic than brain injury, I'll blame it on the injury!! By the end of, "roll walls with paint, day", I was so tired that I didn't even care what color it was, I was just glad it was done and I could check it off my "list"! Oh, and I was so tired that I had ABSOLUTELY NO desire, what-so-ever, to go back to college....MISSION ACCOMPLISHED!!!!  Here are some "quick" before and after pictures.....I still need to accessorize and put up our mirror over the sink in the 'after shot'!





Before..."Manhattan Mist" blue/purple color




After... "Ocean Pearl" a light 'seafoam', sage green color



FREE...............

   My dear, dear friend was back in the hospital with further heart arrhythmia problems that are potentially life-threatening. My heart felt very heavy for her and her family.  Of course, my devotions were about trials and joy among them!  I had to confess I was not feeling joyful!  On my way to visit her in a local hospital to relieve her from the boredom and sterile, white hospital walls I thought I would stop at Panera and pick us up a little lunch! I got our meals to-go and was walking out the door when I saw a pumpkin cookie advertised.  I thought it would be a nice little treat for my friend and wasn't going to leave without one!!  I got back into the long lunch line and when it was my turn I explained that I had just ordered lunch and just wondered if I could purchase one of the cookies advertised.  The cashier asked me if I ordered a drink. Of course, I had not, just grabbed the free water!! He explained that the cookie came with a meal and a drink.  I said, "thank  you" and went to turn around when the cashier told me to 'wait a minute'.  He then grabbed a pumpkin cookie and said, "here, this one is on the house".  I thanked him profusely and then shared that I really wanted it for my friend in the hospital.  He wished her well, and I left with a smile on my face.  It is the little things, like free cookies!

As always, I had a lovely visit with my friend despite the setting and circumstances! I left the hospital, found my Jeep and followed the exit signs taking me in endless, anxiety provoking circles through the parking garage!  Upon exiting, I handed the 'toll guy' enough cash to cover their "maximum fee" for being there all day.  It was SO worth the few $$ though!! He scanned my ticket and asked me if I was coming back later, "no", then, "are you going to be here all week?, "I hope not, I was just visiting my good friend".  "Okay", he said "when was your friend admitted?".  I just said the first day that came to my mind, "Wednesday, oh wait, what day is today, anyway".  I was still recovering from the circles in the parking garage! "Tuesday" the guy says.  "Oh well then Sunday I think".  He hands me back my money and says, "you mean she was admitted today", "no I'm pretty sure it was Sunday, maybe Monday morning".  He says, "free parking the day of admission, have a nice day".  I'm a little slow but then I got it.  Again, it is the little things like free cookies and free parking that make you smile when things around you make you want to cry! Please keep my friend and her family in your prayers.  "What is impossible with man IS possible with God" My story reminds me of that everyday!  I would never wish these trails on anyone but as long as we are both experiencing them, I am so thankful for a friend who can truly, truly understand what it is like to be a medical anomaly in your early 30s!!

Brain Aneurysm Foundation needs your help.........

The Brain Aneurysm Fountdation is trying to raise awareness further by sending letters to the Vice President.  The letter is all written for you, just add your name and click "send"! Thanks everyone!!!!!
http://bafound.rallycongress.com/4997/urge-vice-president-joe-biden-to-publicly-support-brain-aneurysm/

Help me raise awreness of aneurysms...........

If you have a few extra seconds follow this link to help the Brain Aneurysm Foundation raise awareness of this silent killer. They format all the letters for you and send them electronically, you just need to click send! Thanks everyone!!

http://bafound.rallycongress.com/4999/put-brain-aneurysm-awareness-on-map/?m=2012941

another rainy day!



Mookie with her black, spotted tongue out!







Mookie on 'her deck' soaking up the sun!





If you read my blog or know me well, you probably already know that cool, rainy days are my absolute favorite.  So, today seemed promising from the start!  I went to let my beloved dogs outside this morning when, my little Mookie catches wind of something that was in our yard last night and decides to BOLT right past me out the door.  She has a tendency to not come when you call, especially if she is 'mad' about something. Yup, she has done this to me before. I have visions of the busy road our little dead end connects to. I am now on the back deck, in my bathrobe, screaming at her like a crazy lady (or am I a crazy lady screaming at her?? don't answer that)  She huffs off on the trail of whatever it is and I can no longer see or hear her.  I have to decide whether to jump in my Jeep in my bathrobe and find her or take the extra time to change.  I decided to change, shocking, I know. As I run out the front door, shaking with fear of loosing my furry friend forever, I see her.  She is standing in our back yard just looking at me like "what's your problem?". I am so thankful that my quick prayers were answered and promptly realized that maybe, just maybe, I love my dogs more than most people do???





Mookie and Buddy















Visibly rattled, I still had an appointment I had to 'pull it together' for! I am happy to say that, although I was still not putting together complete sentences, I made it to the therapy (the kind, ironically, associated with 'crazy people' lol) appointment. It went well, and I made it home. 





Like most brain injury patients I get 'stuck or fixated' on one thing.  Today, I saw my camera sitting out with a note on it.  Ever since vacation, all the images my good SLR camera has taken won't give me a "preview" when I go to view them on the computer.  VERY annoying when you have thousands of images to view !!! Today, I am determined that it 'MUST be fixed'.  I called a friend at a camera shop and after my disconnected explanation he graciously gave me Canon's tech support number! The poor tech support guy had no idea what was coming at him....lol! After holding for 15+ minutes, a voice on the other end says, "how may I help you", to which I reply, "where do we start??" He got basic information then I tried explaining it my disconnected brain what was going on.  He was not amused that I didn't know if I had a '32 or 64 bit operating system'.  I thought I was doing good knowing I had Windows 7.  To make a long story short, the whole problem was the 'shooting' mode accidentally got changed to a more advanced one that can only be viewed using Canon software, GREAT.  It was a quick, 'hit this, hit that button' and a very unamused tech support guy and my problem was solved, never mind that I have been fixated on this for DAYS maybe even weeks now!!!! By this time, I was so tired my head literally felt "fuzzy" as it does when I have had to think too much!!! Ah, the joys of being me now! But, now I can preview my pictures and that sure makes me very, very happy!

"A Letter from your Brain"

Hello,




I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

remember this??

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.



I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.



How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?



Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.



What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.



I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.



I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

©1996 Stephanie St. Claire

May be reprinted for personal, not for profit use.

.

summer conspires against me!

I think the entire summer has conspired against me this week and planned a cruel joke to all hit me at once! I am exhausted and in a mental  fog this week.   I had several "good weeks" this summer.  I know that it always means, I will pay with several "bad ones", yet I still find myself asking Nate, "do you think I am going to be OK?".  He reminds me again and again of how busy our lives have been and how well I have done through it.  I believe him, but I still ask "am I okay?" Poor Nate! Today, I went to work, talked as little as humanly possible, and drove straight home knowing that one stop, even for milk, would be too much! I pulled up to the mailbox to get the mail.  I misjudged the distance and yes, now I can add another gouge to my poor Jeep.  It balances out the large dent made when I backed into the retaining wall! Both are on the left side of my vehicle further proving the doctor's theory of remaining "left side inattention"(caused by the massive rupture in my right side, it is like my brain 'forgets' my left side still exists, weird!).  I'd take a picture for you but I am still too upset at myself to laugh about it now! I am thankful for a gracious husband who takes it stride and jokes with me "now you really aren't getting a BMW * ".  I am just adding "character" to my beloved Jeep! Maybe when I feel more like a human and less like a zombie I will laugh about it (and if you are really lucky I'll even post a picture or two....)!
The other 'strange' reaction to this "crashing", as we like to call it, is that the bight sunshine makes me physically ill!  Dealing with lights/sun is always an issue for me and you will see me wearing sunglasses even when it is raining, or dusk.  When I have these "at the end of my rope" days, It makes me sick to my stomach and increases my anxiety level to have to go outside in this sunshine! I hate to admit it but I just stay inside with my curtains closed to avoid dealing with all that 'bright'. Don't even get me started about how hard it is to drive with all the blaring reflections of car windows and mirrors, it literally induces a panic attack!
* a BMW would NOT have caught on the mailbox, it would have nicely fit right under it....hehehe

I think, I think too much.............

Last night Nate and I watched " The Curious Case of Benjamin Button".  It looked like a cute 'date' movie with an interesting plot.  A man is born old and grows young while the rest of the world grows old.  He, of course, falls in love with a girl.  When they are in their late 30s/early 40s they have 'met in the middle' with their age and have a child.  The child is born 'normal' but the man decides that the women he loves can't raise a child and a 'man child' alone so he leaves her well taken care of ($), then he leaves her to find a new life without him.  When she is old and the child is grown, this 'man child' is found.  Her name is written all over his journal so police 'return him' to her for care.  He is now a child suffering from dementia.  She cares for him as he forgets how to walk and talk and becomes a helpless infant, then he dies in her arms. WOW, it was written so well, but very hard to follow! I however, have never been a 'good movie watcher'.  I always get WAY to emotionally involved so naturally by the end of the movie I am balling my eyes out while trying hard to regain control.  Yes, as a child I once almost hyperventilated after watching 'Where the Red Fern Grows'.  There was the 'Deep Impact' fiasco in high school. Then, there was the "Message in a Bottle" episode in college!  This is why I tend to avoid watching movies in public or with people I want to see again but sometimes it is just unavoidable, ya know?!! So, this movie wasn't THAT bad but, it did keep me up at night.  I could kind of relate to the character 'Benjamin Button'.  After my aneurysm, I felt like I was a 90 year old women still in a body that looked like a 25 year old (minus all the stroke problems).  However, I was also really mad that 'I was treated like a child'. I was aware of being treated like a child but not aware that I was also acting like one too at times.  I literally walked up stairs like a small child right foot, left foot landing on the same stair as I went up.  So, hours of therapy were devoted to learning how to alternate feet.  Of course, there was the constant 'Lisa, look both ways before crossing the street?', 'Did you remember to eat lunch?' Ah, the memories started flooding back...and then, the tears.  So watch it if you dare, it was a good movie,but don't say I did warn you :-)

Outer Banks vacation highlights!

 Our friends are more gracious than I can even begin to explain.  They invite us on vacation with them to the Outer Banks each year, for several years now.  I would think they would get sick of us, but they just keep inviting us. We treasure our time and memories with them and their three children! Here are some highlights of our trip, Nate even talked me into para sailing and I had a blast!                                   

tired 'stroke hand'

Pirate girl?? Me???

Para sailing with Nate

SO MUCH FUN!!

I think they posed just for me :-)

this picture captures our personalities and is 'SO US'

Learning to Dance in the Rain Movie

Learning to Dance in the Rain Movie: It almost sounds too simple to feel important, but one word... gratitude, can change your attitude, and thus your life, forever. Sarah Breathnach said it best... When we choose not to focus on what is missing from our lives but are grateful for the abundance that's present... We experience heaven on earth.

Not by chance!

While at the library today, I was scanning out books when I noticed a book I had wanted to read, but forgotten about until seeing it.   I mentioned this to the patron in front of me.  It sparked a conversation about TBI.  We exchanged blog addresses and had a wonderful chat.  I went home and changed my clothes to comfy ones and the slip of paper with the blog address fell out.  I was thankful for the reminder, turned on my computer and checked out the blog.  As I read the story of the 'S' family, I realized that Nate and I had prayed fervently for this family since we have mutual friends!  I remember checking for updates on facebook for months because of my connection with TBI and neuro rehabilitation.  I love meeting people like that! It is times like this when I am glad I have a very limited filter on my brain and just say things that I am thinking out loud!  This problem does not always work to my advantage, as you can imagine! So, if you are reading this, it was nice to meet you in person.  I am thankful for the encouragement of several answered prayers!! Keep up the good work....recovery is S.L.O.W but by God's Grace, we will help each other along the way!!

Counting my blessings!

"Count your blessings instead of your crosses; Count your gains instead of your losses. Count your joys instead of your woes; Count your friends instead of your foes. Count your smiles instead of your tears; Count your courage instead of your fears. Count your full years instead of your lean; Count your kind deeds instead of your mean. Count your health instead of your wealth; Count on God instead of yourself." - Author Unknown