TEN TIPS FOR TACKLING TOUGH THINGS

Haha! Gotcha. You just HAD to know what the tough things were didn't you?

Ten tips for tackling health issues should be the name of this post, but I liked the play on the letter T and the fact that someone would just have to know what " things" I meant.

Anyway, in the last week two people have suggested that I write a post about what I have learned from being a professional/permanent patient. Its not something I ever thought of doing, but I'm going to give it a go.

Here are my 10 tips:

1. It is totally and utterly pointless trying to pretend that something is not wrong. No amount of positive thinking will remove that lump. No amount of friendly advice will help you urinate better. No magic cure exists out of fairyland and if you think you're in fairyland, I'm worried. If your brain is telling you something is wrong GO TO THE DOCTOR. A doctor is someone who has the letters M.D after their name and their MD stands for medical doctor. Everybody else is potentially a Major Dodo trying to make a quick buck. I don't have a problem with some alternative therapies but in most cases, conventional medicine is the way to go.
2.  It is OK to do your homework on Google, but I will bet any amount of money that within minutes, you will have diagnosed yourself with a major and/or terminal illness. Google is great on facts, but clinical diagnosis (ie what the doctor sees in front of him/her) PLUS years of experience is what will form their diagnosis. If you march in and announce you have TB for them to fix, rest assured they will probably be remembering everything they know about psychiatric medicine at that point. Let the doctors diagnose you. Do NOT diagnose yourself.
3. If you are worried about news you are going to receive TAKE SOMEBODY WITH YOU. I can not emphasis this highly enough. When I was diagnosed with breast cancer I went into
   
   shock and could not remember anything that was told to me. Ask them to repeat what they have said, if you can talk. Otherwise unless your support person is also in shock, they might be able to help you remember when you leave the surgery.
4. Last year, after a ten hour marathon on my daughter, the doctor rang at 11pm. Apart from the late hour, the first thing I latched onto was the happy tone in his voice. I have no idea what he said after my brain registered something was good and had to wait three more days for details. Put calls like this on speakerphone so between at least two of you, you can work out what he or she just said.
5. Ask for copies of all pathology results and any other results of procedures and keep them in chronological order somewhere safe. This is especially important for insurance purposes and for medical history. If like me your medical history is extensive, you will forget something and your file will help. I have a plastic sleeve in my file for my prescriptions and if I am travelling, I put the whole file in my case and off I go. You may want to have a separate file for bills you have paid.
6. If your GP sends you to a specialist, it is OK to ask for a second or third opinion if you are not overly happy with the first. You may not bond with the doctor. You may not be convinced of their expertise in the area of your problem. It is your call. Remember, in some cases time is urgent - be sensible. Taking months to find a doctor you like for an aggressive tumour removal is NOT a good idea. And remember, specialists often have waiting lists.
7. ASK FOR A QUOTE from a specialist. Find out in advance what this is going to cost you. If you have private health cover (Australia), is there a gap for you to pay? I recently swapped from one specialist to another because the gap I had to pay after medicare and private health cover, was unbelievably high. It amounted to a whole week's rent for my girls. Ask in advance when possible and let them know if you can't afford them. I have heard stories of doctors who take just medicare and private health cover payments, when their patients have told them IN ADVANCE that they can't afford the gap. If they don't wipe the gap, discuss it with your GP and maybe swap to someone else.
8. Many doctors now take bookings online so always check first if you are nervous about ringing up. If you have to ring up, be warned. Most medical receptionists sound like they did their training with the gestapo. In reality they are just barking at you because they are usually trying to organise the doctor's schedule so he can see you and everyone else, pick up his kids and take a family holiday. Be super nice to all medical receptionists because they ALWAYS remember you, when you ring up in tears and need an appointment yesterday.
9. If you are admitted to a public hospital ( again this is for Australia), you will inevitably be asked if you are a private health patient and if you would like to be admitted as one. The answer here is YES. This does not mean you will get a bill. It simply means that the government hospital can claim some money for themselves from your private health fund. You will not get any different treatment in a government hospital, to those who don't have private health cover. You MIGHT however get a single room if available and a bag of toiletries. If you are really, really sick you will probably get these anyway, so no big deal.
   
10. Private health cover does have its advantages. If you can afford it, you must look into it because some specialists do NOT operate in the government system. Oh and if people say you get better food in a private hospital, that's rubbish. In my lengthy experience, both systems are either as good or as bad as each other...it usually depends on the chef who is rostered on. Again from my experience, if you have particularly odd eating requirements, it might be a good idea for someone to bring your food in.  Oh and while we're on the subject of food, I heard a story recently about an elderly patient in a brand spanking new hospital who had no idea that he needed to order food from the ipad near his bed. He didn't even know what an ipad was. You guessed it - no food for 24 hours! Ask lots of questions when you go to hospital if you are the patient or family.

I could probably come up with another 10 tips, but that's all for now! Have a great week and I wish you all good health.

Till next time...xxx

BULLY ME BITCHES

I am 48 and I suffer from a rare genetic disorder that brings with it a fair dose of depression and anxiety. It may be about to get worse because I'm waiting to find out if I've passed the condition on to my daughter.

Some days are better than others. On a bad day I struggle to get out of bed and do basic tasks and I feel miserable that my life has been reduced to a struggle. But...I have trained myself to push through and on most occasions I succeed. I refuse to be beaten by my condition.

Yesterday was one of those days I was pushing through. I had to fill in some forms and decided to go into town, sit in the sunshine at a nice cafe and eat lunch, while filling out the forms. It was a positive thing to do; even though I was getting frustrated with myself because I have a hand tremor and filling out forms is not my forte, even on a good day.

Forms complete and sun shining I decided to walk for a while. Years of steroids, hormone treatments and inactivity from being unwell have not helped my weight. So when I can walk, I do.

It was a pleasant walk. In a country town there is always someone you stop to talk to. It was fun. I was getting some light exercise and my mood was lifting.

Then very suddenly it ended.

I passed two women, older than myself, who took a look at me walking past and said " you've got to be joking" and started laughing. I was gob smacked.

Was it my clothing? (black t- shirt and harem pants in a black geometric). Don't think so.
Was it my shoes? ( black with a bit of bling; doubt it).
Was it my hair? ( just coloured and cut and very normal).

It had to be the sight of an overweight woman walking.

This was blatant bullying and I'm totally and utterly pissed off by it.

Now, I don't give two hoots that they think the sight of a fat woman exercising is hilarious. That's their shit, not mine. What infuriates me is that this is the sort of behaviour you sometimes get from teenage girls. And I can see so clearly it's learned behaviour from older people who should know better.

Bully me bitches if you have to. But when you go and " tell" the story, I hope there are no young kids around who are being given the subtle "go ahead" to bully and take the piss out of someone their age. That " someone" may not have the resilience I've worked so hard to achieve. Consequences of bullying can be disastrous. Youth suicide is at an unacceptable rate in Australia and world wide. The only acceptable rate is 0%

It's time some adults started to set an example and grow up.

THE CONFUSION THAT IS BLOGGING

I have been having  a little break from my blog. Not because there is nothing to write about, but because I have been sick and everything has been too hard. I've actually been ill with normal people stuff - a gastro bug that even a week later is still making me feel a tad unwell.

Taking a break from writing gives you time to think and to reflect on certain issues, especially my blog. What do I see as the purpose of my blog? Where do I see it heading? Am I happy with the way it is at the moment?

I'll be honest. There have been times recently when I thought it was time to shut up shop. " Its run its course" I thought. But given time to think, I've realised quite a few things which I would like to share with you.

My life ( like anyone's) is full of diverse groups of people. Depending on the situation, the classification changes. Here is the classification for my blog. Can you work out which group you belong to?

1. THE FAITHFUL - those who know what you're going through because they've really been through it themselves. These people sometimes write very little if anything on your blog, but may send emoticons or virtual hugs as signs of support and speak to you at all hours of the day and night.
2.  THE CRITICS - these people tell me they used to read my blog but its too full of medical issues and it makes them sad and/or depressed. To these people I need to say " try living the life" and goodbye. I'm sorry I couldn't entertain you.
3. THE MOCKERS - These are the people who roll their eyes when something new is wrong and make me feel I've made it up or I'm on some sort of attention seeking mission. I'm also adding in here, those who say " oh go write a blog about it" in a sarcastic tone, when things are not going their way in an argument.
4.  THE PRIVACY MOB - those who constantly ask why I discuss my life on Facebook. I discuss it, because I have to for my sanity. YOU don't have to read it. You have choices and you can choose not to read my blog...but I will miss you.
5. THE BLOGGERS - those who read my blog because they fell over it in the blogosphere. They read it in hope that I will reciprocate and read their blog and I do. I read as many blogs as I can when I feel well. This last week not so many, but this coming week will see me out there again. Many of these bloggers leave me inspirational comments which makes getting through a hard day often easier.

The purpose of my blog has always been therapeutic. I feel some calmness when I can see my words on paper.For this reason alone I can not see me stopping yet. An additional purpose is to advocate for those with Cowden's Syndrome. Latest findings are that the condition may be much more prevalent than recently thought. Much more common than 1 in 200 000. Who knows what my words may spark in your lives? 

Where do I see this heading - well for the time being I am happy documenting my journey and that of my daughter's. At this stage we are still waiting for her Cowden's diagnosis. Mine is confirmed - well and truly.

Last Friday I was back in day surgery to have some strange growths removed from my abdomen and breast. Pretty sure they will be benign but there is always that doubt, once you have had a cancer diagnosis. Remember the nurse in a previous post who insisted on showing me my own tumour? She was back. When the doctor injected local anaesthetic into my breast he said "this one won't hurt". She looked perplexed so I piped up and said " because they're fake". She still looked bewildered so the doctor said " the real ones were trying to kill her". Love my doctor's wit.

And just before I sign off, I want to say that I have found another CS patient who lives in my state. That makes the total in our Australian group 35 and finally company in western australia. I hope the next member is not from much closer to home but if it is, we will deal with that too.

Till next time ...xxx

GERALDTON YOUTH - YES WE CAN

This week I thought I would adopt a project to help keep my feelings of depression at bay. I'm still not in a position to hold down a regular teaching job, but I thought maybe some community service may be helpful for me. It was hard to think of what I could realistically do, while constantly travelling between Geraldton and Perth, because if I could commit to regular hours I would be back in my job.

Then one night I had an idea after reading an outburst on a local social network site. There has been a lot of trouble in my town of late - break ins, car theft, damage of all sorts and assault. It seems to have increased significantly but the police say that there is really only a marginal increase in crime. They say social media reporting is spreading stories more quickly than ever before. Because of this more people are aware and it feels like we are living in a ghetto or a war zone.

I know there are problems in this town but I also feel that the people ( mainly youth) causing them are in the minority not the majority. I think there are so many good young people in this town who are doing great things and because of social media fanning the troubles, the young people doing the right things are being largely forgotten. It concerns me every time I return to Geraldton to hear our youth being spoken about so badly.

I worked as a teacher in this town from 1988-2013 and I raised both my daughters here. I think my teacher colleagues and I have done as good a job as possible with the youth of this town, often with limited resources, staffing, funding etc. I know many teachers who fund supplies for their classrooms from their own pockets to give kids the best.

And I think the kids in this town are the best. A lot of kids I have had the privilege of teaching have come from harsh backgrounds. Most have " come good" later in life. Most couldn't deal with school because of family and societal issues, but are having a go and playing their part in society now.

So, back to my project. It's a new facebook page called Geraldton Youth - yes we can. It's a celebration of the young people in this town who do great things and do them regularly. In the three days since I started this, we've had stories that range from kids with medical conditions who are attending school regardless, to new trainees in new jobs. We've had kids helping in the community and those giving excellent service in their place of work. We've even had two young entrepreneurs and their lemonade stall.

It's a new page. It may last a week, a month, a year. However long it lasts, its obvious from the responses I'm getting that people are worn out by the constant negativity in the local media  and uplifted by the simple, everyday stories of the good kids; the kids having a go and doing good things.

Let the police sort out the crime and by all means let's be involved in neighbourhood watch. But lets stop wallowing in all the bad stories and concentrate on the good for a while. No better place to start than with our kids.

Till next time...xxx

https://www.facebook.com/suzannaht/posts/10153056449505412

PLEASE HELP

This is not the sort of thing I would normally do, but just for this occasion I am making an exception. A young girl, one I got to know quite well when she was a student at the school I taught at, is in dire straits. Her bone cancer which resulted in an amputation last year, has re-appeared as what I presume are secondaries in her lungs.

There seems to be some possibility of treatment if her parents can get her to Germany. This requires $100 000 Australian to be possible. The town I live in is rallying behind young Suzy and her family. So far one fifth of the money needed has been raised in 24 hours, but the family is still a long way from their target.

She is 19 and while she lives, there is hope.

If you are in any way able to help, please consider doing so. Every small amount adds up.

http://www.gofundme.com/olr76whttp://www.gofundme.com/olr76w


\Till next time....xxx

FEMALE INSPIRATION

It was interesting to see all the media yesterday focus on International Women's Day. There were the accolades to women who deserve them ( Princess Diana, Angelina Jolie, Emma Watson etc )  and reading these accolades led to a very interesting discussion with my husband.

My husband is one of seven but is the only boy. He has grown up surrounded by women and is the father of two daughters himself. I was interested in which women he finds inspirational and I have to say his answers impressed me as they were not whom I thought he would choose.

His choices:

1. MalalaYousafzai- a Pakistani activist for female education and the youngest-ever Nobel Prize laureate. 
2. Julie Bishop -  Australian minister for foreign affairs



Dr Fiona Wood

3. Fiona Wood - Plastic surgeon specialising in burns victims 

This conversation obviously got me thinking about the women who had left a lasting impact on my life. I came up with a totally different list.

1. A nun at my school in Malta (name long forgotten) who taught my class about the importance of helping others and who made a big deal of us when my friends and I raised a tiny amount of money for a local orphanage. We would have been about seven and she brought the local priest in to compliment us.
2. A girl at the first school I attended in Sydney who sniggered at my intelligent answer to a teacher's question and fired in me a desire to do well always. She thought I was a dumb migrant. I thought she was dumb full stop.
3. My first piano teacher, a lady by the name of Pam Veary, who taught me to appreciate music.
4. My maths and Italian teachers at school - Jocelyn Quirke and Marina Chenaux - who also taught me to strive high and to " do as they said and not necessarily as they did".
5. My final teaching practicum supervisor Ms Hardacre who told me I would be a good teacher but not to burn out. ( she must have had a magic ball).

But there are other images that come to mind which remind me of the reality that my life is indeed one of privilege and one which requires service to others.

1. The women who worked in a carpet factory I visited in Tunisia . One caught my eye and smiled and when her supervisor wasn't watching I handed her some money. I have never seen money disappear down someone's shirt front so quickly.
2. A young 12 year old girl I met in Bali in 2010 who  melted my heart. She studied hard in the mornings and helped her parents selling postcards in the afternoon. I wish I had the ability to find her again.
3. Nina, a Balinese beauty therapist who despite her simple life, still reaches out and gives what she can to a young mother less girl in her village.
4. The homeless girl in Perth city. She looks like she's on drugs but she was also hungry and I cant stand seeing hungry kids. I bought her breakfast and she devoured it. Why do we have this problem in Perth?Why are our kids hungry?
5. +Ernie Dingo's mother who visited my classroom many years ago. She was one of the most mesmerising women I have ever met and she had my rowdy bunch of indigenous girls under control with one look. Moral of the story - family and keeping tabs on each other.

So, there you have it. That's my take on International women's day.  While we may give accolades to people who rightly deserve them, its important to remember there is so much more to be done in this world, where women are concerned.

Till next time...xxx

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KEEP DREAMING

I feel like I've neglected my blog in the last week but there has been so much going on I just haven't had the time. But, I'm back!

I can't believe that Ashton's 21 st party has come and gone. What a night it was! One hundred friends and family gathered together to celebrate my daughter's birthday. It was amazing.

First I have to show you the cake! Oh my goodness this was more than what we expected - stunning to look at , tasty ( caramel and chocolate layers) and those flowers were works of art. I am showing you the photo from the business page to give them a free plug! Thank you +Sugarplum Sweets . I couldn't think of anyone better than Flavia and her staff for all my cake needs. Don't even try arguing with me about cake not being a need until you've tasted their lemon meringue cupcakes. It's a need!

Now, I have to show you the birthday girl. It's hard to believe that two days before the party, she woke up on her actual birthday in hospital. It's hard to believe that she endured a six hour procedure three days before the party. Why is it hard to believe? Because she looked like this...

I love my gorgeous girl and I was so delighted to see how happy she was all evening. After everything she has been through ( and unfortunately will continue to go through), she thoroughly deserved her night and to be made a fuss of.

Here's a few more happy snaps for you to enjoy!

Ciara and boyfriend Joel

Ashton, me, Ciara and Mark

Pride and Joy

Heaven on a stand

Oh yeah! Did I forget to tell you we also had a macaron centrepiece also made by +SugarplumSweets - flavours were redskin, blueberry and white chocolate. My eight year old niece kept asking all night if it was time to have one yet?

 Finally got home to a Geraldton two days after the party, after having been away from home for almost three weeks. I thought the weekend had been great but one more good thing was about happen!

When I started this blog back in October 2013, it was all about me and my condition. It was a way of coping with a diagnosis which nobody had ever heard of. I never realised how much I had missed writing until I started blogging. 

Then it seemed that others enjoyed my writing despite the story line being sad at times. People started telling me to write a book and slowly I warmed to the idea. It took a while because the subject matter is so painful and so tender, but I eventually put a collection of my best blogs together and sent them off. Nobody was interested!

Around New Year, Ciara took me to task. She told me that if JK Rowling could get turned down
many times, who was I to give up after a couple. My interest re-ignited, but this time I spent ages writing the blogs in a story format. This is how I coped waiting for Ashton's February 6 appointment.

The first two replies where rejections - again! Then I received a letter from a publisher in the UK. They wanted to see more!

Its been a long time since I have been this excited about anything! This letter does not mean they will publish the book. It just means they want to see more. It means that a group of editors across the world in the UK, think I might have a story to tell and that I CAN WRITE! WOW!

Even if it doesn't get published I will always have this moment. If it does get published, seeing my name on a book will be a childhood dream come true!

Till next time....xxx