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
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
Okay Barb, do you want to stop making me cry now? :P
I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood.
Then there's my two subtypes of being a Parent:
With head in hands -- How will I cope?
No cure to be found -- no hope
What will I become, the future is bleak
A word I'm not sure of, even to speak
It hit me so hard like a runaway truck
It looked like my life had run out of luck
I closed my ears not wanting to hear
Couldn't even shed a tear!
Would this thing be my demise
No information before my eyes
A condition so vague, misunderstood
And I'd just started motherhood
I went away with heavy heart
Not knowing where to start
Y'know, Serena --- The hardest thing coping with a chronic illness is admitting to yourself that you're no longer the person you once were and the uncertainty. The saddest thing is knowing that your family feel the same!
My daughter grew up knowing mum wasn't like other mums. I spent so much time in and out of hospital that in her primary school years she was almost part of a one parent family! For most of her young life she never understood the full impact of the disease and kind of accepte
Barb, I just read your latest blog through streaming tears. It was beautiful and you have a beautiful daughter.
How timely too! This is the second time tonight I have been prompted to take a closer look at how scleroderma has affected my family.
No matter how hard I try to carry on as if scleroderma isn't a factor in my life, or in the lives of my boys, it is there. It will always be there and it does change their lives too because it changes the way I parent my children.
If I ha
The full impact of having a chronic illness and how it affects the family is never really discussed unless the need arises, or you find yourself in a situation where the conversation cannot be avoided.
My daughter attends college; her course work is Health and Social Care. She wants to be a nurse -- Why? I do not know. My father was a male nurse and although I have the utmost total respect for the profession, I still think it can be a thankless job these days! Never-the-less she has my suppo
Trying new recipes, I came across one on the net! ---- Irish Brack Tea Loaf! So with all good intent, I set myself up in the kitchen with the ingredients and a tingle of excitement. I love baking and I have the chance to show off my fayre this week as I've been asked to provide cakes for an upcoming charitable fund raiser. With scales at the ready, I began to weigh the flour, fruit and sugar.
My daughter sat in the front room occasionally screaming "What are you doing?" but I was engrossed i
Okay time to stop feeling sorry for myself -- sympathy bottle all out of contents! not that I got any of course! I'm still barking like our Jack Russell Terrier and when I kick off, so does the dog, geese and goats. It's comical -- you should hear it!
I was having a mad session when the coal merchant came. He avoided me like I had a medieval plague and I can't say I blame him. I've never seen him tip bags of coal as fast and in a way I was quite thankful that he left so abruptly. I wasn't f
Yea Barb, I know what you mean. Thank goodness I only travel to the concrete jungle, I don't have to live there. I am blessed to live in a paradise with only the weather to complain about (and the occasional rubber necking tourist when I'm in a hurry) I wouldn't mind being someone's bit of fluff either. :D Do I get Tarzan along with that title? But a bit of fluff I 'aint. More like a ton of lard.
Oh, you asked the significance of the Luke Skywalker cardboard cutout in my rheumatologist
This could quite easily be the beginning of a child's fantasy story.
I sniffled and coughed into the dragons den
I didn't know whether to run or hide right then
To face your nemesis when you don't feel great
When you have to go before it's too late
My name was called and I walked to the door
Took a deep breath and awaited the roar
I walked into the room with little hope
Was met with a woman and stethoscope
Her face seemed so gentle, but was it a fable
As she spun on her chair
I've had such problems with my internet connection that I'm not sure whether this will get through or not. I honestly think that if I hired a carrier pigeon, learned Morse code or wrote a hand written letter and posted it in a remote place -- it would get there faster than I'm able to post. So much for modern technology, eh!
It's been driving me mad, and with a heavy cold to boot, I'm not a happy bunny! I'm sniffling, coughing and feeling generally sorry for myself with little sympathy actu
Just reading Barefut's blog kind of makes me feel lucky that my journey did not involve practically swimming there, or trying to get through a concrete jungle like Tarzan's bit of fluff -- Jane! (not that I'm suggesting you live in a concrete jungle, or are anyone's bit of fluff) But you kind of know what I mean -- you need an endurance medal dear!
May I ask what Luke Skywalker's relevance was? I mean we have cardboard cut outs at the reception desk but they happen to be real! Actually now y
Barb, your 3 month checkups sound kind of like mine. A two and a half hour minimum, one way travel time, crossing 2 bodies of water, one by floating bridge that is usually open to submarine traffic every time I cross it and I must wait at least 1/2 hour. The other body of water crossed by ferry usually during commuter time. Then a treacherous hill climb through downtown traffic and dodging pedestrians running to beat the light. Finally to the top of the hill and into the parking garage. No s
Ahhh! Five thirty in the afternoon -- I'm all alone. It feels strange to be sat in total silence and solitude for once. The only audible sound is the clock ticking on the wall and the odd crackle from the fire. It's usually around this time of day that the family come home and the house is filled with the sound of my daughter hollering downstairs, "Muuumm! -- where's my slippers -- what's for dinner?"
My hubby requests a cup of tea, switches on the TV and then stretches out on the couch to
I'm fed up of hearing about the world's economy! Every time you switch on the TV, open a newspaper, listen to the radio or even eve's drop on a conversation at the local supermarket -- it's on everyone's lips, Recession! Doom and gloom it seems and a direct result of people's greed and needs to be better than the next man. It simply had to happen -- a timebomb waiting to explode -- the bubble burst and now we all have to pay for it!
I'm so glad that I retired from the rat race 5 years ago a
Oh! Barefut you are too kind
You leave my poetry well behind
I guess we have the very same wit
We both can write our little bit
I'm glad it's more then pain we share
Sisters in arms with much to bear
What have we got if not in text
What little ache will we have next
Life is like a box of chocs
I heard that somewhere on the box
I confess I know all your woe
And wish for us both, it would go
My neck is hard to move and twist
Won't swivvel like in the Excorcist!
Oh dear Barb what can I say?
Your poems always brighten my day. :D
You are so clever, you have such wit
Your writing you'd better never quit
I am so sorry you are feeling pain to the bone
I want to tell you, you are not alone.
My hips are rebelling going up the stairs
And my knees are screaming at the weight they must bear.
My shoulder too is giving me grief
When can we ever find some relief?
The pain has gone up my neck and down my arm
This dismobility is causing ala
My dietician called with concern
Was very surprised indeed to learn
I've been a very naughty girl
And it turned her head in a whirl
Her neat little plan - her regimen
Was first on my back then off again
You see it's not very easy carrying on my back
A black and unsightly feeding rucksack
You need the calories, and vitamins too
(And all she said I already knew!)
To miss your feeds in such a way
To go without almost every day
Is almost a timebomb waiting to blow
I hung my head a
Ouch! I grab my shoulder again
I rub away a little pain
What may be agony to other guys
Is just a nuisance, not my demise
You see I suffer many aches
A catalogue it surely makes
Whilst one bit aches beyond compare
My other pains are just not there!
My neck is stiff and hard to turn
A better stance I'll have to learn
Just for today I'll need to rest
Just while I'm not feeling my best
I hate this condition, don't want it no more
Even my knees are feeling sore
I'll get out my
My brain turned to mush at work with a balancing nightmare. If you work in banking or with numbers at all, I'm sure at one point or another you've experienced mushbrain. I was relieved to know that there is such a thing and that it was not just me.
One of my very understanding and sympathetic supervisors, bless her sweet soul, told me that mush brain is very real and that if you can remember your name when asked, or even understand the question, then you will recover quite nicely.
They say that the course of true love never runs smooth, well, after 19 years of marriage and almost 25 years of being together, I think I'm pretty much experienced in that game. And like it or not, it is a game and that's what I tried to tell my daughter who sat uncontrollably sobbing about the guy who texted her at 2am to say it was over!
What does a mother do when she sees the one thing she loves most of all in her life, upset, distraught and crying. I cradled my girl with tears in my eye
Making treacle toffee is not for me I guess
I always end up with an awful sticky mess
No matter how I make it - it's never a success
I have to say I'm beaten, can't make it I confess
My grandma had the knack, that I did not inherit
Never got the recipe so never gained the merit
It was always very edible, better than my mum's
Didn't need a trolley jack to prise apart your gums
My last attempt was fabled and went straight in the bin
Couldn't get it out the pan or even out the tin
The clock strikes 11. So far today I've manged to make gooey treacle toffee, Y'know the failed attempt that never sets, create a mound of washing up and leave work surfaces strewn in a sticky mess.
I don't know why I did it. You see I have this stupid desire to make perfect treacle toffee. I've made all manner of concoctions in my time, adding an array of ingredients each time different to the last but I never seem to get the mix right! My gran used to make the most perfect toffee, every tim
I wish I could be one of those persons who profess to enjoy rain pattering down and running in blobs down the window. I wish I could share the same energy when Gene Kelley danced so irritatingly perfect in Singing In The Rain! Since I can do neither, I may as well admit that I hate it with a vengeance and I wish it would stop!
I'm uncomfortably damp all over, getting a soaking each time I stick my head out of the door. I have to go out for fuel for the fire but the rain keeps me a prisoner i