SPEED BUMPS

Life is a funny thing…It is never a smooth ride…all the time…

 

Well certainly not for me anyway!!!

 

There have been moments in my short life that the path I am on suddenly veers to the side.  Sometimes things are complicated for a while, while a solution is worked on, but in the end things seem ok again…and then I follow that road until I hit the next speed bump, to slow me down, or speed wobble to make me pick myself up and turn things around.

 

Just a year ago I was working at an accounting firm as a data-capturer.  After having recovered from a really bad lung infection in the December, my boss allowed me to work ‘flexi hours’ and I had cut my day in half, working mornings only.  This lifestyle suited me and gave me the freedom to work and earn a decent enough salary, but still be able to have days off to go to clinic, see doctors and still have weeks off, lounging around in a hospital bed, being waited on hand and foot – I wish - while I had IV treatment.

 

Then as suddenly, my life changed with a major infection taking over.  I resigned from work and became totally dependent on my parents again…sigh.  My doctors suggested I apply for a disability grant, and the time was right for me, as the government had decided all those on social welfare grants should re-apply.

 

It was not a simple mission at all let me tell you, and to spare you all the gory details I will only enlighten you to the latest chapter…or speed bump in this story.  Just over a week ago I received a letter in the post from SASSA (South African Social Services Agency), which informed me that according to their records I only had a temporary access card and therefor needed to re-register for a grant before the end of April.  HaHa, this after all the PT I had already gone through to be registered and have it approved in the first place.  Time was of the essence as it only left me a few days…one of which happened to be a public holiday and as you know nothing happens quickly in Africa.  JJJ

 

This is where the saying, ‘It’s not what you know, it’s who you know’ came into effect and with all the contacts my parents have built up over this last year in getting my grant approved; just a couple of calls later and a few strings pulled and all seemed to be sorted.  I was given an appointment for Tuesday this week to meet up with someone from SASSA at the payout point in Hammanskraal.  So off we, – my mum and I – went, early in the morning… lugging oxygen cylinder with us.  Another speed bump….the person I was supposed to see wasn’t there and the personnel that were, didn’t know if he would be arriving at all!!!  Contacts again and another phone call, and I was sorted me out pretty darn quick.  Finger prints taken, ID produced, voice recorded on machine, personal details noted and I was ‘A’ for away…as they say.  Oh and now I have the correct card, so I hope this is the last of this chapter and there will be no more twists in the tale that will pop up in the coming months.  HAPPY DANCE and SMILEY FACE…Yah.

 

Needless to say, I am learning in life never to accept what I see, in other words the reality of the situation as it is now, but rather to have faith that there is something better waiting around the corner.  Speed bumps are there to slow us down, make us cautious, look around and see the road ahead.  Sometimes the road turns to the left or to the right…which means I don’t have to always move on ahead accepting what often times is not right for me at that point in time.  I can either stay as I am for the rest of my life or I can change to ‘Mainstay’…sorry that advert just popped into my head as I was typing…No, speed-bumps or not, I will survive, and that’s the way my life is.

 

Fab and Fighting <3

Dear Friends,

With Easter passed and all our other public holidays over for a while, I thought now is the time to update you all on where I am at this present time, health wise.  Before I write any further though, I wish to dedicate this letter to a very dear friend of my mom, KATHY BRODERICK SALGADO, who passed away suddenly on 26^th April.  She was a huge supporter of both me and my fund and through the school that she taught music at, she, and they, collected more than R20 000 for my fund.  So it is with a heavy heart that I write this because, it is friends like Kathy, who are helping me reach my goal.

There has been very little change in my health in this last month.  My stats were slightly lower than when I last went to clinic with my lung function being 1% less and my weight a few hundred grams lighter; HOWEVER, my doctor did not think there was any cause for alarm as I am still well within the range for a lung transplant.  Having said all that, I can feel it is time for me to be admitted again.  My next appointment is on the 15^th of this month and after phoning this morning to confirm, the sister in charge asked me how I am doing.  I told her that I am more breathless and finding exercise more difficult, generally feeling run down, so she said I should pack my bags and take them with me at my appointment time and they will then consider admitting me.

Soooo, as you can imagine, visits to the mall have been fewer and for shorter time periods as I do not have the stamina nor the breath to keep going.  Visits to the coffee shop at the mall to catch my breath, have made me a regular as the waiters all recognise me and guess my order before I even look at the menu. Of course this also has nothing to do with the fact that my boyfriend is one of the managers there, does it!!!  HEHE…. 

 

I have spent very little time with my horses this past month, because of my lack of energy, and I know I will have to do something about that very soon, as I notice that they are starting to look quite round in the rump!!!!  My days have been spent mostly making beaded bracelets for sale for the fund and we have just recently started marketing them.  Here is a picture to show you what they look like.  They come in S,M and L sizes, with or without a butterfly, all with the letters C and F – which stands for ‘CLEARLY FABULOUS’…..no, kidding, it stands for ‘CYSTIC FIBROSIS’.  They are selling @ R10 a bracelet, so please all rush to place your orders.  We have had an order for some bracelets to be a monotone colour which we are willing to do, so if you wish us to do the same for you then specify in your order.  Obviously all bracelets will have the letters C and F in them to show support for the cause. 

                                       May month is Cystic Fibrosis Awareness month and we are doing our best to educate people.  We are putting ‘Did You Know’ facts about it on my facebook group page daily and we wrote some articles for our local newspaper….I keep saying ‘we’, but it’s more my mom than me, I am the ‘delegator’………..lol.  My ‘BEEEEEG’ project will take place at the end of the month and may I take this opportunity to encourage you to participate as I ‘REEAAALLLLYYYYY’ really want it to work.  29^th May is CF ‘Genes’ day….you have to wear your jeans, and or something purple if you don’t have jeans.  Take photos of your friends, get them to take photos of you, involve your work colleagues, friends and neighbours, and then send them to me via email, facebook, or just from your phone to mine.  Let them be fun, because with CF we can still have fun…jump around…pull funny faces…turn upside down…swing from a tree…I don’t mind…just SEND them.  I will then group them together in a slide show to a cool song and post it for you all to see.  n between all this ‘busyness’ I am also knitting scarves.  GlaxoSmithKline have challenged people to knit scarves for winter to hand out to children in schools to help keep them warm.  If you also want to get involved and can knit fairly quickly, then knit some up.  They must be in navy blue, 20cm wide and 1m in length.  Once knitted they can be posted to a freepost address, BUT they must be in before the end of May!!!  Hence, knit quickly….

So for now, this is me, updating you and hoping you keep the winter blues away.

With love to you all and may God bless you in all you do.

Fabulous and Fighting all the way

<3<3 <3 NiQi <3 <3 <3

 

My Addmittance

So I was admitted to hospital for my two week treatment. I have now been home for about 2 months.
 

All kitted  out to walk around the Hospital

The first couple of days were fairly boring as I didn’t have much company but it soon became busy in the ward with the admission of 4 other CF’s too.  Being at Charlotte Maxeke clinic I am meeting so many more CF’s and they are all adults which is great because finally I have discovered that there are other people who go through the same emotions as I do, worry about the same things, battle through the same things and mostly are as ‘normal’ as I am.  We spent late nights congregating in the nurses’ station, playing cards, drinking coffee and chatting about our everyday lives.

Gippie

We spoke about things such as our common Medications and how they make us feel, All our weird habits and how we live our day to day lives. ( Being more gassy than normal people), It was a huge laugh to hear about all our indiscretions. I am soooo relieved to know that I am not the only one who can let go such a vile wind that people have to evacuate the room. Lol.  As embarrassing as this all may be, it is the truth, and it is nice to share that with other people.



Gippie and Willem

Another topic which Charlene, Willem , Marlu, Gippie and Myself got quite stuck into was Lung Transplantation. Listening to their views and opinions made me think, what makes each person different? How can we all have the same disease and lives such Similar lives, yet we all have and want different outcomes? It baffles me.

The night of our great discussion, time seem to fly by, one minute it was 10pm, the next, it was 3am, we made a joint (but very foolish) decision to stay up till 6am, as we all had to put on our next round of drips. We had it all planned out, we clean the office and erase ANY evidence of that nights escapades by 5:45am, we would then innocently meander to our bedroom, close the doors, and SLEEP for the rest of the day.  HA!!!! Boy was I wrong, at 7 am, our lives become hell and we were officially in the FurLOngers Prison of War Camp 496. 

“GET UP GET UP, OPEN THOSE CURTAINS, MAKE YOUR BEDS AND SIT IN YOUR CHAIRS”; was the order being thrown around by Drill Sergeant Furlonger. .. Yes, we had been busted! Our punishment was now to remain awake ALL DAY LONG, and we were not allowed near our beds. Willem and myself were so desperate that we were willing to sleep in the bath! Oh how we were regretting that decision to stay wake till 6am. To make matters worse, we still had to do Physio, and we had students which meant they were going to make us do EXERCISE… (GASP!) Barely making it through the day, we acted all chipper around the staff, just to show them we are strong.  That night, by 7 pm we were all ready for bed. Well, most of us. I say most because, during the course of the day, Charlene and I went down to the Cafeteria in a Zombie like state, searching for sustenance. We found our source in 2 sachets of Turbovite, 4 cups of coffee, cans of coke and A LOT of sweets. You guessed it, I had Overdosed on Caffeine, and I couldn’t fall asleep, my heart was racing, I had palpitations, I was hot, annoyed, my hands were shaking, and I kept tossing and turning. L With copious amounts of water to flush all the caffeine out of my system, I was finally able to fall asleep at about midnight. As fun as that experience was, I do not think that I will be wanting to relive that again.

Marlu and Myself

I left the ward 2 weeks later, sadly not as well as I had hoped.  November last year was a milestone for me in improvement and I hoped that I would come home feeling the same way.  The fact that I have resistance to so many anti-biotics and that I now have 2 different pseudomonas cultures present in my lungs, is making treatment more difficult for my doctors.  I came home with a 2 week course of Ciprobay to help and hopefully alleviate the shortness of breath I have at present.  The course has been completed and I still do not feel any better.  That being said, strangely my stats improved slightly again and my lung function on release was 33%.  The X-Rays look better and are not showing as many patches throughout my lungs as they have done in the last few years.  My weight is not doing as well though and I have lost a few kg….eeek – not a good sign!!!!

The trust fund is looking good and slowly increasing.  I have to thank my great aunt in the UK who has spent many hours making bottled jams etc and selling them in aid of the fund, as well as holding a raffle.  Pounds converted to Rands, makes for a tidy little conversion and over R6000 has so far been banked for me.  I am so blessed to have so many people, interested in me and concerned for my well-being.  My mum is trying to get a team together to ride in the 94.7 radio cycle challenge, which will be held in November this year. And my mum’s friend is organising a concert with the Pietermaritzburg Orchestra of which she is a part.  We are also planning to make beaded bracelets, bookmarks and keyrings to help boost the fund.  May 29^th is the SACF Association ‘Genes’ day….I’m giving you all fair warning to wear your jeans and something  purple on that day.  I am planning to make another slideshow as I did last year, but BIGGER and BETTER!!!!!……………….so take photos, short videos, of you and your family and friends dressed up on that day, send them through to me, and I will make them into a compilation of fun and frolic in support of CF. 

I hope you all enjoyed my post.

NiQi, Fabulous and Fighting always  <3

P.S. We wore Masks :-) Just hid them for Photos
 

  My Bone Density is all good again.

 What my Lungs look like
 

What can I say??

                                                                      
I had planned to do a blog today on something completely different to this, but decided that not always does this blog have to be about me, but sometimes it can be about those close to me….for that reason I dedicate this item to one of my dear friends and all who have a ‘battle’ they are fighting in their lives.

Late last night I heard heart-breaking news concerning someone very close to our family who has been fighting cancer for the last 2 years.  After so much treatment that has made her change her lifestyle completely from all that she is used to, she was recently told that the cancer has spread.  She is not a likely candidate for cancer at all having always eaten the correct foods, to the point of denying herself sweets and anything richly delicious, consuming 2 litres of water daily, and kept herself fit with squash and walking.

I have known her for most of my life and she has played a huge role in my spiritual development as well as those of many other youngsters for whom she has been a wonderful role model.  She is one of those ‘fun’ adults….a parent that kids don’t mind hanging out with.  She has a huge smile that is always quick and ready to give to anyone she meets and a laugh that is infectious.  Her eyes tell a million stories and she is so accepting of everyone.  She doesn’t gossip and is truly interested in the person she is talking to…before you realize it, you have spent an hour talking about you and not asked a single question about her and how life is treating her.  She knows just how to interact with the younger generation but at the same time shows what is acceptable behaviour and when not to overstep the boundaries.  She is an organiser of note and unselfishly has the needs of others at heart.  For many years she ‘rallied up the troops’ in making Christmas boxes for orphaned and abandoned children, making sure that all were catered for….and she has a generous heart too, often giving on more than one occasion to people she really felt has a need.  She is in my opinion an unsung hero…a child of God…a friend…a wife…a mother…a sister…a daughter…important to so many but humbled in her demeanour.

Now she needs us…all her friends and family and even you who is reading this blog.  She needs your prayers…prayers for comfort, prayers for peace, prayers for understanding, prayers for healing.  Please, wherever you are…whoever you may be, will you send up a prayer for her and her family.

I open my heart to you all with tears in my eyes, sending this request.  Please just say a prayer and send your love…I know she will feel it.

STATISTICS AND CAUSES

In the week I read a post on facebook that mentioned a couple from Texas, USA, who celebrated the arrival of 4 new babies born simultaneously to them… naturally…ie. without any IVF treatment.  They were not quadruplets, they were 2 sets of identical twins…a phenomenon that happens once in 70 million births.  Isn’t that incredible…I mean really that is amazing.  Just imagine being a part of a statistic like that.

That started my peanut size brain thinking about statistics…and in South Africa we are always being bombarded with the like aren’t we, but if we take a look at just a few medical statistics it can get a person wondering how awesome is our God to create us just the way we are.

My cousin has a son who was born with ASAL – Arginiosuccinate acid lyase deficiency and statistically this occurs in 1 in 70 000 births.  I’m sure you won’t know what it is and seriously I still don’t understand it, but if you want to know more you can always Google it…hehe.

As you know I was born with Cystic Fibrosis…YAH, I’m so special and not boring like the rest of you – lol, but anyway Cystic Fibrosis is one of the most common recessive gene diseases, occurring in one in 3000 births.  I always thought that I was quite rare, haha, until I realized that there are some diseases out there that are way more unknown.

I also heard the other day that one in 600 people are diagnosed with cancer sometime in their lifetime. Bearing in mind that cancer is diagnosed more often than cystic fibrosis is, would explain, well in my mind anyone, why so many are supportive of cancer.  The chances that they have met or known someone with cancer is far more likely than meeting or knowing someone with CF….yet CF remains one of the worst known diseases to suffer from and is not at all curable.

Obviously whatever lies close to your heart will be what you decide to support and canvas for, even if it’s to ‘Save the Whales’….you may never have seen a whale, let alone touched a whale, but if you are interested enough in their well-being, think of them as beautiful and majestic, it might just be enough for you to fight against injustices against them.

I myself am a huge animal lover, whether domestic or wild, I am fascinated by all creatures both great and small….so I am always willing to offer my support to those that can’t speak or protect themselves. 

Naturally the biggest cause closest to my heart is Cystic Fibrosis.  I have a vision that cystic fibrosis will one day be on the lips of people like cancer is today.  If I can help create awareness in even the slightest of ways, then I will have achieved something worthwhile with my life…..so keep on loving, keep on supporting, keep on helping where you can.

This is me Fabulous and Fighting till next time.