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Whose Hands Are These?

Posted by barefut in barefut impressions, 15 November 2013 · 253 views

Hard dry skin that cracks and bleeds
Sausage fingers do impede
Whose hands are these
That so betray me
Stiff and clumsy
Oh how they fray me
And in the cold turn white then blue
Not to mention painful too
Whose hands are these
I don't recognize
Fingers swollen twice their size
I lay them in my lap to rest
Before I put them to another test


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

Posted by Amanda Thorpe in Amanda Thorpe's Blog, 30 September 2013 · 636 views

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 told her she had both limited and diffuse, I queried this having never heard of it before and not being able to fathom out how you could have both limited, slow in onset, slow in progression and more favourable in outcome and diffuse, rapid in onset, rapid in progression, poor outcome. Was localised included in this blurring of types?

Well having thought about it, now it makes perfect sense! My dear friend could have both and as it happens so could I! I was diagnosed August 2007 with diffuse and my symptoms had started in February 2007, within 6 months I went from working full time to being so debilitated that I struggled to walk. I had skin involvement above the elbows and knees and on my back and abdomen, all fitting the diffuse criteria for sure.

However years prior I was diagnosed with IBS and at one point was thought to have an ulcer, remember that gastrointestinal involvement is a hallmark of limited scleroderma. Having been an avid gym attendee I found exercising a struggle being more fatigued than usual, eventually giving up exercise altogether. A patch of tight, waxy skin appeared on my right shin and grew larger, then appeared on the left shin, being misdiagnosed as necrobiosis lipoidica, it was in fact tight skin from scleroderma.

In 2004 I was diagnosed with interstitial cystitis, my first autoimmune disease and one associated with scleroderma. When I was younger my hands had always been white and cold and I was also always cold. I slept a lot as well making sure the weekend included a nap or two, without which I found it difficult to cope. Looking back I could have had mild Raynaud’s as early as my twenties, limited scleroderma as early as 2003, albeit atypical presentation, with diffuse coming on in 2007. I also have localised scleroderma, morphea, but I am not sure where that fits in.

My dear friend also said there may not be limited or diffuse but just scleroderma and when you see how different we all are, it's like we each have our own disease, this makes sense. It certainly makes it easier to fit in those of us with atypical presentations who do not start with Raynaud’s and tight skin on the fingers or hands.

I guess the issue with the lack of distinction is the difference between treatment of limited and diffuse. Diffuse usually demands close monitoring and aggressive treatment whereas the approach to limited can be more relaxed. If you don’t know what type of scleroderma you are dealing with how can you treat it? If treatment is symptom lead surely that ticks the boxes, except what about preventing the symptoms in the first place? Isn’t that where immunosuppressants come in, dampen down the immune system and hopefully slow down disease progression?

Having had scleroderma now for 6 years I find this all fascinating, the very types of scleroderma could be up for discussion! What diagnosis, I wonder will I be left with?

This is such a complex disease! Think about it, everyone of us here has scleroderma but we all have a different experience of it and unlike other diseases there’s no real disease path or predicted outcome, we’re flying by the seat of our pants in the weird ‘n’ wacky world of scleroderma.

Amanda Thorpe
ISN Sclero Forums Assistant Manager
ISN Video Presentations Manager
ISN Email Support Specialist
ISN Blogger
ISN Sclero Forums Support Specialist for UK Scleroderma

International Scleroderma Network (ISN)


Stumpy Fingers

Posted by CFMBabs in CFM Babs from Chorley FM, 21 February 2013 · 737 views

Did I ever mention how illiterate I am with computers? It's a surprise to all I imagine, that so much of my time is spent at a Radio Station which actually runs with nothing but computers! I am there at my desk looking all clever and like know what I'm doing -- It's a ruse!

I have spent hours writing stuff, from reports to emails, only to press the wrong button and it all magically disappears - how frustrating. I haven't the will to sit down and begin again. My heart sinks.

My stumpy fingers, clumsy and unwilling to hit the right key, thank goodness for the "Backspace" button. How many times have I attempted to write a word that just keeps coming up with the wrong thing altogether, and that brings me to my phone Oh! the dreaded texting exercise. I have sent many a text that makes no sense what-so-ever.

"Hi Alan I gusse I wsont be in tofay, I hace too muvh to do"......Send!!

........Ping! with a little mailbox sign

"What? :/"

I usually ring him instead it's easier. My texts have been known to crack a smile on the straightest face. I have sent messages that I couldn't possibly post on here for fear of deletion from the site. My daughter despairs. She got me one of those stylus things that you touch the letter with in the hope it solved my dyslexic messages so that people could understand without having to ring me back! It worked for a time but I lost it and now it's back to stumpy fingers and non decipherable messages

I mentioned it in clinic that I am likely to get myself into trouble with my fingers and my somewhat rude or dysfunctional messages - they think I am in the wrong place, "The psychiatric Dept is that way my dear!" And yes I am such a fool, I make fun of myself to make light of a situation, that's me all over.

I joke that my fingers are perfect for making pastry. In fact my pastry though I say it myself is by far my greatest achievement in the kitchen, although I am pretty good at baking!
I used to be top of the class at school, it was almost embarrassing watching my cakes rise like I was inflating them with a bicycle pump. My friends, it's fair to say hated me, my teacher loved me. I was the model student from which she would take the credit and I would stand with a will to die of embarrassment at the final result.

I took to cake decorating too. I went to college and I will always remember the Mothers Day Cake, beautifully decorated like a woven basket with flowers all made of sugar and the foolish trick of putting it on the roof of my car whilst I got in and then forgot about it.

It fell off in the middle of the road about half a mile from the college to rapturous laughter from passers by. My work ruined and a flattened cake to boot. One of my many thousand disasters!

My stumpy fingers ended my love of cake decorating. It does ruin most of my everyday chores in fact. I hate loose change, shoelaces, buttons, threading a needle-impossible! Opening jars, milk cartons, zips, clasps, packaging, and text messages to name but a few.

And there goes my phone - text message. Let's see who I can upset today. My life is never dull?


All fuelled up and nowhere to go!

Posted by Michael in Michael Thorpe's Blog, 02 December 2012 · 1,712 views

Most of us of a certain age would have been saddened by the recent death of one of my heroes, Neil Armstrong, the first man to have stepped on the surface of the moon. Heroes are hard to come by these days; they appear to be in short supply. If you were to ask people if they had a hero, someone they admire and respect, they would all give their personal take on the subject; after all we are so very uniquely different.

I think Neil Armstrong was a reluctant hero. He shunned his celebrity status, the limelight, wanting to be separate from the ‘man on the moon syndrome’ and get on with his everyday life. Facing the everyday mundane and challenges that scleroderma brings can help make heroes of us all, albeit reluctant, all fuelled up with nowhere to go. We may on occasions feel blasted into some kind of outer space experience, an orbit unknown to us, a whole series of circumstances, psychological trials and relational challenges.

As s therapist I have met many people who, for whatever reason, want to escape a relationship that causes them pain. Some have tried to escape into mood changing substances, some into new relationships and others into whatever takes their fancy. However most people want to just stop and take a look at their relationships, their behaviour and overcome, gain control and get on with living their lives. In my thinking this determination and tenacity makes them a hero, albeit a reluctant one.

Sometimes we need to hide emotionally, deny or minimise the impact scleroderma is having on ourselves and on our loved one. Seeing someone you love fighting to gain control over their body, feelings, mobility and environment can leave us feeling powerless. Sometimes we escape into work, activity, or nothingness, beyond the gravitational pull, floating into space for a time, anything rather than face the evitable loss, hurt and of course grief that follows on like an ugly sister. We recall past experiences, painless, fun times when we had dream as we wait patiently for that beauty which comes with acceptance, that acceptance of chronic illness and all it brings.

Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others. If we’re propitious we’ll maybe find another hero who will listen as we take this unexpected and unusual journey. Hero's after all are made not born, they tackle the problem to release the gifts and gifts can come in the shape of people, people just like you!


Attack of the Porch Monster (Penny has retired from blogging. We wish her all the best.)

Posted by Penny in My Two Cents..., 29 April 2009 · 796 views

I live in a semi-rural setting, it used to be very rural until a few years ago when all of a sudden new housing developments started popping up like jack-in-the-boxes left and right, and there have always been a few feral cats running around.

There is one female in particular that always seems to somehow find a place to use as a nursery somewhere in my yard and not a year goes by that I am not trying to catch kittens, tame them, vaccinate them and find good homes for. Last year she chose a spot behind the shed for her broods, but my husband had stored some ladders there so this year she found a new spot, under my porch.

This is all well and good; the kittens will be a bit easier to catch and I might even be able to catch the mother if I play my cards right and get her vaccinated and maybe even spayed this time since the local shelters are having a free spay/neuter drive. (I have managed to catch her a few times in the past and sweet talked a vet into giving her rabies vaccines and so forth and this June she is due for her next rabies booster.)

No one asked Loki what he thought of this development, but I think that his opinion would be a veracious paw down after his recent interaction with Mama Cat.

It has been pretty hot the past few days and as a treat for Loki I went ahead and opened his pool early this year. I had gotten him one of those plastic kiddy wading pools with a slide last year and he loved it, dashing up the quick steps made out of paving blocks then skittering down the slide and pouncing around in the shallow water before scrambling back up the slide to lay down in the sun and dry off. He was full of quivering excitement as he watched me pull out his pool and give it a quick wipe down before filling it with the hose, dancing in circles then peering over the edge and barking at the swirling water as it filled.

He was so excited that he did not even notice that Mama Cat, his arch nemesis, was beside the porch watching him with feline disdain.

I turned off the hose and called Loki over to me then told him to go get his towel from the porch and with a happy yip he spun and dashed to the porch steps sliding to a startled stop at the sight that greeted him at the bottom of the steps.

There stood Mama Cat, her back at full arch, twisting slightly to the side as her tail puffed into a bristle, spitting at him and side hopping towards him. With a yelp, my brave little dog who has barked his fool head off at black bears and is not one bit afraid of dogs ten times his size, tucked tail and raced towards me eyes as big as saucers and screaming the entire way. Before I knew what was happening he had flung his little trembling body into my arms and was trying to bury himself under my shirt and me, being the supportive and loving doggy mom that I am, laughed like there was no tomorrow.

When hubby got home he was put to work placing lattice around the porch, leaving a small opening at the back, far away from the stairs, for Mama and brood to come and go but that does not give Loki any comfort at this time.

It is cooler today and the pool will not be used, which is just fine with Loki since he does not want to use the steps without an armed guard present. Mama Cat has not moved her brood, they are still under there and in a few weeks time there will be kittens staggering around and a few weeks after that I will hopefully have them inside in some old ferret cages teaching them that people can be very nice and preparing them for safe and comfortable homes. Loki knows the drills for baby kittens in the home and though he is not thrilled he does well with them and will even allow them to crawl over him and sleep next to him after they have tamed and have been vaccinated since interaction with dogs helps them adjust to a new home.

Right now, though Loki would give you a wary eye and whisper to you "Be careful of the porch - a monster lives there."

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