Thursday, 31 January 2013

Why Bronchitol Is SO GOOD!!!!


FDA advisory board has voted against Bronchitol (aka: Mannitol) ... BAD VOTE FDA!!!

Bronchitol has helped me in a way Kalydeco couldn't even do. I've had crackles in my chest since I was a teen. my doctor explained to me that people with crackles have a worse predicted outcome that someone who doesn't. Say a patient with 50% lung function with crackles vs a patient with 40% no crackle, the 40% patients future health is better! Kalydeco cleared my mucus, but with that came severe asthma symptoms (asthma runs in my family). These symptoms took my kalydeco peak FEV (lung function) from 65% to 50% (46% -48% before Ventolin/ depending on the day) after one month on Kalydeco my Fev went up to 55%. After just one month on this amazing new medicine my FEV went up 10%. It cleared the last stubborn plugs of mucus that Kalydeco was having trouble getting to. I have had NO bad side effect at all!!!
There's still a chance to turn this around America, if the CF community rally to petition the FDA/Government to change their mind the final decision on March 18th may be a positive one.

My Bronchitol inhaler

Bronchitol has:

Relieved my Asthma
No more tight chest
No more wheezing
No more Symbicort (steroid)
No more Ventolin puffers in the day
Helped me breath deeper
Relieved airway inflammation
Cleared stubborn Mucus
Improved my Lung Function
No more Crackles

Please rethink your vote!!!



Tuesday, 29 January 2013

Tumeric (aka: Curcumin)


Curcumin

This herb has been used in Aryuvedic medicine since Ayruveda began! I first discovered this amazing herb when I met an Indian doctor, Sashi, we started talking and I told him I had CF. He proceeded to tell me about how Ayruvedic doctor's treat healing and what they use for different ailments. He said that I should particularly look at having Curcumin. I was curious and went away to learn all about it. As soon as I realised what it does I started taking it and never looked back. Tumeric is a root plant, curcuminoids is the property it contains. Similar looking to ginger, but with a distinct bright golden yellow colour that stains anything it touches! Used fresh or powdered in almost every curry that comes from India and many other curries throughout Asia.



First and foremost Curcumin is a very powerful anti-oxidant. It protects our cells against free radical's and boosts immunity. It helps cardiovascular disorders, regulates blood pressure, aids fat metabolism, arthritis, memory and many many more things. However what I want to tell you about it it's effect for Cystic Fibrosis. If you google the subject you'll find many studies into curcumin that are very promising.

When I first started Curcumin is was astounding. An hour or so after taking it I had enormous amount of mucus to cough up, and it was easier to come up, much like after I nebulize Pulmozyme. To this day I have not found any other natural product that works in this way and I still experience the same effect today. 

Curcumin is an anti inflammatory. With CF there is constant inflammation all throughout our body, particularly the lungs. Because of the CFTR block our airways are constantly dehydrated, hence the inflammation. That was the biggest thing I noticed when starting Kalydeco, my lungs felt wet for the first time in my life, because the CFTR function was corrected = Hydration. So curcumin can assist in relieving inflammation right throughout our bodies.

Digestive aid. Curcumin is bitter by nature, help ulcers, IBS and digestive issues in the intestines and bowel. Normalizes bowel movements, helps constipation and indigestion.

Curcumin protect the liver. It's been know to regenerate damaged livers. It stimulates the digestive juices and bile production. It's used to shrink engorged hepatic ducts and improve gall bladder function. Herbalist use it to treat hepatitis, cirrhosis and jaundice. 

Curcumin is anti-fungal. Helpful to control side effects of drugs that cause Candida/thrush (which is a fungus)

EXPECTORANT: clears mucus from the lungs! Alleviates coughs and asthma. 

Anti Bacterial: Helps to control Pseudomonas levels

CFTR Regulator: Following links are to clinical studies into CF and Curcumin's effect on our airways:

http://www.ncbi.nlm.nih.gov/pubmed/17178710
http://www.ncbi.nlm.nih.gov/pubmed/19740743

So there you have it! These are some of the reasons I'll never stop taking Curcumin, I only feel better taking it and am eternally grateful that Dr Sashi told me about it when he did. I take 4 capsules with meals 2 times a day. Please note: If you are prone to bleeding then take it very slowly and build up as curcumin thins blood much like aspirin. Also recently came across people sweating out a yellow colour (never happened to me) but if that's the case it's not harmful (just a hassle to clean) and your dose is most likely too high, you may wish to drop it back a bit.


One things for sure if you intend to use Curcumin for health it's best to find a good quality supplement that contains at least 500 curcuminoids. For children or anyone who finds taking tablets difficult, liquid Liposomal Curcumin is the easiest way to get take it with juice. Check the bottle for dosages, even better get yourself a good herbalist or ayruvedic doctor who can take you through it step by step. For the best and optimal health results best not to cook curcumin as it destroys some benefits, but cooking with turmeric is still a good thing to do.

My children take it and we regularly eat curry (at least once a week) We have acquired the taste for it, once to get used to the flavours other food actually start to lack character! At first my boys were cautious, starting on mango chicken only, now they have butter chicken, tika marsala, rogan josh, balti, and vinderloo!! (all homemade of course!) With poppadoms, pickles and yogurt/raita on the side or cream mixed in. They always feel good after and all the spices and herbs help to keep immunity up, any parasites under control and things regular in bathroom! It is an acquired taste to be sure, however I used to loathe curry, but now just thinking of them makes my mouth water!! You can adapt and learn to enjoy other cuisines whether your young or old, it's just a matter of perseverance, motivation and playing around with some different versions. No doubt though curry is so good for your system!

Acchī Bhūkha! (Bon Appetit!)






Monday, 28 January 2013

Ayruvedic Medicine

While I wait for replies to see if I'm a candidate for Adult Stem Cell Transplant (ADST) and Phage Therapy, negotiate costs, fill out applications, medical record releases, organise passports, do blood tests (mine and siblings), sputum tests, DNA being sequenced (important for ADST to know your DNA) all the while weighing up my options. I am still busy doing what I can to increase my chances of success and improve my health.

Don't for a second think I have given away my belief in the power of little healthy helpers. It's somewhat similar to that story of David and Goliath, the young lad takes on this gladiator type only to win with a tiny stone! I have always been amazed at how doing lot's of small things come together to become one powerful thing. Like an army! I have been adding several new things to my routine. The next few entries will be all about it... My most recent addition to my troops is Haritaki Terminalia Chebula. Click this link to read the story where I first learnt about Haritaki: sepiamutiny.com

Haritaki plant


On a side note I LOVE how India send  post!! It's the designer in me; the delivery was hand stitched covered muslin clothe. Absolutely charming, made me feel like I was receiving something very special from a unique part of the Empire. I didn't want to open it because of it's so uncommon to receive such a parcel!

                                              
Haritaki package direct from Mumbai


Back to the point: I started taking Haritaki last week for the first time after learning quiet a bit about this wonderful herb. It's been used in India for centuries in Ayurvedic Medicine. Years ago as a young teen I had an ayruvedic doctor and had reasonable results. I had other health issues that I have detoxed and now with an adult mind understand what I need to do.


An interesting YouTube video about Triphla; an Ayruvedic combination, including Haritaki


Haritaki is generally known for it's effect on the intestines. Traditionally used for heart, arthritis, asthma, colon, ulcers and parasitic conditions. It's an anti-spasmodic, expectorant, anti-fungal. Seems to do everything!... I'll let www.iloveindia.com explain:

"Uses & Benefits of Haritaki
  • Haritaki has laxative, rejuvenative, purgative, astringent and dry properties.
  • The paste of its fruit is effective in reducing swelling, hastening the healing process and cleansing the wounds and ulcers.
  • The paste gives relief to the eyelids, in case of conjunctivitis.
  • Gargling with haritaki decoction helps in stomatitis, oral ulcers and sore throat.
  • It serves as a good astringent for loose gums, bleeding and ulceration in gums.
  • The herb is used in preparing ‘Triphala’ that is used for hair wash, brush teeth in pyorrhea and treat bleeding gums.
  • Regular consumption of haritaki powder, fried in ghee, promotes longevity and boosts energy.
  • It responds well to gastrointestinal ailments, tumors, ascites, piles, enlargement of liver-spleen, worms and colitis.
  • Powdered haritaki, mixed with jaggery, works well in gout.
  • Its powder, when mixed with honey and ghee, is an effective remedy for anemia.
  • Haritaki is combined with sunthi powder and given with hot water to lighten asthma and hiccups.
  • Its decoction, when taken along with honey, is of great help in hepatitis and obesity.
  • The herb improves memory and is salutary in dysuria and urinary stones.
  • Haritaki helps in improving appetite and helps in digestion.
  • It is a good nervine and helps in nervous weakness and nervous irritability and promotes the receiving power of the five senses.
  • Since it is anti-inflammatory and astringent, it is helpful in urethral discharges like spermatorrhea and vaginal discharges like leucorrhea."
It's been a relatively new finding that Haritaki does in fact kill pseudomonas. So I ordered it to give it go. My first thought was 'hang on, the pseudo is in my lungs, hows a powder going to help?' But then I remembered after hearing what one of the Phage doctors said to me "Pseudomonas can be everywhere in your body. We need a stool sample, mucus, blood, urine. Everything." Apparently very often they find pseudo growing in CF patients intestines. Hence why Haritaki is worth it's weight in gold, it'll quietly work away on everywhere!

                                        


The way I take Haritaki (H) powder is: 1 teaspoon in half a cup of water followed (quickly) down by juice. Trust me, have that shooter juice lined up, good old 'H' is very bitter!!! But what doesn't kill you makes you stronger right?! They bring them up tough in India that's for sure, respect! Changes that have happened: well, do you really want me to get into detail's about the loo? Let's just say rotten eggs I have not been eating but somehow producing since starting 'H'? hmmm...(sorry, so gross!) No laxative effects which is good, in fact I'd say it's improved things in that department... feels as though I ate a LOT of fibre! The colour of my cough/phlegm has lightened by a shade too. I feel good with it, no negatives (aside from the taste) glad I'm trying it we'll have to wait to see any long term benefits. A sputum sample was taken just before I started and I will repeat it in a few weeks, I'll let you know if it's a spectacular result. Next time I will write all about my #1 Ayruvedic medicine that I rely on (has been proven to help CF) one I have taken on and off since the 90's: Curcumin

Ready or not pseudo mudda ----- it's my turn to play hard to get. Two can play at this game... 
RELEASE THE HARITAKI!!














Sunday, 27 January 2013

Advanced CF. Kalydeco. Phages. Stem Cells.

Charles and I crabbing today by the seaside


What a busy week I have had! My sons are still on their summer break and we've been enjoying our time together... Jerry Seinfeld is right, "A two-year old is kind of like having a blender, but you don't have a top for it.*ha ha! Little boys are crazy busy little people, but I love it!




In ALL my spare time (*ha ha) I have also been cramming in research and reading information on Adult stem cell therapy and Phage therapy for Cystic Fibrosis related lung disease. Plus writing/talking, endless communications with all sorts of different centre's, at home in Australia and overseas in my search for better health. These two treatments really are the future for severely effected CF lungs.



Basically the point or reality at which I my health at is: Kalydeco is a life saver, no doubt about it. Compared to before, my/our life has improved 100% since starting on it last May. However, I still have the scar of the CF legacy if you will. Lung Damage. If I'm to sustain this improvement I need to keep moving forward by seeking other treatments to continue this amazing improvement to my health that Kalydeco has kick started and now I have Kalydeco on board I have a better chance (and energy) of making the most of these other treatments I am learning about.

"Nothing is impossible. The word itself says 'I'm possible'". ~ Audrey Hepburn ~

The Fact is after 32 years of chronic lung infections your lungs are left with these scars, in that damage is a perfect breeding ground for bugs, making it very difficult to clear the ever present Pseudomonas. As long as these issue remain in significant amounts, then I will ultimately decline, slower and more comfortably now I'm on Kalydeco, but still it remains a concern. The only thing I'm afraid of is doing nothing...

"An Ounce of Prevention is worth a Pound of a Cure"

I'm a huge believer in PREVENTION! Hence my passion for healthy choices. That's also why I'm so excited for the CF patients out there who have no or very little lung damage, because Kalydeco will help prevent it for you giving your lungs a fighting chance for a long and happy life. You'll feel so close to normal that you'll feel, well normal!!. Older patients like myself Kalydeco is our saviour. We hung on just in time to catch the K-train!

Bottom line is my desire to raise our four sons with my love Benny, to see them safely to their manhood. I will do everything in my power to protect them from CF. I don't want them to be hurt prematurely by this beastly disease. It would bless my heart to see them grown. I am so content when we are together. I would miss them all in Heaven.



Time to dust myself off and start again! I'm excited! I am not afraid, only happy and thankful to have this opportunity. I'm ready to take on this challenge, this is relatively uncharted territory, I'm used to that by now! Before Kalydeco I had no energy left to take on anything else medical. Now I'm so motivated to get stronger and stronger, half won't do! Since kalydeco tamed the CF mucus monkey in my chest I have caught my breath and reclaimed my mojo! I have a chance to turn my future and my family's around, I'm going to grab on with all my might. Pray it be God's will.  I draw on all my strength for four very good little reasons...























Saturday, 19 January 2013

Finding Our Never Never Land

"Sorry, Your Child Has Cystic Fibrosis".
Your life was sailing along, and then with one little sentence from a doctor.... It must seem to all come crashing down, like the Kraken was released on your ship, your inner world is suddenly in chaos. How do we cope???




A couple of days ago I was talking with my mother about when I was first diagnosed with CF. Three doctors sat her down in a room to break the news to her. They told her what I had and that she could cry if she wanted... She didn't 'want to' cry because she didn't know what CF was. She simply asked,"will it shorten her life?". Yes. She said the doctors looked like were going to cry! They gave her a pamphlet, she asked if she could have some books to read all about it, they looked confused and fumbled around brought her some really thick medical books, so she read them. My mother doesn't cry easily! (I don't know what my father did when he was eventually told, I'll have to ask!) Mum is an objective thinker, analytical and sharp minded and has a passion for science! CF did not frighten her because of her understanding of how things work, it was just another thing. Thank goodness she was like this because I can tell you my father and I do not have the slightest natural interest in science! But my Dad has always supported her every step of the way...
Both my grand fathers were world war two veterans, being children of that tough era no doubt shaped and taught my parents to have a lot of grit, that they have passed down to me.

Mum and Dad wedding day. Still going strong!


What prompted this conversation with my mother was hearing from so many parents who are going through the same experience (in their own way). Being affronted with this whole new world of CF, overwhelmed not knowing what to do. Mum was very pragmatic about it, but for some the diagnosis rocks families to the core. Feelings of denial, anger, grief & guilt are all normal parts of the process. CF changes the direction of our lives, but I want to say it's not such a terrible direction. Once you can move through the initial feelings, there is light at the end of this seemingly dark tunnel.

"Every man dies, not every man really lives" ~ William Wallace ~

Please do not assume because I am so positive about CF that I am in some way unrealistic or in denial. On the contrary, I have experienced full well the harsh reality that can be CF and know how difficult it can be at at times. That is why I am so proactive in managing it! Fundamentally it is a more high maintenance life we have to lead, but I have accepted this and just get on with it. I see it a duty to do this for those who have done so much for me.  Acceptance is key to transcending this disease and turning a potentially sad life into a productive and happy one, with peace in your heart. Not only thinking of oneself, but more so of those around keeps me motivated me to stay positive and proactive. When you don't let fear overshadow your thinking it make it possible to fight it.

I have found acceptance through my Faith. Catholics believe suffering can have redemptive qualities if suffered with humility, patience and love. I have found a reason for my cross. By God's grace I am happy to bare it. Better me than anyone else I love. This core belief puts everything else into perspective for me. God has given me more than I ever thought possible, for that I am forever thankful.

Never did I get called a ''CF'er" or a "CF", my parents never said "my CF'er". I am a person with a name, their child, with a soul. CF does not define who I am, I just happen to have it! It's bad grammar if nothing else! I reject the mindset to label myself in that way. It's not a healthy attitude to have, almost like pointing the bone. To me it effects the mind from thinking beyond the boundaries of this illness. Even though my parents must have felt overwhelmed at times, they never showed it. Never stressed or negative about my health, I felt like a normal child. Until I was in my early teens I didn't even realise I had Cystic Fibrosis, those words were never uttered and I was non the wiser. My parents always made it clear to me what a blessing I was. In fact, CF brought us closer together. We are devoted to each other, my whole life I have observed all they have done for me, tried my hardest for them.

Me aged 3

Sometimes, I feel the past and the future pressing so hard on either side that there's no room for the present at all.” ~ Evelyn Waugh Bridehead Reviseted ~
Remember when you were a child the little things would delight you? It's the little things. I have had the blessing of rediscovering the world through my boys eyes. They live like peter pan, bringing me back to 'never never land'. So full of life, energy, on an inquisitive adventure are their little lives. Take time to enjoy the little things (or people!)  in life because before you know it they'll pass you by.Whether we live for a hundred years or not another day, we only have this moment, this time to share. I will not waste it being fearful of the future sadness that must come to us all... To cherish the time we have is the greatest gift you can give each other. Love. xo






Monday, 14 January 2013

Brave Hearts of Scotland

"Success Is not Final, Failure is not Fatal: It is the Courage to continue that counts"
                                                                                                                               ~ Sir Winston Churchill ~

Oh what a disappointment for Bonnie Scotland! The land of my mothers birth. I share in your heartache because I know how much Kalydeco can do! I see the picture of the dear little children waiting for this life saving medicine and I cannot begin to fathom the mindset of those who are making this choice...

We are behind you every step of the way, and will support you in any way we can. This is an opportunity for the CF community to have their voices heard! I see in you us, this could be Australia! There but for the Grace of God go I. We are all in this together, this is a truly cruel world sometimes, but with God's help truth will prevail.

"The Truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is." ~ Sir Winston Churchill ~
  So it's time to play hard ball. 'Go to the matresses' as they say. Have Courage: Strength in the face of grief. To do something even though it frightening.


 


"A man who moves a mountain begins with carrying away small stones"
Confucius ~

We have all dealt with CF, you know what to do, we are used to overcoming all odds right!! xox









Sunday, 13 January 2013

What Kalydeco Has Given to Me

Pseudo... Pseudo What?! Thats right, The 50 shades of green that do stuff in and to our lungs! Insert haunted house voice* Pseudomonas!.

It's possibly: The. Most. Gross. Thing. about having CF!! (for a girl anyway) The problem is if it's in there (our lungs) its causing damage. That's where I'm at. Kalydeco has worked wonders and continues to do so, however, it doesn't turn back time. I'm entering a new stage of my illness that I never thought possible, a gift if you like from Kalydeco:

Possibilities.

Before Kalydeco there was no significant hope to turn back the hands on time on my lungs. 40% lung function, well historically theres no direction but down from there.. As you've seen I have always done quite a bit to support my natural health, but when something 'unnatural' happens (like an accident) recovery time takes someone like me a l o n g  time. Fracturing my rib in 2009 was a down turn for me, quite rapidly too. It's taken years and to be honest Kalydeco came just in the nick of time. I'm not sure how much longer I could have continued putting in so much effort to stay afloat. Transplant was inevitable.... but not so now!

But not so now.... wow.... whenever I sit and really think about it, I feel like getting down on my knees, weeping with relief and such a deep gratitude to the mercy that has been shown to me. I just cannot even begin to express how saying that and then actually having it be true feels like. It's not just a dream anymore, but a real possibility!!! Thank God for this.

"I've conquered hills, but I still have mountains to climb" ~ Tracy Chapman ~

This is my unexpected journey without a doubt, the expected on was transplant in the not too distant future, but now I am seeking ways and means to cure (naughty word I know!) pseudomonas and to rebuild some damaged lung tissue. I've been writing and enquiring with many clinic, centres, professors, universities these past few weeks, I am coming closer to answers about different options. One possibility is Phage Therapy. Another is Adult Stem Cell Transplants. It's made me so Happy to truly Hope again!

A more humble and more immediate possibilities to kick Pseudo to the curb, are a few little herbs and remedies I have an order, with which I am going to hit it hard. I have never tried these things before, so it's going to be exciting new experience to see the results. I will biog about any that work ( and possibly ones that fall short too!). Oh and no more 'mr nice' juice, I will be making my full on compost combo: all for health not for flavour!! 

But with all this I never lose sight of the catalyst of all this optimism and motivation, Kalydeco. It's my Hero, my Champion, my Blessing. (MY PRECIOUS! ha ha! No I haven't gone completely bonkers over it yet, I promise!). Without Kalydeco my life would be cut much shorter. The possibility of seeing my boys grow up was slim. That is all I want from this life, time to be together, I love them so much.... Is there a price you can put on that?

At this historic time hundreds of G551D patients all over England are getting their special-k after a long battle to have their government come to an agreement over the price tag. I look beyond the politics to those suffering day in day out. I have been dumbfounded at the whole process, that it's so removed from those who are battling for their breath. Yes, this is a subjective argument, but it's also a compassionate one. So many heartbreaking stories we've heard from all over, who could deny these dear people? Tomorrow is D-Day for Scotland, to be or not to be... I cannot even believe its a question!!!! I love you Scotland, I am half of you, never forget you are Scotland the Brave!!





We will not be easy with this unbalanced distribution of Kalydeco, all G551D patients desperately need access to it. All CF patients deserve to feel this way!! No Exceptions. It been a long hard battle to get this far, many of whom we've loved (love) and lost... it's a heartbreaking reality of CF as we've know it, Kalydeco is our first glimpse of real Hope for a better life.
Now, this year, it's Australia's turn to fight for Kalydeco, Together we will Stand United and Win this! xo




Monday, 7 January 2013

Me Helpful Herbs

Herbs and Spices have been around since the Earth was created. Not only do they enhance the flavor of our food, they are one of the oldest forms of medicine know to man. When used correctly can be extremely helpful to our health. I have experienced this to be true, herbs played a big part of my growing up.



From the earliest age my mother prepared herbal teas for me which were so relieving for my symptoms, she always had a herb garden and did a herbalism course to maximise her knowledge on how to apply them best. Much like Peter rabbits mother putting him to bed with a chamomile tea, this was my childhood too. Always sweetened with honey and a squeeze of lemon. To this day when I have an awful flu all I feel like is hot herbal teas.



Click on  the name of the herb to discover more....


Sage : The name 'sage' comes from the Latin word "salvare" meaning 'save'. Right back in biblical time this herb was considered the most helpful herbs for health and was indeed the most used herb in ancient times. It's unique healing powers are said to come directly from the Virgin Mary. Sage is soothing stimulant to mucus membranes. Sages assists with respiratory infections, nasal congestion, coughs and sore throats, Also, aids liver and allieviate's indigestion.
        Sage




 Plantain: This funny little herb grows wild in the garden, often looks like a week (must be careful it is in fact plantain, not some other weed!) This herb is especially good for the lungs, Sooths airways, loosens phlegm, helps asthma, relieves whooping cough and tuberculosis.

Plantain



Comfrey: This is a very diverse herb. The leaves and root can be use for different purposes. I had comfrey for bronchitis, pleurisy and digestion. Also as an anti inflammatory.

Comfrey

Mallow: Relieves the mucus membranes of the upper respiratory systems particularly when your suffering from a cold or flu. It helps to calm down compulsive coughing, irritation and inflammation. Anti parasitic. Often grows wild. 

Mallow


Thyme: Thyme has been used since ancient times to ward off infections, it certainly has helped me so many time with respiratory infections or fevers. Has all the benefits of the herbs above, plus works similar to and antibiotic. Thyme contains 'Terpenes' which is know for it's antiseptic quality. (wonderful cooked in reduced red wine sauce, poured over roast beef, delicious!)

Thyme


Calendula: Sweet little flower that helps cut down fungus levels and candida (also know as thrush) levels. Quiet a common symptom after eating lots of sweet things and taking antibiotics.  

Calendulas

Yarrow: Traditionally know as a ladies herb, regulates lady issues (if you know what I mean!). In the olden days was called,"the cure for all ills". A bit unpleasant to taste, I must say, but very helpful.

Yarrow

Catnip: Is yummy! It helps make herbal teas taste good. Part of the mint family it helps to calm nerves, stress and gas!! It's a sedative... and yes cats love it! 

Cat loving Catnip!

Horsetail: Helps to stops hemoptysis.
Horsetail


Nettle: Helps blood. Cleanses and rebuilds blood. High in Iron, good for anaemia. Often grow wild, but be careful, it really dose sting when you pick it! (I wear gloves)

Stinging Nettle

Peppermint: Was found in the pyramids and I think I know why; It tastes good!! It's a very refreshing herb, relaxes and aids digestion. Settles upset tummy's and helps one get off to sleep. It naturally contains menthol which is widely use in cough syrups and lozenges for coughs and colds. 

Peppermint


There you have some herbs that have helped me through those tougher times in life, mostly I made them into herb teas. Bare in mind these are just European herbs, there are so many more to discover from all around the world (I haven't even mentioned spices!) Just this week I have discovered the Ayurveda herb called 'haritaki' which has been proven to kill pseudomonas. I have some on order and I'll let you know if it's spectacular! Keep in mind herbs are a gentle was to combat ailments. Not like antibiotics that bombard the system, herbal remedies build up over time, require patience and very much adapting to symptoms as you go. These herbs can be made into teas, tinctures, compresses or baths. 

To futher discover the amazing world of herbs go to: http://www.mariatrebenherbs.com/. Maria Treben was an expert herbalist from Austria. I have her book and use it continually to find herbal tonics for my health. 




















Thursday, 3 January 2013

Good vs Bad... Bacteria that is!

 


What other creature but Gollum (aka: Smeagol) depicts the fight of good vs evil within us all so perfectly well. He is neither good or evil, but is wretched by the struggle; The ring (power/evil) transforms his character from a decent person to a slithering, dirty, depraved creature. Thus this is how infections work on our lungs, turning our lovely organs to a rotten mess. It is a struggle between good vs bad bacteria. Within our bodies this is our struggle, our fight, our battle and hopefully not to become our end, like the creature Gollum (who succumed to the ring, but 'o to be like Frodo who with the help of his dear friend Sam overcame the rings power)

"Do not pray for easier lives. Pray to be a stronger man." ~ John F. Kennedy ~

Bacteria is the bane of our lives for people to have CF. The bacteria that generally eats away at our lungs is called Pseudomonas. Once the bacteria sets up colonies in our lungs it's near impossible to get completely rid of it. Anti-biotic's atempt to control the levels of it, however once the lung are diseased it's near impossible to not have Pseudomonas present. To be honest it's my Achilles Heel, the antibiotic's are just not cutting it. I know now I have Kalydeco on my side so combating pseudomonas will be 'easier', but not easy!

I have search high and low to combat pseudomonas. Sometimes very effective remedies, some not, but nothing has completely cured me of his tenacious bacteria. I will never give up the search and am currently looking into Phage Therapy. It will mean another expensive trip overseas and now I have other commitments and responsibilities, it is going to be difficult, but not impossible! I just need to find out more information until I commit to this adventure...
*Please if anyone has been a patient or has any information (good or Bad) about the Georgian Phage clinic, please contact me. I appreciate all the information I can get! Thank you.

Natural supplements along the way (along with anti-biotic's of course) have help cut down bacteria levels in my lungs and helped to control the degeneration of the disease. In no particular order these are some of the most effective natural treatment's I have tried: 
*Note all the names are in fact links to find out futher information, happy clicking!

7.) Oxy Drops
13.) Probiotics


For a moment I will focus on Probiotics. They are in fact one of the most important bacterias to nurture in our bodies! Unfortunately antibiotic wipe them out, so we must make efforts to restore the balance, particularly in our gut flora. Probiotics boot the immune system, help digestion, fight bad bacterias, therefore reducing risk of infections. They are like our internal army!! 


This is my Yogurt Maker

Step 1: Fill yogurt container half with cooled boiled water (500ml)
Step 2: Empty contents of starter culture: put lid on and shake like you mean it!! (until culture dissolved)
Step 3: Fill up to top of container with remaining cooled water (makes 1 litre total)
Step 4: Fill maker to red level with hot boiling water, put yogurt container in that. Put lid on.
Step 5: Leave 8 hours, then refrigerate until chilled. 
Bon Apetit!!!

Making yogurt at home is now made very easy with many yogurt makers on the market. This is a short cut version to artisan yogurt (which I'd rather do) but with four boys I have to do what I can manage! This is one of my must have items (like a juicer!) This will help restore the gut flora in conjunction with a good supplement. I know I feel rotten without my good old 'lacto bac'!! 

And so the war inside my lungs will rage on, but I will continue to fight the good fight and never stop seaching for something to remedy this ....

"There is nothing like looking, if you want to find something. You certainly find something, if you look, but it is not always quite the something you were after" ~ J.R.R Tolkien







Wednesday, 2 January 2013

Breakfast, Lunch & Tea.

"Diet's, Like Clothes, Should Be Tailored To you"
                                                                                                ~ Joan Rivers ~

So 'diet',  food etc... Believe it or not I'm not obsessed with the subject! I'm not a fan of "labelling" what I eat a 'diet'. It's normal for me to do what I do, eat what I eat. I eat for pleasure, with every bite I truly appreciate the tastes of everything I eat. I take my time to relax and enjoy the company of those whom I love, whilst sharing a meal or drink.. or both! Unfortunately there is not 'go to guide' for a healthy CF diet. The way I have managed mine is by several means:

My Summertime Brekkie: 1 1/2 cups of plain Homemade Yogurt, with Berries & Maple Syrup

First, when you sit back an think about what it is you live off, everything needs to make nutritional sense, logical, objective reason needs to assess 'is this good for me?'. You are what you eat! Any bad habit's needed to be broken with the discipline of an athlete, likewise awful things that were good for me had to be done for the greater good. Why else would we get IV's done? You just do it, because you have to. That's how I look at healthy choices to begin with, 'I have no choice, it's the only hope of a better life'.

"Respect your efforts, respect yourself. Self-respect leads to self-discipline. When you have both firmly under your belt, that's real power" ~ Clint Eastwood ~

It is hard to begin with to give up 'yummy', quick food. Foods that contain flavours, additives etc are addictive, they seem to make natural foods taste bland... at first! But once you break the habit and begin to really taste real food again, then those highly amp up foods start to taste cheap and nasty!! I cannot even smell fast food now! It make me feel ill how fake it smells.

Second, educate yourself on nutrition. Education is power. When you know better you do better. Take responsibility, take charge, of your health. Just because an intimidating professional is looking at you recommending something objectively 'unhealthy', doesn't mean you have to do it!! Like 'drink Coke for calories'. Wrong! wrong! wrong!!!! It's just plain out bad for you and then to suggest it as 'part of your regular diet'. ????. We need to get back to basics and use common sense.

Just a few examples of the typical CF recommended diet:
- Deep fried chips, objectively are unhealthy for anyone, home baked wedges are a much better option.
- Cheap dairy milk chocolate with all sorts of added ingredients are not good for you, good dark chocolate with natural ingredients is better. Check out my personal favourite chocolates: Willies Cacao
- Sustagen and similar drinks I believe should be off the market when you read the list of ingredients. Make your own protein shakes or calorie filled smoothies with all natural ingredients.
- Sugar... I reduce it where I can. Excessive intake of sugar cause endless problems, diabetes being one. Honey, maple syrup, stevia, agave are all other options, but when I need to use sugar I use raw Castor sugar for cooking. I control the intake by cooking it myself that way I can gauge how much I'm having. Sugar has also been linked to exacerbating cancer.
- Want a hamburger? Make it at home!! Amazingly Delicious Burger Recipe Tastes better than the shop!!
- Fats: This is SO crucial to CF. Good fats help our systems, Bad fats destroy it. Highly saturated & trans fats increase risks of disease. Omega 3 Fatty acids are a huge part of my health management. Pure butter is better than margarine for instance. Again, natural! natural! natural!

You can see the pattern, substitute the crappy ideas/"food", with quality, fresh, healthy ones that contain just as many 'calories', but with good health benefits!! Simple rule of thumb really... Trust me once you get into the swing of it, it's not complex or difficult, in fact it will becomes a pleasure! I love the French philosophy of Mireille Guiliano the author of the fabulous book 'French women don't get fat' suggests,Expose them {your kids} to the widest variety of vegetables and fruits, showing them how good things can be in season. Tasteless fruits and vegetables won't win them over for life.”.


Simple, good food is a pleasure, that's why it's called gourmet!





Happy New year to one and all from me and my Boys Brigade!!
May it be a healthy and Happy 2013 for you and yours. xo