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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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Challenges!

I hate going shopping and with good reason too I can't think of anything I'd much rather do For once a pleasure, a womans perogative they say Is now just pure torture on a cold blustery day   To stand at the stall grasping your purse Perish the thought there's nothing worse With hands like ice and fingers so numb It's hardly a wonder I'm looking so glum   The pain unrelenting no relief will commence Fiddling with coins and dropping the pence Got rid of the purse with the horrible cla

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Typical Day!

If there was ever such a thing as a typical daily routine, then I guess Tuesday has go to be it! The local outdoor market sounds like one to be avoided if you have Raynaud's especially in winter! So why do I persist in making a journey to the car parks, get out and walk round like I didn't have a care in the world. Of course my fingers by then would be completely white, numb and painful and no amount of rubbing or shaking would make them feel any better. I fumble with keys and always end up weig

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DIY!

What would you be doing on a Sunday afternoon -- putting dinner in the oven, going for a nice drive in the car, even relaxing with a book or a soppy film on TV? Oh no not me! I'm putting beams back up in the kitchen, painting the ceiling and having one of those "If you won't do it -- I will" moments. I was venting my anger at hubby who without saying a word got out his hammer drill and blew off the cobwebs!   The weather was appalling and not fit to do anything structural outside. Not phased

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Temptation

The sun comes out and it reminds me of where I ought to be! My mind starts thinking about Crete and little butterflies begin fluttering around. I'm tempted to press the button marked "Book" as I browse the tour company website, only the thought of things more urgent forbid me to go ahead and do it! It's like I have a naughty gremlin sat on my shoulder "Go on -- do it, press the button, give Raynaud's a rest" whilst on the other shoulder my conscience says "Don't you dare." I'm tempted and my f

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The Fire Is So Delightful!

Just when you thought it safe to announce Spring, Winter returns with snow and ice! The geese are quite confused. Strange sight looking at a nesting goose when all you can see is an orange beak against a snowy background.   My Raynaud's is just loving it. If there were Oscars for the greatest appearances then mine would be awarded for the most prestigious I'm sure? I can't actually remember a day gone by without at least one attack, with the exception of my longed for vacations in Crete which

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Say Cheese!

I had a few hobbies when I was young, photography being one of them. You'd never guess that I used to take photographs for numerous projects including a magazine article on the Beatles of all people! Living fairly close to Liverpool, some 23 miles away, I was asked by an American friend to take shots of the new Beatle City Exhibition. I shot the whole thing in black and white and the result was amazing.   I shot weddings too, mostly for friends, in fact, that's how I kind of got into cake deco

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Pampered Pooch

What do you do when some well meaning soul knocks on your door returning your pooch with a sweet shampooed smell. To say I was a bit confused was no exaggeration! Our daft dog that runs amock chasing geese, the postman and just about anything that moves, was treated to a salon style makeover by a passer by who saw her asleep under a tree in the field.   The morning had started unusually quiet. The goats were standing without noise in their pen. The geese were on their nests and we presumed th

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Back To The Future!

Back To The Future -- Hey! -- Remember that film? I remember sitting in the cinema with my fella, who now happens to be my other half, marvelling at the special effects and tapping my toe to Power of Love -- Huey Lewis And The News, Wow! How long ago was that?   Memories whilst shopping with my daughter this morning came flooding back as I helped her choose accessories for an outfit she'll be wearing this weekend -- The 80's are back! Remember the leg warmers, baggy shirts, net gloves, beaded

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Symptoms/Study

Been having some gastrointestinal and pulmonary issues that have been bothering me more in the head than in the lungs or gut. Makes me wonder what is going on in there. Of course I just had my 6 month check up and failed to mention the gut stuff. The shortness of breath which I did mention to my pulmonologist, didn't seem to phase him. It bothers me however, since I haven't had to deal with it for such a long time. Maybe it is just a flare? Maybe it is to do with my fall upon my ribs? The f

barefut

barefut

 

Bad Hair Day!

I'm not the prettiest sight in the mornings. To say I resemble a 1970's Punk Rocker is no exaggeration -- hair stuck up in an electrifying pose, I could have easily spent the night with the goats and their electrically charged fence that now surrounds them -- he, he! can't help but laugh!   It was so funny when Apple, the smallest goat, touched her inquisitive mouth on the wire -- Zap! She jumped up in the air and ran off holding her mouth like she had an extremely bitter taste. The dog had a

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Shadow Of My Former Self

My life has changed so much y'know -- illness being one So many years have passed, so many friends have gone You think you have a special friend and to find that is no more Like she invited you in for coffee then shows you out the door   Can't say I blame them anyhow, who wants a boring mate Whose only friends are goats and geese contemplating fate So now I'm here on my lonesome, not even a girlie chat Even the postman shuns me and I don't blame him for that There's been so many ups and

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Peace In The Country?

Time to put the box marked "Proud" under the bed and do what's right! Last night I laid my case for a contractor to come and fix my fences. It's gone way beyond a money thing and way beyond having enough time to do the job. This job became urgent yesterday and I simply refused to play games of catch-me-if-you-can! with my goats for a second day. My hubby and I had words. I never moan about my illness, maybe I should but it's times like this that make my hubby realise that if I'm complaining ab

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The Greatest Escape!

The Great Escape! How much can one person take when all the animals decide to break out and make a run for it?   This morning I knew I was in for a day of trouble! The goats had been mischievous in the early hours, locking horns, banging heads, that sort of thing. I could hear them from my bedroom, upsetting the geese at 4am and waking me from an already interrupted night of sleep due to an aching neck and stiff shoulder.   It was no surprise to me when we got up and they weren't there.

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Bigs

Good Sunday morning all,   Jammie Day. Catch up on housework and laundry day. Reload the weekly pill container day. Rainy Day. Procrastiblogging day! :) Wish I had a laptop so I could curl up in my recliner and blog away instead of sitting at this hard, cold, uncomfortable desk in the kitchen.   Basketball season comes to a close and Baseball tryouts are next Saturday. My favorite sport of the season. Not to brag, but my boys have been blessed with exceptional athletic abilities which mak

barefut

barefut

 

Touching Spring With My Fingertips!

Watching one of my geese nestle down in the corner of the yard, birds singing for all their worth. I'm beginning to think that spring may be lurking in the shadows waiting to make an entrance some time soon. That brings me a certain sense of relief. The winter has been extremely long, cold and unforgiving and my Raynaud's needs some respite. The coldness extended throughout the whole of last year. The building work stopped and everything looked bleak. No chance of moving on, stuck in hum drum as

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Revenge of the Dweeb!

If I have to be honest with myself (and I usually am) I have to accept that I was never going to be anything but myself, no airs or graces, just me!   It's true that I was a dweeb at school in the 70's. All the other girls talked boyfriends, clothes and records -- remember them? I once said that on air during one of my radio spots "And the next record is....."The presenter screamed "WHAT?" remarking that it was a tune not a record and boy did I feel old.   Anyway I'm digressing but the point

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Too Thin To Notice!

What do you do when your clothes don't fit Too baggy, too big, need taking in a bit I can't find any pants to adhere to my figure Not much difference from when I was bigger For then my excuse for a perfect fit Was a size more comfy and an extra bit   Now I'm left with the smallest rail With clothes marked petite on sale And there begins my shopping mission Something less daring to fit my condition. You see I wasn't always a size so thin And clothes I couldn't always get in   People

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Cat On Hot Bricks!

There are times of the day that I just have to sit down. The term "cat on hot bricks" reverberates in my head because that's what my gran always said!   "You're like a cat on hot bricks dear -- sit down!"   Fact is, I find sitting quietly a major problem. When I do sit down I write a blog and even then I'm up and down like a Yo-Yo.   The mornings pass so quickly, mainly due to the fact I'm out and about on my travels, firstly to college, my dad's place and then possibly the corn mill for

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Goals

Short term goal: stay in my jammies all day. Long term goal: stay in my jammies all day every Sunday. It's 2:30 pm and so far I have accomplished my short term goal. Even went out to breakfast in my jammies. Our local cafe gives customers 1/2 price breakfast if you show up in your jammies - but well that's once a year in February and it wasn't today, but I didn't care. And nobody else did either. I like that in a town. Of course my jammies are flannel pants and a tee shirt so I just blen

barefut

barefut

 

Time Will Tell! Barefut

Y'know, I empathise with Barefut's blog on Time. How right is she? You could be my shrink any day! "Time don't give me time," is actually the words of a song back in the 80's from a guy who's fallen slightly from grace in his latter years.   The Greeks have the best philosophy of time I know -- there's always tomorrow! And whilst we constantly need to know what time it is throughout the day, it suddenly occurs to me that time actually rules your life.   The Greeks have little concept of tim

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Time

Little One is right. I work too much. Either that or there aren't enough hours in the days. I am constantly playing catch up, at home and at work and with sleep. How nice it would be to be able to stop the clock while I caught up on everything. But if I could do that, then why don't I just materialize a clone?   Why not for every hour we work, we get an hour of free time? Bliss time - time to do whatever we want to do, not what we need to do. In a perfect world... With my hours I would

barefut

barefut

 

Counting Calories!

Well with the Dietician's visit over with, I can relax a little in the confidence of knowing that she wasn't too scornful but quite concerned none-the-less! It seems my problem is quite common in people with enteral feeding. In her assumption I'm still quite a young person who should still have an active part in society -- you can probably see why I like her so much! She fully understands my duty as a Wife, Mother and Daughter's role in the family network and that my backpack gets in the way of

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The Dietician's Visit

The phone rang this morning and a familiar cheery voice greeted me. "Hi Barbara ---It's George." George is a girl in case you wondered. Short for Georgina and short for trouble! She's my dietician. Her visit is perhaps long overdue, mainly due to my disappearing tricks and the fact that she's been on maternity leave for the last 12 months.   I'm not going to say anything bad about George because if it wasn't for her, I wouldn't be here writing blogs today. I owe her a great debt. She was the

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