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Amanda Thorpe's Blog


You like me...you really like me!

Posted by Amanda Thorpe , 05 October 2014 · 622 views

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 defeating, just that we recognise that interaction with our medical team is not a social encounter for either side. As nice as it is to feel all warm and fuzzy about those providing our care it's not a priority, yes, we need to be able to connect with the person but only so far as it enables us to communicate freely with them. If we're behaving reasonably, their feelings are not our concern and provided the level of care is what it should be, neither is whether they like us or not.

On the whole I have had excellent care at the hands of professionals well able to manage egos and personalities, including their own but law of averages says someone, somewhere didn't like me but apart from anyone involved in a complaint, I am oblivious as to who this would be, just as I should be. Whether seeking diagnosis or living it out, every now and then you're going to encounter someone who is either not on the ball, has a bad attitude or that you just disagree with and in this situation their feelings are not your priority, you are.


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

Posted by Amanda Thorpe , 30 July 2014 · 616 views

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 a quick death following exposure to the word never before heard naturally shifts the focus of the questions never before asked.

Will I become disabled?
Will my pain be controlled?
Will I be able to work?
Will I be able to pay bills?

We have the words, we have the questions but we have no definitive answers only a jumble of opinions, facts and emotionalism from which to fashion a way forward.

Then unexpected, new friendship, a gift that can compensate for much loss. Friendship with some never met, others now familiar, with searing honesty journeys are shared, benefits reaped, the virtual hug employed for those separated by distance.
Having all met with the word never before heard, having all asked the questions never before asked, with a determination never before known, we strive to succeed, to survive.


Adjustable Horizons

Posted by Amanda Thorpe , 24 May 2014 · 587 views

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 choice, how we live with it is and remember it's not just ourselves but also those around us. When our lives were transformed by the life coach from Hades, it also reached its cold, clammy tentacles out to our beloved.

Now we may be think it impossible to live well when we're in pain, fatigued, debilitated, lost mobility, independence, perhaps a loss of material circumstances but based on my own experience and that of many others it is actually possible.

I have said a number of times before that life looks nothing like we thought it would but that's not necessarily a bad thing and this realisation is a good place to start from. If we are not prepared to let go of the hankering after our previously lives, to let go of grieving their loss, we're never going to get off the starting blocks. Now here's the thing, grief has to be respected, even when we move on there will still be times of reflection and unless we grieve we'll only achieve a false start. We have to hanker...we have to grieve...we have to move on!

Whether we "change expectations in line with ability" or "simplify" or "adjust horizons" we find our own way of living with scleroderma. Judging from the people I have met and the people I have encountered on the forums, we are managing to forge lives of quality, filled with much love and keen humour, still acutely honest about our predicament but determined to enjoy. Living our lives like this actually benefits us and of course those around us who, by association, have also been affected by scleroderma.


Benefit Review!

Posted by Amanda Thorpe , 22 January 2014 · 640 views

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 diagnosed with diffuse cutaneous systemic sclerosis I felt like one of "THEM!", a creature from a 1950's black and white sci fi but as I found other people with scleroderma I felt less isolated, less freakish and more human again. The review process has made me feel like a hunted species with no dignity but a price on my head. Okay, clearly I have a flare for the dramatic but as I prepared to complete the 20 page form from the Department of Work and Pensions, hunted, well maybe just hounded, is how I felt.

Said form asked many useful questions but also some bizarre ones, well bizarre to me as I could not see how they assessed my ability to work, or lack of. Questions like "can you pick up a £1 coin, can you pick up a cardboard box?" Who cares? How can this possibly be a relevant question for assessing how disabled I am and what my capabilities are? Better to ask for letters from specialists who are able to assess what my capabilities are. As it happens they've been seriously limited for a long while which is why my former employer determined back in 2008, that I could no longer work, would never be able to again, and in recognition of that awarded my occupational pension to me at the age of 40.

I am very thankful to a lovely friend, who used to complete these forms for a living and helped me complete said form. This lovely friend did so at the drop of a hat as I had left said form sat on the side for weeks. Even though the completion deadline loomed, even though I know I can't work, I froze at the thought of actually filling out said form. Ironically people working the system have no such qualms, after all, they can always get a job should they be declined.

Here's the thing that really bugs me about this whole process, back in 2007 I was busy being busy at my career, I would grab a tall latte from my favourite coffee shop, wander in to work, sit at my desk and enjoy the whole day. I actually looked forward to going to work and did not expect it to end so abruptly and horribly. Even as I became ill, even as colleagues began commenting on my obvious symptoms I kept working. I only went off sick because my manager sent me home after I admitted that working was making my symptoms worse. I didn't sweat it as I had an upcoming appointment with a rheumatologist at which I would be diagnosed, prescribed treatment and then return to work in say 3 months or so. I never expected to be told I had a rare, incurable disease from which I would never recover. Yet, in the wake of such a diagnosis my first question was when could I go back to work! Needless to say the answer was ill health retirement and although I rejected this as ludicrous at the time it came to pass some 14 months later.

I would never have abandoned my career if there had been any chance of being able to keep it and being a responsible, motivated, intelligent person I know that I cannot work and if I could work I certainly would work. Who chooses to receive measly benefit rather than a plump salary? Certainly not me! Who chooses to partake in this difficult, stressful review process? Certainly not me!


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

Posted by Amanda Thorpe , 30 September 2013 · 1,320 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)


The Nurse and the Cannula

Posted by Amanda Thorpe , 09 March 2013 · 8,170 views
cellulitis, 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 my bubble, they would not operate fearing my hand would not heal because of the scleroderma. I asked they consider cutting it off instead.

During the early hours of my first night two things happened simultaneously, they were the convergence of two elements making for a perfect storm, overwhelming and wretched. Firstly came Nurse, taking 90 minutes to provide pain relief, available in simple tablet form, which could have been administered in 10 minutes as there were no buzzers ringing, no admissions no nothing. Where Nurse wandered off to only she knows, what I know is that during her absence my pain raged and I toyed madly with the idea of ringing the buzzer again, for the same thing, at such a late hour! Dare I be that belligerent, declare myself a difficult patient on my first night? I looked at the clock every few minutes, straining to hear
footsteps coming my way and found myself ever so politely grateful when they finally did.

Then came my family’s personal favourite, Cannula Cowboy who burst into my cubicle shortly after the episode with Nurse, announcing “Cannulas are not contraindicated in scleroderma”. I suspected he thought himself so good he could get a cannula into the hide of a rhinoceros without breaking a sweat. I just stared at him, blinking for a time and then explained that it was common knowledge people with scleroderma were difficult subjects for cannulation, blood draws, anything involving needles. Oblivious he proceeded to try his luck and jabbed a needle into the crease of my arm, where you would normally find a vein in a person without scleroderma, but all he got for his troubles was a gush of blood all over my bed covers. Undaunted he turned to my hand, afflicted with sclerodactyly and covered in hard skin, asking why it had not been used. What’s the word, incredulity?

You see I had been told the existing cannula was in too small a vein and wasn't letting enough antibiotics in hence trying to find a bigger one. To me, in excruciating pain, more antibiotics meant less infection and quicker relief. He could have cannulated my eyeball for all I cared at that time, I actually shouted out for him to come back and try my hand having initially declined his suggestion. Try it he did, my right leg shot up in the air and we both watched as the needle, although piercing the skin, failed to advance any further. Cannula Cowboy then rode off into the night on the horse with plenty shame knowing that cannulas are, as a point of medical fact, contraindicated in scleroderma.

Shortly after an anaesthetist arrived with an ultra sound machine and the determination to find a vein because it was in my best interest to do so.She initially pierced the skin which is not on any planet or in any language a “sharp scratch” and began moving the needle around to catch a vein. This was painless and fascinating as I could see it all on screen like an old black and white video game, the veins were small holes that bobbed up and down against a background I can only describe as looking like a piece of liver. Very quickly she speared one enabling the antibiotics to literally course through my vein which I hoped would lessen the pain. Pain that was threatening to reduce me to a pile of emotional rubble but that’s another story.

As a poorly patient I was vulnerable and unable to fend off Cannula Cowboy or indeed give him the really good kick in the britches he so richly deserved. Not the type to learn from an experience in which he clearly embarrassed himself, that Teflon ego allowing it all to slip off, nothing but nothing lowers that grandiose self assurance. As for the Nurse, if you lit a fire under her britches the coroner would be declaring identification by dental records before she moved at a pace.

Although difficult and unpleasant I wanted to share my experience of "Nurse and the Cannula” in order to allow them redemptive merit, in literary terms, at least.


A La Commode!

Posted by Amanda Thorpe , 09 November 2012 · 4,580 views

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 different room doubling as a plant pot holder courtesy of my husband.

Why commodes I hear you say, well it’s not an issue of leakage thankfully but one of comfort or should I say extreme discomfort. You see the gap between waking and needing to pee and being able to get to the bathroom to pee can be a very long time and using a commode means that I can at least provide relieve for my poor thickened bladder. Ensuring that the commode is pre filled with some water and lemon scented toilet cleaner eliminates any odour and with this obstacle overcome I have no hesitation in using it.

You see I used to say how thankful I was to have scleroderma but no joint pain, can’t say that anymore! I find that the longer I sit or lay the stiffer and more uncoordinated I become. Name a joint and it hurts, well that’s an exaggeration it’s mainly shoulders, elbows, wrists and knees but that on top of the foot pain and dashing to the toilet or even a leisurely stroll is out of the question the majority of the time.

As odd as it is to have and use a commode I am pleased to say that I embraced it from the first tinkle even seeing the funny side of things like my camping experiences. My beloved pusscat wakes me up pre dawn, wanting to go out, I open the window for her, but it has to remain so as I always fall back to sleep. Once awake I have to empty my bladder so I find myself sat on my colour coordinated commode, relieving myself with the bedroom window wide open wondering if anyone can see me as I literally freeze my butt off. If I have to use my litter tray you’d think she would.

When I muse over the last 5 years it’s been one shock after the other, one loss, one problem to overcome and I have survived every shock, survived every loss and solved every problem. Doing so has not been a cognitive choice but automatic necessary to keep surviving and something thousands of others with scleroderma do every single day and long may we all continue doing so!


How could you possibly fail me...?

Posted by Amanda Thorpe , 05 August 2012 · 5,905 views
myocardial fibrosis and 7 more...
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 creepy dead artery that she’s walking around with in her chest so do you!) so I was always determined that I would NEVER have heart problems.

Hey Amanda, how’s that working out for ya?

Should have been determined never to have an autoimmune/ vascular disease instead but then I didn’t know they ran in the family prior to having scleroderma. Sometimes I feel like I didn’t know anything prior to scleroderma and now I know lots of things I don’t want to.

Thanks to scleroderma I have myocardial fibrosis which put me into serious heart failure with a 2 year life expectancy in 2010. My ejection fraction was 32% (normal being 55-60%) which went up slightly in 2011 and according to my latest ECHO is now back to normal thanks to implantation of the biventricular ICD in late 2010. Clearly a good ECHO outcome, improvement is a great relief as I figured things would be bad otherwise, real bad, like “What wood would Madam like, oak or maple?” bad. If my ejection fraction had gone down/goes down despite implantation then “Madam wants maple.”

So I was trying to think how do I actually feel about all this? About ending up with the one ailment I worked hard to avoid, heart failure, which I will forever be in because without the biventricular ICD my heart no longer works. About having tests every year, ECHO’s, pulmonary function test, gastroscopy and so forth, the results of which could indicate coming disaster, or that it’s actually arrived, or that, hooray for you, you’ve dodged the bullet...this time. How do you feel standing on shifting sand? In my early days I used to misquote that well known scholar F Gump saying, “scleroderma’s like a box of chocolates, you never know what you’re gonna get”. Turned out to be true. I still don’t know how I feel about all this after 5 years and the thing is it makes no difference. You’re gonna get what you’re gonna get, hazelnut caramel or coconut chew!


Falling of the Edge of the World

Posted by Amanda Thorpe , 22 June 2012 · 6,667 views

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 I now call the medical myth, that after 3 to 5 years scleroderma plateaus, not only is this not my experience but I don’t actually know anyone else who has experienced it either. Sure many get better but it takes way longer than this and the getting better does not mean getting your old life back.

What you eventually do is take the remaining pieces and create a semblance of a life that hopefully can be described using words like quality, enjoyable, different, one tall latte instead of two...
If pithy little phrases aren’t doing it for you right now join the club. The truth is that I am tired of being tired, being in pain, being unable to plan anything, being unable to (insert your own descriptions and/or expletive here making sure they’re a satisfying mouthful).

I feel like I have fallen off the edge of the world (last pithy phrase I promise) and am waiting to rejoin it again at some future point. When I return, and I say when because I will, I have no idea what it will look like but boy oh boy, it’s gotta to be better than this!


Parking Perils

Posted by Amanda Thorpe , 29 March 2012 · 6,323 views

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 disabled is the necessity to have other people help you physically. It don’t matter how determined you are, if your body can’t, you can’t make it by sheer force of will. Having people prepared to help you out when you need it is worth its weight in gold but this vulnerability is galling when you are on the receiving end of the opposite behaviour.

On this awhile ago trip we were unable to park in a disabled space as they were all full, you know those spaces nearest the shop entrance clearly marked out with the attractive wheelchair logos that are usually filled with perfectly able bodied drivers loitering while they wait to pick up perfectly able bodied companion.

Anyway we parked in an ordinary space far away from the entrance and as Michael pushed me the distance to the entrance I noticed that a disabled space had become free. I suggested that we move the car into that space thinking if we legitimately occupied a disabled one it freed up a regular one for someone else. My husband left me in the empty, disabled space while he went to get the car and blow me if a car didn't try to pull into the space while I was sat in it. Picture it, disabled woman sat in wheelchair, sat in disabled space and car occupied by 3 healthy males tries to pull into it and park. Well of course they did it was the one displaying the attractive wheelchair logo nearest the shop entrance. The penny eventually dropped that I was unable to go anywhere so they drove off. I was irritated afterwards for ages, would they have liked the disability as well as the space? Methinks not.

Before I became disabled I would never park (well allow the driver to as I don’t drive) in a disabled space. I was too embarrassed to just be in the car, too conscious that someone could need the space and be denied it for what, laziness, convenience, selfishness, total lack of thought for A N Other? Take your pick because it’s still beyond me even after 5 years of disability.

Take care.

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