Excuse me, your ignorance is showing.

5 Mar

Excuse me, your ignorance is showing..

 

This link will take you to a blog post about the dilemma of pondering whether or not to correct someone’s faulty grammar (aka ignorance).

I “love” the memes, and endorse the blogger’s message.

Go, read, enjoy…

Rare Disease Day – 28February 

4 Mar

I’ve always been driven by positive stress. It has given me the drive to work my butt off in education, in supporting husband’s businesses, in parenting. Before I stopped teaching Secondary school, I’d start the year at about eight stone, but by school year’s end I’d be about six and a half to seven stone. I left teaching, commuted for three years to another city to study for an IT degree. Then the stress of finding no IT work in my home town, so into a lecture room at a tertiary institute, teaching IT. And throughout, stress.

On three separate occasions, I trip over nothing; on the last two occasion I break a toe (one in each foot). I put it down to clumsiness, or failing to take note of where I was stepping. One day in the supermarket, while searching the shelves for a particular product, starting at the bottom shelf and scanning each higher shelf for what I wanted, I realize that I’m feeling dizzy, and I fall back and down. Bang my head on the metal lower shelf behind me and dent it. I put that one down to being hungry.

Then comes the day when, as I walk through the kitchen to the dining room, intending to turn left into the lounge, my legs plant themselves and stiffen. I fall and cannot lift a foot to step in any direction to brace myself. Down I go, as straight as a powerpole, landing on and fracturing the neck of stem of the hip. Hubby just at that moment pulls up in the back yard and cuts the motor. He hears me go down and rushes to raise me. I scream in pain, and he realizes it’s Ambulance time.

At the hospital they ignore my description of freezing in place (they ask hubby do I drink during the day!). They replace the hip joint, and next morning ask me to leave the bed and walk, propping on a high frame. I feel like screaming, it is so sore. My legs are trembling, but I am told not to be so stupid and get on my feet and walk. Repeat later in the day.

The next day, repeat – this time hubby is with me. I tell him “I don’t care what they say, it feels as if it’s still broken!” My stress level is in the clouds by now, I am so scared to try and stand, let alone walk. But I do, and my legs stiffen and my feet root themselves to the floor.

I am sent for another x-Ray which reveals that, as typical are men, they have rammed home the stem of the replacement too hard, and have split the femur another six inches. Another replacement, and an extra feature- a spiraling wire to hold the femur together. As I come around, and they explain, stress again.

Next day, back to try the walker. I ask for the waist-high one with handles, and after arguing, they allow me that. I start to manage walking.

But the stress of the actual fracture and operations now has become anxiety, and I am stiffening up, hunching down into a near foetal position over the walker. By day’s end, I am having shaking spasms, as I try to walk, and as I lie in bed.

The tremors and spasms worsen over the next few days. The ward doctor doses me up with biodiazepines, and eventually they send me home to recover from the hip fracture.

But the spasms continue, and and I have episodes of such extreme stiffness I cannot speak, not move willingly, nor control spasmic movements of my arms, flailing beyond my control. Sometimes I black out.

I get taken to A & E, by either hubby or an ambulance. When hubby has to take me, he’s alone, and has to use a forearm to hit me across the groin to make me bend, to sit on the car seat. As I spasm into a stiff log, he has to swivel me around to face forwards, and again hit me, this time in back of the knees so my feet will get into the car.

At A & E they leave me in a bed, barriers up for me to hold onto (I am terrified I am going to fall off the side), with or without a sedative – according to the mood of the staff of the moment. They send me home as soon as they feel I am back in control.

As soon as I have to put a foot to the floor, back into spasm I go. I am yelled at, cursed (once), and grumped about, but ignored. Hubby is ordered to take me home, no matter what. On two occasions they refuse to allow us a wheel chair to the car.

On one day at home, my daughter came to visit at about midday. She found me in full spasm, and spent three hours sitting on my bed, watching me, and whenever I black out, she breathes for me. No phone within reach, and she’s too scared to leave the room.

Hubby arrives home, relieves her, and I spasm again,

A few days later, with someone home, I spasm about four times. Each time the ambulance arrives, we decide that as the A & E only leave me to myself and send me home after a while, the Ambos won’t bother taking me to hospital. On their fifth call out, the darling Ambos call my doctor and describe how they have found me during the day. My doctor calls A&E and demands they admit me to the Medical/Surgical Ward, so at last I am admitted.

Not good news as at first thought. The Ward Doctor has no idea of where to start with a diagnosis, what to consider as a cause. He refers me to Psychology. Their two leading staff come to my room, and find me asleep. I don’t respond to any stimulus so they sit beside me as I sleep.

Suddenly, I am six inches above the mattress! A full spasm, unable to breathe, arms flailing, unable to speak, all abductors and adductors in full tension. I’m arching – my heels and back of my head are all that are on the mattress. As they said, psychological conditions don’t eventuate from a dead sleep. It’s Neurological.

So I’m off to Wellington for MRI, x-Ray, and CAT scans. As I complete the last, the nurse who travelled with me assists me to the toilet, and as my bare feet touch the floor, I’m away – full spasm, face down over the loo pan. Luckily, before I’d used it.

Nurse calls the neurologist and others come too, and watch this weird manifestation of … What?

When I come to again, I’m back in the consult room.The lead Neurologist comes into the consult room, and does the physical manipulation tests all over again. They draw blood and send it off. And they diagnose Stiff Person’s Syndrome.

The cocktail of Meds is changed, and this time I do improve. After weeks, I leave the hospital dependent on hubby and home-help to shower, dress, toilet, prepare a cup of tea. Hubby copes as well as he can. My youngest daughter helps him and me.

With physiotherapy, I manage to learn to walk, but only around the block at first, and with a walker. One barking dog and I’m back to curling over Ito the near foetal position over the walking frame. A therapist walks with me, and she too admits that dog scares the b’jasus out of her. I graduate to walking around the block and to the corner store. One day, after turning the corner having  passed the place with the dog, I hear a screech of brakes, a squealing yelp, and silence. The dog had leapt over the fence, and been run down. Does anyone blame me for feeling … absolutely nothing for that dog. I return to the driver’s seat, and drive myself to supermarkets, parks…just for the sake of the independence.

Until another stress trigger. My son is involved in a major car crash, near fatal, at the other end of the island. He may be dead before we can get to him. But we make it, he makes it, and starts a long recovery. Hubby is with me, until his boss demands he return to work to compete end of academic year tasks. So I am on my own, crossing wide open spaces between family hostel and ward building, and worse, crossing third and fourth floor gangways from building to building, with glass balustrades. I walk the centre line, and feel the anxiety pulling me down into a crouch as I go.

Back home with a surprisingly, wonderfully recovered son, the stress takes over again. Back into the hospital for R & R. This time, knowing we would be relocating to a new city for hubby’s new position, the hospital give me a motorized hospital bed with air mattress, a bedside commode, a commode chair to get me to the shower, a tea trolley for trying to make snacks, bed pans, a leaning stool for propping as I try to work at the sink…who knows what else.

The movers shift everything in one day, setting up the hospital bed exactly in the best place possible – beside a garden view, and able to see and interact with family in the lounge, dining and kitchen.

But, the spasms become uncontrollable again. An ambulance takes me to the Rotorua hospital A&E, and when hubby tells them “it’s SPS” they don’t bat an eyelid. I’m in a four bed room, and the specialist arrives. He reads my meds list from the previous town, and asks (be prepared for asterisks) “What the f*** have they got you on this s*** for!” He tears up hubby’s list, sends a nurse straight to the pharmacy, and tells hubby to dump everything we’ve had me on up to now.

New meds, new understanding, new attitude from nursing staff. I leave the hospital with a supply of Fortisip – my spasms had made it impossible to eat solid food. Even the sight of a drinking straw coming at me would make me jerk backwards, and I’d be feeding the pillow or wall. My weight on final release was six and a half stone.

Since then, I have recovered weight (more than I really wanted), am able to walk distances, catch buses, and work at a desk job I created for myself. I do get pains in the back, tremors in legs when in bed, moments of dizziness if I forget my limitations and try to boogie, cramps in my calf muscles or toes.

But I have been so lucky compared to so many more SPSers. Yet, there are not “so many” more. There are so few of us, that one sufferer was able to place all FaceBook SPS group members onto a Google map. Thus I learned of someone living in a nearby city.

We are ONE IN A MILLION!

Researchers need funding to learn more about causes, positive identification, effective medication combinations, therapies and support funding.

We suffer. The range of manifestations of SPS is broad, and SPS accompanies or brings with it other syndromes, diseases and problems. There is no single cure or treatment. Medications alone helped me, and I helped myself with meditation and Tai Ch’i. Other SPSers face regular transfusions, stem cell transplants, or high and increasing dosages of medications without full release from their debilitating pain.

Our families suffer – some families split because of the strain of caring for a partner who is fine one day and gibbering, screaming, writhing in pain the next. Our children suffer – many miss out on sitting on a parent’s lap to read a story, or to tell a secret…or to have a moment of hugs. My elder daughter could only freeze in panic and withdraw without helping if I was in a spasm needing help.

Our friends suffer – what do they do if an SPSer goes down in front of them? What can they say? How can they understand the ups and downs from day to day? My friends see me at my current state and I know they have forgotten how only five years ago I was bed- and wheelchair-bound.

I am writing this at 9:00 pm on Saturday 28th in New Zealand time. Please publish, for the sake of this disease so rare you didn’t even have it in your list!

_______________________________________

This was originally written for Rare Diseases Day, in an Internet text box which was so small I couldn’t read back to correct errors. Until it was published at http://www.rarediseaseday.org/stories/5193 I had no idea how fatigue had affected my typing skills! Hence this corrected version, at last readable.

Please also realize that some details may be not in the correct time order. Brain outages can do that–foul up one’s memory. Thank you

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Brain Power – Programming Knowledge Management

16 Jan

In response to The Daily Post’s writing prompt: “Brain Power.”  Assuming we use only 10% of our brain, what would I do with the remaining 90% if I could get at it?

Well obviously I’d firstly spend a week or two smacking myself for not unlocking it twelve years ago. That’s when I needed it. I was studying a Bachelor’s in Applied Information Systems, and was becoming extremely frustrated as I was already well able to code in BASIC, LOGO & Atari’s PILOT. HTML was a doddle, SQL too. Java I “managed”.

Then after year two the degree was restructured to become Bachelor of Information & Communications Technology (applied), with an increased focus on networking and hardware. The fist year’s work in these was all I wanted. I did not want to be carrying around circuit testers, anti-static screwdrivers and straps.

My aim was to work for the end-user and client on Systems Analysis, Software Development, Web Design, User Training, Quality Control, and Business Information Systems. I was so keen on S.A. I was intending to travel to London for post-grad Systems Analysis qualifications after getting the degree.

But…

Big But…

The language interface for database building was an obscure reinvention of the wheel by engineers in NZ – Jade. The lecturer was at heart his own entrepreneur – working with Jade for commercial clients as a back-stop to lecturing. Not trained to teach adults or tertiary students. Wasted six weeks failing to convince us that using Pointers was necessary and easy to master.  After we all struggled to put together the exemplar, Then the prat informed us “Well, now you know about pointers, you will be able in future to recode any program using them so the pointer system is removed while retaining its functionality. Pointers are considered a redundant coding methodology, and not used in program creation any more.”

” SAY, WHA’?”  {Group Scream}

Damage done, self esteem drained, some of us discovered a new mental block to any coding. I failed his course.

IF ONLY then I had had that extra 80% brain power, he could not have thrown me off track. I would have been able to focus, master that freaking Jade, passed, moved on to third year coding, and carried on pursuing Systems Analysis and what I wanted to do.

And maybe I would not have just had to sit and read the first sentence in the last paragraph over and over, figuring out whether it should be “had” or “had had”.

In the meantime, hard coding was wanted in the industry, not people, team, client-based soft skills. My  BICT is now a dream while writing is a fall-back.

Or is that meant to be the other way around.

—  Dammit, I want my 90%!  —  Now!

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Throw a Dart – Win a Skill

14 Jan

In response to The Daily Post’s writing prompt: “I Got Skills
If I could choose to be a master (or mistress) of any skill in the world, which skill would I pick?


“Roll up! Roll up! Throw a Dart, pop a balloon, win a skill! A buck for three darts. Roll up – Ya gotta be in it to win it!”

Sheese, it is just like a sideshow game, yeh?

Every balloon on the backboard of the carnival of life’s side-show is labelled with a skill, and colour coded. Green, yellow, orange, red.

And all I have to do is pop one – One – to ensure I have or will master that balloon’s skill during this year.

Problem::I suck at darts. Give me a day with a bottle of social and confidence booster, a dart board and darts, and no one to distract me, and I’ll get my eye “in” and toss a perfect round. But, hand me darts and expect me to hit a balloon and I’m toast.

Thought to self :: “Aim.”

Question to self :: “Aim for what?”

Green balloons labelled with no new challenges: Teaching, compulsory and tertiary – no problem, and fun. Systems analysis – easy-peasy and fun. Information systems- ditto. Business administration, Book-keeping, Budgetting- ditto. Self-defence-ditto. Counseling- ditto. Reviewing books- ditto. Garden demolition, Landscape design, Interior design,  Reading, Performance reading, Elocution, Problem-solving…all ditto.

Yellow balloons labelled with skills I’m working on: Writing, Keeping particular Orchid species/varieties alive, Raising Kowhai seedlings to planting out stage, Ikebana, Drawing, Photography, Bodhran, Pool …

Orange balloons for skills I’ve attempted, but failed or lapsed: Baking, Knitting (by hand), Swimming (from age eight to thirteen), Tennis (at thirteen), Piano, Violin (twelve to fourteen), Singing (thirteen to sixteen, then as adult), Reading music (all time) …

Red balloons for skills I’ve had neither opportunity, budget nor courage for, only a fervent wish: Archery, Gunmanship- rifle and/or handgun, Search & Rescue, Flying (as in, as pilot), Sailing, Fishing, Horse riding, Rock Climbing, Roller skating/blading, Softball, Money-making …

“Come on lady, pick a balloon and aim for it. Every one’s a winner!”

Well, there is one other red balloon there. It’s label? “Living alone, self sufficient, and loving it”. Sure, if I gained that skill, that goal, that heaven, the only part of the world to benefit would be me.

But then aren’t new year resolutions for oneself?

So, Yeh. I’ll aim for that one. And if I miss but hit another, I still win, right?

2014 in review thanks to WordPress …

30 Dec

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 800 times in 2014. If it were a cable car, it would take about 13 trips to carry that many people.

Click here to see the complete report.

Getting Seasonal – sort of…

24 Dec

Daily Prompt for December 19

The holiday season: can’t get enough of it, or can’t wait for it all to be over already?
Has your attitude toward the end-of-year holidays changed over the years?


The “holiday season”? As in “holy-day season”? Well it’s a bit of a misnomer, isn’t it, no matter which.

“Holiday” as in a day for goofing off and playing around, enjoying company with family and friends, shouldn’t need a special season. Surely we can do that at any time of year.

And “holy-day” – well, that is debatable. It is Nothing to do with either the birth of Christ, nor with the stock market driven celebration of a coca-cola advertisement.

In case you’ve not noticed, the New Testament gives a couple of clear clues that the Northern hemisphere’s winter was not the season of Christ’s birth. Firstly – Joseph had to travel to Bethlehem with his wife (his property) to the town of his family/birth, for the Roman Empire’s census. Which would have been held in a warmer season, to ensure people could travel. Not in winter, when snows could cut off passes and prevent those who would be paying taxes to Rome from being counted. Secondly – think about where the angel found the shepherds – up in the hills. That only happened when the hills were covered with herbage for fodder – not in winter. Add to this that although there was no room any where for Joseph and Mary except for the stable, which ion winter would be full of cattle, goats or sheep. The stables were the ground floor, which in winter being full of animals would give off their body heat for the upper living areas.

So, nope, I cannot accept December as the correct month. Especially as we can also find that when Rome caught onto the fad of following the teachings of Christ, and realised it’s commercial worth to a Roman central church, they had to firstly convert the outlying nations of the value of conversion. So the Winter Solstice, the annual “heathen” midwinter festival, complete  with fire, yule logs, holly and ivy… that’ll do – call that Christ’s birthday!

Now I admit there was an historical record of a saint who on hearing of a man whose two daughters had no dowry and so would not be invited to wed, tossed two coins (gold, the legend says, so I’ll accept that for now – it’s what I grew up ‘knowing’) into the house. That was Saint Nicholas. Now whether he threw the coins down the chimney – a pretty amazing shot from the ground outside a house (which basketball player could do that, now) – or through an open window, or an open door – who knows or cares? It depends on who’s telling you the legend.

Saint Nickolas was known as Saint Nick (my church vicar used to shudder at that one – to him St Nick was the devil. I never did work out how come that.) or Sinter Klaus or other variations. He was depicted as wearing a green robe, with a hood, and carried a crook.

Cocalcola santa That “jolly fat man” with a white beard and hair, obese rather than fat,  wearing a red suit trimmed in white fur, black boots – “Hey. you guys! That  was a Coca-Cola advertisement!”

And from that advertisement came a host  of lairy legends.

He flies around the world in a night. Has any one mentioned this to Stephen  Hawkings? I’d bet he’d be quite amused!

He flies in a dirty great sleigh, pulled by a herd of reindeer. I know two who must laugh themselves silly at that one – Richard Branson, and David Attenborough!

He keeps a list of which children have been naughty since the last time he visited, and who’s been naughty. Has the dirty old man got fellas out perving at our kids all year? Maybe some of those child-sized elves who make all the toys – under contract to Mattel among others.

He comes down the chimney on christmas eve – so… his suit must be re-eally filthy by night’s end.

Worse – in some places he comes into the child’s bedroom!

He leaves gifts for children – whose parents have already bust a wallet buying all that’s on their child’s wishlist. Or what they can afford. How many young girls asked Chain Store Santa for a Barbie and he leaves them a clone or lookalike?

There was a time when a child hung a stocking on the mantelpiece over the fireplace. These days a flaming pillow case still isn’t big enough for what the greedy little beggars have begged for.

Now, I’ll admit – as a child, Xmas was a fearsomely lovely time. And I made it so for my own children. Until one spoiled it for the family by opening her gifts and moaning “Huh, is that all you got me”. That sort of took the fun out of it.

But we s2014-12-23 18.49.45till all come together as a family – just “because”. They live in three parts of the country, and once a year we see them together. All I ask of them is one photograph of the three of them side-by-side on the sofa – smiling, damn you – smiling!

We do the tree thing – but I cock a snoot at those who think it’s Christ’s birthday, religious, or want evergreen trees and holly berries, fake icicles and snow, a fecking star of  Bethlehem on the tree.

The tree is fake, and black. No lights. decorations are white (okay, fake silver) and red.

No cookies or milk set out for fatso. We’re all grown ups here. We buy a token of love for each other – and That is more than enough.

C H A L L E N G E – Try this “family-famed” fail – Velvet Cola Cake

6 Dec

We had moved up into the hills over our rural town (111 m (c.364 ft.) altitude),
to a station at c.330m (c. 1,1246 ft.) altitude.

The station is ringed (approximately); the arrow points to where our cottage was.

The station is ringed (approximately; the arrow points to where our cottage was.

It was a heck of a steep gravelled road uphill, but the cottage was great. Beside the road ran a stream, from which I could collect watercress. In some of the station’s paddocks we could collect mushrooms – buckets and buckets of them. Around the cottage in the fields were huge limestone boulders, and a patch of native bush which the station owner was replanting and tidying. And the gravel drive from which we turned off to our cottage carried on to the shearing shed and holding yards. A great early life for the first toddler.

 

The cookery book

The cookery book

With my favourite cooking book, and my fist toddler, I decided to try the recipe named in the title. I knew I had to let the cola go ‘flat’ before starting, but eventually the batter was in the cake pan and in the oven. Toddler and I pottered around washing up the bits and bobs we’d used, with him climbing down from the step stool periodically to look into the oven. When I heard a tentative “O-o-o-oh,” I figured it was time to see what he was seeing.

Hoh boy! Cake batter erupting up and out over the cake pan rim, dripping down through the oven racks and piling up in peaks on the oven floor.
The oven was switched off, and I did my best to console unhappy toddler who’d realised there’s be no nice cake.
But you know what? Once the oven was cold, and I lifted out the pans and tasted what was left, it tasted delish.

So off came the oven door, and toddler and I sat at the oven reaching in and snatching off the driblets and piles of batter, and it was like sharing a bowl of sweet snack food! He learned really early the difference between stalactites and stalagmites (the former have to hold ‘tight’ or they’ll fall, the latter ‘might’ grow up to the roof).

I figured out what had happened…– being c. 900 ft.+ higher, things boil at a lower temperature than down in the town. Even jam could boil madly and never reach setting temperature!

So… my challenge is, for You to have a go at this recipe. Tell me what I need to know: just how ‘flat’ does the ‘flat’ cola have to be?

THE Recipe

THE Recipe

 

 

 

 

Sarah Warburton

-all beautiful golden sunflowers inside-Allen Ginsberg

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