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Thursday, May 9, 2013

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

Wednesday, May 8, 2013

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 26th 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 15th 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.  29th 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