THE SARCOID MONSTER

tHIS IS A SECTION FOR THOSE FRUSTRATIONS OF THIS DISEASE



for expletives,outbursts, creativity, frustrations, emotional angst, attitude, family/personal effects, etc etc etc

:evil:







earlier this year i wrote this piece to try to describe my feelings at that time, i thought i would share it with you here....





THE SARCOID MONSTER


20 years on may 16 2008 ive lived with neurosarcoidosis.

what should i do for this anniversary?

a hard one that question......ALL THOSE MEMORIES !!!...................reality hits in..............hey suzan, dont joke with this one!.................you keep strong there.........its trying to take over.....im not gonna let it......but you have no control on this, if it wants you, its gonna be with you!............silence.



I AM ITS HOST


it is unwelcome, it knows that, it stays with me, lurking and sulking in the backgound, kicking me hard if i try to outrun it.

i cant get away from it.

it leaches my energy,

a parasite of my soul



and where it has been, in the avenues of my brain it leaves it huge dark footprints, embedded and fossilized.


but my brain is my friend, it is clever......it can find new lanes.




it has started, the sarcoid monster knows.........it is jealous..........it wants me for itself.


HOW I HATE THE SARCOID MONSTER !!






today i am drained, i cannot fight back..........let it do its worst.


who knows what tomorrow will bring? .........i will never lose hope













for.......my brain is my friend, it is clever......it can find new lanes.


but its tired right now.........................let it rest.







and i will never give up .





(written 03 april 2008)




xx suzan xx .............. now my friends...kick ass !!! <br><br>Post edited by: suzan, at: 2008/05/25 13:35

Bless You Sweetheart xxxxxx;)

thanks tony....


..... .....NO...I JUST WANT TO VENT...!!!



........BLAH.....:sick:


xx suzan xx......

today i went for neurophysio.....they have me doing a short course in pilates exercise, to try to strengthen core muscles in my trunk.......this should help my stability, and stop my arms going off with a life of their own.


boy did i have a laugh today with it.......they introduced this large excercise ball....did a load of things on my back with legs hanging on to ball and pulling and lifting bum off ground........... then.......there we were..all neaat in the class, on out knees...elbows up on ball, leaning forward......next thing..........we are all humping that damn ball.....lol, we looked funny..:laugh: ..........it was a scream...:laugh:

xx suzan xx

sounds like you had a right old ball:laugh:

yeah we did..

sarcoid monster leads a right merry dance too..


yesterday hospital transport really messed up (i may write something on the main forum on this), and got to 1hr therapy session 30mins late....despite being picked up 2hrs before it due to start..and its only 15mins journey to hosp.!!.....and then did the exercise class......

today im feeling exhausted numb, dizzy and down!.....gottafind my sense of humour.......seems like im being tested...and i dont like this exam.

xx suzan xx