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The Nurse and the Cannula

Posted by Amanda Thorpe , 09 March 2013 · 689 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.


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A La Commode!

Posted by Amanda Thorpe , 09 November 2012 · 715 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!


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How could you possibly fail me...?

Posted by Amanda Thorpe , 05 August 2012 · 392 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? The Scleroderma Society UK’s logo is of a man walking on a tightrope and that just about sums it up. 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!


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Falling of the Edge of the World

Posted by Amanda Thorpe , 22 June 2012 · 642 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!


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Parking Perils

Posted by Amanda Thorpe , 29 March 2012 · 1,305 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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Oh my, never should have said that!

Posted by Amanda Thorpe , 12 March 2012 · 622 views

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.





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