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Surviving Single Parenting with Scleroderma

Posted by barefut in barefut impressions, 23 July 2014 · 29 views

These days you need only to scratch my surface to get a meltdown of grief. My 16 year old son 'moved out' of the house and in with his girlfriend and her mom and brother. I have failed him. Of course a lot of our angst is normal teenage stuff. And a lot of it is true that I have failed him. Disappointed him. Let him down. And not JUST me, his father and other people too but I am the one who matters most. I should have done better. And I'm not sure how much of it, if any I can blame on scleroderma.

I have failed him in the most disappointing way by not following through. Not keeping my word. He can't trust me now. I have to work hard to earn that back. I have to prove to him that his wants and needs are important to me too. I can only imagine his frustration when his many requests to go and get his driver's license fell upon deaf ears, over and over, for 8 months. And he had to keep hearing, "I can't afford it". I managed to get him through $475 driver's education class but cannot manage to help him get his driver's license?! Seriously - what is wrong with me? Am I afraid to let go?

Yes, even the minimum legal car insurance is expensive (and I am afraid to find out just how much!) but it should be doable, especially now that he has gotten his first job and can help out with it. And I have my little home businesses I can reignite.

Dragging my feet on him getting his license is just one example and it seems that all the ways in which I have disappointed him all have something to do with money - or rather our lack of it. And his frustration is not so much that he can't always have what he wants but that he has to live in a small town and with the social stigma of being 'poor'. He has drifted away from his lifelong friends who have loving, intact, 2 working parent families. This makes me sad.

I sometimes wonder if I should have started dating soon after my divorce. Maybe I could have found someone who could have been a loving father figure and been there for him when he was 8 or 10 years old and helped to support us and take care of us. And been there for me when I needed back up in my parenting. Dating NOW when my kids are older is just harder but that is a whole 'nother blog.

My son is a good kid. A really good kid. Everybody tells me so. He is smart, funny, compassionate, loyal, resilient and wise. He is perceptive and thinks things through and makes better decisions than I do at times. He is a good and loyal friend and he treats his girlfriend like a princess. I am so very proud of him and I hope he knows that. He has been through a lot of grief himself in his short 16 years here on earth and he deserves better from me and from the universe. I just hope that I have not lost him.

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Adjustable Horizons

Posted by Amanda Thorpe in Amanda Thorpe's Blog, 24 May 2014 · 219 views

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 choice, how we live with it is and remember it's not just ourselves but also those around us. When our lives were transformed by the life coach from Hades, it also reached its cold, clammy tentacles out to our beloved.

Now we may be think it impossible to live well when we're in pain, fatigued, debilitated, lost mobility, independence, perhaps a loss of material circumstances but based on my own experience and that of many others it is actually possible.

I have said a number of times before that life looks nothing like we thought it would but that's not necessarily a bad thing and this realisation is a good place to start from. If we are not prepared to let go of the hankering after our previously lives, to let go of grieving their loss, we're never going to get off the starting blocks. Now here's the thing, grief has to be respected, even when we move on there will still be times of reflection and unless we grieve we'll only achieve a false start. We have to hanker...we have to grieve...we have to move on!

Whether we "change expectations in line with ability" or "simplify" or "adjust horizons" we find our own way of living with scleroderma. Judging from the people I have met and the people I have encountered on the forums, we are managing to forge lives of quality, filled with much love and keen humour, still acutely honest about our predicament but determined to enjoy. Living our lives like this actually benefits us and of course those around us who, by association, have also been affected by scleroderma.

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Stumpy Fingers

Posted by CFMBabs in CFM Babs from Chorley FM, 21 February 2013 · 844 views

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 fingers, clumsy and unwilling to hit the right key, thank goodness for the "Backspace" button. How many times have I attempted to write a word that just keeps coming up with the wrong thing altogether, and that brings me to my phone Oh! the dreaded texting exercise. I have sent many a text that makes no sense what-so-ever.

"Hi Alan I gusse I wsont be in tofay, I hace too muvh to do"......Send!!

........Ping! with a little mailbox sign

"What? :/"

I usually ring him instead it's easier. My texts have been known to crack a smile on the straightest face. I have sent messages that I couldn't possibly post on here for fear of deletion from the site. My daughter despairs. She got me one of those stylus things that you touch the letter with in the hope it solved my dyslexic messages so that people could understand without having to ring me back! It worked for a time but I lost it and now it's back to stumpy fingers and non decipherable messages

I mentioned it in clinic that I am likely to get myself into trouble with my fingers and my somewhat rude or dysfunctional messages - they think I am in the wrong place, "The psychiatric Dept is that way my dear!" And yes I am such a fool, I make fun of myself to make light of a situation, that's me all over.

I joke that my fingers are perfect for making pastry. In fact my pastry though I say it myself is by far my greatest achievement in the kitchen, although I am pretty good at baking!
I used to be top of the class at school, it was almost embarrassing watching my cakes rise like I was inflating them with a bicycle pump. My friends, it's fair to say hated me, my teacher loved me. I was the model student from which she would take the credit and I would stand with a will to die of embarrassment at the final result.

I took to cake decorating too. I went to college and I will always remember the Mothers Day Cake, beautifully decorated like a woven basket with flowers all made of sugar and the foolish trick of putting it on the roof of my car whilst I got in and then forgot about it.

It fell off in the middle of the road about half a mile from the college to rapturous laughter from passers by. My work ruined and a flattened cake to boot. One of my many thousand disasters!

My stumpy fingers ended my love of cake decorating. It does ruin most of my everyday chores in fact. I hate loose change, shoelaces, buttons, threading a needle-impossible! Opening jars, milk cartons, zips, clasps, packaging, and text messages to name but a few.

And there goes my phone - text message. Let's see who I can upset today. My life is never dull?

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All fuelled up and nowhere to go!

Posted by Michael in Michael Thorpe's Blog, 02 December 2012 · 2,159 views

Most of us of a certain age would have been saddened by the recent death of one of my heroes, Neil Armstrong, the first man to have stepped on the surface of the moon. Heroes are hard to come by these days; they appear to be in short supply. If you were to ask people if they had a hero, someone they admire and respect, they would all give their personal take on the subject; after all we are so very uniquely different.

I think Neil Armstrong was a reluctant hero. He shunned his celebrity status, the limelight, wanting to be separate from the ‘man on the moon syndrome’ and get on with his everyday life. Facing the everyday mundane and challenges that scleroderma brings can help make heroes of us all, albeit reluctant, all fuelled up with nowhere to go. We may on occasions feel blasted into some kind of outer space experience, an orbit unknown to us, a whole series of circumstances, psychological trials and relational challenges.

As s therapist I have met many people who, for whatever reason, want to escape a relationship that causes them pain. Some have tried to escape into mood changing substances, some into new relationships and others into whatever takes their fancy. However most people want to just stop and take a look at their relationships, their behaviour and overcome, gain control and get on with living their lives. In my thinking this determination and tenacity makes them a hero, albeit a reluctant one.

Sometimes we need to hide emotionally, deny or minimise the impact scleroderma is having on ourselves and on our loved one. Seeing someone you love fighting to gain control over their body, feelings, mobility and environment can leave us feeling powerless. Sometimes we escape into work, activity, or nothingness, beyond the gravitational pull, floating into space for a time, anything rather than face the evitable loss, hurt and of course grief that follows on like an ugly sister. We recall past experiences, painless, fun times when we had dream as we wait patiently for that beauty which comes with acceptance, that acceptance of chronic illness and all it brings.

Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others. If we’re propitious we’ll maybe find another hero who will listen as we take this unexpected and unusual journey. Hero's after all are made not born, they tackle the problem to release the gifts and gifts can come in the shape of people, people just like you!

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Attack of the Porch Monster (Penny has retired from blogging. We wish her all the best.)

Posted by Penny in My Two Cents..., 29 April 2009 · 913 views

I live in a semi-rural setting, it used to be very rural until a few years ago when all of a sudden new housing developments started popping up like jack-in-the-boxes left and right, and there have always been a few feral cats running around.

There is one female in particular that always seems to somehow find a place to use as a nursery somewhere in my yard and not a year goes by that I am not trying to catch kittens, tame them, vaccinate them and find good homes for. Last year she chose a spot behind the shed for her broods, but my husband had stored some ladders there so this year she found a new spot, under my porch.

This is all well and good; the kittens will be a bit easier to catch and I might even be able to catch the mother if I play my cards right and get her vaccinated and maybe even spayed this time since the local shelters are having a free spay/neuter drive. (I have managed to catch her a few times in the past and sweet talked a vet into giving her rabies vaccines and so forth and this June she is due for her next rabies booster.)

No one asked Loki what he thought of this development, but I think that his opinion would be a veracious paw down after his recent interaction with Mama Cat.

It has been pretty hot the past few days and as a treat for Loki I went ahead and opened his pool early this year. I had gotten him one of those plastic kiddy wading pools with a slide last year and he loved it, dashing up the quick steps made out of paving blocks then skittering down the slide and pouncing around in the shallow water before scrambling back up the slide to lay down in the sun and dry off. He was full of quivering excitement as he watched me pull out his pool and give it a quick wipe down before filling it with the hose, dancing in circles then peering over the edge and barking at the swirling water as it filled.

He was so excited that he did not even notice that Mama Cat, his arch nemesis, was beside the porch watching him with feline disdain.

I turned off the hose and called Loki over to me then told him to go get his towel from the porch and with a happy yip he spun and dashed to the porch steps sliding to a startled stop at the sight that greeted him at the bottom of the steps.

There stood Mama Cat, her back at full arch, twisting slightly to the side as her tail puffed into a bristle, spitting at him and side hopping towards him. With a yelp, my brave little dog who has barked his fool head off at black bears and is not one bit afraid of dogs ten times his size, tucked tail and raced towards me eyes as big as saucers and screaming the entire way. Before I knew what was happening he had flung his little trembling body into my arms and was trying to bury himself under my shirt and me, being the supportive and loving doggy mom that I am, laughed like there was no tomorrow.

When hubby got home he was put to work placing lattice around the porch, leaving a small opening at the back, far away from the stairs, for Mama and brood to come and go but that does not give Loki any comfort at this time.

It is cooler today and the pool will not be used, which is just fine with Loki since he does not want to use the steps without an armed guard present. Mama Cat has not moved her brood, they are still under there and in a few weeks time there will be kittens staggering around and a few weeks after that I will hopefully have them inside in some old ferret cages teaching them that people can be very nice and preparing them for safe and comfortable homes. Loki knows the drills for baby kittens in the home and though he is not thrilled he does well with them and will even allow them to crawl over him and sleep next to him after they have tamed and have been vaccinated since interaction with dogs helps them adjust to a new home.

Right now, though Loki would give you a wary eye and whisper to you "Be careful of the porch - a monster lives there."



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