Sunday, November 17, 2013

EnviroAir™ Giveaway!

The expenses can add up very quickly when there is a chronic illness involved in your life. We are very grateful that Ruby's medications are covered on the PBS, and her hospital care and clinic visits are covered under our healthcare system. 
But that's not where the care we provide ends. And there are lots of little things to consider that end up making quite a dint in the budget. This includes things like petrol money to the hospital, paying for necessary meds not covered not the PBS like vitamins laxatives and probiotics, and the bigger food bill that comes with having to eat a high fat but healthy diet.

And then there are the "extras". The things that aren't really necessities, but things that we would like to be able to provide for Ruby, in the interest of her health. These can include things like buying organic food, using complementary medicines and treatments, going to salt rooms, using devices around the home to improve air quality…the options are endless.

Of course, we can't do everything. It's a matter of prioritising. Some families simply can't afford it. If it was a choice between a nebuliser and a salt pod, then of course the nebuliser will win.

One of the "contraptions" that I do have, is the EnviroAir "Breathe Easy" machine, by Nature Direct.   Nature Direct offer a unique range of non-toxic, eco-friendly cleaning solutions and disinfectants created by nature.
I bought it after hearing great reviews from quite a few friends. Sometimes personal experiences are the best kind of recommendation! This machine is like a bowl of water with a fancy water filter swisher thing on top that "washes" the air. It comes with an all natural concentrate, that is added to the water. It purifies the air in your home by reducing allergens (including mould spores), bacteria, pollutants and odours.
I use it every day if I can, especially on days where the air quality is low. I can tell you from personal experience, that on days where there is backburning in the area, and we wake up to smokey air that finds its way inside, our Breathe Easy machine gets rid of the smell very quickly. It is not a humidifier that releases extra moisture into the air, which is important to look out for when CF is involved.

Breathe Easy Machine

So…here's the exciting part…we have very kindly been gifted an EnviroAir Breathe Easy, by Nature Direct, to give away to someone with Cystic Fibrosis! Entry is open Australia wide and is very easy. All you have to do is make sure you "like" the Team Ruby Facebook page, as well as the Nature Direct Facebook page, by using the fancy entry thingy below!
This give-away is only for people affected by CF, so only CF patients or carers are able to enter. We may require confirmation of this.

OMG…the lovely Rachael from Nature Direct has also just told me that the winner will get "The Works" pack as well! Now I am a bit jealous of the winner! Chemical-free cleaning, here we come! Rachael has also very kindly offered to hand deliver the prize to the winner if they live near her in Melbourne, to help them get the most out of it. 

The Works 

So please share this around so the people who need it have a chance to enter! 

a Rafflecopter giveaway

Our competition has now ended and I have randomly drawn a winner using Rafflecopter. A big congratulation goes to Shannon Devorsine! Thank you Shannon for entering, I hope you love your prize as much as I love my Breathe Easy machine xx A BIG thank you to Rachael from Nature Direct  for making this possible without any cost or conditions for us, it was a really kind thing to do. Please contact Rachael if you are ever wanting to learn more about any Nature Direct product.
This was fun, I hopeTeam Ruby can do another giveaway soon to help a CF family! Maybe a salt pod next time??

Saturday, October 5, 2013

Chest Rub for Respiratory

Ruby has got the whole smokers cough thing going on at the moment. Deep and chesty. The cough is a stand alone visitor. No runny nose, loss of appetite, fever, or anything else that would indicate a passing viral infection.

I was surprised that her sputum results were all clear. So the good news is, no nasty bugs making a home out of that mucus. The worrying part is, why is she coughing so much of this thick gunk? Why is she producing more than what her normal amount usually is, and what can I do to help her?

Apart form the normal treatments and physio she has, I could make an essential oils chest rub! Easy to do and much nicer than what you buy off the shelf, which normally contain chemicals such as petroleum.

I am making this rub using the essential oils blends, Thieves and RC

Thieves (also known as Oil of Thieves) has an interesting history. During the bubonic plague, spice merchants discovered a combination of spices that made them immune to the black death. The merchants use this knowledge, not to help people, but to help themselves. They made an oil from the spices, rubbed it on themselves, and then robbed the dying of their possessions.
Eventually they were caught, and traded the recipe for their lives. Doctors then used the oil in those strange looking beak masks as they treated the sick.

Oil of thieves is a mixture of cloves, cinnamon, lemon, eucalyptus and rosemary. It has a lovely warm scent, kind of like chai tea! Thieves oil is highly anti-infectious, anti-viral, anti-bacterialand antiseptic.

It is very strong and can only be used diluted (which we will be doing). The recommendation is to not use it on children under 2 .

The other oil I am using is a blend called RC. It does not have a colourful history like thieves, but is great for opening up the respiratory. It is a respiratory anti-inflammatory, is good for sinuses, asthma and allergies.  It oxygenates and expels mucus from the respiratory system. (It does not dry up the mucus.)
It contains different species of eucalyptus, peppermint, pine, lavender, cypress and marjoram. Not to be used in children under 18 months.

The only other ingredient needed is coconut oil! Organic, cold pressed is best, but not necessary.


  • Heat 100g of coconut oil so it is a clear liquid. I have a Thermomix so just put it in there on 60 degrees for 2.5 minutes.
  • Carefully pour the oil into a small jar
  • Allow to slightly cool, but not enough to solidify again
  • Add 20 drops of RC oil and 7 drops of Thieves oil
  • Put the lid on and shake well
  • Let is solidify again

This is a mild blend because I am using it on a 3 year old. You could add more oil for an adult or bigger child.


Rub on the chest area and throat. Can also be rubbed on the soles of the feet. I put it on my kids feet before bed, and cover with socks. 
Don't use on children under 18 months. To keep the oils potent, make sure you store away from direct sunlight. 

So there you go! A history lesson and a chest rub that will help relieve a nasty cough while warding off infections.

If you would like to purchase the oils...
I have recently signed up as a distributor for Young Living Oils. I chose Young Living after researching how they make their oils, and because of the very high standard of production.
If you would like to purchase any oils, email me direct at

Sunday, September 1, 2013

Father's Day

It's Father's Day today!
What does fathers day signify for you? Personally, I think of how lucky my two girls are to have a loving, supportive, present dad in their life. To me, it's all about making memories that last a lifetime. Not necessarily particular events or holidays, but remembering feelings and emotions.
Memories of day-to-day activities fade as you get older, but how you feel about someone...that always stays with you.

I would like to share with you some things about my dad. All these little memories from childhood show me now just how lucky I am to have such an awesome man as a father.

I used to try and catch him but no matter how fast I ran, his long legs would always be just out of reach. He laughed as he ran which made me laugh, subsequently making it even harder to run

He read to me every night. Normally the same book over and over. He still uses the same reading voice when he reads to my children

He drove me everywhere. And I mean absolutely everywhere. For years. And he never once nagged about getting my licence.

He never swears. If he said "schwepps", you knew there was trouble.

I used to watch movies with him on the couch, using his tummy as a pillow. I remember the gurgle sounds.

At softball, his cheer cry was "Keep your eye on the pill, or you'll be the dill! (Yes, really)

One of my earliest memories of my dad was watching him mow the lawn out the front. We lived in Perth so I must have been no older than four. It was a really hot day and an old man who was walking past sat on our little fence for a rest. Dad went and got him a big glass of water and the man was obviously very appreciative.

Now, I may have remembered that story really wrong. But it doesn't matter. What matters is, how I saw my dad. He always was, and still is, a kind, genuine, gentle man with a good sense of humour, and has a great love for his family. I honestly can't remember many bad times (let's just ignore the teenage years), all I remember is love and laughter. And really, what better memories could there be?

Love you dad xx

Tuesday, August 13, 2013

You Have Mail

Received a letter today from clinic. It was a summary of Ruby's annual review. It didn't have anything in there that I didn't already know about the disease.

So why did it upset me so much?

Reading things on paper, in reports, in black and white can be so confronting.

I know that CF affects lungs, so why does it hurt to read words like "increase in hilar markings and interstitial markings in both lung fields".

I know that Ruby's fingers have changed shape and its not necessarily indicative of the severity of her disease. But it cuts deep to see the clubbing field marked as yes + .
And she loses points for these things! Yes, that's right, she receives a score in 4 different health categories. I've always hated tests. Especially when the results mean so much.

We do all the things we do to slow the progression of an unstoppable disease. Although we have our ups and downs, on the whole she is happy and active. The CF part of her is often invisible, it is an extension of her. Not necessarily in a negative way. It just is what it is.
As Ruby says when we call her nicknames, "I'm not (insert cute nickname here), I'm just Ruby Monster Superhero".

So emotionally, reading the facts and figures of Ruby's health, covering topics from nutrition to gut health, was a real kick in the guts. I'm not a medical professional, I'm a mother. And as a mother, it is hard reading about the issues your child faces.

On the other hand, I am so grateful that they sent us this report. It gives me more to look over, more to study, more information to digest. And although some of the results were less than perfect, it would be wrong of me to not feel grateful for all of the positives. Her weight was great, we got good feedback about the wholesome diet we have. Her CF overall is classified as "mild". We are going a good job! So many others have it so much worse.

I may sound over sensitive, but what I really am is scared. It scares the living crap out of me that this is a progressive disease. It scares the hell out of me that at only 3 years old, she is already declining in the one thing that is practically irreversible - lung health. It scares me that our next annual report could be very different. And then the one after that, then the one after that.

But we will keep fighting. We will never let our guard down. We will never give up or slow down.

Saturday, March 16, 2013

A is for Awareness

Our 65k 4 65 Roses walk finished just a few weeks ago and I have already gotten involved in another awareness activity for Cystic Fibrosis. People are going to start thinking that promoting CF is a favourite past time of mine! Well, believe me, it's not. So why dod I do it? Well, the obvious answer is because my youngest daughter has this disease. But that in itself is not the reason. There are a few other reasons why I pour my energy in making my community more CF aware.

One reason is, CF is a common disease that is not very well known. There are no major ad campaigns, no posters in shopping centres. It is not very well marketed. That sounds quite callous, I know. But the sad truth is, if you want to raise money and awareness for a cause, you have to sell it. I don't believe that this happens with CF. And why not? One baby every 4 days will be born with this disease. It has no cure. It is terminal. It is ruthless. It is everywhere.

The other reason is, awareness can lead to fundraising. The reason that most people with CF are now reaching adulthood is because of medical breakthroughs. Research into physio, medication, diet etc etc. But this doesn't come cheap. We are competing for your fundraising dollars and we want to show you exactly what you are buying us.
In Australia, Cystic Fibrosis is symbolised by a red rose.

Which leads to my next reason. Awareness is a sign of hope. A cure for CF is a future possibility. Fingers, toes and everything else crossed! We are not a lost cause! We are a cause with a light at the end of the tunnel, we want you to join us on this journey, and help us reach that goal, and share in the joy of curing this disease.

And finally, for me, a burden shared is a burden halved. Well, maybe not halved, but I do find it therapeutic. And, at this stage of our lives, I have the ability to share, and blog, and Facebook nd the rest of it. I'm sure a time will come where I don't want to write anything about CF, or Ruby doesn't want me to. There will come a time where I simply don't have time, or the mental energy. But for now, I can so I will. And when I can't I'm confident there will be someone else affected by CF doing it instead. We all take our turn.

So for the next 25 days, we will be bringing you The A-Z of Cystic Fibrosis. Today, for the letter A I have chosen AWARENESS so I'm going to leave you with some awareness campaigns from around the world. Because all over the world, we need a cure.

Eva's story is one of love and hope. Her journey of sickness and transplant was filmed and documented. You can learn more about Eva at

Cystic Fibrosis is also known as 65 Roses, due to young children not being able to pronounce it properly. The Wolverines have a famous song "65 Roses". It's very touching and explains a lot about having someone in the family with 65 roses.

TV Commercial for Cystic Fibrosis NZ, filmed entirely underwater - no computer tricks - all real, using NZ champion free divers. 

Monday, February 11, 2013

Operation Fatten Up

Maintaining a healthy weight can be a struggle for people with CF for a combination of reasons. Most people with CF are pancreatic insufficient, which means their body does not break down fats and protein. These people need to take digestive enzymes every time they eat. A high calorie diet is needed to counteract this mal-absorption. It's also needed as people with CF are working harder to breath than you or I. Simply living, burns more calories than average. And during periods of sickness, weight is easily lost., when it is needed the most.
There is a direct link between having a high BMI and being healthier overall. It wasn't until people with CF were told to have a high calorie diet, in conjunction with enzymes being used, that the a age life expectancy increased past teenage years.
All of this information puts stress on parents feeding their kids with CF. Suddenly "healthy" takes in a new meaning. In the early days, your baby is monitored, charted, weighed, measured so closely, you feel like you are raising a prize turkey.
During our visits with our dietician, I was interrogated with hundreds of questions. How much of this? How much salt? How much do you add to this? How much milk? How many poos? What colour/consistency? How long do you spend eating?"
If the dot on the graph drops below a certain point, then there are things to try. Polyjoule, pediasure, formula, appetite stimulants, Ensure, feeding tube. It's like a big black cloud hanging over you, waiting to rain at any time.

And then like everything else on my CF journey so far, I stop listening enough to do my own research and start thinking for myself. There is a whole world of good food out there. Why can't I use it? To be fair, our dieticians have always told us that a CF diet is not a free pass to junk food. But in my experience, healthy alternatives have not been widely suggested.

So the whole point of this entry is to share the following link with you. I started to post it on Team Ruby but waffled on do much, it passed "status length". The post is written by Jo at Quirky Cooking and is a wealth of knowledge about gaining weight in a healthy way. Because, to be brutally honest (as I always am), people with CF never used to have to worry about their health in old age. Getting to old age was beating the odds in itself. Now, people with CF are living past their 30's and overall health is so so important. That's hard to achieve if a high fat diet is a result of empty calories from McDs and KFC.
So if you want to get a bit if an idea on what "real" food is out there, read through this link:
Nourishing & Strengthening Foods . . . for those who are Underweight or Recovering from Illnesses

Oh, and did I mention I'm getting a Thermomix? It's my new weapon in my war against CF!