Can you relate?

Our "Buddy", he can relate (hehehe)

Another very difficult thing in recovery, for me (formally a 'people person') has been "relating" to other people again! Part of this is a brain injury.  I remember after leaving the hospital, I had wonderful friends and family who had lived through my nightmare with me! We could all relate in our own unique way! In my head, they had each other but I "craved" somebody to relate to, a friend to understand me!!! I attended a women's brain injury support group, and while we had many similar "issues" to live with, most of them were my parent's age and in a different stage of  life! In my mind, it was different if you hadn't just had brain surgery! Specifically, if you hadn't just lived through a ruptured aneurysm, I had convinced myself you couldn't relate to me, or I to you! Facebook didn't exist "back then" so I started my blog hoping some poor soul would stumble on it who desperately needed to relate to people again, like I did!!! I remember the first time I had hope. Hope I could 'relate' again happened while watching a documentary on Bob Woodruff.  Finally, somebody who was 'relatable' as he relearned everything over again, including how to walk after near death and "major brain surgery"! He was the speaker at one of my first Brain Injury Conferences.  It was at that moment I began to have hope I would find others who could truly understand me and what I had lived through!! While many people suffering from TBI had to convince doctors, friends, and family that they had an "invisible disability", mine was very obvious!! So, I spent all my remaining energy trying to convince people I DID NOT have one, and believe me I tried everything!!! I wasted a lot of energy trying to act exactly how I remembered before my aneurysm.  It was exhausting, and practically impossible if you knew me (or were specialized in rehabilitation!) Of course, eventually in my desperate attempt to be understood I found (she found me) a young aneurysm survivor friend through the Brain Aneurysm Foundation webpage! I think this is when true "healing" began!!! Eventually, as time passed and I relearned more things and began to embrace/accept my new reality, relating to people again seemed a little easier, MOST days.  Thankfully now, there is  a wonderful bunch of people who have all survived aneurysms online. I confess I spend a lot of time online now!! A few of them even live reasonably close to me! It is much easier for me to see past my "aneurysm bubble".  I have incredible friends  each with their own unique struggles and trials, many of which now seem "worse than mine", although my husband would disagree. I think this keeps us all moving forward (the idea that someone has it worse than you, although you should never, ever compare yourself to others)!! For me, being able to relate to people (my own age, with or without TBI) again, made me feel more like a human being, or the "old me" and less like an unexplainable anomaly (but let's face it, I was always a little bit odd anyway, hehehe).  I like this fitting quote by Jodi Picoult :
       
         "All any of us wanted, really, was to know that we counted. That someone else's life
            would not have been as rich without us here."

SNOW usually makes me happy :-)

    I try to be a positive person and always be thankful for how blessed I am in SO, SO many ways.  But, I'll be honest, I still struggle with the little things that shouldn't be a big deal, sometimes!  It snowed today and determined to cease the moment I grabbed my cross country skis excited to try them out again before spring!  But after what seemed like half the day, I could not, for the life of me, get that left ski clipped in my boot! I tried everything my hubby had recommended before! Feeling tired and defeated and a little bad for myself I decided "nothing was fun anymore, it was all too exhausting and frustrating." On the verge of tears, I called my poor hubby to vent! After calming me down, for the millionth time, he promised to be home early today and help me get a ski in before dark.  Knowing my brain was now too tired and flooded to be successful without help, he made me promise I would abandon my efforts for now!

Sometimes it is better to just take a break and come back to it later, as irritating as it may be!!

 

So instead I took a few pictures of Mookie

enjoying the snow, and I felt better!

She doesn't mind my small camera,
my good one she refuses to look at!

dead battery!

I had two appointments to go to Wednesday! After finishing the first one I was very exhausted and very early to the second one.  Trying to respect my limits I decided to turn my Jeep off, pull out the pillow in my back seat, lay my seat back and take a cat nap before my second appointment! After resting for about an hour I climbed out of my Jeep and tried to tackle my second appointment, although I was still exhausted!!! When climbing out of my Jeep, my "idiot beep" went off telling me to turn my lights off!  Oops, good thing there is an annoying beep.  I thought I hadn't really rested that long (I still have a poor sense of time, it only gets worse with fatigue as everything else) the battery was probably fine! Out of my appointment an hour later, now thoroughly exhausted I  climb back into my Jeep. I decide I will start it and let it get warmed up while I "rest my eyes" for a few minutes before attempting to drive! I put the key in and tried to start it.......moaning sounds are made, the pathetic moaning of a battery completely out of juice and it's driver is too!! So, take a deep breath and call your hubby!! The poor man finally answers his phone while I eat humble pie again, and tell him what I have done! He was still out on a service call an hour away and assured me he would come get me right away if I couldn't find anyone to help me jump my Jeep (he keeps me well stocked with jumper cables and basic tools, "just in case".)  Determined to save him from rescuing me and going WAY out if his way after a 12+ hour work day I decide to look for help, now what I haven't told you is that I am at "Living Resources" for cognitive training, they have programs for individuals with all sorts if disabilities!  The first person to come by was a "transportation aide" of some sort.  He informed me he was on a "very tight schedule" and wouldn't be able to loan me a few minutes to jump my Jeep! Knowing N was there to rescue me, I remained amazingly calm, for me! The building I had come from was now locked but I saw movement inside so I began to pound on the door.  Some poor soul, (also the one the time stressed van was there for) opened the door and let the crazy (me) in!  Everyone in the lobby was waiting for a ride and was obviously not concerned about my predicament, although between their disability and mine,  they may not have understood exactly what I needed! The first person with a "Living Resources" badge on was now my target!  The poor lady agreed to help me as much as she could but overhearing my plea, another gentleman also with a badge offered to help me jump my Jeep! Ah, the sweet relief of a willing, knowledgeable stranger!! Now, please know that I have used jumper cables before, before my aneurysm! Poor N has reviewed the procedure with me but I am still scared of hooking those things up to the battery! Electricity scares me! The "good Samaritan" brings his car over to mine (which was backed in to the parking spot just as my hubby has instructed me to do just in case I ever need to jump my Jeep) hooks it up as he walks me through what he is doing. He certainly understood working with people who have disabilities as he spoke slowly and calmly.  He then even instructed me not to try to start my Jeep until he beeped his horn.  He told me this like 3 times, well played my new friend, well played.  He beeped the horn and my Jeep turned right over! Still concerned that this "happens often", (I suppose by looking at my vehicle you may conclude this), he recommends I get a new battery! Thankful for the kind gesture I assure him I just left my lights on while I took a nap since I have never had a problem before, and my husband was very good about taking care of it!! Of course, as would any "Good Samaritan" would, he refused my offer to give him something for his trouble!  His kind act truly saved my day as small as he thought it may be!  Thank you "Good Samaritan", may your good deed not go unnoticed!!

Tenth Avenue North - Worn (with lyrics)

Perhaps my new favorite song..........................WORN by Tenth Avenue North

Songwriters: INGRAM, JASON / DONEHEY, MIKE / OWEN, JEFF

I'm tired
I'm worn
My heart is heavy
From the work it takes to keep on breathing

I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

I know I need
To lift my eyes up
But I'm too week
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

And my prayers are wearing thin
I'm worn even before the day begins
I'm worn I've lost my will to fight
I'm worn so heaven so come and fluid my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Yes all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn

I have never seen this before..........

Here it is, no possible way for my wrist to curl in this one, YAY!

Maybe it is good to be reminded what a medical "freak"/anomaly I truly am.  Yesterday, I went to a new therapist, an occupational therapist, specializing in hand rehabilitation.  My neurologist felt it was important to address the remaining tone/tightness in my left hand! As the therapist read over my medical history, he was silent.  Upon finishing,  he asked me to tell him what had happened and what my remaining difficulties were.  I began to rattle off my aneurysm(s) story as he took necessary measurements for the new brace my neurologist wanted! After measurements were taken and I was done rattling off my story, he looked at me in utter amazement and says, "I have never seen a hand do this," over and over! Of course, if you know me, you know I am thinking "....if only I had a nickel for every time a doctor said they have never seen, - you fill in the blank-........" Still I was curious exactly what that meant, so I asked.  He explained his utter shock that I was actually using my hand! He had never seen an aneurysm survivor ever regain use of a hand that was once completely paralyzed.  Adding to his shock was the fact that my rupture was in the exact area of  the brain that controls hand/arm movements! His reaction was very dignified and, for the first time, I was not scared by the reaction I got.  Perhaps, enough time and healing has elapsed making it easier to take or perhaps it was the calm, factual, not dramatic way in which it was presented! Either way, it is easy to become "cold" to your own amazing story.  It is easy to rattle off it's details, yet another time, and not consider the miracle of what you are saying!  So, maybe it is good to go to new therapists despite the fact that you are just plain "tired of all the appointments." I am glad I went and I think they have a  great treatment plan to help me regain some strength and dexterity in my left hand!  Happy Valentine's Day!!

Skiing and EEGs

"Shadow of who I used to be"

FINALLY ready to go!

In an effort to find "something I enjoy doing now," I strapped on my cross country skis for the first time in 8 years! I just, 'flat out', find things I 'used to like' VERY exhausting now instead of relaxing!! Of course, it hasn't snowed in a few years (like enough snow to 'play' in) so when I heard,1-2 feet of snow I was cautiously excited! I can usually tell when weather fronts are coming through, by the area on my head that was removed to do my clipping surgery.  My head was not aching like it would for a big storm! I wanted it to snow so badly that I tried to deny my "head indicator" and looked forward to SNOW! It did end up snowing a few inches so I decided that, despite a "foggy brain day", I was going skiing, regardless!  It only took me a hour to find everything I thought I needed then a half an hour to figure out how to put the leg guards on (I didn't want snow in my boots!).  Unable to actually get my boot clipped in the ski by myself I found my hubby (whom I nicknamed 'Mr. Fixit' seriously the man fixes anything, except me. Believe me he has tried) I really was having a rough day, nothing was working together, N had already rescued me from a meltdown with our two labs and my camera! Now, I was determined to ski??? Being the good hubby that he is, he picks up my skis and listens to me begin to meltdown over getting my boot clipped in.  Another hour and several, "I give up, I'm not doing this today", and the ice was cleared from my left ski allowing my boot to finally clip in despite the spastic left side, now cold and tired! Feeling very down I was just determined that it was going to be a disaster. N assured me I could do it and gave me instructions about where I should go, knowing I would have trouble figuring that out myself. We joked about the length of time he should wait before rescuing me. Still not confident I was capable of going, I  took a picture of my shadow, determined it was "a shadow of who I used to be". Yes, this is how I get when I am exhausted and the enemy in my own head "attacks me".  I did end up enjoying my little "outing" despite the rocky start to the adventure and if it ever snows again I will dig out the skis and enjoy the quiet while I try to balance!  It was a much better experience than the bike riding I tried, for the first time again, this summer (I still  have NO desire to bike in the near future). 


"Wired"....look at that tail!

"All the cool kids are doing it" hahaha

     Today I was 'hooked up' to an ambulatory EEG to monitor brain activity for 24 hours!  Doctors are admittedly "overly cautious" due to the aneurysm history!  So, I have wires sticking out of my head, "carefully disguised" in gauze and connected to a monitor, which is carried in a pack with me!  Now, I have a strange sense of humor and debated walking around the mall like this, just because!!  Thankfully for everyone else, I didn't have the energy to do it and decided I would just go home and blog and share my "craziness" with anyone brave enough to actually read my blog! I am not looking forward to the removal tomorrow!  I have a feeling those electrodes are really stuck on there good by the smell of the glue!!  I joked with the technician about "how much hair I have, that must be making her job fun".  She laughed and said something like, "It really doesn't look like you have a lot if hair , but wow, when you get digging around to find a place to stick these things, I would say you really do have a lot".  Since this wasn't my "first walk in the park with an EEG" I had a cute little knit hat with me to more cleverly disguise what you see in pictures, for other people's sake.  I know before my aneurysm seeing someone walking around like this would have made me feel a little sick! Yes, I think WAY too much about everything, one of many flaws! Like sometimes this, too much thinking leads to things like; if I ever write a book, I think I will title it "Rediscovering (or Redefining)  Lisa"  Have a wonderful week all!!!!


Yeah, those are going to leave a mark!!







My tips on driving again!

As requested, here is my suggestions for driving post TBI:

- Driving is EXHAUSTING(I'm not going to lie).  It will take more energy than you realize or remember!  There are so many things going on all the time, decisions to make, sequencing to keep straight. It can easily become overwhelming but CAN be done!!

- I took at driving "recertification" class at the rehab hospital I stayed at.  They checked my reflexes and drove with me to make sure it was safe for me to be "out and about".  See if a rehab hospital or OT (occupational therapy) program in your area has a class like this!!

- Drive short distances in familiar places.  I still find it almost impossible to drive and navigate.  I can do one or the other (OK, navigating is not my strength, even if I'm not driving.) At first the 5 minutes to Target and back was all I could do for one day! Eventually, I have worked up to the 1.5-2 hour trip to my parent's house which mostly takes me down a small interstate and rural country roads!

- When I drive I still talk to myself out loud to help me remember things like "look left, right, left".  I used to have left and right labeled on my dashboard (on less thing to think about.)Because I had a stroke on my right side, my brain sometimes ignores my left side, I have to always be conscious that I am paying attention to what was on my left side! ( the driving class at the rehab hospital addressed this problem with me).  I also tell myself what I see when I look left OR right to make sure my brain is processing what is going on)

- I had a list stuck to my radio that I looked at when getting in and out.  It had a list of things to do/check before leaving.  It went like this :1. seat belt on 2. start car 3. look both ways. Getting out looked like this: 1. car in park 2. turn off key 3. key in handbag 4. take handbag with you 5. lock the car.  It just helped me to organize the basics and safe a little mental energy!

- RADIO OFF at all times!  Limit as many distractions as you can!

- Always carry an extra pair of sunglasses (I have to wear sunglasses even in the rain or I get a headache) and a snack to refuel if needed.  I always have water for taking "pills" if I need to while I am out!

You'll do great "V"!! Take it slow and build up gradually! Start on quiet familiar road with a very patient and loving, and brave person (hehehe)! You will do great! God bless and thanks for reading my blog!!!! -Lisa