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  • barefut

    Just for Today

    By barefut

    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
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  • barefut

    My Scleroderma Diagnosis Story

    By barefut

    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
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Come Fly With Me!

Just when I was beginning to think it was all so not worth it, we boarded the 747 jet bound for Heraklion Crete. I'd had little sleep and the slight delay caused by bad weather over Europe had me worrying slightly about the inpending flight, I'm not the greatest flyer!   I was squashed in a seat designed for a dentist chair, I'm sure! I was also commanding the window, not that there's much to see flying through the night and definitely not my prefered time to travel -- my outlook is if It's g

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New Model!

Twas the night before the procedure and all through the house, Not a single thing was stirring not even a mouse   -- Okay! Okay! We've all heard that one before? I'm just about ready to put myself through yet another stint in hospital all for the cause of scleroderma! True, it's for my own good and I appreciate the necessity of the situation -- I need the job done to stay alive so it's an absolute done deal! I'm talking about (in case you didn't know) a new feeding tube, state of the art I

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Losing Mum!

I've never thought of getting old in a way that I couldn't do the things I can now. I'm under no impression that getting on in life is a joyride. Things start to fail --- simple as that! But of all the misgivings of age, I think there is none more distressing than Alzhiemers/ Dementia. My mum suffers with this condition and what I'm about to tell you are my inner thoughts and agony as the daughter of a sufferer. So, with tears streaming down my face, here's my story. If you don't want to be depr

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Here Comes Summer!

Here comes summer -- that time of year when your attentions turn to happy days in the sun, cool drinks and light clothing.Along with that, however, comes the dreaded holiday preparations. I don't know about you, but I hate the manic dash for items to squeeze into a suitcase the size of a large drawer and the pile of clothes that grows by the day in the corner near the washing machine. Do they think it will put itself into the wash? One day they may get a shock and realise that I do have a hand i

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It Never Rains But It Pours!

It never rains but pours! That was my Gran's favourite saying when things go wrong. I guess in my case it's considered torrential. My very good dietician pointed out that the end bit of my tube needed to be replaced, with very good reason in fact! She decided to mail some new parts to me and I duly recieved them on Saturday. By Saturday afternoon I was rather wishing I hadn't tried to fit them myself. I pulled at the end bringing some of the tube with it and soon realised I was in a storm withou

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Socialising With Sclero

The few friends we have remain our friends no matter what! I guess what I'm trying to say is, although we don't have very many these days, the ones we have understand that I'm no longer the person I once was physically -- confusing isn't it?   Before succumbing to this awful condition, we socialised with a huge circle of so-called friends. I became ill and, well, quite frankly we were dropped like a stone. I couldn't believe how people we considered close buddies closed the door! I'm not sayi

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That's My Girl!

My daughter begins a new era in her life today as she leaves high school for the big wide world! I gave her a cuddle this morning, then kissed her off to school, a far cry from the first day she started. I remember anxiously waiting for her to come home, wondering if she'd made new friends, would her teachers be nice and above all, would she like her new surroundings? That was 5 years ago and a lot of water has flowed under the bridge since then.   She was such a shy kid. She was tiny compared

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Week Of Appointments

My head feels as though it's permanently in a spin, especially this week as I have way too many appointments all at different times of the day -- I'm all mixed up! Today I have a speech and language therapist coming to my home to assess me. Now don't ask me why I need a speech therapist unless she's coming to shut me up -- I can talk under water! No! She said it's more to do with my swallowing. The last time I saw someone I think was a speech therapist who told me to place my chin downwards t

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4th Dish Of The Day

My Fourth Dish of the Day is about to be aired on our local radio station. How contradictory am I when you consider that my ability to eat solid food has been taken away from me. My dietician is due to pay me a home visit next week but I had to rearrange her appointment due to my commitments at the radio station. Her tone of voice said it all when I explained my purpose for being on air.   "What, you're reading out recipes live on air? Wow! what a brave thing to do -- and why?"   The truth

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Market Day

I never keep a diary -- I should! My list of things to do keeps on growing by the day. To say that I'm a housewife is an overwhelming understatement. I'm Head Cook, Domestic Cleaner, Secretary, Taxi Service and Mum! And to cap it all --- I'm employably indisposed --- something I've just made up! I'm given a zillion instructions before the family leaves the nest each morning, don't forget to do this, don't forget to do that -- Oh! and don't forget to sort out my car insurance! If you ask me if

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Creepy!

I remembered something today which made me smile Something I've not spoken of in a very long while This wise old man I ran into Began to chat about someone he knew He first enquired about my health then began his tale The sadness in his tone of voice made me turn quite pale For he told me of his closest friend who had recently passed away He was going to the cemetery when he stopped me along the way   He reminisced along each step and I laughed at every joke Said they were the non-comp

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Green Monkey Disease

I sometimes want to get off this merry-go-round but it won't slow down enough for me to jump. I try to get on with my life however each day begins but I have this constant reminder that keeps bobbing up its ugly head. I go for my clinic appointments every six months and as far as I'm concerned, that's that! I forget about everything and try to carry on as normal, until a call from my general practitioner's secretary bursts my ego bubble. They need to repeat blood tests and my general practitione

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Car Clean

Spondylosis! "What's that? I recieved a copy of my clinic letter, closely followed by a call from my general practitioner's surgery. I hate going to my general practitioner but I've been summoned to attend. I think it may have something to do with my neck and lower back, y'know the little tail (coccyx). I get the most unbearable pain in my derriere when I've sat for any length of time. I've complained about this on my last visit to my very unsympathetic, or rather pathetic, GP who told me on no

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3rd Dish Of The Day Show On The Radio

I've just aired my 3rd show on the radio. I'm quite excited actually as the DJ told me that he was receiving some very positive feedback from my little spot. I'm beginning to lose my nervousness that hampered my first couple of shows -- I simply read out recipe's far too quickly and in a much higher pitched voice than normal --- I sounded like the Chippendales on helium! I've learned to relax a little in front of the mic instead of ducking below and trying to evade it like the plague. It all

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Thinking Of Greece

Seems like it's not only me that throws a "wobbler" now and again. This ###### computer is giving me high blood pressure! I wait for ages to sign on and then the whole thing crashes -- Arrggh! Fingers crossed I'm up and running.   This year is flying by, May already -- ****! I've just gotten over the winter festivities and placed all the trinkets back into the loft. Soon it will be summer and my head's thinking Greece. We plan to be a bit more adventurous this time -- that doesn't mean we'

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Claiming Disability!

Well! Another diagnosis to add to my ever increasing reasons why I'm not normal! Cervical Spondylosis -- sounds like a joke, the kind you would invent to fool your employer upon having a sneaky day off, and how do I know that ---- well I've never done it of course --- Okay, Okay just once perhaps! How on earth do they come up with such names, can't they just say "Okay, you have arthritis of the neck dear" or "A Crick neck"? Either way it all means the same. I now have to embarrass myself by t

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The Weather

It's true that us Brits talk about the weather in any conversation -- who would blame us? The temperature has gone from 70 degrees plus to 48 degrees in one foul swoop. Glorious sunshine to dark stormy clouds. ****! I don't know whether to wear a jumper, take an umbrella or wear a coat! Of course we are an island in a north westerly hemisphere-- or are we? My geography was never good at school! Anyway, changeable weather is almost a definite and one thing I do know is, I'm up north and if it'

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Can't Put My Finger On It

There are times when I can't just put my finger on what's wrong with me! I've had one of those weekends, not wanting to do anything -- feeling nauseous and slightly sorry for myself. My hubby and daughter took me to a soccer match on Saturday. The sun shone, we had really good seats in the stadium but we lost! The comments from the crowd made me smile, in fact at one stage I was enjoying the crowds mocking so much that I turned my attention away from the match just to listen. There was one p

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In For Life!

This is a little poem I wrote quite a while ago. It's actually quite true and it has an amazing twist at the end!   I was sitting in my hospital bed Reading a book I'd already read In came this lady who caught my attention Hello! she said, my name, did I mention! To which I replied No! but mine's Barbara, what's yours Margaret, she answered, Margaret Doors. What are you in for?, she asked tentatively Life! I replied, rather cynically So you've been here a while she said with a grin

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Memories Of Tomatoes

Funny how just sitting in the garden brings back such happy memories of a day when the whole world mattered and you just happened to be in it! My uncles were farmers as were their parents -- my grandparents. I now own the family farm, much depleted from the days when cows roamed the land and the old tractor chuffed up and down. The smell sometimes putrid, other times just dreamy as the grass was mown for the continuous cycle of feed. My grandad grew just about anything and everything but his

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Abnormal -- Who...me?

Just when you thought it was safe to relax -- whoosh out of the blue comes a telephone call from my rheumatologist. I'd been to my 6 month review just last week and apart from her wanting me to stay in hospital, all went fairly well. In retrospect I should have been expecting nothing less than a stint in a hospital bed -- I was quite ill when she examined me, but 2 years spent in that hospital did nothing to make me favor another spell. I got away with some rather strong antibiotics, a tick

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First Day --- New Job!

My first day in a new job, well I say first day in a new job but actually it isn't a job at all rather it's voluntary! I'm talking about my first day at the radio station where I've been given the opportunity to air my own show delivering a "Dish of the Day" recipe. I thought I would be very nervous but, you know what? I wasn't in the slightest. My little item lasted about 15 minutes on air but I spent quite a bit of time at the station afterwards just chatting --- something I do best! I le

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Life Is A Box Of Chocolates

Typical NHS! That was the general chit chat at my rheumatologist appointment on Friday. My appointment was one hour overdue with little going on in the background or so it seemed! I was drawn in to a conversation with a lady who sat right next to me, Y'know the type? Seemed okay at first and then you got the entire history without pause for breath. I'm not an uncaring person and I consider myself a good listener most of the time but, please! isn't there a time and place for everything? The la

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