YES, I'VE GOT NEWS

Hi Folks, 

Today I am putting in a plug for my first ever book which will be released digitally on August 31. This book means a lot to me because writing it has helped me keep my sanity during some very problematic years.

ONE LUMP OR TWO? is available for pre-order now by clicking the link below. Please consider supporting me and my efforts, to advocate for the genetic condition my daughter, some friends and I all live with. Cowden's syndrome is largely unknown and I hope in my small way to increase awareness of this condition.

Here is the very lengthy link :

http://www.amazon.com/gp/product/B011BBGHBW/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B011BBGHBW&linkCode=as2&tag=bktwtr1-20&linkId=BPDLETKJMB2IYCWW

 Now onto tonight's post:

Blogging has opened up many doors for me. Recently, I have had the privilege of writing for many online magazines which I have shared on my social media accounts. It gives me such a buzz to see someone else publish my work.

Another advantage of blogging are the friendships you make. When I started blogging, almost two years ago I never expected this and so it has come as a happy surprise two years down the track to find I now have so many new friends all over the world.

The first blogger I ever met from my home state of Western Australia was Jen from the blog Nanna's Wisdom. I was drawn to her wonderful, country style recipes and life and look forward to her posts and link parties every week.

This week I am delighted to be the guest blogger on Nanna's Wisdom. Please click on the link below to take you to this post and Jen's wonderful blog.I'm sure you will be signing up for regular updates too. Jen will in turn be my guest on this blog next week and i know she has something really interesting up her sleeve.

Enjoy and DON'T FORGET TO PRE - ORDER YOUR BOOK!!! 

         THANKS FOR HAVING ME JEN XXX

http://nannaswisdom.com/overwhelmitis-guest-post/

Till next time...xxx ST

DEFEATED

I know more than most that you get good days and you get bad days. I'm also old enough to know that a bad day will be followed by a good day and often vice versa. But what is new today is the feeling of complete and utter defeat. That feeling I'm unfamiliar with.

Today I'm throwing up my hands in defeat. I give up. And I can thank the medical profession for this, because today one of their own broke me.

Now you don't go to a mechanic and tell them how to fix your car, so you wouldn't go to a medical specialist and tell him how to fix you. But the mechanic listens when you tell him what's wrong with your car and what you think may have caused it. He doesn't dismiss your questions or your comments or pretend to know how to fix your sports car when he's not worked on one before. Not all medical practitioners do that. Somewhere along the line, some become overwhelmed by their own importance and forget that a basic tenet of the Hippocratic oath is to serve. "And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them." An overview of the oath is at http://news.bbc.co.uk/1/hi/7654432.stm if anyone would like to read about it.

Well here is a list of what harms me and has harmed me. Here is a list of what makes my load heavier than normal to carry:

1. When I come to some of you I'm scared. You harm me when your overbearing manner adds to my fear.
2. When I come to you and I need to share, and you cut me down you harm me again.
3. When you pre-judge my condition based on the extra weight I'm carrying this is an injustice.
4. When you're not sure about my condition, say so. I don't mind that you don't know. But I do know and I have some ideas to help you serve me to the best of your ability. If you don't let me do so, this again is an injustice.
5. When I have to pretty much raise my hand to speak, because your constant stream of words never ends, I feel belittled, humiliated and beaten.
6. When this condition sucks the life out of me and you drain what's left, I'm quite simply defeated.

The same doctor once said to me ( speaking about himself of course) that sleep is a good healer. Well I'm off to sleep and tomorrow I will re - group if I feel healed. At the moment I just feel defeated.

Till next time...xxx

PS - on the countdown till my first ever book is released. Please consider supporting me by clicking on the following link:

http://www.amazon.com/dp/B011BBGHBW/ref=cm_sw_r_fa_dp_7LfOvb1JR95NF

I'VE DONE IT, I'VE DONE IT, I'VE DONE IT!

The other day I sat looking at the manuscript for a book I spent ages writing but had just thrown aside in despair. The only publishers who were interested in it were either "dodgy" or wanted me to pay half the costs involved. Being a one income family, I could not justify spending the money to get my book published, even though I really wished I could, so I could have a hard copy and something to show for recent hard times.

If it were not for Ciara taking me to task ,I would never have finished the book in the first place and nor would I have sent it out to publishers. But I did and with no success on the publishing front, simply gave up. That is till this week when I remembered that "giving up" is not in my nature.


Suddenly the other day I thought, I can't afford to publish a hard copy but there is nothing stopping me publishing a digital copy. And thanks to #Amazon,  that's what I have done. It was a huge challenge and it took me about ten shots before I was pleased with the final upload. But I've done it. It's on Amazon for pre-order and will be released on Mark's birthday (31st August) OR when I have 100 pre-orders (what ever comes first!).

Now all I need is your support. Its not about the money otherwise it would be more than $2.99 USD and $4 AUD. What is driving me is the ability to advocate for those with Cowden's syndrome, a rare disease which both my daughter and I have and one which precious few people know about.

Having a rare disease brings significant challenges and God knows, the last two years especially have thrown them all at me. It's hard when doctors haven't heard of what you have, don't know how to treat you and sit back in disbelief when you are back with something new in a short time. It's hard holding down a job, paying bills and making ending meet. It's hard waiting for a time bomb to potentially explode.

But despite all this, most people I have encountered with Cowden's syndrome are as Australians say "real troopers". They are tough men, women and children and it is only fair and right I don't give up and give this a go.

IF YOU WISH TO PRE-ORDER A COPY, HERE IS THE LINK:

http://www.amazon.com/dp/B011BBGHBW

AND HERE IS THE BLURB THAT GOES WITH BOOK:

 I am an Australian wife, mother and teacher and I have Cowden's syndrome. This is a rare genetic condition which effects 1 in 200 000. Cowden's syndrome is caused by a damaged gene which usually controls cell growth. As the gene is faulty I grow tumours ( lumps) all the time and am at a higher risk than most for cancer. This is why my blog on social media is called " Chronicles of a Lumpy person". Writing the blog has helped me cope by sharing my story and the challenges I have faced in my life.
In 2013 another story unexpectedly unfolded when my daughter was diagnosed with a life threatening medical condition of her own. So far she has required 15 major procedures (including two craniotomies) in her brain. It is highly likely I have passed on the defective gene to her.
Dealing with my own condition is very hard but watching your child go through her own hell is heart breaking. I never imagined my story would unfold in this way and unfortunately we haven't seen the end yet.
I'm not a famous author, nor am I an expert in editing. I'm just a Mum on a journey to advocate for a very rare condition. Together with my daughter, I'm also on a mission to show that " giving up" gets you nowhere

 Till next time...xxx

LOSS

The last few weeks have been all about the word " loss".

Loss of children when they went back to the city.
Loss of dignity while on telephone to medical agencies (see previous post).
Loss of patience...subsequently regained.
Loss of friendship...ball is in someone's court.
Loss of time (aka a birthday).
And then there was the loss of someone I never knew personally, but a loss which has shaken Australia to its core - the murder of a well known football coach by his son, while on the drug Ice.

I will never ever understand what people gain from taking drugs which destroy on so many levels. Its bad enough taking drugs to keep you well, as I have to do, but to take non prescription medication knowing whats likely in it for you, I just don't get.

I don't get a lot of things.

Last night a friend and I went to see a concert by the runner up of the last Australian X Factor. This is a man whose voice is beyond fabulous and whose guitar skills are beyond fantastic. It was a concert we had both looked forward to for a long time.

The concert was a casual affair in a local pub and was mainly attended by people of my age group (40+). I know a pub concert involves drinking, but the lengths that some go to get totally and utterly smashed had me shaking my head. Really! Still! You're in your 40's and you're still drinking to obliterate yourself. Surely you've grown out of that phase by now? Obviously not.

I can forgive the few 18 year olds who are trying to grow up, even the annoying as hell one who I was sure was about to share his regurgitated drink on me soon. I can tolerate the girl of roughly the same age wearing a dress that no doubt doubles as a hanky (does she not have a mother?). But as I stood watching an obviously drugged and drunk woman of my age, sway uncontrollably all over the floor I felt nothing but pity for her. And the sad thing is she was not the only one.

Drugs and alcohol are killing our country.

We met a lovely woman last night who told us she had three children on ice. What an absolute tragedy, especially so because this is no longer unique. Its in the media continuously . A female friend who is a medical doctor told me recently that the vast majority of her drug patients are in the middle age bracket. That was obvious by the behaviour of some last night. It was so, so sad.

My younger daughter works at a major function centre in the city as an usher. She has often said that the "oldies" have worse behaviour than younger concert goers. As I picked her up from work one night, the evidence to back this up was obvious, with grown women my age vomiting in the bushes and semi - conscious lying on the footpath.

I seriously don't care if anyone thinks I am an old "fuddy duddy" because of what I am writing. I had 3 drinks last night - one non-alcoholic with dinner, one alcoholic during the concert and a water to re-hydrate - and I had a fabulous time. News flash -you can have a good time without copious amounts of alcohol!

I used to think that adults set the example for the young. I am wondering whether for my generation this is actually true. A lot of young people go through a drinking phase, but surely there comes a time when you need to grow the hell up. Its time that actually happened for some people...don't you think?

Rant over.

Till next time...xxx

MANNERS PLEASE

People have been commenting that I haven't been posting as regularly. In a way take that as good news because it means that nothing is going very wrong on the health front. Nothing is going very right either, but you know what I mean.

Today I had to deal with one of the issues that people with health challenges often have to deal with - paperwork. Ashton has been having treatment at the same hospital with the same medical team for two years. We choose for her to be treated as a private patient in a government hospital, not because it changes her treatment but because its our way of paying back. The government hospital get a financial kickback if you sign in as a private patient.

For two years there has been no problem. Then suddenly a paperwork war broke out regarding bills from hospital treatment in February this year. It has escalated and escalated in that time, with the company dealing with hospital accounts, Medicare, our private health insurer and ourselves all becoming involved. The company said we hadn't paid the bill. We said we had. You can just imagine the ensuing chaos and the embarrassment of letters outlining avenues they will be following if these bills are not paid yesterday.

What gets me is how easily people are ready to blame someone else. Accounts blamed us. Medicare blamed accounts. Private health blamed accounts and Medicare. And I felt like ripping my hair out. My daughter and I are meticulous in paying accounts. Why would this suddenly have changed?

The other thing that gets me is how rude people can be on the telephone. I can not understand what people gain from a surly tone over the phone and a manner bordering on rudeness. I just wish some of them would walk a day in my shoes and see how they would cope, dealing with rude people on top of everything else I have to cope with. I wish they could see how they are finally the straw that breaks the camel's back.

The mystery today was finally solved. It was a human error made on accounts behalf. Rather than apologising, the woman whose tone has made me cry said that she was curious which of her colleagues was responsible. She sounded nasty. I hope she finds it was herself and that it brings her down a peg or two.

There is never any call for treating people without the basics of decency. Those who do so while hiding behind a computer or a telephone are the worst of the lot.

Till next time...xxx

EXPECTATIONS VS REALITY (or why the hell does nothing I expect ever happen).

It's a week out of my 49th birthday and I'm not overly enthusiastic about the whole notion. Truth be known it's been a while since I was excited about any birthday, but less so this one. My mother would say " Pfft it's just a number" and yes that's quite true. But to me a birthday is a lot more. It's a yearly self assessment time. It's a taking " stock on where I'm at in life" time. It doesn't have to be, but to me there is no getting out of it because I like accountability. And a year out of 50, I think everyone needs accountability.

But where does one start and how does one work out "accountability"?

I'm a big fan of those letters that celebrities write to their sixteen year old selves. I find them amusing to say the least, because they show a clear division between expectation and reality. So...let's give this a go.

At age 16 I was just finishing school. Due to my "smart bum" migrant status I was the youngest in the year. I had a small set of good friends  who would drop everything to help me, if I needed it, even now. I wasn't popular but everyone knew me. I was the girl with the very long wog surname, which they all used to sing to the tune of the Mexican hat dance. I was loud and very naive with a reputation for sneezing 60 times in a row. I was a school goody goody, and was rewarded accordingly at valedictory with a prestigious school goody goody award. This earned me a place on the honour boards, and the right to tease my nieces about their need to aspire to my lofty heights.

Being the first child is always hard because parents are unskilled and learn parenting through you. I had a limited social life but somehow still managed to get my heart broken. I was self conscious, overweight and European hairy. When I look back on my photos at that age, I actually looked better than I thought I did. At my school one did not wear makeup. You could have tried, but the nuns and my mother would have scraped it off me, if I had money to buy it in the first place. I remember looking on in awe when a new girl in our final year, blatantly broke all the rules and wore a fully made up face every day. I ached to have her spunk.

Because it was expected of me and in reality I knew nothing else, I did my homework and a 16 year old's version of studying. I equated hard work with success and learnt a hard lesson when my leaving score was just above average. There would be no medicine for me, but I still got into a prestigious university and developed new ambitions which varied from the male sort to an actual career. I think deep down I assumed I would be a kept, rich woman, so it came as a shock to realise that in the real world, out of the security of an educational establishment, one has to work in a job of some description.

Jokingly I would wonder if I would be a butcher, a baker or a candlestick maker? I toyed with scientist, dentist and finally ( dismayed that my mega rich husband was yet to find me), settled on teacher. For the first time in my life I started achieving excellence. I was hooked but confused. Me...a teacher? I never saw myself as being a teacher.

I also never saw myself leaving the city and never for a moment thought my overly strict parents would allow it. But they did. Hell, they even drove me to my new home four and a half hours away and kicked me out of the nest. It felt odd but I was officially grown up and fending for myself.

Fast forward to today and my title of expectations versus reality.

I never expected to be a teacher but I did and I became a good one. I taught for 25 years and loved every minute of it. I never expected to continue to live in the country, but I did and 27 years later still call it home. I was brought up to believe I'd marry a doctor, a lawyer, a professional like my Dad. I was sort of right. I married a professional nice guy with a big heart and oodles of patience. He is an ex farmer still working in an industry related to farming. Me married to an ex farmer? Who would have thought it....I used to think all agriculture students at uni were closet weirdos and yet I married
one born and bred on the land, and love him to bits.

The one expectation that became reality was having children - two girls. For a while I was sad that I had no son. My husband being the only boy out of seven, needed a son. He needed to do boy things. I felt I had let him down and his family down as the family name would die out with my ineptitude. Such is life. You don't get to choose your kids unless you're operating out of a laboratory. They choose you.

While my children were growing up, I was accused by some of placing too high expectations on my children. Yes, apparently expecting kids to do well at school, finish extra courses you've paid for, have a conscience and an awareness of social justice AND have a life that did not involve drugs and alcohol was too harsh. ( insert loud raspberry noises).

Let's get back to the accountability part.

One of the few things I remember from university is Maslow's hierarchy of needs. For those who have no idea what I'm talking about, here's a diagram someone prepared earlier.

Here is the link if you are interested in pursuing this further . It's really interesting.

(http://www.simplypsychology.org/maslow.html

You can have expectations in life and you can work your way up Maslow's triangle, satisfying need after need. But reality has a habit of messing with this - illness, divorce, job loss etc can cause fluctuation between levels. 

My forties have been the worst years of my life due to severe health issues, career disruption and financial strain. Too say this was not on the expectation list as a naive 16 year old or a bumbling " what shall I do with my life" uni student is an understatement. Do I then put a cross on my accountability list? At the ripe old age of almost 49 my health is ****, my career is in tatters and money is a precious resource we are learning to stretch. Well I could load up on the crosses, but what's the point?

When I look at the triangle I am reminded that in reality I HAVE been to the top. I have accepted my 
life's challenges and I know I have skills to solve my problems. I may feel bad that my life feels so crappy, but it really isn't all bad.

So here's my accountability list:

• Physiological needs - mostly met. Sleep could be better but that's why God gave us doctors who prescribe drugs.

• Safety - apart from morality and property... in tatters.

• Rest of levels - not bad.

Real state of flux happening here! Time to get back to basics and concentrate on those safety issues. 

Moral of my story - I'm 49 and I grew up with expectations placed on me by others and by myself. Not many of those expectations have been met AND THAT'S OK because reality presented other situations I couldn't possibly have envisaged. Ten years ago this would have been the end of me, but at the ripe old age of almost 49, I've resigned myself to the fact that expectations and reality do not necessarily go hand in hand.

And I THINK I'm OK with that.

Till next time...xxx

Me - age 48 and 51 weeks

Article written for Blusky Collective, a fabulous new website which went live this week. Please check them out!
https://bluskycollective.wordpress.com/2015/06/26/459/

PLOT TWIST

In the middle of the night while I was wide awake staring at a dark ceiling, I remembered the above saying. It may have been brought on by a conversation I had with a friend who knows first hand what life is like with Cowdens syndrome. Or it may have been brought on by reaching saturation point in the last week. Whatever the reason, at 4am this morning I suddenly realised that I was at a plot twist.

Ashton came through her procedure well but only with minimal success. Does that even make sense? It's time to realise that with her condition it's two steps forward and one step back ...all the time. It's time to accept that's how it's going to be possibly forever. And it's time to put up with the plot twist and move on.

It's now been two years since she was first diagnosed. It seems like yesterday to me but it's not. Sixteen procedures down. Who would have thought that was on the cards but that's how it's been. The doctor is now going for a three monthly check. Each time he will decide what is next to do depending on how she presents. It's the medical version of being in limbo. I can't do limbo so it's time for a plot twist.

I have to admit that in the last two years I've waited for this all to be over and for life to get back to normal. I imagined going back to work at my school, in my old job with my colleagues and friends. I've imagined visiting my daughters in Perth for catch ups and social reasons. I've imagined earning my old salary again. 

But it's time to realise that part of my life is gone for good. Life as I knew it has changed and it's time for a plot twist. My psychologist will be so happy that I've finally come up with this all by myself ( sarcasm). She's only been telling me this for ages.

My friend said I need to re-invent myself. So at 4am realising she was right, I couldn't stop thinking...as what????

Surely this is my big chance. I need a job which is flexible hours where if I need to drop what I'm doing when my health or my daughter's health requires it, I can. I don't want community service because like everyone we have bills. So I need a job which earns money.

Aaaaaaaaaaaaaaaaa the frustration of it all. What to do?

So, ideas please folks. Here is what I have to offer...

• I have good oral and written skills and I have good ideas.
•  I'm organised
• I'm reasonably computer savvy
•  I have a personality and good communication skills

Surely, there is something out there for me to re- invent myself as.

Ideas appreciated. 

Till next time...xxx