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

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