WHEN LIFE GIVES YOU LEMONS...

A writing prompt from a writing group I belong to really hit home this week.
"Do you have a mantra? If so what is it and how does it help you?"

"When life gives you lemons, make lemonade".

I first heard this phrase about ten years ago when I was in my early fourties. I thought it was kind of "cute" and remember writing it in big letters on my teacher's work pad so I could read it every day. In this way it became my mantra and a reminder to make the most out of life. At one stage I even had it plastered across the blackboard in my classroom, because I wanted my students to take it on board and not " drown" in the challenges life threw at them.

For about two years, that's all it was, a cute saying that I read on a daily basis but didn't really put into practice. At 42 this changed when I was diagnosed with breast cancer. Nothing was more " lemon" than this. As I grappled to deal with this life shattering incident, making lemonade was the farthest thing from my mind. I was too overwhelmed, too scared and too angry. Why me? I have kids, a loving husband, a great job. WHY ME?

Time is a great soother. I'm not even sure if that's a word! But, as weeks passed and decisions for a mastectomy and reconstruction where made, the clouds in my head started to dissipate. And I suppose that's when my lemonade making began because I made a new attitude and refused to be beaten by cancer. I came across all sorts of women in similar situations but vastly different outcomes. Women who had to wait for reconstruction for 2 years on the public health system, a woman who never followed up her test results and went from stage 1 to stage 3 in the months in took to catch up with her and a family friend who passed away after a valiant fight. I realised how lucky I was to have the best in medical treatment and to be able to have immediate reconstruction. It made me mentally tougher when I developed  gratitude.

When I returned to my teaching job, weeks later I realised I had a great platform which I needed to use. I told my story to my teenage students, males and females and even showed them ( over clothes of course), how to do a breast examination. I was inundated with questions and answering them helped me cope with my situation.

My health has not been great in my fourties and it was the following year after my breast cancer surgery that I had another lemonade moment. Being diagnosed with Cowden's syndrome (CS) knocked me for six. Not only did it explain so much but it made me so grateful that I'd had the mastectomy, because CS carries an 85% risk of breast cancer. If I hadn't gone to the doctor about my suspicions, the cancer and the other two spots discovered later, would not have been found till much later.

I read everything I could to inform me about CS. I joined two online international support groups and discovered others like myself. Then in my lemonade moment, realising that Australians had no support group just for Australians, I started my own. Cowden's syndrome- Australia accessed through Facebook now has fourty members who regularly share their stories and information that works for them, to a local audience. CS diagnosis made me feel so alone but finding others in Australia with the same condition helped me keep my head above water. Being able to help and be helped has been a lifesaver or should I say a big glass of lemonade.

When my eldest daughter became seriously ill I experienced lemons I never thought possible. Thoughts of making lemonade where the farthest from my mind as the horrible gut wrenching , heart breaking situation developed. She went through numerous life saving procedures in what were some dark, dark days.

And then in a visit to the shop SPOTLIGHT one day I came across this wall print.
It was like a slap across the face, a reminder to not let life get me down. My daughter refusing to be
defined by her condition was streaks ahead of me. I was drowning. At the suggestion of my sister, I
started writing and this blog was born. It's been a lifesaver for me because it's helped me spread the word about CS while helping me deal with not only my health issues but those of my daughter as well. She was later also diagnosed with CS.

The print takes pride of place on a wall in my lounge room. I read it every single day and it's a constant reminder in a life that will never be normal, to look for the positives and the good in every situation. I suppose it's a reminder to be grateful.

Till next time...xxx
ST

DEATH DUE TO SLEEPING

What is love?

Love is being awake at 11.42pm (because your husband is snoring) and not giving him a whack or slowly strangling him.

I reach for my iPad for company and distraction. The last thing I want is to be a criminal.
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Those of you who follow my blog regularly may remember that last November, after six weeks in hospital the husband and I arrived back home to find a catastrophe had occurred. While in the city undergoing treatment, a pipe had decided to burst in the ensuite bathroom ruining our vanity and tiles, the wooden floor in our bedroom and a host of personal belongings. Half of our house was flooded as a result.

Well, I'm pleased to be able to say that finally after three months of waiting, the renovations are finally finished and we are back in our bedroom. The relief is immense. I don't like mess and if you can imagine the contents of a bathroom, a bedroom and a walk in robe relocated elsewhere in the house, you might understand my relief. My house looks semi decent again.

On the health front another problem has arisen though I think this will be manageable. After losing so much weight my thyroid levels are all over the place as I am now taking too much thyroxine. Why is this a problem? Dr Google offered this:

"People who suffer from primary hyperthyroidism or take too much thyroid hormone report feeling anxious, jittery and irritable, and may suffer from insomnia and increased appetite. Tremors or trembling may become noticeable and bothersome as well. If excess thyroid hormone is taken over a longer time, weight loss may occur despite increased calorie consumption. Muscle weakness becomes more prominent, and you may feel fatigued. Hair loss and difficulty concentrating may also occur."
                                                                        www.livestrong.com

And that ladies and gentlemen sums up how I've been feeling lately. Fatigue gets a big tick. The other day my mother rang me about 2 pm and I fell asleep talking to her. After she called my name a number of times she sent me off for a nap. I'm 49 and still being sent to my room by my mother. Love it! On another day I had two naps before lunchtime AFTER having slept a whole night. So in one way I'm glad to have a possible reason, because the need to sleep is doing my head in.

Tremor is the third tick. I have always had what is called an "essential tremor" in my hands. I don't know why it's called that because the last thing it is, is essential. It makes holding a mug of hot liquid hard. Putting on makeup is a challenge and even using a computer keyboard is becoming harder and harder.

While I was in hospital they took me off my tremor meds as they didn't think they were essential (there's that word again). This didn't worry me much at the time because I didn't need to do much in there! But back at home things are different and I was starting to drop cups again. So I had no choice but to start the meds again. Hopefully the change in thyroxine will also do the trick as I am feeling quite debilitated.

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About one minute before I'm about to commit murder, sleeping, snoring beauty wakes to use the bathroom. Its 2.12am. I ask him nicely to turn over as the snoring is keeping me awake. He tells me that he wasn't snoring and how would I know because I'd been asleep.

He falls back to sleep and the racket starts up again. As I am now maniacal due to lack of sleep, I begin to consider ways to solve my dilemma. Somewhere in between choosing to smother him with a pillow or gag him, I fall asleep.

Time -  4am. 

Till next time...xxx
ST

 

COULD YOU HANDLE BEING ME?

Yesterday I came across the following meme: " You couldn't handle me even if I came with instructions". It stopped me in my tracks because it sums up my life perfectly.

Yesterday was Rare Diseases Day, a day world wide to specifically advocate for thousands of rare diseases. Cowden's syndrome ( which both my daughter and I have) is a rare disease and affects 1 in 200 000.

My condition is a chronic condition. It requires vigilance, constant intervention and frequent testing. It means you become a slave to a diary of appointments and become quite used to having to change both work and social life to accommodate the diary and the doctors. In my situation it means a lot of travel, as I live 460km from the capital city where the best of medical attention is available.

On the road again

A rare disease puts you under the scrutiny of others and not always in a good way. At the moment a tradesman is working in my house. He asked me why I wasn't at work today. Everyone asks me that. How do you explain the difficulty in holding down a job with regular hours, when you are in and out of hospital? How do you explain the embarrassment of asking for time off " yet again"? How do you explain that your body is slowly failing you and that sometimes standing on your feet and socializing with others for a whole day, is a massive strain? Generally people who only have to worry about colds and the odd flu just don't get it!

What everyone also doesn't get is having to advocate for yourself and in my case for my daughter as well. I've written about this before. Doctors can't be expected to know about every rare disease going. Some are quite OK about saying that and seek out information from the patient, who is usually a great source of information. Others take offence if you claim to know something they don't and this often leads to conflict and the attitude that " if I don't know about it, it probably isn't important.Yes it is. It's about me.

Another aspect of having a rare disease that many don't get, is the closeness you feel to people with the same condition you have. In most cases you are unlikely to ever meet these people and yet they become so important to you. Why? Because they get it, and they get you, in a way that others never will. And they provide support in a way that others never will, because they know. I remember years ago having an ovarian cancer scare and someone hearing that I was in a situation, came out with " oh what now!".  Yes, it was said in a tone which implied that I could possibly be making stuff up to get time off work. No empathy and no sympathy and soul destroying when your world is caving in. You don't get that from another " rare" person.

There was a great article doing the rounds yesterday. It questioned people who think Rare Diseases Day doesn't apply to them. It says quite eloquently that if you are or might one day be a parent or grandparent, if you work in a school or health care and if you simply have friends, then the day IS relevant to you. In the states, 1 in 10 Americans has a rare disease.

So, please take an interest because you never know what's round the corner. Support people living with a rare disease by listening and educating yourself on their conditions. If you are able to, attend fundraisers as there is much need for research in all conditions. Above all, thank God for your own health and never take it for granted.

Till next time...xxx

" WE LOVE RARE"

ST

A FUNNY STORY

Not feeling the best today. My body is feeling a little tired and run down and I need something to make me laugh. Cue this week's writing prompt from my writing group - " tell us a funny story". So, here I go. This is a post from back in 2013, soon after I started my blog. Maybe its funnier when you actually know my husband, but nevertheless it still remains one of  my most popular posts ever. Enjoy. I hope you get a laugh out of it.

NINJA VS THE HUSBAND

Its two weeks till we head back to the big city for the next round of doctors, hospitals and all that fun. In the meantime  I have been finding little jobs to keep myself entertained. Unfortunately these are not paid jobs, but just little tasks around the house that have needed doing for a while.

To start off I spent a while in the bathroom giving it a bit of a tidy up. To finish off the job I placed a fabulous air sanitiser on the shelf above the toilet. This contraption fascinates me. It is motion detected and puffs out vanilla scented air when it detects your presence at the toilet. I love it! The husband however did not.

You see he went about his business in the bathroom and got vanilla fragranced straight in the face. I heard the roar from the other side of the house and keeled over laughing when I found out what was wrong. I had forgotten a golden rule. Women sit but men stand. When he stormed out of the bathroom smelling a little better than when he went in, I decided to keep the peace and to move my vanilla scented ninja elsewhere. I moved it to the floor.

An hour later (he drinks a lot of water), the husband returned prepared for the attack.

However, while he carefully checked the shelf on top of the toilet, my nifty ninja zapped him from below. Again I heard a roar followed by " get rid of this bloody thing". I'm laughing as I write this. Its not going anywhere! Not only is it providing me with entertainment, my bathroom and husband smell amazing.

The poor man has been copping a lot lately. Yesterday I found a new app on my phone called WatchOn. In short, this app converts your phone to a remote control for your TV, DVD and air conditioner. It is the ultimate tool for the lazy.

Now I have been trying to convince the husband we need a new TV but he is not having a bar of any well thought out argument I present. His argument is a bit like his wardrobe. It doesn't need upgrading while its still wearable. So I thought I would use a new tactic to push my case (insert devious giggle).

While the husband was watching the news last night the TV mysteriously died a number of times. He looked around for the remotes and a kid to blame, but the remotes were near him on the table, and the kids therefore innocent of all charges. Each time the TV went off it soon re -started.The husband looked somewhat confused, so seizing the opportunity I launched into my " can we upgrade the TV now routine" and added for good measure " its obviously on its way out".

But, as usual I couldn't maintain a straight face for long and I started laughing. He saw my phone in my hand and twigged that somehow there was a connection. The kids were hysterical with laughter so the husband stormed out of the room...to the bathroom. The ninja having been inactive for its requisite 20 minutes, blasted him immediately. Another roar filled the house," I told you to get rid of this bloody thing".

Heehee I don't think so!




Does your husband provide YOU with so much entertainment?



Till next time...xxx
ST

LIFE GOES BY TOO FAST

I've recently joined a group where each week writing prompts are given. This week I've chosen the following - Life goes by too fast - agree or disagree?
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In a year where I am turning 50 I am becoming more and more aware of time passing by. Fifty seems to be life's half way mark and the point where you should review your life for purpose, success and meaning. This milestone is making me feel anxious. How can I possibly be turning 50? I haven't done enough yet!

I remember when I had my first child that someone said " enjoy every minute because they grow up before you know it". How true that was.  Now with two adult children, I have to remind myself that I did actually put two kids through school. I did worry about lunch boxes, uniforms and homework. And I did become totally involved in everything ranging from dancing lessons to music lessons to the school play. It all now seems like an eternity ago and it all seems to have passed too quickly. I'm not sure if I enjoyed every minute at the time, but I am aware, that part of my life passed in what seems like the blink of an eye.

Looking down a list of people I plan on inviting to my birthday celebration, I realise that I haven't seen some in years. You know what its like - "we'll catch up"- and then suddenly its 2 years, 10 years, 20 years! You get swallowed up in the day to day business of life and without knowing it, time just flies. It's not that these people mean less to you. It's more that there are only 24 hours in any given day and I tend to enjoy sleeping for some of those. I really love social media for its ability to connect you to people you haven't seen in a while. Life does go by too fast but I don't want to lose track of these people in my life.

I'm trying very hard to enjoy the moment in everything I do and not miss out on too many opportunities. Last year my sister and I went to see Rod Stewart in concert again. We love Rod Stewart and knowing he is getting on in years, we didn't want to lose the opportunity to see him one more time. Imagine looking at each other in our nursing home wishing we'd gone to that concert. Well, the rate at which life marches on, we were not risking it!

 I also enjoy eating good food, because life is too short to eat rubbish. Since my stomach surgery I especially enjoy nourishing my body with healthy stuff. However, life goes by too fast to not enjoy a bit of chocolate, drink some wine, travel and basically enjoy yourself. I don't want to wake up one day and say " I planned to do that and I ran out of time". There is no time like the present, money permitting of course, otherwise I'd be on a plane to Italy!

I recently bumped into somebody I had a run in with a few years ago. I haven't seen him since  and judging by his reaction to seeing me again, that suited him fine. In all honesty I'd forgotten about the incident and had moved on. Life goes by too fast to bear a grudge. Imagine going to your grave bearing a whole host of grudges. How unhealthy is that! No, I prefer to deal with it and move on and I would like to think this is a side effect of becoming older and wiser and...almost 50. (Sigh).

There are many other events which remind me that life goes by too fast. My almost two year old niece Isabella is sight reading words. (How is that possible? She's just been born.) My favourite eldest daughter is about to finish university. ( But, she just finished school!). And, on top of turning 50 this year, the husband and I are married 25 years. When you can remember every detail of your wedding day, its hard to fathom 25
years. Yes, life is certainly going by too fast.

My advice is to occasionally stop and take a breather and enjoy every moment you can. Life will always go by too fast, so enjoy what you can.And I'm going to stop feeling anxious about turning 50. As my mother would say, "it's just a number".


Do you think your life is going by too fast?

Till next time...xxx
ST

SORRY ST VALENTINE!

Today is Valentine's Day, a day of love, commercialism and feeling like the odd one out if you're not in a relationship. Of course that is up to individual interpretation these days. My daughter's friend Carolyn has been rambling on all week about her serious relationship with coffee. Each to his or her own I think. And then to the right, there was this gem from my daughter.

Anyway let's talk about this " love" business. The older I get the less I'm into chocolates, hearts and red and the more I'm into self love. Mind you ( a quick side track), I stood the husband in front of a florist yesterday and hinted heavily that for my 50th, a bouquet of red roses would be nice. He looked at the $100 price tag and choked. But I don't care. I am so worth it. You can keep your fattening chocolates , but flowers I'll have any day. 

                        

Back to self love. These days I'm becoming an expert, probably because my family and I have been through so much and I need all the self loving I can muster to keep myself out of the loony bin. Today I'm willing to share what I've discovered in the last few years and save you, the chocolate munching public a lot of time and angst.You can thank me later. I call this piece...

ITS NOT ABOUT THE CHOCOLATES

ITS ABOUT...

1. The sleep ins you can have followed by a quiet mug of coffee in an empty house.

2. A good book you can't put down; one which takes your mind off " stuff".

3. A manicure, a pedicure, your hair done, anything that focuses on you.

4. Ridding yourself of toxic friendships and people who only want you for what they can get out of you.

5. Good people who listen and act if you need them and do it time and time again if you need them a lot.

6. Being able to care for and love others and do good things without any expectation of reciprocation.

7. Having time to stand still, close your eyes and listen to the sounds around you.

8. Yummy food that nourishes your body - avocado, nuts, mangoes to name a few.

9.Time to reconnect with your spouse.

10. Giving in occasionally to avoid the stress of an argument.

11. Being grateful and trying to find some good in everything. (This can be hard).

12. Giving yourself technology free time to recharge your batteries.

                        

And this folks is what I think Valentines Day should be about - learning to love yourself more. Forget about the commercial side of this day and just work on your relationship with yourself.

Till next time..xxx

Go forth and love yourselves.

ST

THE PROBLEM WITH BLOGGING

I have to admit I'm having a moment. When I started blogging it was for two reasons. Firstly I wanted a way to spread the word about the condition called Cowden's syndrome and secondly I needed a healthy way to de- stress. I could have taken up drinking but as I am a very cheap drunk that would have been pointless. So writing it was.

But things have changed and I'm not sure how exactly. All I know is that I'm no longer getting the urge to write it down. My "go to" form of therapy is no longer working and that saddens me because for two and a half years this blog has been my salvation. But of late, writing and even talking about our health issues has become tiresome. And I suppose it's because there is always something wrong and because I'm tired of people only associating this family with poor health. We are so much more than this illness.

The other issue which constantly troubles me is my inability to write things down exactly as they happen.  You can't bitch or moan about medical personnel for fear of litigation. You can't rant or rave about services provided for fear of it getting back. And...you can't tell a story as it exactly happened for fear of being labelled as negative or being told to be positive.

So, my question is what's the point? Why not just keep a diary and write down WITH A PEN the whole truth and nothing but the truth. Bitch and moan to the pages in private. No litigation because no one will see anything, and the " positive thinkers" might go curl up and die somewhere, when they have nothing to feed off.

The reason I continue is because " it is what it is". Even if sometimes I can't write the whole story, it still paints a vivid picture of what life with a rare disease is like. And in my small way I see that as educating the masses, or at least those who read my blog. Maybe it might lead to patience, tolerance, understanding. Who knows?

Living with a rare disease is rough. Last week I accompanied my daughter to a check up. The results were great. The doctor even said some magical words which made me cry, " we are winning". Today a week later she had an incident which resulted in a short hospital stay and her father and I driving like mad to be with her. This is how it is with a chronic condition - one step forward, two steps back.

                                    February 29 is Rare Diseases Day world wide.

As Rare Diseases Day once more approaches, I want to take my hat off to the following people who make coping with my rare condition a bit easier. This list is in no way conclusive.

• A spouse who holds my head above water.
• A daughter who hugs.
• The support crew ( like my sister) who drop everything to help.
• The doctors who ring you with results because they know you're anxious.
• Nursing staff who always have a kind word and time to talk.
• Pathology staff who insert canulas first time.
• MRI staff who always have a blanket ready.
• A patient GP who always does his or her best to learn more about your condition.
• Kitchen staff who sneak you another biscuit.
• Receptionists with a friendly tone to their voice
• Employers who understand and send flowers.
• A mother who makes soup and other food because if you eat you'll get better

Till next time...xxx
ST