Jump to content
Sclero Forums

Blogs

Featured Entries

  • 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
    • 0 comments
    • 301 views
  • 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
    • 0 comments
    • 313 views
 

My Scleroderma Diagnosis Story

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

barefut

barefut

 

Helpful Tips for Battling Depression

It seems like chronic illness and depression go hand in hand.  As if we don't have  enough on our plates, chronic pain exacerbates depression and depression exacerbates chronic pain. It's a vicious circle that's hard to get out of.    I was diagnosed with major depression when I was 19 and have been on and off (mostly on) antidepressants most of my life - especially after my systemic sclerosis diagnosis in 2006.    Major depression isn't something we can wish away with 'mind

barefut

barefut

 

Just for Today

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

barefut

barefut

 

June 13, 2018

I awaken and for the 3-4th time, it takes me at least 30 seconds to get my head straight and realize I am not in my room at the home I grew up in.  As the fog lifts from my sluggish brain, my dream comes shooting back to me in bits and pieces - different dream but same place and same theme as always. Maybe I should mention that to my therapist?   Gauging from the light and the weather outside, I guess it's probably 5:23 am.  I look at my phone, it's 5:25. I'm never more than 10 minutes o

barefut

barefut

 

I'm Back - Again - Update on Me.

Hello Scleropeeps,   I've been away from the site for awhile, trying to pretend I have a normal (healthy) life I guess. It worked for a little while. I was feeling pretty good physically, was staying busy, felt like I had a purpose and was able to push through the bad days. These days, not so much.  I've been battling my depression again. It has slapped me down hard this time - harder than I have ever felt it before. Every day is a struggle to get out of bed. BUT I DID manage to get my

barefut

barefut

 

CRASH

...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all

Amanda Thorpe

Amanda Thorpe

 

Stages

There are stages we go through after diagnosis that go something like this:   1. Diagnosis 2. Shock 3. Denial 4. Adjustments 5. Proactivity 6. Gratitude 7. Acceptance 8. Peace   At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.   In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too

barefut

barefut

 

Sleep, eat, repeat!

The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.   To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summar

Amanda Thorpe

Amanda Thorpe

 

You like me...you really like me!

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 defeati

Amanda Thorpe

Amanda Thorpe

 

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

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

Amanda Thorpe

Amanda Thorpe

 

She's Baaaaaaaaaack!

Wow! Been awhile....   What's new with me? A teenage driver (and all the angst associated with it) A new (used) car (and all the angst associated with that). Dating (and you guessed it - more angst)   All angst aside, I have missed this place! I hope everyone is doing as well as can be expected. I am status quo for me :)   Need to do some reading and catching up and then will get back to you all with my usual wit and humor ;)   Spoons to all! XOXO Barefut

barefut

barefut

 

Adjustable Horizons

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

Amanda Thorpe

Amanda Thorpe

 

Benefit Review!

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 diag

Amanda Thorpe

Amanda Thorpe

 

Whose Hands Are These?

Hard dry skin that cracks and bleeds Sausage fingers do impede Whose hands are these That so betray me Stiff and clumsy Oh how they fray me And in the cold turn white then blue Not to mention painful too Whose hands are these I don't recognize Fingers swollen twice their size I lay them in my lap to rest Before I put them to another test

barefut

barefut

 

Scleropoetry

Telangiectasia are red My fingers are blue This disease feels like Always having the flu   Sometimes I do well Other times I do not It's not just my body My attitude is shot   So when I am angry And I don't give a care I come to this place For my feelings to share   I know I am safe here With my scleropeeps For they understand This awful disease

barefut

barefut

 

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

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

Amanda Thorpe

Amanda Thorpe

 

The Nurse and the 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

Amanda Thorpe

Amanda Thorpe

 

Stumpy Fingers

Did I ever mention how illiterate I am with computers? It's a surprise to all I imagine, that so much of my time is spent at a Radio Station which actually runs with nothing but computers! I am there at my desk looking all clever and like know what I'm doing -- It's a ruse!   I have spent hours writing stuff, from reports to emails, only to press the wrong button and it all magically disappears - how frustrating. I haven't the will to sit down and begin again. My heart sinks.   My stumpy fin

CFMBabs

CFMBabs

 

Fending off an Anxiety Attack

Contrary to what I know you all think of me, I don't have it all together. Nope, I'm not the calm, cool, collected supermom with all the answers that I appear to be. ;) But make no mistake! I USED to be! (if only in my mind). :rolleyes: That could be why I suffer from the occasional anxiety attack today. Just talked myself out of a full blown, chest crushing, hyperventalating, finger tingling, arm numbing, dizzying panic attack - well with a little help from my doctor's nurse, bless her he

barefut

barefut

 

Humor

"Humor is the sword with which I battle this disease" ~ Barbara Lowe   Whether you are battling a chronic illness or just life itself, humor is the sharpest, most effective weapon we have at our disposal. It's free, easy to use, you don't need a permit or any special training and you can't accidentally kill anyone with it (at least I don't think so). And the best part? You can open carry.   So where can we find this thing called humor? Well besides all of the obvious places like Comedy C

barefut

barefut

 

Ouch!

Woke up this morning - Ouch!! My back was staying put - I wanted to get up! Sciatica struck at 08.15 on Tuesday 29th January.   So my day begun like a Neanderthal, my knuckles almost dragging the floor. I needed to straighten up, least ways to make coffee which I desperately needed, my mouth like the inside of a Rabbit hutch.   Reaching for the jar of coffee with a little Argh! Just lifting the kettle for water did nothing to help my posture.   Cats gathered around my ankles assuming to be

CFMBabs

CFMBabs

 

Momma Used To Say

My Momma used to say, "just wait until you're old" When your back goes out more than you do and begin to feel the cold Back then her words were unheeded I was young, why should I care? I'm too far away from fifties, it was a lifetime till I was there.   I'd go outside in winter, build a snowman, cold hands would warm by the fire With feet so cold inside my boots and skimpy outdoor attire "You'll get chilblains" my mum used to cry, and then you'll get what for But those words meant nothin

CFMBabs

CFMBabs

 

Snow-Ma-Geddon

Snow they say!   Well it's certainly cold enough. The mere mention of the word and everyone buys bread- Why?   I'd wrestled with a wonky wheeled trolley all round the supermarket. I'd bumped. bruised, and bore the brunt of many a screwed up face and said "Sorry" more times than a child with a broken piece of China! I was worn out when I reached Checkout.   In front of me was a lady, you know the type. A busy little bee type who was keeping up with the cashier, throwing things into bags, bu

CFMBabs

CFMBabs

×
×
  • Create New...