Nice to meet you all !

[Guest guest]

Hello everybody,

Some time ago I subscribed to this list... hhmm it must have been 7 or 8 weeks

ago already Sorry for not introducing myself to you yet, but I went to visit

my cyberfriend in Singapore... and I stayed with her for 6 weeks *Oops* yes I

am also a ''gay'' (ooohhh I am so funny !) lesbian... *deep frown* ...you think

that is to blame on Charcot... Marie... Tooth or Hoffman ? Anyway... I am a very

cheerful person and to be honest, it frightens me to read how some of you are

affected with Charcot

I myself for instance... well I had a long painful history... *aarghh* ...okok

it's only fair to share my life with all of you I was born on April 1st

(noooooooooo not kidding this time !!!) in the wonderful year 1966 in the most

beautiful country in the world: Holland ! Let's skip the first years... things

went pretty ok, I was healthy and strong...

At the age of 8 I started walking on the outer sides of my feet... ohhh I

remember it sooooo well... but I also had problems with warts on my feet (and

hands) so no one really worried about it. Ohh I also remember when I went to buy

boots... and the shoeguy said: ''You have firm lower legs !'' Yeah right...

*hehehee* ...he was the first AND last to say it

I turned 12... and my feet were... bad... Time for orthopaedic shoes...

horrible things... you know, the kind that are not fashionable... ''Spice

shoes'' Ooohh I was way ahead of my time !!! I remember one incident... my

and my friends were skipping rope when another one of my friends noticed my

shoes... she burst out in terrible laughter while pointing at my shoes Maybe

I remember it wrong, but... I KNOW for SURE that she laughed. I didn't mind that

much though... because I always believed that what goes around comes around

(wise lesson my mum taught me... or was I that wise myself ?). This girl got

problems with her ears... and she already had a hearing aid at a very young age

!

Come to think of it, I never cared that much what people thought of me...

because I also suffered from terrible acne... gosh when I see the pictures from

back then... ooohh how on earth did I dare to go out in the first place ???

*Hhehehe* oohh I am getting side-tracked ? Sorry !

So at 12 I got these awful shoes... ok... I accepted it... oh and walking

bare-foot... no more... but ok... I kept smiling... despite the pain in my back.

Yup... I also started getting trouble with my back... Keep in mind: I was

only 12... and complaining of backpains ! Mum went to the doctor with me... a

so-called specialist... but he couldn't find anything ? However he let me come

back regularly... I don't remember if we were there every week or every month...

but I remember the long waitinghours...

Towards the end (I was almost 16), he never really looked at me when I came

in... he only wrote down what I said and then told me he couldn't do anything

about it ! He also had the nerve to say: ''You should be glad you ended up with

me... other doctors would be happy to put you on the operating table !!!'' CAN

YOU IMAGINE THAT ???

My parents got worried and my mum asked our family doctor for help. He agreed...

gosh I still can't understand why my dad didn't push more... those 4 years were

hell... I couldn't sleep... well I could, if I put my hand under my

shoulderblade and put my legs in a certain way... *aargghhh* ...it hurt sooooo

d*mn much !!! So the family doctor gave mum a choice of 4 hospitals... and she

chose a universityhospital... a good one ! It was a two hours drive to get

there... but... it couldn't go on like that anymore !

The specialist saw me... and he really was very upset ! I had to have an

operation urgently... my spine grew sidewards (I don't know if I use the right

words... my native language isn't English... but I trust on it that everyone

knows what I mean ?)... yes, scoliose... and it was really bad ! He told my

stunned parents and me that I was slowly suffocating (I didn't even notice the

fact that I couldn't breath that good no more) to die... or that I would end up

in a wheelchair. Hhmmm sad thing that he was about to change hospitals... and he

asked me to follow him... It was funny really, because he was going to some

hospital close to my home !!! Only 15 kilometres by car !!! Also by foot...

*lololol* ...but by car is a lot faster

I didn't follow him since all the tests and so on were done in this hospital and

I trusted all the students and their knowledge... and then... he handed me over

to... the guy who changed my life !!! He won my trust immediately... he operated

on me... he put the Harrington thing in my back... *giggling* ...I completely

forgot about the name for it... till I read a few posts on this list

You know what I said the moment I woke up after the operation ? ''I can breathe

again !'', isn't that scary ? I mean... I was choking for 4 years... while a

''specialist'' saw me on a regular basis... !!! Ah well... The operation was

a great success... done at age 16 A plaster cast was to follow... for 9

months... ooohhh it was a hot summer back then :þ Nah... I didn't have any

problems with it... it was for my own good... and it was only temporarily !

At age 17 this specialist operated on both my feet... *sigh* ...and after 3

months in white plaster, I could walk barefoot again !!! Nope... didn't need

braces... *wwoooww* ...it was in the period that Nike's were THE fashion in

Holland... AND I HAD A PAIR !!! I was soooooooo proud: walking like a normal

human being... on normal shoes *Hehhehee* I loved it... the world was mine...

Unfortunately I got too enthusiastic and one day when I went out to help my dad

(a building contractor) I sprained my ankle... my left one... the one who always

had been worse than the right one I still can hear it snap... and this

happened... sooooooooo long ago... *shivers* Hhmmm I didn't go back to THE

specialist... but to the first aid station close by my place. I was put in

plaster... well... my ankle :þ After this incident my foot often got covered in

this stuff... because I kept spraining it... Keep in mind: I still didn't

have braces !!!

Oohhh my memory is failing me... or is it because I don't want to live in the

past no more ??? Anyway there was this period that I desperately wanted to see

MY specialist again... to ask him to consider a second operation on my left

foot/ankle. Bad news though: the guy left the universityhospital However the

family doctor offered his help into tracking him down... and... yes he found him

!!!

Am I telling all this right or... *aargghh* ...well... eventually I ended up

sitting opposite him and asking him for this second operation. He hesitated... I

kept pushing... he called someone else to see me... and that guy (a Belgium

specialist) assured him this operation would work out perfectly ! *Wooowww* he

agreed... and... YES... the operation was a great success !!! It was very

ingenious: they took the strong inner muscle (that is used to pull the foot

inwards) and they put it on the outer side of the foot... and they tied it under

my footsole... *shrug* ...are you as confused as me ? Or did anyone have this

operation also ??? Anyway, it was funny... because whenever I pulled my foot

inwards, it went outwards !!! Weird... isn't it ? Aahh but soooooo inventive

*Deep frown* did I have braces at that time ? I think I did ! Well that was

something else: the orthopaedic shoeguy who also makes my mum's shoes, NEVER

ever told me about these things... and if the neurologist didn't refer me to a

rehabilitation centre at the age of 21 (when I was FINALLY diagnosed with

Charcot) I would have never known about them *Wooowww* I love my braces...

gosh... to imagine I wouldn't have them... terrible

Wait... *blush* ...yes I am a bit jumpy with my story, but I was diagnosed with

Charcot at age 21 and the second operation on my left ankle was after that ! So

I did have my braces when I begged MY specialist for another operation Hhmmm

my mum was diagnosed with Charcot also... after alllllllllll these years

Things with her are... different... she has no backpains... but bad feet... *sad

face* ...and painful feet ! Partially this is to blame because of many

operations... in which she was only a guinea pig... My mum is 67 now... so you

can imagine about the ''knowledge'' of foot corrections in her younger years !

TERRIBLE !!! In those years, specialists were butchers... *aargghh* ...they

spoiled my mum's feet completely She also suffers from rheumatism and only

recently she got a hip-replacement... *deep sigh* At this moment she is

slooooooowly recovering from a bad infection in her leg... gosh... what to do

???

As for me... I got problems with my knee... *hehhehee* It's not funny... but it

sounds much worse than it is My left knee-cap got dislocated on 3 seperate

occasions and that is why it's recommended that I have to wear a kneebrace all

the time. Don't tell anyone... but... *whispering* ...I don't wear it that

often... I wear it... rarely Gosh... can you blame me ??? Those plasic

anklebraces... then this rubber kneebrace... *pfffffttt* ...too much But

don't worry (as if you do... *teasing wink*) because I am being very careful

What do I do in life ? I don't work... *pretending to pout* ...because I've been

declared unfit for work at 21... right after THE diagnose My ambitions of

becoming a published writer are still very much alive though... sooooooo...

remember my name... erm... what was it again ? Oooohhh LILIAN !!! Furthermore

I've been working out with weights for years and years... *bright smile* ...for

as long as I can remember I started off with 3 kilo weights and now I am

lifting, pulling, pushing dozens of kilo's... every day... for at least 2 hours

a day... *showing my biceps* Honestly: I am very strong... physically and

mentally

What else ? Oh in my mid twenties, I wanted to be normal... *aarrghghh* ...I

know it's impossible since I am severely handicapped... because of being a

lesbian I mean... but anyway, I wanted to fullfill my long cherished dream of

getting a permit to ride a motorcycle ! I already drove a car... but a bike...

*aaaawwwwwwwww* ...I wanted that soooooooo badly !!! Of course I got it...

*please congratulate me* ...ONLY due to my persistance Yup... another sad

story: if you are a well-known person in the medical files, you have to keep on

proving yourself (with extra tests and extra exams) to all those gentlemen who

have to decide about your ability to ride a bike... or drive a car

Gosh... this was my story... *smiling* ...did anyone fall asleep ??? If so:

''WAKE UUUPPPPP !!!'' As you may have noticed, I have NO problems at all: I

sleep like a log, I am never tired (unless I stay up all night), I can walk for

hours and hours, my body never aches... no cramps... *shrug* ...I feel as

healthy as can be Hhmmm ok if I would write this in winter, I would remember

my cold hands... but nowadays the weather is nice... so... no cold hands at all

And besides, you know what they say about cold hands ? ''Cold hands... warm

love'', and that is what I wish all of you !!!

Thank you for your attention... and I hope you will let me ask questions for my

mum now and then ? I recently read about taking calcium for cramps... and...

*lightbulp* ...YES !!! Since my mum is taking those pills (because her bones...

*ggrrlll* ...what's the word again ??? I don't feel like getting the dictionary

!!!) she doesn't have those late night cramps anymore !!!

With all my love,

Lilian.

P.S. Anyone from Holland... or... Belgium... Germany ? I live in the southern

part, close to those countries I mentioned