Hey Everybody. At long last I have finally uploaded the photos. Well, it is a slideshow of the videos, sorry for the bad quality, but it was really big to upload so I had to decrease the quality. I will put the pictures on the blog asap.

Thank you to everybody who participated in this special day. You do not know how much it means to me.

I hope you enjoy it.

So for today: this is NiQi . . . Fabulous and Fighting ♥♥

CF Awareness Month

Day 5:

                                                                                                                               

Hello everybody.

Well today has been an excellent day if I say so myself. I have had such an amazing response to my Fb campaigning, I am just overwhelmed with joy.

Now if you haven't seen, or heard, May is Cystic Fibrosis awareness month.

On the 23rd of May 2012, it is CF awareness day! Now this day is called "CF GENES DAY". What happens is you get to wear your favourite pair of "Genes" to work, or at home, or wherever you go out, Compliments of the CF sufferes, Have this day on us :-).. What would however be better is if you could wear any Purple item, whether it be a scarf, a hat, a shirt, your socks, or even a little purple ribbon.  The colour of cystic fibrosis is PURPLE.. That is why it is my favourite colour. I wear it as often as possible. People who see me often come up to me and say "Nix, why do you wear sooooooooooo much purple? Don't you have other colour clothes?" Haha well Yes friends I do indeed have other colour clothes, but I am supporting this disease, everyday. I am proud to wear purple and to show the world I support it.

For those who know me, when I Have an idea in my head, I will follow through with it. So I got this idea in my head today that made me think, A little something like this " YOU KNOW WHAT, this year I AM going to do something more to help create awareness about cf. You know what I am going to do?? I sit at work day in and day out, just look at how many people there are around me. People are resources, why not use them?" So I printed out a whole lot of flyers and posters about the CF day, and I firstly handed a flyer to every single person in the office, I even went and stuck up a poster in the ladies bathroom,( I would have put one in the mens bathroom too, but I was a little bit afraid of  stepping into that territory) hehe. As I was leaving work, I looked around and I thought "HEy look at all these cars, why not put flyers on their windscreens?" So I put flyers on a few of the windscreens. Tomorrow I plan on printing more and going and putting them on every single car in the staff and the visitors parking lot.

My sneaky idea is to somehow post my link to the jacaranda website, you know the Pretoria radio station? They have this thing called "good morning angels" where if they think it is a good cause, they might just read your story to the city and help you out in anyway they can. You never know, they could donate money to research for a cure. That would be amazing.

To those of you, who are as fired up and as eager as I am about making people aware of CF, why not take this photo that I put up, Print a few copies, Do what I did, see a chance, and take it. One piece of paper could change a Nation. One piece of Paper could change the world :-)

Come on everybody, lets turn Facebook Purple for the rest of the month ...

So for now, this is NiQi, being Fabulous and Fighting. :-D

The Definition

Day 4:

Hey everyone. I thought that I would just give you information about Cystic Fibrosis. Now this is not my own personal writings. I have taken this from A CF website. I do hope that you find it insightful, and I hope it helps you understand just a little bit more about textbook knowledge of CF in a whole.

 This is me for tonight, Fabulous and Fighting...

Causes, incidence, and risk factors

Cystic fibrosis (CF) is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.
This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man's reproductive system.
Millions of Americans carry the defective CF gene, but do not have any symptoms. That's because a person with CF must inherit two defective CF genes -- one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It's more common among those of Northern or Central European descent.
Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease.

Symptoms

Symptoms in newborns may include:

• Delayed growth
• Failure to gain weight normally during childhood
• No bowel movements in first 24 to 48 hours of life
• Salty-tasting skin

Symptoms related to bowel function may include:

• Belly pain from severe constipation
• Increased gas, bloating, or a belly that appears swollen (distended)
• Nausea and loss of appetite
• Stools that are pale or clay colored, foul smelling, have mucus, or that float
• Weight loss

Symptoms related to the lungs and sinuses may include:

• Coughing or increased mucus in the sinuses or lungs
• Fatigue
• Nasal congestion caused by nasal polyps
• Recurrent episodes of pneumonia. Symptoms in someone with cystic fibrosis include:
  
  • Fever
  • Increased coughing
  • Increased shortness of breath
  • Loss of appetite
  • More sputum
• Sinus pain or pressure caused by infection or polyps

Symptoms that may be noticed later in life:

• Infertility (in men)
• Repeated inflammation of the pancreas (pancreatitis)
• Respiratory symptoms

Signs and tests

A blood test is available to help detect CF. The test looks for variations in a gene known to cause the disease. Other tests use to diagnose CF include:

• Immunoreactive trypsinogen (IRT) test is a standard newborn screening test for CF. A high level of IRT suggests possible CF and requires further testing.
• Sweat chloride test is the standard diagnostic test for CF. A high salt level in the patient's sweat is a sign of the disease.

Other tests that identify problems that can be related to cystic fibrosis include:

• Chest x-ray or CT scan
• Fecal fat test
• Lung function tests
• Measurement of pancreatic function
• Secretin stimulation test
• Trypsin and chymotrypsin in stool
• Upper GI and small bowel series

Treatment

An early diagnosis of CF and a comprehensive treatment plan can improve both survival and quality of life. Follow-up and monitoring are very important. If possible, patients should be cared for at cystic fibrosis specialty clinics, which can be found in many communities. When children reach adulthood, they should transfer to a cystic fibrosis specialty center for adults.
Treatment for lung problems includes:

• Antibiotics to prevent and treat lung and sinus infections. They may be taken by mouth, or given in the veins or by breathing treatments. People with cystic fibrosis may take antibiotics only when needed, or all the time. Doses are usually higher than normal.
• Inhaled medicines to help open the airways
• DNAse enzyme therapy to thin mucus and make it easier to cough up
• High concentration of salt solutions (hypertonic saline)
• Flu vaccine and pneumococcal polysaccharide vaccine (PPV) yearly (ask your health care provider)
• Lung transplant is an option in some cases
• Oxygen therapy may be needed as lung disease gets worse

Lung problems are also treated with aerobic exercise or other therapies to thin the mucous and make it easier to cough up out of the lungs. These include a Percussion Vest, manual chest percussion, A-capella, or TheraPEP device.
Treatment for bowel and nutritional problems (see: Cystic fibrosis - nutritional considerations) may include:

• A special diet high in protein and calories for older children and adults (see: Cystic fibrosis nutritional considerations)
• Pancreatic enzymes to help absorb fats and protein
• Vitamin supplements, especially vitamins A, D, E, and K
• Your doctor can suggest other treatments if you have very hard stools

Care and monitoring at home should include:

• Avoiding smoke, dust, dirt, fumes, household chemicals, fireplace smoke, and mold or mildew
• Clearing or bringing up mucus or secretions from the airways. This must be done one to fours times each day. Patients, families, and caregivers must learn about doing chest percussion and postural drainage to help keep the airways clear
• Drinking plenty of fluids. This is particularly true for infants, children, in hot weather, when there is diarrhea or loose stools, or during extra physical activity
• Exercising two or three times each week. Swimming, jogging, and cycling are good options.

Expectations (prognosis)

Most children with cystic fibrosis are fairly healthy until they reach adulthood. They are able to participate in most activities and should be able to attend school. Many young adults with cystic fibrosis finish college or find employment.
Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with CF who live to adulthood is approximately 37 years, a dramatic increase over the last three decades.
Death is usually caused by lung complications.

Complications

The most common complication is chronic respiratory infection.

• Bowel problems, such as gallstones, intestinal obstruction, and rectal prolapse
• Coughing up blood
• Chronic respiratory failure
• Diabetes
• Infertility
• Liver disease or liver failure, pancreatitis, biliary cirrhosis
• Malnutrition
• Nasal polyps and sinusitis
• Osteoporosis and arthritis
• Pneumonia, recurrent
• Pneumothorax
• Right-sided heart failure (cor pulmonale)

Calling your health care provider

Call your health care provider if an infant or child has symptoms of cystic fibrosis.
Call your health care provider if a person with cystic fibrosis develops new symptoms or if symptoms get worse, particularly severe breathing difficulty or coughing up blood.
Call your health care provider if you or your child experiences:

• Fever, increased coughing, changes in sputum or blood in sputum, loss of appetite, or other signs of pneumonia
• Increased weight loss
• More frequent bowel movements or stools that are foul-smelling or have more mucus
• Swollen belly or increased bloating

Prevention

There is no way to prevent cystic fibrosis. Screening those with a family history of the disease may detect the cystic fibrosis gene in 60 - 90% of carriers, depending on the test used.

Communication

Day 3:


Now I will admit, relationships are not the easiest thing around. I have had my fair share of bad relationships. Just recently my relationship didn't look very promising. It was sitting at that stage where we would either break up, or stay together. From this whole thing I have learnt that communication is key. One of the fundamentals within a relationship is being able to speak openly and honestly. Being able to communicate , and have an open mind to what your partner has to say, you know, taking criticism and using it to help change situations, brings you closer together in the end. Being able to tell your partner what irritates you about them or what is bugging you, is something worth doing. For instance, "Honey, we need to carry tick tacks for those days were our breath is not its freshest. haha".

This got me thinking, yet again, about my, and many other CF's situations with Medical aids. You need to have an open relationship with your medical aid. However, the biggest problem for me at the moment is trying to find a medical aid who will support my existing condition. Firstly the biggest speed bump with 99% of medical aids is that with a preexisting condition like Cystic fibrosis is that you cannot claim anything for the first year. Which is all good and well, EXCEPT, the hospitals IMMEDIATELY list you as a Private patient and will no longer treat you , or give you your medication as a state patient. Which in turn means that for a year, my parents will have to fork out R50 000 EVERY MONTH, for medications, and even more if I have an infection and need to have treatment.Please tell me, who on Earth has that kind of money lying around?

I remember at the beginning of the year, when I had been so so ill and my parents thought my time had come, my doctors first approached me, and told that it is now time to start looking into the possibility of a double lung transplant, they said to me that I will have to start going to Jo'burg General when my medical aid kicks in because they somehow are able to help out in that first year of not claiming. My mom immediately saw a giant red light.. " jo'burg is an hour and a bit drive from where we live, what happens if I suddenly get sick and need immediate treatment, how will my parents be able to visit me everyday like they can when I am at Steve Biko.

The one Doctor then turns around and says to my mom and I , "well why don't you just move to Jo'burg?" .. MOVE TO JO"BURG!!! haha are you kidding me? Um hello, we are not just going to uproot our lives in Pretoria to go live in the city. Firstly we are farmers, where and what would we do with our animals? Secondly my dad will go crazy as he cannot stand the city life. My dad is a farm boy through and through. Then thirdly, having that extra financial burden of having to already pay a bond, a medical aid, plus the rent for wherever we are now staying in Jo'burg. Oh, and lastly, has anybody every actually thought about how bad the air is in JHB? It is a death sentence. All the pollution would just make me sicker.

So anyways after this whole story, Professor Green scheduled an appointment with this Doctor at Milnpark in JHB, to do an assessment so they can see if I am a good candidate for the transplant.. (Milnpark is similar to mediclinic, just a lot bigger and better.) Mom, dad and myself were siting in the waiting room, waiting for the doctor to see us. Mind you our appointment was for 2pm, we only went into see him at 4 almost 5pm odd, We did the whole assessment and Doctor said that I am a very good candidate, I have come at the right time. Now inevitably he asked how we plan on paying for the transplant. We said that we are looking into medical aids, but we were also thinking of doing fund raising. Now everyone we spoke agreed with us that it was a brilliant idea. No only would it  be fulfilling I could raise my own funds, but it would also be making people aware of what Cystic fibrosis is.  The Doctor immediately put his foot down, so to say , and told us flat out NO! Do not do fund raising. That did confuse us a bit, I mean who is this person telling us not to do fund raising for my lung transplant.

To this day, we are still looking into medical aids. It is most defiantly not the easiest thing to do. There is alot of paperwork involved, and most of them don't cover everything. So at the end of the day, you land up paying for most of the treatment and medication out of your own pockets.

I know this post is probably all over the place, and it might not make any sense, but it is late , so you will have to forgive me this time. :-)

Sweet dreams everybody. If you have any thoughts or ideas on the fund raising or Medical aids, please feel free to comment.

This is me, Fabulous and Fighting. :-D

Missing in Action

Day 2:

Today was a rather interesting day. I woke up this morning to find that the power was off. Not the most ideal thing to happen, as I could not do my Nebulizer. So all of today I have been feeling a bit off colour, tight chest, short of breath.
The second thing I found out this morning is that Smokey (my cat) had disappeared. He normally arrives back home at about 6am from his nightly escapades, and then makes himself  comfy to sleep the day away. Now Smokes is no ordinary cat, he is one of a kind, if he is outside and you call him, he will come running back to you. He absolutely love cuddles, he doesn't chase the birds, he just loves being around you.

At about 7:30am I said to Mother that I think I need to stay home and wait for smoke, otherwise if the dogs are outside, and smokey arrives back home, they will kill him. I was most definitely not taking that chance. So mom went off to work and I took up residence on the front veranda in my PJ's with a Colouring book, every second that I could, Calling for smokey. Eventually at about 2:30 pm (8 hours of calling and being besides myself)  mom phoned saying she is on her way back home, and has Smokey arrived home yet? I told her no, we then had a few moments of crying. At about 4:30 pm our neighbour Nimmie phoned and asked us over for a cuppa tea, and to see her latest wedding cake designs. So mom and I fed all the animals and headed straight over to Nimmies'.

When we got home, the first thing we noticed was that something had eaten from Smokey's food bowl. Immediately we started calling for Smokey and to our relief, there he was, sitting in the passage. Man, did we shower him with hugs and kisses. SO glad that he is now home safe after 14hours of being AWOL!

This whole story got me thinking about something that happened to me a few years ago. I have certain times of the year where my CF is a lot worse than other times. Generally in Winter time I am healthier than that other seasons. I guess that it is because there isn't alot of pollen around. Pollen seems to trigger my asthma which in turn triggers my CF. Anyways getting back onto topic, Over the past 7 years, every year my lung functions seems to decrease by 10%. About 3 years, or it could be actually 4 years ago, I was sitting at Steve Biko in the Doctors room. I unfortunately cannot remember the doctor who I was with. But she showed me a scary realisation. She said to me, that looking at my lung functions, with them decreasing by at least 10% every year, I would not live to see two years later. I had just been served my death sentence, right on A silver platter. It was really worrying and Scary. I will be dead in two years time. It really hit home and from that day onward I decided to take better care of myself, I really didn't want to die. So I at long last finally got my A into G, ad started looking after myself, taking all medication, doing my nebulizations, having my daily physio, eating right. It was a really big adjustment, as I had always just done the bare minimum, I had always said to myself "I have always been so healthy, I won't die, I cannot get sicker". But in actual fact, I was getting sicker.

With this change in attitude, I am still here today. Yes I am still getting recurrent chest infections, but that is the normal part of CF, the deterioration of the lungs. But I at least have helped the disease NOT progress anymore.
I do not think I would've been able to do all of this without the support of my family and friends. One of the biggest set backs within a Cf family is that the Cf Sufferer does no have a support system, so therefor they eventually give up because there is no one to give them that push and that support.

For me, I have that and I am so grateful that there are so many people who care about me.

I just want to tell every CF sufferer out there that there is always somebody who will support you. Never give up. You have many Fellow Cf sufferers who know exactly what you are going through, and even though we cannot speak to each other face to face, there is always a form of communication. So stay strong and never give up. You are an Inspiration.

So this is me once again, for today,Fabulous and Fighting.

Good night everyone.

"The Why and the Purpose"

This is how it all began.....

" I need a name for my blog!" I procliamed to TIff,
"You have a blog? uhm ok. something about nuts?" said my dearest Cousin with much surprise and enthusiasm.


Now you are most probably wondering what on earth has possessed me to start writing a blog? "Maybe she's crazy?" you think, "or Maybe she just likes writing?".

Well let me help you out there, it would be non of the above, I in fact do not enjoy writing for the most part, and I am not crazy, well, not all of the time

I have always had this thought that I should write a blog because so many things happen in my life that are worth capturing, whether it be on paper, in a photograph or on a blog.  My aim in the long run is to keep everybody posted about my life, and the life of others I know that struggle with a disease called Cystic Fibrosis.
I may not be able to post something everyday, but I will sure try my hardest.

Let me begin with my first actual post!

Day 1:

Well today started off like any other ordinary day at the Lucas farm, wake up at 5:15 to do my nebulizations and breathing exercises. At 6:30 I crawled out of bed, ( yes you guessed it, I overslept), dragged myself to the backdoor and let out purdy and Trinity (my two dogs), as soon as that ice cold wind hit my face, I was so to say AWAKE! I bundled myself up and decided to brave the elements. I schlepped across the lawn to Mom and dads house to make that very much needed first morning cup of coffee.  Dad is on his way to KZN today, so mom is running late herself, trying to make yummies for the road, and pack dads suitcase, so inevitably we were late for work, but only just. Nothing exciting happened at work today other than the fact that it was someone's birthday and we got cake, which tasted like cardboard.

Mom and I gritted our teeth on the way home from work, for as sure as the sun rises in the morning, the petrol light was bound to grace us with its presence. Luckily, it only decided to appear when we were close to home. Whilst driving up our driveway, we noticed this old haggered figure just lurking around, now the first thoughts in our minds were, it must the boogy man! haha No no I am just kidding, it was our neighbour, she had come to fetch water from us, because their boreholes don't have water in them.

And so far that is my first story of the day. If anything exciting happens later, I will defiantly have to write about it!

So for now, This is NiQi, being fabulous and fighting**