When the Dr says, "We need to do a Discography" RUN...

Many of you who know me... know I'm blessed (per se) with a high tolerance for pain... so I don't cringe easily and if I say something hurts... it's typically something that would render others to tears.   I'm not saying this to pound my own chest and swing from vines...  it's just always been that way.   I've been also however, cursed (per se) with that same high tolerance for pain meds, so it's a good think I have a high pain threshold...

I've woken up during or immediately after surgical procedures... and I will not bore you with the graphic details... but let's just say again I've been told numerous times by Drs etc that they cannot believe I was awake, or tolerated what was happening etc etc...  again not pounding my own chest here LOL  as I always used to say to my kids... someone is always bigger or badder out there so...

Today was the day I met it...  so seriously for the weak/faint of heart/pain etc... if you are told you need to do this... make sure you are well prepared.   I knew because the Dr I see was "kind" enough to let me know it was not going to be a pleasurable experience... but "necessary".   So I thought I would prepare myself...

I watched a video of what it was prior etc...  so I knew it potentially was going to be uncomfortable, (again gauging by my personal levels for pain and toleration of other procedures), however  WOWSA....   I think I met my match... and I will pass on *any* future re-match Thanks, but No Thanks...  :)

Love yas!!

True Tea Post ~ The Beast better known as Seizures....

I posted this to a Modified Atkins Diet for Seizures (MAD) Support list that has been a Godsend for me in response to a Mom who posted Ref. Being Disheartened... My response:

Tea Mails are my "Pour a cup a tea and relax a moment" (aka I'm going to ramble a bit, ya may want a drink while reading LOL!)

The way I see it per se is this, we've lived through what many can't fathom let alone begin to understand.

We've learned more medical terminology and specialties that many Drs don't touch upon during their entire careers.

We've not only thought outside box to find whatever answers, hints, potential clues even... That you wouldn't find us near anything that slightly resembled a box-like shape ;)

With that being said... And on a more serious note...

If anyone were to say they weren't disheartened along the way... Hmmm I'd be up to challenge that... 'Cause how could any of us *not* be... The beast we are fighting is something that truly no one has the answers as it effects each of our children, and adults to the point each are unique with not only what can trigger but what type and/or duration of seizures it may trigger (or not) etc.

We are in essence life long detectives racing to solve this mystery that in many cases robs our children of their very life, the life we dreamed of while expecting them, adjusted a bit once the first gutting blow of a diagnosis hit, and so on and so forth... and we all just don't speak of it. Instead we run a grueling race just as fast and hard as any marathon athlete, because we are keenly aware that the ultimate price that could happen if we stop searching, doing, or solving the puzzle each teeny, tiny piece by piece, is an unspeakable tragedy and the beast has no mercy on whom it chooses to rip from us in a blink of an eye...

So we hold on tight with every fiber of our being, at a cost that will and can never be totaled, and cling to our magnifying glass with all we have in the very core of our beings to solve our loved ones mystery of...

God is it... Or was it... Or perhaps it could be...

Ultimately we all secretly celebrate each and every seizure free moment, pray for the seizure free days, weeks etc. Truth be told we all secretly sometimes don't speak of even *those* for a fear of "jinx-ing it" or such... Also almost as equally disheartening :(

I have always said, and will always say you must go with your gut... (No pun intended) if you think you need to go pure, change timing, let your loved one sleep in, or any other "feeling" you get that may, (or may not) be the next piece... Its always a piece, just were it fits or when... We haven't quite gotten the full clear picture to cheat from yet...

We're all working on it and some way, somehow we will continue to do so until we get the answers...

We will get disheartened, we will get weary, we will have many days of a multitude of emotional turmoil, but what we won't do is give up.... Not while a breathe is in us to breathe.

Nor will we stop helping and supporting others on the same journey... as in doing so we too are carried.

(((((All))))))
Love yas!!!

Field Trip and Dreams :)

Civil War...

Talk about a topic always somewhat fresh on my mind... for different reasons per se, but close in the forefront none the less.  Even though by definition of the words is quite the Oxy-Moron huh?  Nothing is very "civil" in and during times of war...

Franki was not that impressed as we were walked through what a Civil War Soldier faced, had in their possession to fight with, etc.   Dillon however was... he loves cops, guns, soldiers and soaks up all that information.  Sometimes a bit too much LOL!
He was also engrossed in their form of communication during the war... (Flags waved in particular directions that spelled out the messages,  yea no cel phones or texting then <gasp>)

Those who know me know my "line" in reference to the Civil Rights not having reached a local county near to me, to be unnamed to protect the guilty.  ;)

While the Civil War was the beginning of shall we say Freedom for all, as opposed to Freedom for some, yet when I allow my mind to wander (Ha!) and I look around and feel that we still really, truly do not have Freedom for all...  not when far too many still live oppressed for a multitude of reasons.  

I still feel so strongly that if our Fore Fathers were to see what has become of all they fought for, they would not be happy campers by a long shot.

I have a Dream...  no truer words were ever spoken... I'd like to see the day all the dreams, past, present and future come to fruition.  Since in my opinion this war has been going on for quite some time intricately, incrementally, and at times almost blatantly indiscriminate.

From Lincoln, through to King Jr whose lives were taken for it, not to belittle those who passed before them, or all the soldiers that gave, and continue to give their lives fighting for it... we all have that Dream...  I'd like to think somewhere, at some point in time... my children or my children's children will see it... though most days this may appear to be a bleak inspiration...

I plead the 5th most days...

However, I think I've reach one of those moments where I just have to let it out... so as to let it go so I can move on in some fashion.

I'm tired of being told how awesome I am, when I can't find a way to help my kid...
I'm tired of being told how lucky my kid is to have me, when I can't find a way to beat this...
I'm also tired of telling people it's really I who is lucky...
I'm tired of being the center of everyone's world, when my world feels like at any given moment it's going to come crashing down around us all...
I'm tired of being gutted every time I get my hopes up...
I'm tired of questioning my faith for getting my hopes up in the first place...
I'm weary, weak and worried what tomorrow will bring.... and I'm tired of that too... as it's totally unproductive.  What a waste of energy... better spent elsewhere.

I'm more tired of those around me that don't have a clue...
I'm more disgusted however with the ones who try to pretend they do... (and they clearly do not!)

I'm tired of the end of the day coming faster then I can plan for... and all I planned to do isn't done and I just want to crawl into bed, wake up and it's all some twisted, convoluted, horribly bad dream...

I wake, and my teenager is fighting with me over getting a learners permit in May, not hoping we have a new power chair he can fit in by then... and a way to transport him in it.
He is playing football or some other sport that I would be cheering him on at, rather then cringing each time he hits his head or spine on a step, seat, or such because he is so vulnerable... which simply sucks...

Yet, when he walks in the door in a few hours... this will all fade away... and what I'm tired of will diminish w/one flash of his smile, and be forgotten with his hug... not that it doesn't return from time to time... however I'm thinking the more I can allow it to be acknowledged quickly, and get rid of that emotional weight... it will fade more expeditiously and dare I wish for it to never return... because quite frankly I am soooooo very tired of being tired.

I'm sure he is even more then I, so who am I to be complaining...

And the beat goes on they say....

What happens when the beat stops...
Or stalls...
WHAT IF you never really heard the beat???

Can you hear the beat?

Somedays I simply do not *get* the beat... the concept of it... or the purpose of it... and No I don't need to get it beaten into me... I'm just rambling about a simple fact...

WHAT *IS* This beat we all speak of....

I would like to know what it goes on to do...
Or even what it did?