730 Day Anniversary - 11/16/2008

No matter how you look at it....730 days, 104 weeks, or 2 years, this TBI journey has been anything but dull! Today marks the anniversary of my fall...tomorrow marks the day I was diagnosed with a Traumatic Brain Injury. It's amazing how much has changed over the past 2 years and yet, how much is still the same.

Things that were once foreign...the word TBI, knowing every Doctor could have the word "neuro" before their specialty, the words Frontal lobe, Temporal and Occipital Lobe, Post Concussive Syndrome, Cognitive Rehab, SHIP, and TBI Support Groups are just few of the things that are now part of my every day life. I never would have thought that every light would be too bright, every noise...too loud, every smell...too strong. I couldn't have predicted that something could ever stall (as I refuse to say "prevent") me from accomplishing goals no matter how much I put my heart and mind into it.

When your brain is injured, everything changes. Most of the time, it's the people closest to you who can see it. The people who have walked in similar shoes can relate to it. And those that specialize in it medically can understand (but not always treat it).

Although there have been drastic modifications to my life over the past 730 days, some things have managed to stay the same. I can still, on most days, find humor in just about anything! Daily Cognitive Rehab I will tell you is not easy! The exciting part, is in Occupational Therapy you get to go on field trips! YUP! I'm not sure yet if we will all be tethered by velcro leashes, but if you have trouble "out" somewhere, they will take you there and work with you. It took me some time to ponder this one and after careful consideration of places that over stimulate my brain, I concluded we definitely needed to hit the bar scene! Leave it to me to try and score free cocktails and a night out as part of REHAB! (It just sounds wrong! LOL)

730 days later, I am still thankful for the unwaivering support and strength that I draw off each and every one of you reading this. Today I celebrate and thank YOU from the bottom of my heart!

Long Overdue Update!

BACKTRACK:

First - A huge apology for leaving you hanging all this time! (and a big thanks to all of you that checked in!) The good news....my toes ended up in the water! :) My EEG came back showing no signs of a seizure at this point, and my Neurologist (Love him!) is leaning towards Migraine Attacks. I started a few medications, preventative and abortive and discussed fun stuff like Cognitive and Vestibular Rehab. My Neuro set me up with a Social Worker in the Cognitive Unit to help coordinate care and resources, so overall it was a great appointment and step in the right direction!

That day the direction was SOUTH - to the Cape! Where I spent 3 amazing nights! It was therapeutic to say the least! Thanks to some good friends who let me borrow their cottage, and another one who came down to visit. It was total chill, escape from life...just Michelle time! 1 Word PERFECT!

(Side Note: One of the reasons why it has taken me 2 months to post a new entry is that writing is something I use to LOVE to do and frankly, I was pretty good at!....now....most of the time, it's often borderline painful! My thoughts aren't as coherent or organized as they use to be, it takes me 5 times as long to put together a simple paragraph, AND, I always feel I have to be in a good mood or come across that everything is OK when I write. But it's not me anymore. Things are more upside down then they are right side up in my world...but, I'm learning how to deal with it, and make accommodations. So just a disclosure: This may not always be the best writing work you've seen, or I may be in a foul mood (shocker!) when I post something. But...it's life! It's my life. It's good, it's bad, sometimes ugly, but always a trip!

UP TO SPEED:

So those medications I went on for the migraine attacks....yeah....seemed to work at first and then my broken brain decided, not so much! Chris and I went to go see the Zac Brown Band (which we consulted my Neurologist on before hand) and it messed up my brain pretty good. It's almost like it can't handle all the stimulation. I kept saying I swear I can feel what a child who is autistic must feel (but not know the normal difference). I could literally FEEL the vibrations of the music hitting the concrete floor, metal ceiling (20th row of course!)..the lights, people dancing...everything...was crazy! My new medication did seem to help, as I wasn't in fetal position! It was a great show...although I'm sure everyone else enjoyed it more. I did everything right...didn't drink alcohol, stayed hydrated, took a nap, you name it, and yet...the meds kept me up all night leaving me sleep deprived with a scrambled brain...and for the next 2 plus weeks pretty much spent the days in a dark room in bed. Oh...yeah, with a migraine (the head pain was new)on steroids, anti nausea meds, etc...and landed in the ER one day. GOOD TIMES. I am now scheduled to see a Neurologist that specializes in Headaches. Unfortunately, it's not until October! From what I've gathered from my Neuro and the ER Dr., due to my TBI, my migraines are not typical, nor is my response to medication...so I am a "complicated patient" (Hot ER Drs words!) - Remind me to tell THAT story some day - all I can remember is being in pain, and a hot ER Dr giving me a Venti style caffeine IV drip! (I kid you not!) It was heaven!

So here's to a new start - more frequent posts (good or bad - but always trying to find humor) and always being thankful for my good friends/family that care so much!

Toes in the water OR ass in a johnny?

Michelle's' Ideal World: Tomorrow I will go in to my Neurologist appointment, he will look at the EEG results (for the first time), tell me I'm "healed" and I will set off for my scheduled 3 day sabbatical down the cape! By the afternoon Zac Brown and I will be chilaxing and living the life, singing "I got my toes in the water, ass in the sand, Not a worry in the world, a cold beer in my hand, life is good today, life is good today." !
Michelle's' Reality World: I could be trading in my bathing suit for a johnny if my EEG results (which by the way just got dictated and faxed to my Dr.s office Friday afternoon) show that the "episodes" I am having are seizure related. At my last appointment my Dr said if that was the case, I would need to be admitted so they could abruptly take me off the medication I am on, and introduce a more specified anti-seizure med.
Here's hoping tomorrow night at this time I am lulled to sleep by the sound of the ocean!

InterFRIENDsion?!?!

So myself, sporting a head wrap similar to Carrie's, and 2 brave friends hit the movie theater for the long awaited "Sex in the City 2"! As we trekked through the cinema and past at least 6 BUFF security guards (we're not talking your typical movie theater rent a cops, but guys you would picture guarding Whitney Houston back in her day, complete with wires in their ears in all!) we were kinda surprised (ok, and I myself will admit, disappointed) that NO ONE questioned my electronic get up! The movie, from what I remember, "I" thought was pretty good! I do recall pressing the button on my fanny pack indicating I was having "symptoms" and then on the way out of the theater as I was a little dizzy and "not right" I was able to press it again! YIPPIE!!! It worked! I was able to get 1, if not 2, "episodes" logged! By the next morning, I was totally beat! I don't recall exactly what I did, but I do remember being 1000% MISERABLE! I hesitated calling Nurse Ratched as I was in NO mood to deal with her, however,...SHE unfortunately was the one person who could put me out of my misery early! With one quick phone call, it was a done deal! Margaret picked me up, and while we were on our way back to the hospital we hit Starbucks. Knowing that Nurse Ratched loved Starbucks, I decided to get her a gift card. I figured...if she was nice, she would get it...if not, it would by no means go to waste in my wallet! So Margaret and I go waltzing in with our Starbucks in hand, and I sit down. "Oh, I can see because it's not Monday Morning, "I" don't get my Starbucks coffee" Nurse Ratched said. I turned around, cocked my head and reach in my purse... "Funny YOU should mention it" I said. "I thought maybe you would enjoy this and think of me", and handed her the gift card. Her face was priceless!! You could totally tell she was not use to this kind of treatment! I must say...after that, I received hot water, my hair nicely combed and massaged, and I actually got her to chuckle about my weekend events! And THAT my friends was one of the best lessons of all! Life is what you make out of the cards you are dealt, and everyone deals with different issues and circumstances in their own way. There is always something we can learn about someone and something that binds us to them. Funny enough, in this case, it just happened to be Starbucks!

The Wild Rumpus has Begun!

Ok...so it's on! Will this make one of my top 100 best experiences? Probably NOT! The high point of my morning was when Margaret (my sister in law / BFF) and I were sitting in the waiting area. As the time drew near, my sense of humor quickly faded. "You have nothing to worry about" she said "I have everything we need"! With that, she withdrew from her enormous purse...a bag of skittles, a can of mace, and a Cowboy romance novel! All I could think was seriously!?!? We're not going for a walk in the park! I'm having monitoring done on my brain in which I can't shower for 3 days! At least she could have remembered some baby wipes! But Margaret was right! She DID have what we needed...a last good laugh before we both met "Nurse Ratched"!
Let's just say Nurse Ratched (whose not really a nurse!)had me crying within 10min of being in her presence. I apparently was trying to bring the funnies back, and "SHE" wasn't liking my sense of humor. Not only was she not liking it, she made it clear she wouldn't tolerate it! Considering it's the only way I know how to deal with things...that's when the eyes began to fill!
I remained silent and still (as did Margaret!) while the woman took multiple measurements of my head, combed my hair, drew some sort of markings all over my scalp and forehead and got me hooked up to everything. Then came the STROBE LIGHTS! From here on out things are a little "hazy". The good news...I had an "episode" from the strobe lights in which they were able to record. I can't freely recall the questions the woman asked me immediately following...but apparently Margaret had tried to answer them for me and was quickly corrected with a curt "SHHHHHH"! So after a while, I apparently became more coherent, no longer found ANY humor in this, and stated I wanted to go home! I was then sat up, a hard pack of some sort was placed on top of my head with god knows what, and in no time my head was all wrapped up with tape, gauze, tape and more tape! I was handed what feels like to be a 2 pound black padded pack that included a screen with my name on it (maybe in case with all the fun I forget who I am?!?!) attached with something short of a HDMI cable coming out of it. Oh...I failed to mention, that HDMI cable thing is also hooked to the pack that sits on top of my head along with 2 heart monitors! The cable is only about maybe 2.5 feet long, so needles to say we have become very intimate! I do have to add that Nurse Ratched did come around a little. I believe she takes her job very serious, is a perfectionist, and that she is probably very good at what she does. Her wrapping techniques is proof of this! Although the tape is excessive to say the least...that pack has not moved from my head, and no matter how many times I have forgotten "Troubbie" (the name Carson gave to my "fanny" pack)was attached to me...NOTHING has moved!
I am happy to report that I have successfully completed 2 "sponge" baths complete with shaving, managed to sleep fairly well (thanks to Chris' multiple pillow changes and rolls to get me comfortable) for 9 hrs and even manged to get Troubbie AND my cone through the head of a tee shirt!!
I'm over 24hrs down and less than 48hrs to go! Today my friend Kristin brought me to TJMaxx to get a scarf so we can go to the movies tonight and see Sex in the City2! (Movies are one of the things I haven't been able to do since my head injury as I get VERY dizzy from all the movements) I'm SURE we will have a good time and hopefully I can get another "episode" recorded! (Not as in a Sex in the City "episode" which I could probably tune in with my new HDMI appendage!) Stay TUNED!

**BTW - I've heard it is hard to post comments on my blog and would like to thank ALL of you who have sent me encouraging emails,texts, FB posts and phone calls over the past few days. They really mean alot to me and apologize for not personally responding to you!**

I'm loosing sight of the FUN in this DysFUNctional Test!

Seriously...THIS is what I'm going to look like come this Friday, May 29, 2010! AND..I'm not laughing anymore! Ok...so YOU are, but me, not so much! I was just reconfirmed for EEG monitoring Friday-Monday by this poor woman, L. She asked me if I wanted to reschedule due to the holiday weekend. I said "why would I want to do that"? Well, come to find out, my head is going to look like my new BFF in this picture, AND they want to do video monitoring! (not happening as I am certain it would end with me in jail or in a psych ward) L. said she felt bad that I would be confined to the house all holiday weekend. "Confined? Can you elaborate on that?" I asked. She said basically my whole head and chin would be wrapped in gauze, double sided tape, and whatever else they could rummage up, and therefore would not be fit for public viewing! She followed it up by saying I cannot be in the sun, sweat, bathe/shower, or do any vigorous activity. (BTW-I'm on the "Don't ask so they can't say no policy" so alcohol consumption never came up! Originally I had considered letting my friends parade me around and put me through torturous activities (in return for a small donation towards Traumatic Brain Injury Research) but now I'm reconsidering that whole idea! But leave it to me...I'm sure somehow, someway...I will manage to put the FUN in Dysfunctional!

Blue Cross causing the blues!

Here's the good news: Tomorrow morning I will be conditioning my hair, adding tons of products to it, and wearing a pull over shirt, BECAUSE I CAN! The not so good news, is that my 3-5 day EEG Telemetry test has been cancelled due to insurance issues! Now don't fret too much! It looks like its only a minor "location" problem. By the end of the week I should have a new date and location set up!

Stay tuned! The Wild Rumpus will continue shortly!