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Weird 'n wacky world of scleroderma

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CRASH

...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all

Amanda Thorpe

Amanda Thorpe

 

Parking Perils

Awhile ago my husband and I and I went to my favourite shopping centre, favourite centre because it contains my favourite clothes shop. Favourite clothes shop because of the fabulous clothes and just as importantly now fabulous customer service. I am always in my assisted wheelchair when we go and staff are so attentive and polite, in the changing room they always help me with zippers, buttons and so forth. They treat me with respect.   One of the hardest things I have found about being disabl

Amanda Thorpe

Amanda Thorpe

 

Oh my, never should have said that!

Er, um, well it looks like I am now an ISN Blogger! How on earth did that happen? Well I asked a certain ISN Prez what she thought about it and hey presto here I am. Oh dear, oh dear...more for you than me trust me!   But I don't live an exciting life like CFM Babs or raise two fine children (stepsons all growed up) like Barefut so what am I going to blog about, well we will have to wait and see for sure!   All I can say for now is testing, testing, one, two, three...   Take care.

Amanda Thorpe

Amanda Thorpe

 

Falling of the Edge of the World

On day I had a life and then... Na, too clichéd, need something different. Once upon a time there was a (insert description of me) and she was (insert description of my day and make sure you include that tall latte or two) then along came scleroderma (insert your own expletives here and make sure they’re a satisfying mouthful)...   In August 2012 I will have been diagnosed with systemic scleroderma and morphea for five years. In my early days medical professionals and others bandied about what

Amanda Thorpe

Amanda Thorpe

 

How could you possibly fail me...?

How could you possibly fail me? You’re supposed to be good to go from beginning to end, at least that’s what you come to expect and it’s certainly what they promote and imply if you do what you’re told!   I did, I did! I went to the gym regularly, I was a jogger, I ate healthy, and I only smoked lightly for a couple of years. From the age of 30 I was acutely aware of Ma’s heart problems, first heart attack prior to 50 and to date 3 heart attacks and a dead artery (if I have to hear about the c

Amanda Thorpe

Amanda Thorpe

 

Adjustable Horizons

This blog has been inspired by KathyD and ShelleyE, in particular their respective comments about "changing expectations in line with ability" or "to simplify", I refer to it as "adjusting your horizons". What are we all talking about? Whether adjusting, changing or simplifying it's all the same thing, coming to terms with our illness so we can live successfully with it.   This is always a hot topic on our forums because it's something we all have to do.That we live with scleroderma is not a

Amanda Thorpe

Amanda Thorpe

 

A La Commode!

So I recently took delivery of not one but two chocolate brown, matching the furniture, commodes! At the age of 44, when most people are taking delivery of designer products, wide screen TV’s, clothing or food, I was taking delivery of commodes...but then, again, I am living in the weird ‘n’ wacky world of...   Both of my commodes are for the purpose of widdley-pops only, in other words urine not A N Other. One is near my bedside and is usually sat upon just before dawn and the other in a diff

Amanda Thorpe

Amanda Thorpe

 

The Nurse and the Cannula

Recently I was admitted to hospital, for 10 days, with cellulitis in my right hand that gave me a very high temperature making the hand red, swollen and very painful, so much so that I instinctively brought the other hand up, like a left hook, to guard it when a doctor tried to examine it.   On my first day I was not to eat in case I went to theatre and secretly I hoped for this, I imagined the pus oozing out of my hand, it resuming normal size and the pain ending. Eventually the doctors burst

Amanda Thorpe

Amanda Thorpe

 

Benefit Review!

Those of us in the UK receiving benefits will be feeling the government's hot breath on the back of our necks as they review us, one by one, in an effort to get as many of us off of benefit as possible, that's purely an opinion. The ill health benefits criteria has changed so the government has decided that everyone in receipt of these benefits must be reassessed. Never mind that our circumstances might not have changed! Never let the truth get in the way of a benefit review!   When first diag

Amanda Thorpe

Amanda Thorpe

 

Diffuse or limited...that is the question...scleroderma by any other name

I recently got together with a wonderful bunch of fellow sclerodermians, we all had scleroderma but not one of us was the same. As expected scleroderma was the hot topic, in particular types of scleroderma, as in what are they and who has what. Good question as I have grown up in the weird ‘n’ wacky world of scleroderma thinking there are two main types of systemic scleroderma, diffuse and limited, with the CREST acronym no longer in use. To my surprise, my dear friend said that a rheumatologist

Amanda Thorpe

Amanda Thorpe

 

It's the word that you heard but what's its meaning?

Diagnosis is usually the first time the word scleroderma is ever heard and being the word never before heard it brings no immediate meaning.   Then symptoms come as a flood of words never before heard, words big, words baffling. Associated diseases, a veritable feast of words never before heard, follow.   Questions never before asked take form in the wake of the words never before heard.   What will happen to my body? Will it hurt? What will I look like? Will I die?   The failure of

Amanda Thorpe

Amanda Thorpe

 

You like me...you really like me!

Did you know, I spent my early years wanting doctors, consultants, nurses etc to like me? Even though I was grappling with scleroderma and the havoc it was wreaking I wanted to be liked by all these new people I was spending time with, especially if I was hospitalised. Guess what, this was a totally normal and common expectation but it was completely unnecessary, even counter productive.   Let me be clear, I am not suggesting that we be rude or obnoxious in any way, that's totally self defeati

Amanda Thorpe

Amanda Thorpe

 

Sleep, eat, repeat!

The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.   To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summar

Amanda Thorpe

Amanda Thorpe

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