Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K.
I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I w
I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma.
Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care.
Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves
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