Wednesday, 27 March 2013

Finding a Purpose in Suffering

Salvador Dali's 1951 Crucified Christ Painting

Deny thyself, take up thy cross and follow Me
                                                                                      ~ 2 Timothy 4:3 ~


This painting of the Crucified Christ is one of the most moving pieces of art for me (next to the ones pictured below). The way Dali has captured Christ's floating Divine resignation to His fathers will... in a small way I know this feeling very well. So many time with CF you find your self completely powerless to change circumstances beyond your own power. It's these times one feel incredibly helpless and must completely put ones trust in God's Divine knowledge. An example of this is when picc lines are put in. They pull my arm out onto a board that feels much how I imagine a cross would have felt like for Christ (but without the anaesthetic!!). One time they hit a nerve and I can say the pain was worse than child birth, only shorter lived (thank goodness!!) to this day I still have numbness in my fingers occasionally due to the nerve damage... On the table a prayer inside my head repeats,"Jesus Mercy! Mary Help!"

For some of us it is more difficult than others. Suffering has been our life, disappointments, our heartache.. our cross. On the human emotional level it's easy to feel 'why did God let this happen to me?'. Therefore doubt in His divine love for us and become bitter about God and Faith in general. I understand this feeling very well. As a teen part of my personal rebellion was just the sheer trauma of realising the gravity of my illness. All I wanted was a happy life full of adventure and love. This sickness thing was a total downer! I did question how could God love me if I was given this cross (burden)? What did I do wrong? Am I so bad or does He hate me so much that I needed to be punished like this? I didn't understand it at all. 

It is believed that Christ suffered the most in the garden of Gethsemane, 'The agony in the garden', the total surrendering to His fathers will. It was mental torture, knowing all the sins of the world that he was about to make reparation for. He is said to have sweat blood. I have always related the most to this part of the passion, the mental suffering. In a chronic illness, well for me anyway, the mental and spiritual side of it has caused me more suffering than the physical. Fear. The feeling that God did not love me made me despair. I was so sad, but unlike Christ, I was immersed in self pity and in my teens seriously tempted by suicide by what I percived to be a bleak future (a moment of despair I regret completely)

Carl Bloch 'Gethsemane'

My mother always warned me,"Beware of self pity". It is very true, not only do Catholics believe despair in God a grave sin, but on a non religious level self pity renders you powerless. As though in your mind your a victim. Finally I rejected it, I got over it, accepted CF offered my sufferings to God and prayed that life would become better. I went on a pilgrimage across Europe when I was almost 17. This was after being gravely ill. I wanted to thank God for helping me through, but also my prayer intention in the Healing waters of Lourdes in France was 'Dear God, please make my CF manageable so I can still have a family, raise them not let it effect them like it has me. I don't mind to suffer if I have to, please grant me this prayer. However let not my will but yours be done'. My deepest fear is there is no heaven, I chose to ignore this doubt. Sometimes the only prayer to say is the one Saint Thérèse of Lisieux would say in difficult times, "I believe".

Aside from the enormous practical help I found in Dr Phil's work, I also read books by many different Saints. On in particular I found helped me over and above (was incidentally loved by St. Ignatius of Loyola)   is by Thomas à Kempis 'The Imitation of Christ'. The good I can appreciate now from these dire situations, is experiencing that total abandonment to God is a invaluable (humbling) life lesson for me. Chicken soup for my soul if you will! I cannot always see a divine plan in situation (of course, I'm not God!!) but I have gained my strength from trusting in Divine providence.

I hope to return one day to all those sacred place I visited to thank God again and show our sons these breathtaking shines. My Angel has liberated me, My prayers have been answered... 

My favourite painting of all time, The Liberation of Saint Peter 


"If there were no God, there would be no Atheists."

~ G.K Chesterton ~

I do not shout my Faith from the rooftops (however I would never deny it either!), it is an inner belief personal to me that I live by. Being Maundy Thursday I thought I'd share it here before the Easter cerimonies commence around the world so some may understand where I gain my strength from; it is not mine, only God's. To me it is a pity that the world our day and age tries to make God obsolete, non existent even. It is a loss for mankind, not just spiritually, but also culturally. I see what disbelievers mean, 'you can't see it so your just ignorant and believe in myths or ledgends'. Put it into my Catholic perspective, yes I can see that life would be easier living a hedonistic life, but just say religion is right, there is a God and eternal life? I'd much rather be prepared and worthy of God than to turn up disrespecting Him! I guess this is the mystery of life, we may never know for sure until we die, and if I find there is 'no heaven', I doubt I would care by that stage! If there is; well well, it'll be perfection!!!

I cannot deny that this is the only reason I maintained my inner peace, courage and strength throughout suffering (possibly some will find it depressing! I understand, but it's important I think). Faith (which happens to also be the meaning of my name)gives it a purpose, it makes suffering worthwhile and hopefully redemptive. People with an illness should never feel they serve no purpose, you can serve one of the highest in the eyes of God...

God Bless you and your Loved one this Easter. xo













Saturday, 23 March 2013

Recipe Corner: Mango Chicken Curry

"You don't need a silver fork to eat good food"
~ Paul Prudhomme ~

By popular demand I have been inspired to start a recipe corner! (Thank you to all those who have asked!!) In these occasional blog entry's I will share some recipes I love and family favourites that my boys get excited about, including Daddy!! In our house we mix it up in terms of cuisines. We love exposing our boys to different flavours from cultures around the world. Hopefully they can travel the globe like I have when they are older with an appreciation for all the different cultures around this beautiful planet. We're doing our best to develop a good palate in our sons so they can see foods as a very pleasurable lifelong adventure. The boys have turned it into a bit of a competition who can eat the most spicy food (which was incredibly funny when they tried wasabi on their Sushi!! *ha ha). As a result they do love all sorts of cuisines, when we are out for example they prefer sushi over sausage sizzles. One of the rules in our house is: you must try everything at least once!!  It's fun and all done in good humour, they love their food and so do I!!

Mango Chicken Curry

Ingredients:

1kg of Chicken Thighs, cut to bite size pieces
(or replace with potatoes if you want vegetarian curry)

1 Large Onion, finely diced

3 cloves crushed Garlic

2 tablespoons minced Ginger

3 Mangoes, wash, peeled, diced (retain the seeds)

2 Teaspoons of Tumeric powder (or fresh grated root)

750g Full cream Yogurt, beaten

1/2 teaspoon of Chili powder 
(more or less depending on tolerance levels!)

3-5 Curry leaves, washed

2 Green Chillies 
(seed them for less heat/ again more or less depending on tolerance)

1 cup of Water

1 teaspoon of Mustard seeds (white)

1 teaspoon of Methi seeds

1 teaspoon of Cumin seeds

Olive oil or Gee/butter to cook as desired


Method:              1.     Saute Onions until golden brown on medium heat (approx 10mins)
(I use a heavy based Le Creuset 2ltr capacity pot/ Approx 2-3 Tablespoons of Gee/butter or olive oil)

2. Half way through this stage add Garlic and Ginger                                    

3. Put the mangoes in the skillet along with the whole seeds of the mangoes.



4. Add the curry leaves, green chillies and water.


5. Add Chicken, salt, turmeric powder and red chili powder.



 6. Bring to a boil, simmer 15 mins or until chicken cooked



7. Heat oil in a non-stick saucepan.



8. Add the mustard seeds and allow to crackle.



9. Add methi seeds and allow to sizzle.



10. Add the cumin seeds and allow to splutter.



11. Add few curry leaves and stir-fry for a few seconds.



12. Remove from heat.



13. Pour into curry.


14. Stir well.

15. Allow to cool for about 15 minutes on the kitchen counter.

14. Then, stir in the beaten yogurt.

Mix it well and serve with cooked Basmati rice, sprinkled with fresh coriander leaves, side vegetables, grilled poppadoms and yogurt if desired.

This is not my picture, but it should look like this. 

Enjoy!!
I'd love to hear from you if you you do!!








Monday, 18 March 2013

Being a Mother. How do I cope?

“The soul is healed by being with children.” 

                                                             ~ By someone I can't  remember ~




Drawn by Jean Jacques Sempé



We have a very busy house hold. Busy is probably an understatement. More; active, non stop.. hectic!! But also lot of fun, particularly for the boys. It's lovely they have each other to play all sorts of 'boy games' together. Much to my horror sometimes! (*ha ha). They've all worn holes into the knees of their trousers (why do boys do that?!). Boys are busy, I never realised how much so until I became a mother. I love it, keeps me on my toes, pushes me to get going even when I don't feel up to it. The delightful sound of  children's silvery voices fill the air...


Drawn by Jean Jacques Sempé 

People have often said to me,"I don't know how you do it?? With CF + 4 boys!". I can say it took a lot of hard work and dedication to get to the point where I felt confident I could have children, let alone naturally! Many years of rebuilding my system through healthy diet and supplements etc. I am 'a domestic goddess' by choice, to conserve my energy, but as more of our boys start school I would like to work perhaps in charity or natural medicine (of course something to promote CF health care!). Without Benjamin's support I would no cope, period!. He is a wonderful father and husband, who go's over and above to take care of the boys and I. He has taken night duty from day dot, cleans up the vomit so I don't have to. Even when I fed the babies, Ben would get up and change them, pass them to me. All this so I get sufficient rest to stay well. My doctor said of him, "Dream husband! We are all (ladies) looking for a man like that".

I love books! I read many different ones and own a lot. They help me to remove myself from a situation, then come back with a fresh mind on things. Decentralise if you like. Can't pick a favourite!! Particularly books on psychology/self have helped me a lot when I was in my late teens, coming to terms with CF. It may sound corny, but Dr Phil has helped me a lot! I am a realist (despite my positivity! *ha ha) but yes, you can be realistic as well as positive, as Dr Phil teaches people everyday. I've learnt a lot of coping skills from his show and books. 

                                      
Gabriel, Charles & Marcel. (Sebastian was on the way!) xo

Where do I start! The practical side of it is simply logistics. Priority being I need to do a certain amount of treatments at certain times of the day. Nebulizer etc. Ben is on breakfast duty. Then he is gone for work and I take over. At their nap time I get other treatments in (nebulizer/physiotherapy). Weekdays, my mother takes a couple of the boys in the afternoon for a few hours to give me a break. Then it's dinner bedtime. Personally, I have never used child care centres or kindergartens. We're not satisfied with the standard of care they provide (my/our views on the child care/education system are a whole other story!). I have also read a lot into the psychological benefits of the child being cared for exclusively by their mother and family before school age. That's my choice and has meant a lot more work for me, but I don't mind at all. To me it's part and parcel of being a parent. When I was very sick (fractured rib) in 2009 I had to concede and we hired a few in-home nannies for a time, which was a life saver, but I was happier once I was strong enough to care for them myself again. All this considered, it is the driving force behind my passion for finding a healthier, stronger existence; I need to keep up! 


by Sempé illustrations from his books Nicholas


I have adopted a parenting style that I find helps me manage too. Dr Phil once said to a guest on his show about being a parent who wanted to be her daughters 'best friend',"she can get friends anywhere, she only has one mother". I agree! I'm not here to be their best friend, I am so much more than that! A mother is a soft place to fall, but also a firm guide when your going in the wrong direction. I am not interested in warm fuzzies from my sons, but in time, as they are older, an appreciation for the life and education we are providing them with. A well adjusted man with a deep sense of pride in who they are, belonging, responsibility to contribute, strive to do their best in all things, a happy childhood and know they are loved completely. I also hope they chose to embrace their Catholic Faith. We are strict (in the nicest way possible) about right and wrong, conduct, manners, teasing, rough games etc. Strictness always seems to have a negative connotation in world today. I agree it's not pleasant to be the lead balloon at times, but disagree that it's effect is negative. On the contrary it's necessary at times and how you get stronger children. I was raised the same way and I attribute my own ability to ignore my feelings and do whats right to this. Boundaries help children to feel safe. When done out of love (not anger!) discipline is positive. Look at the show 'super nanny', Jo Frost shows educates how children doing as a parent says is very important; obedience. They need to learn about consequences, good and bad, because as adults they will get them in life and work all the time. So Daddy and Mummy are boss in our house, what we say 'is so'. Sometimes the boys don't like it, that's normal. Main thing is our boys are protected, safe and having a happy childhood! They are free to be children. I think parents should stop feeling guilty about saying 'no', your not being nasty. Your teaching right from wrong! A great book I  came across last year is 'French Children Don't Through Food'  by Pamela Druckerman. Very amusing and insightful. My point being it makes managing the day easier when I'm in charge.  

Baby Sebastian George 2011

If you have not discovered the wonderful (translated into English) French children's books Nicholas written by René Goscinny and illustrated by Jean-Jacques Sempé, then your missing out!! They are hilarious, insightful and delightful read for all ages!! Written from the perspective of an adventurous little french boy Nicholas who gets into all sorts of amusing situations. I often feel our life is so much like these books!! 


 From one Mudda to another Mudda... 

Relax!! Your not a freak, you can cope just fine.  

Your so strong to still be here, not weak, always remember that.

You have untapped capacity's, never underestimate yourself.

Always keep your eyebrows 'plucked' 
(it's like a natural face lift) .

Organisation helps. 

Look after your health, R&R when you need.

Don't bother with guilt, it's a waste of energy. Just do the best you can.

Never think of anything important on 'bad' days or when you have PMT

Prioritise treatments, never let them slip or you'll end up in hospital! 

Support from husband and family or friends is imperative. 

It's ok to ask for help, don't feel bad about it!!!

Epidurals Rock! 
(yes, I did 3 births without any pain relief and I now say 'sometimes you have to pick your poison')

Know your limitations and adjust your expectations accordingly. 

Don't compare yourself to others, your unique. So what if you don't make cupcakes and look like Angelina Jolie! 

Learn how to cook: "way to a mans (sons) heart is through his stomach". Cliché? Yes. True? You know
 it is!!! (If you'd like your opinion to be taken seriously when they marry you better start baking now!! *ha ha)

Don't sweat the small stuff.

A Happy Home is better than 'hopital corners'.

Learn as you go, wing it if you have to!

Tomorrows a new day.

Be flexible, plans always change!

Stop to smell the roses, enjoy the ride etc etc. 

Laugh. Smile. Play. Sing.

A Champagne Celebrates the day!
(preferably Moët & Chandon)

It's the little things that count, God is in the details.

Charles' first Birthday 2008



This is the song I always sing to my boys xo



















Tuesday, 12 March 2013

My Bacteriophage Journey Update


Good Morning from sweltering Australia! Today is our 10th day of heatwave, but hopefully a cool change will come this afternoon... phew!

My bacteriophage (aka: Phage) journey has officially begun!! A couple of weeks ago I gave sputum samples over a three day period. Every morning taking a sample and sending it away to a lab to be isolated for what strain of bacteria I am culturing. The reason for doing it over a three day period is so to get a complete picture of ALL the bacterias that may be breeding in my lungs. This process took around a week to find out the results. I am culturing 

A pseudomonas Isolate on a lab plate


First Isolate

Mycroscopy:
                   Moderate numbers of polymorphs.
                   Moderate numbers of epethelial cells.
                   Large number of mix bacterial forms.
Culture:

                  Org 1: Light growth of pseudomonas aeruginosa.
                  Org 2: Heavy growth of upper respiratory track flora

Second Isolate

Mycroscopy:
                   Moderate numbers of polymorphs.
                   Moderate numbers of epethelial cells.
                   Large number of mix bacterial forms.
Culture:

                   Org 1: Light growth of pseudomonas aeruginosa.
                   Org 2: Heavy growth of upper respiratory track flora

Third Isolate 

Mycroscopy:
                    Numerous polymorphs.
                    A few epetheliel clls.
                    Moderate numbers of gram negative cocci.
                    Small numbers of bacterial forms.

Culture:
                    Org 1: Moderate growth of pseudomonas aeruginosa.
                    Org 2: Moderate growth of upper respiratory track flora

           
Results

The next step was that these three isolate plates were sent onto Special Phage Services lab in Sydney to be cultured and tested for phage matches (phages that would kill the bacteria). Unfortunately there were no matches in Sydney for my strains of bacteria, the doctor is going to review the lab report to make sure they have tried every appropriate phage they have. If Sydney indeed still do not have a match then it's onto Tbilisi (my isolates that is!), what is still unknown is if Tbilisi have a phage to match, or not? Then it may take a while for them to find one, but we shall see this week what will be the next step for sure.... 

Interesting to note the doctor who examined my isolates in Sydney said that my bacterias behave/look very different under the microscope compared to other pseudomonas strains, hence the double check to make sure I am not culturing something else! But no, just like me my bacteria is unique! *ha ha. I am actually happy to know it is so difficult to combat as I have found this to be true myself. It puts my mind at ease to know it's not something I am not doing that causes this stubborn bacteria to remain in my lungs, it's difficult by nature. This news also gives me a lot more confidence that I am totally on the right track to pursue phage therapy. This little sucker (pseudo) needs a specific virus to combat it for sure!

Bacteriophages killing pseudomonas under the microscope


I want to put phages in perspective for those who still have trouble coming to terms with taking a virus as a treatment. Think of it this way, just like the world had to change their mindset on Bacteria: Friendly vs Enemy. So too is the case for virus's, there are good guys and bad guys. Phages contain the DNA of that specific bacteria, they infect that DNA of the bacteria, multiply and destroy. These virus are benign to anything but those bacterias, ineffectual on anything else including our health. They're only food source if you like is THAT bacteria, once there food supply is gone/eliminated then the phages are no longer active. You cannot get a super virus from a phage! It's impossible, just like you don't get ill from taking your probiotics. 

Till then I will continue my education on all things phage and hunt down my phage friend!! Hope to have some more exciting news next Phage update! 

This video is a very interesting article from Canada. Give a little history of phages (they claim that a french Canadian discovered phages, I read the English have claimed credit... obviously a bone of contention!)
One very poignant topic covered was that they gathered 18 strains of CF bugs, treated them with phages and 17 were wiped out. Fantastic!







Sunday, 10 March 2013

CF MUDDA Milestone!!!


For my Dear readers,

Last night this little project of mine: CF MUDDA reached a milestone of 10,000 views since starting last November (and is continuing to gain momentum!) I can't believe it!! I am so very thankful and appreciative for all your support and interest in my Cystic Fibrosis journey. I have been continually delighted to hear from so many of you who have written messages of thanks and support or even just to say 'hello'.You are the reason why I continue to share my journey and you make me smile every time I hear from you. I have loved hearing all your incredible stories too!! It's a comfort to know so many people are quietly fighting the good fight, we understand each other so well, even though we have not met! This is one of the greatest blessings of having CF, knowing such strong, courageous and kind hearted people. I hope we can continue to share and gain strength from each other and even better one day have the chance to meet you in person!! God Bless you all....
 Thank You. xox








Thursday, 7 March 2013

Pysiotherapy vs Pysical Activites



Previously I have declared I have "not regrets", that stands true for the most part, however there are a couple of mistakes I have made along the way that no doubt effect my health today. Aside from dropping my super healthy diet in my teens, I also became sedentary compared to how I lived my previous 14 years of my life.

My hometown of Stirling in The Adelaide Hills

I grew up in the Adelaide hills, in a town called Stirling. It is a very popular tourist town know for it's beautiful European trees, some lovely historic architecture and delicious foodie culture (Local tip: do visit 'the organic market' when you in town). They even have a festival to celebrate the autumnal leaves! Being in 'the hills' it is as it sounds, 'hilly'! Going for a walk there was more like a trek!! I love the outdoors and Stirling made going our a pleasure. I would love to go on longs walks my beloved Bernese mountain dog, 'Paddy Bear'.

The botanical gardens I would often walk around


I was like 'forrest gump', always running, walking, riding, doing! My father and I would go on great long bike rides throughout the hills on afternoons or Saturdays in winter. Hours and hours, at least 4. I had no problems keeping up. Inspired by 'starlight express', after school I was always roller skating (I know, I'm showing my age!!) I played in the local netball club, our team won the regional silver medal, tennis club and later Flamenco dancing. On summer weekends it was always down to Brighton beach for ocean swimming and sailing. I was always the first in the water!!

Brighton Beach, Adelaide

Summer holidays were spent at Marion Bay, in a beach shack. Surfing, fishing, snorkeling and of course sailing! Fun fact: Jaws was filmed right around the corner from there... is that a 'fun fact' or a 'scarey' one?... hmmm *ha ha. 
Marion Bay

Other childhood activity's were: table tennis, golfing, badminton, trampolining, camping, trail riding (horses riding), catching ball at the oval, gardening. Cross country, baseball, soft ball at school. Everything I did got my respiration up and my body moving, I was on the go!! 

The amazing thing was I could do it, I could keep up and even play the most energetic position on the netball team, centre. Bike rides were ended more often by Dad than me! I had endless energy, which created endless appetite and all done on a super healthy diet. My weight was normal and I had no mucus build up. The diet reduced mucus production and the exercise maintained lung health. I didn't need percussion's or any other physiotherapy because my chest was clear. I didn't have a chronic cough until I was 13. I caught my first CF cough from the very first lung function test I'd ever done!

So I guess my question is: Physiotherapy vs Physical activity? Maybe if more energy was focused on the activities, then it would create a more energetic environment for children, happiness is a wonderful motivation. The fresh air and oxygen from moving about is hugely helpful, promotes appetite. Lung clearance happens naturally when one is so active. Coupled with a healthy diet and some extra supplements, this worked for me. 

I am just throwing out ideas hear, know that I'm not encouraging anyone to stop their treatments at all!! Please Don't!! Only suggesting that perhaps with a few tweaks to a routine, it may create a better and more pleasant management of the CF, therefore reducing the need of so much formal physiotherapy, reducing hospital admissions, increasing quality of life and longevity. I mean if you don't have mucus build up or infection due to a very healthy active lifestyle and diet, then is it still necessary to do sessions of percussion/vest when there nothing to clear? I don't know, but this lifestyle kept me healthy, fit, cough free and out of hospital for 13 years. I know for sure I would adopt the same approach if I had a child with CF. I was happy, healthy and hungry!! I felt pretty normal actually, I was shocked when I was told I had CF, I had no idea I even had an illness.

Dropping this routine was the beginning of a very long and difficult road of chronic illness for me, this is one of my only regrets in life, but I don't dwell on it, I just need to try and make it right. I am begining my own fitness routine again. Even though I am very active looking after my children, the one weak point in my routine is deliberate exercise to increase my lung function. When the temperature cools down, I am going to start running again! Starting the exercise habit when your older is hard, please do yourself or your children a favour, take my advice; find something you LOVE to get active and never stop moving!!! Your body will thank you in the long run!!!