So, today that today is my spaztastic anniversary, me and my she-b!tch tazer wielding, stilleto
wearing, bread knife wielding she-bitch in my skull have been riding
together for 3 years as of today.
It’s not a happy anniversary or birthday, but it’s certainly one that’s
given me pause to think, after laughing at a sarcastic,
congratulatory PS message, I thought I would maybe share some mumblings or
musings or just come on and waffle for a while, it’s not something I
tend to do much of now since I stopped blogging and writing the pain
diary, but sometimes I think it’s just good to share.
We’ve all been there and had the sharks circle, and the darkness descend
with the pain we have, whether you have, TN, ON, ATN, AFP, GN, GPN,
Neuropathy,AD, whatever brought us to the boards, we all have felt it,
the despair, the loneliness, the isolation, and then the hope. And for
me, the brain talk Trigeminal Neuralgia board became home, I’m a member
of other boards and communities, and
am working with Ben to set up one for
eagles syndrome and one for glosso neuralgia, so all will be welcome to
join us there too when we;re up and running, but as with on the BT board
on the this site, there
is always someone to offer advice or insight on what our any given
mumbles are.
But I’m kind of digressing, in the grand scheme of things, 3 years isn’t
long, it’s a short period in a lifetime, but it’s one that’s changed my
attitudes, my approach, my mental state for another thing, and all
aspects of my future and my plans in ways I would never have believed
possible, but that is just the nature of the beast.
I’ve battled with what’s been done to my mental state, and the changes
I’ve felt there, how it’s affected relationships, my abilities in my
roles at work, waiting to see if they’ll fire me because I’m not doing
things right, or “manage my performance” out the door, my abilities to
function as a normal person, without always having this niggling thing
intruding into everything, from work life,social life, home life, to sex
life.
I mean really once these tusks are out, I will have a lot of wifely
duties to make up for, cos I sure haven’t been wanting to run the risk
of having to show up at A and E with part of my husband in a bag of
frozen peas, and get branded the new and improved canibalistic Lorena
Bobbit wiping the blood from my lip!!! Nope the fear of a jaw clenching teethgrinding full out spazz attack
terrifies me, I don’t think he takes me seriously though, but then those
are the risks you men are willing to take for a …… well
anyway you get the picture.
(This little blog here is mostly ripped from a post I put up on the other board, and I thought, ooh, Ben's just sent me a link for blogging,
and I thought about it, if folk go on there and see me raving about the
dangers of oral God know's it would probably attract a whole different
type, and entirely the wrong audience, and I didn't reckon poor Ben or
the mods would appreciate the extra work, so I have censored myself to
keep it in the TN family and save the wider world from the thought of my
vice like teeth, so consider that my good deed for the day! And this
may or may not breach policy of what we should and shouldn't even be
saying but in my view it is a very real risk of spaztastica and the
masses just are keeping schtoom so I say here what the others are too
scared to say, Gentlemen if you have a spazzy lady like me at home, take
serious thought of the risk you are taking, and the fear that your poor
woman will deal with. You never know when the spazz can come down
;o) )
Seriously though, you all know where I'm coming from with this we all
have our different reasons for choosing the procedures we do, or the
treatments we take, and for me a large part of it is to get knocked up
and have little mini me's running around, and we all know that if I do
that while taking the tegretol I run the risk of the mini me's having 2
heads, 3 legs, and 22 eyeballs poking out their chest, That may sound
insensitive, or misguided,and indeed flippant, so please don't think I
cast judgement anywhere or on anyone, that is just my choice for now,
and believe me I have done my research and for now I know the risks that
I personally am willing and not willing to take in that respect as you
can probably read in my other blogs and discussions, so deep breath,
tusks out it is................
I know I’m waffling a bit, but thinking about all of this, and the
various diagnoses and treatment options that have been bandied about and
offered and retracted, and unavailable because of no one in the country
knowing how to do GpN nerveblocks or MVD’s of course they’d find them
ten a penny to put the pacemaker in that you need before that surgery,
but not to do the GN MVD surgery itself, thank God, we figured out that that
wasn’t what I needed!
It’s funny when I think of all the things I’ve tried to fix this, and
frustrating too, but to give you the list of a desperate woman, there
was the fast release tegretol , let’s bounce off the walls and not be
able to speak coherently for weeks, the slow release tegretol, the I’m a
trapoline—oops no that’s ametryptaline, the gaga gaba, which left me
trying to stab my best friend, with no clue until after the fact, the
come down from it that nearly killed me, the lycra lyrica, let’s all
get wasted, constipated and fat on that, bring out the stretchy
trousers! The dulexotine, the venlafaxine, and the indomethacin, yeah,
we’ll take them and become bulimic to throw up all the weight we gained
on the lyrica…
I’m sure there have been other pharmaceuticals, there was the
acupuncture, the hot and cold compresses, the cutting out caffeine and
chocolate, the aromatherapy, the chiropractic, the masage therapy, the
lets get drunk and sick and have the worst hangover in history option,
oops no another bad idea, then there was the taking out all of the body
jewellery, nope, he talked a convincing talk, but the bone cracking
ginger australian was a crackpot with that idea.
Oh yeah, the dental work needed done, ( I hadn’t been in 11 years) but
there was nothing there putting me wrong, no compressions or abscesses
or anything impacted there except years of plaque and a few holes
needing filled.
No MS, no arterial compressions, nothing wrong in my noggin at all
except that I was a mentally unstable drug seeker, erm, oops, no wrong
again doc, of course you didn’t find anything, you were looking inside
my head! Just admit me to hospital run tests for epilepsy, and discharge
me telling me you don’t know why you ordered the 3 days hooked up to
the machine, oh yeah, I forgot, you’re the same woman who can’t read her
own writing so doesn’t refer me to a neurosurgeon when she says she
will, ( in hindsight that 6 months may just have saved me from a TN MVD,
which wouldn’t have done a damn thing to help anyway, so I’ll maybe let
her off with that one slip)
Don’t you know doctor, all the cool kids have these new things called
tusks! They’re on the outside of the skull all the way into the neck
so…All I want for Christhmath ith ma two fwont tuskths.
So I got tusks, tusks of all things! Half elephant half walrus and here I am with
an invisible disability, anyone else see some irony in that!?
There is a spazzy book in this yet, and maybe one day the wider public will be able to read my psychotic drug addled ramblings.
There has been many things that I’ve learned through this, and one of
them is that I have a very dark sense of humour, my sarcasm gets out of
control and that I get really flippant about this whole experience, but
that’s just how I cope with it.
I know now who my friends are, and they have surprised me in many ways, I
know my limitations, and when rarely spaztasticness becomes a
convenient excuse to get out of things ;o) I have a much better
understanding of things now, and although, I’ve been resentful, and
angry, and depressed, and gone through every emotion imaginable, gone
through the stages of grief, yup, lets get melodramatic for a minute and
think about this too… denial, anger, bargaining, depression
and acceptance, I don’t think any of you haven’t done exactly that,
consciously or otherwise.
And while I know my pain is far better controlled than it is for others,
and that I now have surgery in sight, none of us knows how these
things’ll turn out, for better for worse
But my thoughts are for my poor defenceless tonsils that grew back
silently. Who from the day they were ripped from my body the first time
caused me not a days pain, they have been with me through thick and
thin, and have done nothing to deserve their execution, however needs
must ,so they must away, I can but hope they don’t get pissed at me once
they get yanked again, they did behave perfectly for 25 years, and in
their position I would come back and avenge myself, is there such a
thing as tonsil-be-gone, like a weed killer to keep them away? No? No, I
thought not, oh well, if they come back after 2 surgeries, if they
behave I will be happy to have them move back into their trusty home,
however if they start any funny business, I may have to call a priest,
if an exorcism is required I will be sure and get video footage to share
with you all.
Woops, now I came on to just say thanks to the friends I’ve made accross the networks I use, and whatever thread I had
initially has long been lost to the incinerator of my mind, somewhere
under the smouldering tonsils, so 3 pages later I will wrap this one up
and shut the H3ll up, and say nothing further than thank you all for
your help, support, friendship and for putting up with me for so long.
Much love as ever
Gracie x x x