A pain shot in my mouth, "ouch" I've broken a tooth
I was sucking on a popsicle when crack it went, "Strewth"
I spat it out to my daughter's horror. My husband gave a cry
That's coz you've got wooden teeth and I gave out a sigh
It isn't enough to have sclero, but I'm falling apart as well
Soon I'll be wailing " Unclean" as I wave my warning bell
My hair is going thinner, my teeth are falling out
My skin is getting tighter, my lips I cannot pout
The greyness is taking over, I'm begining
When I look back over my 46 years, I suddenly realise that, I either have a very good memory, or a very boring life. I mention the boring bit very loosely as I for one don't think my life is anything like boring.
I can't begin to put into context any one part of my life, most of it fortunately, has been very happy, or is it that I don't remember the bad times, whatever!
I remember one particular episode of my life being pretty wild. I was in my early twenties. I had a penpal-an America
A visit to the Optician made me realise just how much I need spectacles. It wasn't quite like "Read the top line of letters on the wall", more like "Can you see the wall, dear?"
I read A, O, T, X. Then stuck my neck out as far as it would stretch, screwed up my eyes and then recited letters that were never on the board to begin with. "Mmmm, you do indeed need spectacles" said my Optician who's age is about 90 and still has 20, 20, vision. It may be no surprise to learn that his name is M
A visit from the local building regulations officer had us ripping down the kitchen and re-arranging every corner of the house. What for?, you might ask. Well I
have a solid fuel cooker, AGA, and the flue system was in the wrong place according to building regulations. The problem was if we moved it where it was supposed to be, it would be coming up through the stairs. The only logical place after that was on another wall with the flue coming through the bathroom and out the roof. You have n
They usually say, the older you get, the wiser! I would like to put that to the test in a laboratory since my Dad seems to defy all odds.
He's 78, or is he 79! Who knows? He doesn't and neither do I. He lost his birth certificate along with his driving licence when I was a kid and now he doesn't even know what year he got married, except of course there's me and by doing a rough calculation I make it 47yrs 2 weeks. My mum has slight dementia but is very silent with it. She's never been a gre
Gee I feel so bored today, I wish something good would occur
There's nothing on the TV and no juicy gossip to share
Oh, I'm not a gossip mind you, I just like a little chat
I like to talk about nothing but a bit of this and that!
I used to be so busy and time just seemed to fly
But now I'm busy watching, time just passing by
I have a daily list of jobs, I'm like a robot programmed to clean
And no matter how I do it, it's still the same routine
I need to break this syste
The saying "It could only happen to me" describes my situation very well. The older I get, the more it happens, or is it just me! Who knows. But someone, somewhere is having a laugh spiritually.
Yesterday was just one of those days! If it could go wrong, it would, if I could get it wrong I could, you get the picture!
I picked my daughter up from school as usual. There'd been a few mishaps during the day, far too many to mention. Firstly, I'd forgot to wash my daughter's pants, boy! I was i
My husband's bright idea came from hating to mow the lawn
He'd ponder on it for hours and then decide to do it next morn
Of course that morning never came and it was always another day
He never intended doing it, the long grass was there to stay.
Then one day he was thinking, a rare thing for me to note
That if he used his head a little bit he was sure to get a goat
Now, no one told my hubby that goats can be awful mean
And that they stink like an old pole cat who's smell can turn you gre
Anyone who knows me and I mean personally, will know that I am totally scatty. I always have been and having a chronic disorder gives me no excuse to either blame my scattiness upon that, nor to pardon my actions due to age or circumstance.
I go head first into everything, never first thinking what the outcome may be. Take yesterday for instance. I visit my parents almost every day. They live in an old folks apartment within a complex, nearby. Every Thursday is craft day and this week the to
I'm perhaps a little scatty, some say that's my age, oh yes
Some say that I am witty and never in a stress
I do the most incredible things, get everything mostly wrong
Like trying on a pair of shorts that look more like a thong
I drop so many items, my cupboard is almost bare
And when I go out for a meal, people often stare
I might have a mid life crisis, who knows who cares anyway!
And I will have one more trial to get me through today.
The sun is shining and out com
You have Raynauds, said my doctor. I must have been nineteen
A very common condition, many people with that I've seen
It's nothing for you to worry about, it may even go away
And with that diagnosis, I was sent on my way
My friends thought I was amazing I could make my fingers white
And they almost looked illuminous when we went out at night
I laughed with all the others but really deep inside
The pain was just unbearable and that I had to hide
First it started with two fingers then thr
Hey! We all get bad days with scleroderma; in fact more bad than good. When I feel good, I just have to share.
This morning, the sun was shining, I felt reasonably okay and I was going shopping to my local market. So gloves on, jacket, scarf and boots, I set off in my new car, yes new car! The heater was on full blast and the radio was competing to make me deaf.... What!, DEAF I said. OKAY SO I WAS DRIVING oops, sorry for shouting over the music, yes driving into town. I had a real good feelgoo
This is one of my favourite true stories; one which I tell over and over again, mainly because it breaks the ice in company and it's a pleasure, if not embarrassment for me to tell it.
It must be ten years ago since this happened--my, how time flies. I know my daughter was just a mere 5 year old. I was working like crazy running my own successful print finishing business, and my hubby working just as hard in his line of work.
We recieved a phone call from my husband's father; he was just r
Don't you just hate Sunday's, I do! Family snoozing and the day never seems to get going, D'ya know what I mean!
Today is no exception to the rule. I awoke to the sound of knawing, hooting and a very unhappy dog running around my trailer, yes, we're still in the trailer.
My constant moaning at my husband about the never ending building project is wearing thin. I'm like an old record he say's, but what's unatural about wanting a house to live in!
We've been homeless in a loose sense of the wo
Argggh! can you hear me screaming. I wrote this piece once and the whole thing disappeared right in front of my eyes. So here goes again.
Boy! I've had a frustrating week. Besides having sclero, running a dangerous farm animal sanctuary and having a blocked tube, I've also had the usual run in's with the medical profession.
I have not one but two different hospitals, yes, two, sounds straightforward, Nope!
My problems began earlier in the week when my feeding tube just blocked up. I was ru
Mum, do you remember the war she asked! an innocent question indeed
I'm doing a school project and an old person I need
How old do you think I am!, you cheeky little chump
You never ask a lady her age you might just get a thump
Well do you remember the war or not! I'm simply asking you
Which one are you asking about!, please not 1942
I was just a little twinkle in a very young lads eye
I wasn't born till the 60s and I won't tell you a lie
I was raised to the sound of the Beatles 4 lad
Oh no! the summer school holidays, six weeks of blowing lids
One mad hormonal teenager, and a shopping mall full of kids
The moaning I hear from morn till night is getting on my nerves
And the criticism from one so young is more than one deserves
Why can't we do something interesting instead of sitting at home!
I swear I'll be climbing the walls and be wishing I was alone
Why is it nothing will do, I suggest a walk into town
The look upon my daughter's face is permanently in a frown
I'm having one of those days! Y'know the one's where you need to scream but no one listens. My whole life revolves around my family, feeding them, the animals and trying to feed myself. So what happens if I can't feed myself. like today. I'm bunged up, blocked, totaly backed up with liquid nutrition. My tube is solid, kaput! I went about my usual business this morning after a really uncomfortable night. My neck, shoulder and arm were killing me, not to mention my feeding pump kept bleeping
What's the meaning of Crest! wouldn't you like to know!
It's not as bad as you may think, my rheumatologist told me so
So what's the C, I hear you say, well calcinosis to me and you
And R stands for Raynauds and it's what turns your fingers blue
E is for the esophagus, I have problems there, Oh my!
S is for sclerodactyly, it makes you look younger, Mmm not I!
And T for talengectasia, hard to say and harder even to spell
The symptoms of crest I have all 4 and the 5th one now as well
I've noticed many times on the messageboard the unsuccessful claims for disability. I've been down this road so many times.
Here in the UK the laws on disability seem the same although worded differently. In my experience, and I qualify for that title since I've had numerous claims turned down, I concluded that it's not how you represent your claim, more on who actually approves or disproves it. A general practitioner will only have limited knowledge of scleroderma, my own general practition
Well now I know how to post, there's no stopping me! I won't say it was easy, there were times I wanted to give up, and I think that myself and Shelley clogged up cyberspace with our constant emails to and fro.
So here I am, square eyed, sore finger tipped and numb bottom. I'd like to say wide eyed and legless but since I no longer drink alchohol, and hardly ever sleep, never mind the rhyme I wrote I was just kidding, I can't boast being either.
My sole task for today has to be housework
Let's set up a new venture, said Shelley Ensz one day
We'll make a place to air our views, where we can have our say
So they enlisted me and others to write upon the board
Perhaps a little blog or two, the anticipation soared
So away they worked in the background amidst the sweat and the toil
They tweeked at every little switch, and the keyboards they did oil
They perfected every link and click, and then invited me to join
They said it would be easy, just as easy as flipping a coin
Well! I have scleroderma -- Sclero what! I heard you say
Oh something very nasty a greek word by the way
I'll give this vein another try, I won't be beaten y'know
I sigh "why not" just have another go.
No! theres nothing there, are you sure you live and breathe
Well! I think I need some of your blood before I up and leave
I'll get someone more specialised, someone who never fails
She's quite a formidable person who has no time for males
The rustle of the curtain told me that she was h