Tuesday, 25 December 2012

Merry Christmas

Dear Readers,
At this most special time of the year (my personal favourite time of the year!) I would like to wish you and your loved ones a very Merry and Lovely Christmas. Thank you so much for you support, I have been really touched by everybody who I have met along this journey. A little Christmas Message for you. xox

We were beyond delighted at the recent announcement that Kalydeco will be available to ALL G511D CF patients over the age of six, next month in England!! We anticipate hearing your remarkable stories, so very thrilled for you!!!
Here in Australia are about to embark on the same journey of government approval in the New Year, we hope to have the same success that our UK friends have had! Please please support our campaign by joining our facebook group Kalydeco for Australians. Share it, spread it, speak it!We need as much support as possible!!

My Christmas this year was such a different story to last year. We attended Mass, then spent a lovely day with Benjamin's family. A very special visitor came, Saint Nicholas (Grandpa Upston!) which completely delighted 12 little people (cousins)!!! Needless to say it was hectic... but so nice to be able to keep up and actually enjoy the day! I ate a full Christmas lunch; Turkey, gratin, french beans and carrots, Jamie Oliver's Brussels sprouts (yum!). Followed by Pudding and custard, trifle, cup cakes, plus an apple and apricot crumble made by our lovely 5 year old niece, Hannah (it was delicious!). The remarkable part of this story is that I was ABLE to eat it all!!! No problems... in fact I had to restrain myself for seconds of pudding! Best Christmas luncheon ever!!

Thank you, Kalydeco!!!

I leave you now on this special evening, with the carol that touches my heart so much. I have to hold back tears whenever I hear the words,
"A thrill of hope the weary world rejoices, For yonder breaks a new and glorious morn. Fall on your knees! Oh, hear the angel voices!"
It is a new dawn for Cystic Fibrosis sufferers. It is a Hope to our weary existence... and I Thank God I have live to see this day. May God Bless You and Yours and keep you always....

Merry Christmas! xox


Wednesday, 19 December 2012

Juicing for Cystic Fibrosis

As mentioned in my previous entry, I have always had juices growing up. Juicing is not just for 'weight loss' as it's generally promoted for. It really is a 'normalizer', balances out our bodies if we're sick, skinny, fat or whatever, it's just super good for you! I personally only noticed the huge difference juice can make to my health when I got serious about it at age 15. My parent's bought a fancy juicer and we arranged a weekly order at our local Organic Market of 20kg Carrots, 10kg Apples. To get cracking, I had 13 (8 ounce) cups a day. Ratio: 3/4 Carrots + 1/4 Apples. Later on I introduced a half a medium Beetroot.
(Note: Having CF I have always eaten, never fasted on juice alone, but this post is just about the Juice benefits...)

FAQ: How did this specifically help with my Cystic Fibrosis?

1. Carrots naturally contain high amounts of Vitamin A, which thins mucus. (Being from a vegetable, you can never over dose on this form of Vit A unlike it's synthetic counterparts)

2. Hydration is absolutely vital for the body, hydration helps move the mucus from all organs, including the lungs

3. By Juicing fresh & drinking within the day, the juice retains it's naturally occurring enzyme activity from the produce, therefore enhancing our bodies enzyme activity & assisting with elimination

4. Juicing the Veg & Fruit it means the quantity you can take in is an enormous amount more, hence more nutrients than if you had say a salad. Therefore helps malnutrition caused by CF is assisted

5. Juice is easy to digest making the nutritional benefits easier to absorb for compromised digestive systems

6. Juice oxygenates cells, increases oxygen blood levels

7. Promotes blood quality, normal blood pressure & production of healthy blood

8. Assists liver cleansing, detox the drugs!!

9. Helps regulate the intestinal track with hydrating, enzymes, fibre & clearing build up

10. Reduces (for me) the need for massive amounts of prescribed Enzymes

11. Increases energy levels

12. Has been know to assist with fertility by clearing excessive mucus & regulating hormones (worked for me!)

13. Assists to build a stronger immunity, making colds & flu less frequent

14. Assists in fighting bacterial infections

15. Reduces cholesterol build up in the arteries & heart (which is a big consideration with a high fat diet)

16. Improves Vitamin & Mineral levels

There are of course other great benefits to the whole body from juicing. I'm just stating all the CF connection that I've experienced from Juicing my way to better health. Asian medicine see the body as whole. You cannot just target symptoms endlessly, like the CF cough. The condition of your whole body, all it's organs, contributes to it's function. For instance, I've often noticed if my guts are no good, my cough is much worse. Vice versa. It's all connected!!

Albert Einstein aptly said,"The definition of insanity is doing the same thing over and over and expecting different results". I was going mad with the endless cycle of drugs and feeling ill all the time. That's how I saw it, if I wanted to have a different outcome to what the regular hospital recommends I needed to do something positive, proactive and additional for my general well being. I want to bounce back. I want to rebuild. I want to get stronger. I want to slow down the degeneration of CF. To do that we need to take responsibility for our health by making healthy choices. I know it can't fix the problem entirely, but at least by doing extra, more natural thing to assist my health, I know I've done everything I can for a better life. I'm pretty happy with the results thus far!

Please do feel free to contact me with any questions or please do let me know how (or if) juicing helped you. It would be a great New Years Resolution! I always love to hear your feedback and wish you all very good health! xo

Please note: I recommend you read/learn more about juicing before starting if you've never done it before. http://fatsickandnearlydead.com/ is a great place to begin! Note too that if you do chose begin to juice, you may feel a bit 'unwell' at first. It's very common to react that way whilst the body is cleaning out for the first time. People with CF may notice an increase of mucus, congestion, gut cramps whilst things get moving! This is a similar experience to Kalydeco in that it's helping clear it out mucus from all around the body. In this case I would suggest to take it slow, build up to bigger amounts of juice. Once past this initial stage, give it 30 days, most people begin to feel much better than before!

Tuesday, 18 December 2012

My CF Diet

In the next few posts I'm going to share and expand on my own experience with managing my CF. Having four children the way I have, plus managing my CF doesn't come easy. I've made a lot of life changes, created new habits, sacrificed a lot of time, money and put in 100% effort. That being said, it's certainly not impossible or too hard. It's simply the way you do things that make the difference. New habits can be created in 30 days (old ones can be broken in the same amount of time!) You do need a motivation of some sort, a goal. Plus you need will power to stick with it at first, much like starting to exercise. Over time you will reap the rewards.
"Get comfortable with being uncomfortable"
                                                                             ~ Jillian Michaels ~

Let's get it out there: Right now if you are eating the recommended "CF diet" prescribed to us by our dietitians at clinic (and I'm not even going to begin to look into the motivation of these suggestions) then you would be living on foods and drinks containing a lot of high saturated fat, high sugar, high flavours, colour, additives and preservatives, high (bad) salt, refined carbohydrates and not a whole lot of fresh whole foods... then you can assume at first you will not always enjoy the taste of the more natural foods that I eat. However I urge to to look closely into what I'm suggesting and think about how your body functions. It's a natural living breathing body, it's composed entirely of cells. It was never made to process all these new innovative 'foods' that have only been about since the industrial revolution. 1 in 2 Australian men will be diagnosed with cancer by the age of 85, 1 in 3 women. Why do you think? Why has is been on the rise and getting higher and higher all the time? It's not just a little too much sun! Since the industrial revolution the world has developed quicker than in any other age in the history of Earth. Even though with that has come convenience's and lifestyles that were unimaginable in earlier times, it also began the development of chemicals, drugs, pesticides, carbon, etc. As a race we seem to be getting weaker and weaker. Although some might say our life expectancy is higher than the middle ages, but  I would say it's lower than in biblical times! It also make me go 'hmmm' that Cystic Fibrosis was only "discovered" around the same time vaccinations were invented.... ??? Lot of questions about that! It can't be proven either way, but I sure would love to be a fly on God's wall to know...
"I love burgers, I love pizza. I just love when they are made with fresh, whole ingredients. The ingredients list in pizza should be about 5 items long, depending on the toppings. The ingredients list in school piece is 64 items long–that is a problem.” ~ Jamie Oliver ~
I want to provide some of that  motivation to make some changes! My approach is about doing right by my natural body needs. It needs (cells need) micro nutrients, oxygen, enzymes, vitamins, hydration, minerals, essential fatty acids, healthy bacteria, salt... yes I said salt! Proper salt not refined table salt! I mean good salt, that still contains trace elements and minerals (click on the link for further information). All processed food doesn't contain these essential needs to keep the human body going, let alone a compromised system as we have with Cystic Fibrosis. Bottom line: we need MORE natural food than healthy people to stay strong! I want to thrive not just survive!!

It's my belief, that just how Jamie Oliver revolutionised School Dinners in Britain, so too our CF diets and Hospital food need exactly the same overhaul. To find out more about Mr Oliver's inspiring work click on this School Dinners link. Also for home cooked ideas Jamie has created the 30 minutes meals or the 15 minute meals series for busy individuals who don't cook much. Gordon Ramsey also has written a great recipe book Healthy Appetite. Even if these gentleman's personalities are not your cup of tea, the message is real, true and valid: Eat healthy food to feel better!! There are so many choices out there to fit anyones needs. There's no excuse for not making the change towards a healthier you!

If you only make one change, please be it a Juicer! Juicing can turn you health around and make a huge difference to how you feel. Juices contain all the good things: Vitamins, minerals, oxygen, live enzymes, fibre, micro nutrients, hydration. It's super food for your body! Are you eating a good amount of fresh fruit and veg? This is the quickest, easiest way to get it into you, FAST! I drink at least one litre a day to maintain my health. More if I'm unwell. The best juice I've found for my CF is a combination I call 'Pink Power Drink'!  CarrotApple and Beetroot  juice. My boys love it too! Also if I feel very chesty and thick mucus I have Cos Lettuce , apple and Celery  juice. I also love a little O.J. in the a.m.! The find out more about different juices and their benefits: Fresh Vegetable Fruit Juices book is brilliant!
Click on the produce names to find out all their health benefits.

Joe Cross made an incredible life change for the better by juicing, if you get a chance to watch Fat, Sick and Nearly Dead prepare to be inspired. I've been juicing my whole life, fresh Juice without a doubt has contributed to my longevity. I own three. A Champion, A Green Power and a Oscar juicer. I've found Oscar to be the best, most of all look for a Non centrifugal juicer produces better quality, more healthy juice.

So if your shopping up a storm on Boxing day (26th Dec) do your health a favour; pick up a juicer to make a New Years resolution to a happier healthier you!!

Wednesday, 12 December 2012

vincero! Vincero! VINCERO!!

"Fail? How Dare They Say That!"
Charley Boorman, Long Way Round. 
                                                                                (please note this link contains course language)

They said to my parents "prepare yourselves, she won't make it".... I did
They said I needed Liver, Heart, double Lung Transplant.... I didn't
They said there were NO other ways to manage CF... I did
They said carrying babies to full term was "Highly unlikely".... I did it
They said I couldn't be free of MRSA... I am
They said my lungs would collapse mid-air.... They didn't
They said without a double lung transplant my natural life would be around 2 years... I'm still alive
They said I can't get Kalydeco until it's approved in Australia... I've got it
They said it can't be done... I did it

Never Ever Give Up. You too can beat the odds, break statistics and live to tell the story. Believe it. Life rewards action. I never doubted this, or the power of God.

"vincero, Vincero, VINCERO!"
I will win, I will win, I will win!
                                                            ~ Nessun Dorma ~
Introducing My Boys Brigade. My Miracles. All, natural, full term babies... Sebastian was even a breech birth, no problem! Healthy Happy Boys. My motivation and reason for every effort I ever made.... Anything can Happen

Charles b.2005 Marcel b.2007 Gabriel b. 2009. Sebastian b. 2010

I will not fail them, I cannot. I will not die for them, I will Live for Them.  xox

Saturday, 8 December 2012

CF Mudda Becomes A Mother

After our wedding and short (3 days) "honeymoon" (not really! Benny still owes me one!!) at The Hotel Windsor, which was lovely (but not tropical Benny!! click the link Darling, click the link!!!*haha) we had to return to Benjamin's home in Perth so he could finish off the final two semesters of his degree.

Yadda yadda yaddda, I was expecting our first baby a month later!

Picnic in the Park, 6 months pregnant

I was delighted, elated, excited, over the moon... surprised!! I thought it would be hard to conceive given the stories of infertility and CF that I was aware of, but for us it was very (Ben might say "too") easy. Benjamin was in shock!! (when I told him he looked like someone had died!) He was happy, but instantly worried too. We didn't expect it to be so easy (conceiving a baby)... Ben takes credit for it! *roll my eyes

After the dust settles and the "morning" (all day!) sickness begins I must admit to it was nerve wracking. Only because of all the horror stories you hear of ladies who have CF trying to have babies. The fear surrounding this subject is huge. You get bombarded by the worst case scenarios when your at CF clinic, of course they correct and are bound to tell you so you know everything. Add to that, I started heaving bleeding about a month in, I was rushed to emergency dept. They thought we lost our baby, but then the ultra sound picked up a heartbeat. Thank God! There's a possibility I lost a twin. So I was sent home to R&R until the bleeding stopped. So it was stressful, vomiting, bleeding, coughing! The acid from the vomit made the cough difficult. This was the only discomfort from having CF that I experienced at that stage.

Cravings; of course I had to crave the one cheese ladies in waiting are meant to avoid: Camembert! All I wanted was that with warm Turkish bread, Tadzhik dip and sun dried tomatoes!... and Shiraz!!! haha! I was enjoying my new preg-bod (early on). I've always been a petite lady if you get my meaning, it was a whole new me... and I liked it!

We had the routine ultra sounds and baby was developing nicely. 10 fingers and 10 toes, meeting all the normal growth developments. Each check put our minds at ease. Our baby was alright. Still underneath that was the anxiety about if our baby would have CF. We chose not to do genetic counselling. Bottom line we were prepared if our children had CF. We hoped not, but termination or embryo selection was not even an option. CF was already a big enough concern without having genetic over shadow the experience.

Many people ask," how did you cope having babies, being pregnant, giving birth?" With a LOT of effort, however not so much that made life terrible. I had to take it easy, look after my health, make extra effort nutritionally and never let physio slip. The Zen Chi machine made this sooooo much easier when I was expecting! It supported my back/chest without putting pressure on my pelvic area. Let me tell you ladies, coughing with a head pressing on 'down there' is tricky!! Actually this was the most difficult part of being pregnant and having CF. Towards the end of the 9 months I found that the most difficult thing to cope with. Baby's head sat in such a way so I couldn't empty my bladder properly, 'needing to go' made me cough, coughing made me.... lets just say thank goodness for 'tena lady'!!

Surprisingly my breathing didn't feel too bad. I was around 55% lung capacity when I began to have children. I expected a lot more respiratory discomfort towards the end. The only noticeable thing was needing two pillows, but that was mostly to stop coughing because of the issue above.. or should I say below?! This was not just 'luck'. I put all my efforts into being healthy, eating healthy, Juices and homemade smoothies galore!! It was full time, I didn't mind putting my life on hold for this though. It's all I ever wanted. 9 months is short time in the bigger picture. The rewards outweighed the sacrifices. 

May 7th, the day before Benny's birthday, I felt odd. I was a week over due, had a few false alarms, but this time it was for sure!! Gosh is nerve wracking the first time!! You just don't know what to expect. No matter how many classes or books you read or people you talk to, until you go through labour don't bother trying to 'get' it, just relax!! Your body is made to cope with it, our heads are what get in the way of that.

Fist part of labour I was excited, cracking jokes, bouncing on those big exercise balls, having conversations, looking out at the Autumnal view. It was a beautiful day. I was so please to go into labour at a decent hour. I was admitted into my room at 11am. Then I went to the toilet for #1 (as per usual!)... HHHHEEEEELLLLPPP!!!!!!! It was the biggest contraction. The pain was... I can't even describe. I couldn't move. The midwifes carried me over to the bed and there it began. The most painful 45 minutes of my life. Let me tell you too, you DO NOT forget the pain, whoever said that is being very diplomatic! I thought my whole body was falling apart from the inside out!! Nobody told me that it feels like doing a massive/painful/horrific #2. But it was all over in 45. I coped fine. No tearing or excessive bleeding. My breathing didn't change a bit. It all went without a hitch. I thought what all the fuss about? What is true is that despite the worst pain of your life, you'll be happy to do it again!

Most of all Our first Healthy Baby Boy.... Charles James

Baby Charles at home, 3 days old

US. 8 weeks old.... xo

Happy Boy. He's got His Daddy

Words cannot describe the feeling of having a child. It ignites your life. That Charles was healthy we were so thankful and felt completely Blessed. And I was Beyond Happy to be Alive....

Tuesday, 4 December 2012

Mi media Naranja

Mi media Naranja. (English: "My half Orange" Spanish saying about finding the half that "complemento" you) My Soulmate. My Love... Benjamin.

They say 'fools rush in', well speak for yourself, my IQ is 145! *haha. We met and married within 8 months! Our meeting was by chance. The both of us were on holiday visiting our families for Christmas in Victoria. He came from Perth, finishing his Uni degree in Landscape Architecture. I was in transit, about to make the move to Melbourne. Then there he was... *enter Maria Aria....

The first time I saw Benjamin was from a distance. Tall, dark & handsome (so cliche of me I know!), wearing the most perfectly tailored french navy coloured corduroy jacket. He strode across a car park. We arrived at the entrance of the building at the same time, he held the door open for me. He walk like a supermodel from London fashion week! To this day when I see him walking from a distance I catch my breath and get tingles. I melted. I wondered who this handsome stranger was. I thought no more about him, but a while latter I was introduced by a mutual friend to a charming older (well older than me!) English gentleman. We happily chatted about life and plans etc, very enjoyable conversation. Then the crowd parted, like the red sea for moses, this handsome guy was coming over to us, looking straight at me!! He said,"Hi Dad". (Your kidding!! I've been talking to his dad?! He can't be real; English too!!!!!) "This is my son, Ben, he's visiting from Perth"...

The next day I got a call, it was Ben. Silly me slammed my finger in a siding door in a fluster! How did he get my number?? (his sister got it off another mutual friend!) "Do you want to come to the Melbourne Art Gallery with me?"....!!!!!!!!!..... "yeah ok". Derr, why couldn't I think of something better to say. And so from then on we we're inseparable. We went all over Melbourne and surrounding regions. Enjoy our break and each others company. We had so much in common. Christmas came and went, our respective times on holiday were drawing to a close. I hadn't thought about the future much at that point, but it did occur to me that I would miss Benny's company, desperately. I had no idea he might have felt the same way about me.

Happy Days

February third: we we're taking a day trip to Victoria's alpine region. Lovely area, I highly recommend it! *wink
We hiked up a fairly large slope, it was covered in purple Scottish thistles. It felt like the Braveheart movie! He suddenly got down on one knee asked me to marry him. I said,"Aye, that's a 'Yes"...

Benjamin is an incredible man. He has English dapper thing down pat, so reserved and considerate, but also completely Alpha male underneath the cool facade. A universal man, appreciation of everything cultured and fine. He's is above all good man. I feel so looked after and Loved. We are totally devoted to each other and our dear little boys. 

The only thing I pick a bone with him about is his love of cars. More to the point, how many he can have!! His hobby is to be obsessed with: Porsche 911, Karmann ghia, VW, BMW, Jaguar, Bugatti... you get the drift! I say, when we get a garage like Jay Lenno, then you can stock up (otherwise our property will be jammed up with cars... and not for a dinner party!) Until then 3 cars will do! He says I need to relax about it. Life could be worse...

Mi media Naranja... You are my Half Orange My Darling.

And They lived Happily Ever After..... xox

 Our wedding Song

Saturday, 1 December 2012

What if I had known about Kalydeco?

I'm sorry please could you repeat the question? What if? Coulda. Woulda. Shoulda.   ....Bah!

Between the ages of 19 to 23 were my 'footloose and fancyfree' days. I had put in the hard yards to rebuild my body to it's best possible condition. At this time I reaped the rewards! It was nice, but you know the question must be asked 'had I now about Kalydeco in the pipeline, what would I have done differently?'. Plenty, but it's always easy to say that in hindsight. When you know better, you do better.

My German friend Bettina & I out and about. Bettina was one of my Bridesmaids. xo

                    "Youth is wasted on The Young"
                                           ~ Oscar Wilde ~
For some people in those years of new found independce that young adults feel there can be a strong element of invincibilitie or perhaps recklessness (?) that motivate's our choices. Stupidity is another less 'PC' way of discribing it! Certainly for me I got to the point where I couldn't repair much else of the damage cause to my body by CF 'naturally'. The lung damage was the bane of my life. All my infections and daily stresses came from that. I chose what I regard as the 'quick fix' (quicker than natural treatments), several admissions for anti-bitotic's over these few years. I didn't want my life to be on hold forever doing natural therapies. I was getting on with it, still making healthy choices with nutrition and suplements, but to be frank I was getting tired of having to put so much effort into my health at the time. It's so incredibly frustrating to be held back by health when your young and full of ideas, raring to go. I love life, getting stuck into the things, achivments and goals. I'm very ambicious by nature, I honestly think the ONLY thing holding One back from everything I want: is health. The world is you oyster when your educated, have the motivation and a bright mind.... IF your healthy!!
"80 percent of success is showing up"
                            ~ Woody Allen ~
Coulda: That was my problem. I couldn't 'show up' because I wasn't consistently up, and often down. I'd say 'yes' to something then need to cancel. The Fashion Design course was the biggest 'no show'. I had to let it go, unless I had lived constantly from IV to IV whilst completing the course. I wasn't prepared to do that. Not after all the effort and money spent to detox the drugs from my system, I couldn't do it. So I had to decided 'no', but deep down I was bitterly disappointed about it. I beat myself up about it.


All I wanted to be in Paris. Working from the ground up, it didn't matter to me. I 'woulda' swept the floors in the House of Dior or taken the trash out of Givenchy, delivered mail for Chanel. What is it about Haute Couture that enchants me so? The theatre! The creation of such perfect beauty, these garment are works of art. Each has it's own character, complements and accentuate's the best (covers the worst!) of the ladies whom they are created for. Each garment is like a fairy tale, they each create a story or mood, complete fantasies. I cannot tell you my favourite dress or designer or 'fashion moment' as they say. They all are different, like personalities, I appreciate and am fascinated be them all for different reasons.

"Haute Couture should be Fun, Foolish and almost Unwearable"
                                                            ~ Christen Lacroix ~


In those (blissfully ignorant) early adult days should have minded my tongue more! Never assume a lady wearing a babydoll dress is expecting a baby. Don't enquire how someones partner is if your not sure if they're still together. Don't talk per say if you've had a little too much booze... (and if you don't feel quite the ticket and wish to cover it up, make sure you stand next to someone who has clearly had more to drink than you! If that doesn't hide the fact then pretend to be foreign)
But seriously, I should have had more self preservation. Not burnt the candle at both ends so much. My long term health would have thanked me for it, so woulda my account!

C'est la vie! That's life. Everyone who looks back on their youth could find cringe worthy episodes. I would have like to know about Kalydeco when the science was discovered in the '90's. Even if I didn't know if I could have had it or not. Knowledge is power. The knowledge would have allayed fears of the future, motivated me when I was going through a rough patch. Made the stress a little less. A light at the end of the tunnel so to speak.

So kids, take it from 'Aunty Faye': Have yourselves a good time, but don't let your health slip! The science is out there... it's only a matter of time. Meanwhile, always remember to take care of yourself... or better still, Fall in Love! .... xo