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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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  • 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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Queues!

I'm sick of queues -- The bank, shops, and car parks! Has no one got anything better to do than stand around or panic buy. I found myself trudging the market for jerusalem artichokes, finally finding them tucked away in an unlikely last resort high street shop. No doubt there will be a national shortage of carrots, brussel sprouts and gravy browning by next week and every frozen turkey replaced with empty spaces all because some folk think that if they can't get a fresh one, an old tough frozen

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Lights

Sorting out the attic was no easy job to do Things we never knew we had, things old and new The festive decorations in boxes full of dust And even poor old reindeer, it's horns were full of rust   The house was looking boring as all the others shone If we didn't get a move on the season will have gone And though the lights were working, they were in a tangled mess You'd need a degree in science or physics to straighten out no less!   My silly hairbrained hubby decided today to put them

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With a little help from my friends...and family

Well I managed to scavenge rides from people to get to and from work on Saturday and Monday. When my sweet neighbors saw me getting dropped off Monday evening, I got a call as soon as I got in the door:   "Are you a single mom in need of a vehicle?"   "Yes..... Why? Do you happen to have an extra one lying around?"   "Yes, we'll bring the Bronco over - why didn't you just ask?"   Why didn't I just ask? I did think of asking but couldn't bring myself to. It felt like I would be asking

barefut

barefut

 

Childhood Memories

Although winter holds a sense of dread for me, I can't help reminiscing of a time when the first snow was greeted with a degree of excitement -- I'm talking childhood and pre scleroderma!   My gran used to build the fire high and there was always a pot of something warm in the kitchen. I can see it now, clothes airing by the fire and the lovely warmth they provided as you slipped them on. The bread would be rising at the front of the fire too and the smell was, well just wow! I smile to myself

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Hugs for Serena

Oh Serena! How I hate those days and cars that don't behave. I guess they need TLC too, only difference is they can be fixed -- we, on the other hand can't.   I've had those days too so you're not on your own. I mean C'mon how many out there haven't. It must be hard holding down a job on top of everything else and that kind of makes me glad that I opted out of the rat race some years ago. Of course it's different for me I suppose, the salary comes in no matter what, even if my contribution wo

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I Cope?

It was a Friday and I had a meeting before bank hours at another branch in town. When I went to leave, 'ole Betsy wouldn't start. I hitched a ride with a co-worker as she was leaving. My co-worker let me borrow her car on my lunch break to see if I could get Betsy started. I couldn't. Still, I wasn't panicking. I was sure that my mechanic would be able to just wiggle something and away she would go. After all I had just spent $2500 on her in the last year, almost everything was new, what e

barefut

barefut

 

Paranoia!

With this condition you learn to become patient, like it or not! You become tolerant too with the old saying "Good comes to he who waits!" I was all that yesterday as I sat in our local hospital emergency dept. If there was going to be an annoying fellow individual then the odds were that she'd sit next to me-- She did! It was instantly obvious that she was a little drunk, well it was 2.30 in the afternoon and rather apt that I should be suffering with tooth -- hur-- tee don't you think?   No

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Toothache!

What a week so far, please don't tell me it's Friday. I've pretty much sat around all week feeling sorry for myself and doing little about it! May I ask what to do if you have the worst toothache imaginable and your dentist can't fit you in for an appointment? Well, I decided to ride it out but then hit another major problem -- my feeding tube is blocked.   So I contact the hospital who in turn can't see me until today (Friday) Meantime I'm pacing the floor at night with what feels like someon

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Just Manic!

There I go again -- me and my big mouth! I can't help myself from volunteering my services for almost anything. I've got myself into cooking 100 chicken drumsticks, 200 sausage rolls and 200 vol au vents! What for? you may ask! Well it's our annual radio presentation evening for which I've been nominated for an award. Don't jump for joy for me because it's nothing too special, in fact everyone at the station gets one and without sounding ungrateful, I suppose I'd be upset if I was the only one

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Give Me A Cushy Job!

I'm not going to complain today -- I'm beginning to sound like a grouch! I should be contented with everything I have rather than have not! and I should be thankful that my condition is not as worse as others and that is a very good thought!   I have been rather busy though. I remarked to a friend that I would probably be better off at work and she agreed remembering her own time at home! I do much more than would be expected of me. Maybe it's the amount of work I do that keeps me well or away

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Star!

I awoke to find a big yellow thing in the sky. It took me a moment to recognise it and I almost reported it as being a UFO. Of course after the initial shock, I was pleased to put it down to the sun, Y'know that big orange star in our galaxy -- I presume it's a star and not a planet, least ways it's a star to me whenever it makes an appearance! It made it's entrance today, right in time for the local market which was a complete wash out last week. I needed some material for a fancy dress that m

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Raynaud's Dance!

Rubbing my hands and stamping my feet -- no! I'm not doing a nursery rhyme dance but the Raynaud's Jig! I'd run on the spot but I'll give that a miss seeing as I'm stood right besides my car which is displaying a blue disabled badge -- what would the other drivers think of me:   "Oh yeah, bet those badges belong to someone else?"   Well I kind of wish they did and they can have this disease as well! I simply hate the cold but what choice do I have living on a rain soaked island that has for

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I Cope

As I lay in bed last night, I thought about coping. Kind of eerie how when I read Barb's last blog, the word cope kept popping up. Sometimes we seem to be on the same wave length. Then again, coping is a common thread amongst us sclerodermians so maybe I shouldn't read too much into it.   When I was a sophomore in high school I made myself and my best friend a T-shirt for gym class that said on the front, "That's okay" and on the back, "I Cope". I think people liked it. Teachers and peers

barefut

barefut

 

Give Me A Break!

Saturday morning already -- the weeks are just flying by. Soon it will be the end of the year and what do I have to show for it? We never did anything constructive this year, it hasn't been memorable in any way what-so-ever. In fact it's probably just an extension of last year and the year before that without any defining break.   The weather has been awful, my house is, well, still not a house, rather 4 rooms in a field, and there I go complaining again! I wonder how others would cope? If I

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Should I Just Scream!

Okay, enough about the exploits of my telephone problem -- I have much more to deal with than that if I put it in perspective! I awoke this morning feeling like I'd been hit by a double decker bus and then scraped up off the floor with a road sweeper's brush! All right that was a bit graphic and over the top but you know me?   My situation bears the fruit of no sympathy so I don't bother to mention that I had my head over the toilet for most of the day. It's like being pregnant all over again

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The Telephone Man!

My telephone infuriated me so I thought I'd write a rhyme The problem was it's ringing and couldn't get there in time I had to do a marathon to answer an important call But it just rang 5 times and that was it! --- that's all! I complained to the company who gave a silly excuse I told them 5 short rings for me were simply just no use So they told me there was a charge, one I thought was free My telephone bill is enormous without another fee!   For seven rings it will cost me ---- just

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Phone Misery!

Yes my head is ringing -- not with the sound of my telephone but with a rather disgusting response from my phone service provider. My last blog explained my position, but the events that led up to my complaint was much more intense than just 5 rings.   I was upstairs in the bathroom. The phone began to ring downstairs. I pulled my pants up, barged through the bathroom door, slid down the banister rail, threw open the French doors, leapt over the couch, hurdled over the table, jumped over the c

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Seven Rings -- Kerching!

I scratch my head in disbelief. I'm rubbing my head with red tape and a sense of pure idiocracy. Just read on .......   My telephone company, a nationally recognised business, and for integrity purposes I've been with them for as long as I can remember!   Well it all began today when for the umpteenth time it rings just 5 times before the answer messaging service kicks in. Now, unless I can run the London Marathon in record time -- I simply cannot get to the phone from the other side of the

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Mad House!

It seems Barb and I live parallel lives on opposite sides of the world. Only whereas Barb has a menagerie of animals making chaos for people, I have a menagerie of boys making chaos in my house.   Looks like a bomb went off in here. I look around and just want to cry. I could pick up and clean up and it would look good, for about a half an hour. I hate living in a mess. No matter how hard I try, I just can't relax in a messy house. It's depressing. Even more depressing when I don't have t

barefut

barefut

 

Smile For Raynaud's

Batten down the hatches, bring out the winter attire Put on the layers and move closer to the fire Don't go out in the wind and rain -- for sure a blue attack Before you've even got there you'll be wanting to come back   You'll be wanting to drink plenty - no ice or fizzy juice With fingers gone into spasm they won't be much use You'll curse your condition, how it spoils the fun you have And for a little spot of cuddling, your hubby will need Sat Nav!   You sit in an office waiting for

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Mad Farm!

I walked into a sad looking town this morning. My usual trip to the weekly market was just about as damp as the weather. I knew there wasn't the usual entourage because I got a disabled parking space without squabbling or fighting for the one nearest to the market place itself. Could this be the result of the credit crunch I ask myself?   Well the stalls looked very sparse. The little man who stands in the middle with his materials and cottons, hadn't bothered to turn up, which was rather disa

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Raynaud's Buddies

Why can't we hibernate? Seems to me like a very good idea and I might just do that! Some people just don't get it when it comes to how cold a person like me can feel. Sure I look like an Eskimo when I go out and always commandeer the seat next to the radiator. Everyone in the room looks relaxed, rosy and dressed for the occasion -- I'm blue, frumpy and look like I've been dragged in from the street in sympathy.   I hate the prospect of going out with new friends. I'm not antisocial although it

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Ahhh Sweet Solitude

A giant bowl of popcorn to go with my butter and salt, a glass of wine and the boys' leftover chocolate; who could ask for a better dinner? And I get to enjoy it in peace and without guilt while the boys are at the neighbor's house.   Adult indulgences -- so few and far between. I want to go to a grown-up movie, even if it's by myself. The last grown-up movie I saw in a theater was Jerry Maguire -- or was it the Fugitive? Either way, it was like 11+ years ago!   My co-worker's kids were

barefut

barefut

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