The Hospital Vortex

I had to reblog this as it gave me the best laugh for a while.

It also shows that it is possible for clinic visits to actually go smoothly.

We have had one such clinic visit at the Mater hospital go like this. Our heads were swimming at the fact it went faster than a standard doctors visit.
Yes we saw everyone on the team this day and was in and out of clinic in just over a hour rather than the standard 3-6 hours to virtually see noone.

Some days reallya re diamond and exceed your wildest expectations.

Looking forward to actually lowering my expectations of what i beleive should be and to be more pleasantly suprised when my low expectations are exceeded.

#Jalanrox

capturing cf

The other day Dave spent more than ninety minutes waiting for medications to be dispensed at the hospital pharmacy. Everyone I’ve told simply can’t believe how long we needed to wait. And they have a point. If we go to our local pharmacy it takes about ten minutes to fill our scripts so why should the hospital pharmacy take over nine times longer?

The answer, of course, is The Hospital Vortex. Once you step into The Hospital Vortex things take much longer and are more difficult than they really need to be. The way to cope with The Hospital Vortex is to manage your expectations. Assume the worst and your expectations will either be met, or hopefully, exceeded.

The examples of expectation management that immediately spring to mind are so numerous that I hardly know where to start. Allow me to sift through and present a few choice ones.

When waiting for pain…

View original post 597 more words

Advertisement

10 Things I Dont Understand

After reading a article on a blog by Peter Pilt (who i follow literally religiously) Well he is a Pastor after all,  he invited people to put their thoughts in the comments, I decided to do my own blog on this with a slight difference because I would not be able to add what I wanted to say.

1. I DON’T UNDERSTAND…………….

  •   How on earth what you are about to see happened.  This is a simple safe dual lane stretch of road at Varsity area.  It is 2 lanes each way in a 80 zone.  It is a literally a nice piece of road. It is a road i travel on a regular basis.   I don’t think it was wet at the time like it shows in my pictures but i don’t know for sure. It is on Bermuda Street, Mermaid Waters/Varsity area.
  • You can just see in this picture part of what I am about to show.SONY DSC
  • SONY DSC

    A vehicle on its roof on the side of the road.

    SONY DSC

    Nicely mangled

    SONY DSC

    I don’t know the circumstances leading up to this or what happened but i truly don’t understand.  The sheer damage to the vehicle makes me think it rolled and/or flipped a couple of times before coming to land in this position.

  • The possible senseless loss of lives or the maiming of innocent passengers.  Obviously something happened on this little safe stretch of road to cause this.  Was it a drunk driver?  Was it a tired driver?  Was it someone who decided that they couldn’t wait to answer a call or a text.  Or was it someone or soemthing else that caused the crash?
  •  I don’t understand why people who drive don’t take more care on the road regardless of where they are.  You are in control of a couple of tonne killing machine.  There is literally inches of rubber between your safety and the road.  The road toll is way too high.

2. I DON’T UNDERSTAND…………….

Why people feel the need to USE people and LOVE things rather than the other way around.  It is not hard to use things as they were intended to be and to love or love on people.  I know some are hard to love somedays but those are the times we need to love them more.  Sit and think about why they are hard to love.  What has been done in the past to cause them to become the way they are.

I once received a CD from a very special friend of mine Tiffany.  She made me cry with the inscription she wrote in the CD.  “Loving you is as easy as breathing”  Such simple words but they meant so much to me.  More than she realised.  They lifted me up and gave me wings to fly and soar.    So many people over the years had broken me down to where i felt that I was not worth anything.  How many others are the same.  How many stories are out there of people ready to just give up on life and someone said something to them that made them realise they really do matter.  Just a few simple words might just mean the world to someone who is struggling.

3. I DON’T UNDERSTAND…………….

People that say they are broke and then go spend a small fortune on things.  Usually not even on things they actually need.  To me broke is broke.  It means I dont have money to go buy a loaf of bread or a bottle of milk.

4.  I DON’T UNDERSTAND………..

People that get on free sites such as freecycle and PIF and other sites and claim they are so desperate and need everything for free.   Beautiful generous souls give all they can to these people as they know what it is like to go without, only to find out the peron has gone and sold the item.  It breaks you down when you see it time after time.   It breaks down the trust and goodness you see in people.   When caught out the people just lie and make lots of different excuses.   .

5. I DON’T UNDERSTAND…………….

People that aren’t grateful for what they have.  Why they always need more.  Why even when they have the best of everything still aren’t happy.  All they ever need is MORE MORE MORE.  Nothing can ever satisfy the wants in their lives.

6. I DON’T UNDERSTAND…………….

Why people have to compete at christmas time.   Why they spend more than they can afford just so they can buy presents for people who don’t even want them.  Why they don’t pay bills and get themselves into financial problems just so they can make it look like they are rich with all the gifts they lavish on thier children and friends.

Try getting back to the true meaing of christmas and spend time rather than money.  I would rather spend time with my friends, family and loved ones knowing they are not going to struggle because they have brought things for us.

We started a tradition of giving experiences rather than presents.  Your budget determines the experience.   What parent wouldnt love some time out.   Instead of spending money on your sister, brother, friend why not take their kids to a park or a beach for a picnic or some fun time together.  Not only do you get to spend time with them, you are also rewarded with them getting to know you and having fun making memories.

If you have a small budget for gifts why not jump on Groupon or one of the other sites where you can get tickets to a attraction for low prices.  One year we got tickets to a haunted house and a game of mini golf for each of the neices and nephews.  Two excursions out,  cost us $12 each child.   We had a amazing time and they still talk about it 3 years later.  Any of the gifts we had given them were forgotten about along with all the other presents they got that year.

7.  I DON’T UNDERSTAND…………….

Why people say “it’s just asthma or sinus” when you hear them cough.   When will they realise that this “just a cough” could be so dangerour or deadly to a immunecompromised person.    Why can’t they cover their cough or turn away from others so that they don’t spread their germs to other people.

OK yes i am paranoid about coughs due to my daughter with Cystic Fibrosis.  It is amazing how many people will say these things when you can hear that it is the start of a infection with the tell tale chunky wet cough.  Yep a CF parent can diagnose a cough 20 miles away with pin point accuraccy.

8. I DON’T UNDERSTAND…………….

Why when you help people they turn on you when small things goes wrong.  Why they get so nasty and vindictive and run you down.

Recently we made the decision to have a family friend of over 10 years children (aged 16 and 9) stay here as they were in the process of moving from Melbourne to Brisbane and hadn’t organised new acommodation up here.  We were going to have the children while the adults found a new home so they could have some fun and relaxation instead of being dragged around looking at properties.   After being up here for 2 days and a lot of plans falling through my friend and her partner ended up homeless.  We offered the adults our camper trailer to use at a caravan park the same as we did when we sold our previous house and was homeless while waiting for the contract on our new home to settle.   They felt this was a two bit gravesite and too expensive a option for them.

We gave them Jalans room in our 3 bedroom townhouse.  She slept in with us.  Due to the fact they smoke this was a huge decision for us because of Jalan.

The rules were discussed before they stayed.   Main ones being that they go outside for their smoke and have a set of “smoking” clothes” which they were supposed to change into.   Upon coming back inside they were to change clothes and wash their hands and preferably clean their teeth to minimise the risk.  Also no food or drink in the upstairs bedroom. Hand hygiene after toileting and before entering the kitchen is also a must regardless.

Needless to say these rules weren’t followed and we got a bit stressed out due to  the fact our daughter started coughing and vomiting.  It all built up over a week and after a incident and in the heat of the moment I said (ok I yelled) I felt they needed to find somewhere else to live fully meaning the 2 adults as I could not deal with the smoking anymore.  They took it as meaning all of them.  They packed up and left.

Within hours of them leaving the male attacked us on Facebook running us down and accusing us of a lot of different things and untruths including throwing them out onto the street with the children and attacking our “Christian” attitude and the way we parent and saying we were paranoid with our daughter and we needed help.   (We probably are to most families without sick kids) It got to the stage where my husband Darren who is usually so quiet and non confrontational, as anyone that knows him, attacked back with a truthful but nasty comment.  Needless to say we blocked and deleted them all as we dont need their negativety in our life.

After attacking us and ringing all our Cystic Fibrosis organisations to try justify the fact their cigarette smoke could not have harmed our daughter to make themselves feel good and telling us we were idiots that didnt know what we were talking about, they then expected us to bend over backwards still for them.  I express posted my now ex friends wallet to her as she had left it behind.   I did not want to cause them any undue hardship.  She actually accused me of not being a very good friend when I said I wanted nothing more to do with them.

They still expect us to forward all their mail to them so they don’t have to pay for a redirectory order.  What we have received we have put not this address try this address with their forwarding address on it.  We are now being accused of not forwarding their mail due to a letter with his new QLD licence in it not arriving.  I packaged up their belongings they left behind and let them know.  They recently came down and collected their stuff.   Once again asking where was the missing letter.  We cannot answer what happens to a letter after we put it into a mailbox.

Why can’t these people realise we no longer want them in our lives and just leave us alone and be happy with their own life.

Why do they feel the need to keep texting us accusing us of more rubbish.

They think for some reason that I am angry at them and trying to accuse them of damaging my daughters health.  Only person I was angry at was myself for compromising what I beleive is safe for my daughter and allowing them to stay here being that they are smokers.  It is our choice to keep her in a non smoking environment and I compromised on this.

Without their personal attack on us we could have possibly sorted through it and remained friends.   After the attack we have no desire to remain friends with the family and after all this time it is very sad.

It has made me re-evaluate our life and close ranks just a little bit and make our home our private sanctuary.   We are now making the decision whether to have people stay over again or not.   We feel our lifestyle was threatened and need to make our home as comfortable for us as we can.  We do not need to justify our choices to anyone but ourselves and God.

I now understand one of my friends policies where she meets everyone at a park or a coffee shop or something similar when they want to see her.   She keeps her home private.

9. I DON’T UNDERSTAND…….

Why people always want to get revenge.

10. I DON”T UNDERSTAND………..

Why this blog has taken so long and been so hard…….

Thanks Peter…….

The Day the Elves Came To Visit

Hi Jalan,

We are special visitors from the North Pole where we have been busy helping Santa make toys.

As you know all of us elves pretty much look the same so Santa whos brain is a bit silly decided to name us all the same

He named the boys Buddy (don’t you think this is a pretty silly name?? cause i do. ) After all Buddy means friend so …..oooohhh I see why he named us all Buddy now.  We are all Santas friends…..and the girls he named Twinkle…..I think that cause she always has a twinkle in her eye.   What do you think?  She should have been called Buddy too cause she is my best friend.

Twinkle and I have been given a very special mission.  We heard it was your birthday tomorrow so we decided to pay you a visit and boy did we have fun in your room.   20151014_101113 We hope you don’t mind that Toothless let us fly around on his back so that we could see everything.  That was really fun.

20151014_101131

20151014_101225  We loved reading your books but Twinkle got a bit naughty and started making phone calls so we had to leave.  She wanted tp play on your computer but I told her no.  She wanted to play Minecraft and watch Simpsons videos.  Do you like doing that too??

We are coming for a visit for your actual birthday so keep a eye out for us when you wake up but make sure you remember you cant touch us or we may disapear forever.

We saw your best friend Luluka too 20151018_120701Lucky she did’t see us hey or she might have let you know our secret.

We are looking forward to actually meeting you on your birthday.  We are wondering if you could choose new names for us so we can have a different name.   Ask mummy and maybe she can let you adopt us and make it offical so that we can have lovely names like some of our friends that have been adopted by good girls and boys.

We will be back on the 1st of December to spend some time with you until Christmas eve when Santa collects us in his sleigh when he visits your house and makes us come home until next year.

We head back to the North Pole each night and report to Santa if you have been good or bad that day.    We hope that you are awesome because if children are bad we have to let Santa know and sometimes he doesn’t let us go back to that childs house no more. We don’t want that to happen cause it looks like so much fun at your house.

We would love to stay and play all year but Santa makes us work hard getting everything ready for next Christmas.  (Actually don’t tell him but we actually sneak out and play when he is resting.)  Sometimes we even go away on a holiday but don’t tell Santa cause he thinks we are all still here.  We like to spend special holidays with our new families.   We all look the same so he never knows when some of us are missing,

Do you think that we might be able to visit at easter too so that we can share your easter eggs and chase bunny rabbits and chickens.  Promise we wont eat all your eggs (Well I do but Twinkle is a little bit greedy around chocolate.

Did you also know that Twinkle saw your Fairy door and asked the fairies in there if we can use their door too.  The fairy that actually lives in there thinks you are a beautiful girl.  She is sorry that she hasn’t been out lately but her friend is sick at the moment and she is looking after her but she said she pops ehr head in to check on you when you are sleeping.

She looked in last night and she noticed you weren’t in there.  She said there was another little girl in there and when she asked her what her name was she said Sumara.  Is that right???  She noticed there was a older girl on your bed and Sumara said her name was Danesha.  You are a very special person letting your friends sleep in your room.   She then flew around your house and found you im your mum and dads room sleeping peacefully so she knew that you were ok and not in hospital.   Your Dad nearly caught her when he woke up to go riding this morning but she hid behind your Frozen pillow until he had gone.

She said we can use her mailbox so we can get letters from you when we are not visiting if that is ok by you.

Well This was supposed to be a short letter to let you know we are coming so I had better say bye for now and see you tomorrow morning.

Lots of love

Buddy and Twinkle

Your special Christmas elves.

SALT and Cystic Fibrosis

Reading a awesome heartfelt blog i often follow by Janette Hayward

I came across a awesome way of helping you understand the basics of how Jalans body works.

Something as simple as SALT can mean life or death for her.

salt1

We all know the warnings out there like salt 2 salt

Well with people like Jalan with Cystic Fibrosis they need heaps of salt to help keep them healthy

It is one of the major issues they have.

As you all know if you put a pile of salt onto the table it attracts moisture.  This is what happens inside our bodies to keep everything flowing smoothly.    Well in CFers bodies this salt chloride thingy doesnt work.  Almost as simple as that.

Here is Janette’s explaination from her blog

“Salt. It’s a simple compound. It’s an important compound. In people with CF (PWCF) salt is completely unmanaged in certain cells of the body. It’s allowed to run amok.

People without CF have proteins that regulate the way chloride ions move into and out of particular cells; which in turn regulates the movement of water into and out of those same cells (remember learning about osmosis in high school biology?). These proteins act a little bit like bouncers regulating the flow of people into and out of a bar.

PWCF have little or no functioning of these proteins – the chloride ions and water don’t go where they should and the secretions produced by the cells are way too thick. To extend the above analogy, this is like ending up with an exceptionally crowded bar because the bouncers didn’t turn up for work.

In the lungs, the thick mucus can’t be easily shifted up and out which creates a lovely environment for bacteria to flourish. In the pancreas, mucus blocks the tubes that are meant to transport the digestive enzymes to the food. Other parts of the body can be seriously affected too but the lungs and pancreas are consistently affected in PWCF.

Without modern medicine, this situation is a disaster and means a pretty quick death. With modern medicine, there are things we can do and medications we can take to circumvent these problems to a certain extent. We’re pretty lucky that the way CF is treated is still evolving and improving and new treatment options are becoming available.

In addition to prescribed medications, Dave and I add extra salt to our food, take salt tablets on really hot days, regularly inhale salt solutions or squirt them up our sinuses and holiday by the beach to try and get the salt where it should be – in our bodies.

Funnily enough, when we sweat our sweat is very salty! Our Kelpie dogs Flame and Scout love nothing more than to lick the salt from my arms and legs when I come back from a run. Prior to the 80’s when diagnosing CF was a bit hit and miss it was often suspected when a sickly child’s skin tasted salty. Measuring the level of salt in sweat is still the gold standard of CF diagnosis.”

pink_rock_grinderOur favorite go to.   We use this because it seems healthier than just plain old table salt.   Just our observations and the fact it tastes SO MUCH SALTIER if you can understand our logic.   We add this to everything Jalan eats.  She sometimes even adds it onto her plate as her primary source of food.   She licks the salt lamps on a regular basis,  She loves the beach because of the salty water.  Her body craves the salt it so badly needs and yet still it is not enough.  She drinks huge amounts of Oral Rehydration Solution (ORS) (Glucolyte Gastrolyte Hydrolyte are some of the trade names for the liquid constantly in her drink bottle)  Plain water seldomly cuts it.

She also takes 3-4 salt tablets every day to try increase the salt in her body.  She inhales a hypertonic saline (Salty Water) every single day of her life for about 20 minutes every morning.  This increases to twice a day when she is really unwell.  As soon as she says she has a headache the first thiing we do is look at her salt intake.  Has she had enough of her ORS.  How much salt has she had.  Is she dehydrated at all.  CFers can dehydrate very fast due to the fact they sweat horrifically.  They can literally sweat on a snowstorm.

When we check on her at night she is often lying in a pool of sweat, her hair plastered to her.  Doesnt matter if it is freezing cold  in winter, it is still the same.   She is a salty girl.

salt 3Who would have thought something as simple as salt could cause so many problems.   Who would have thought that not having enough salt would be such an issue.

If you ever get a chance give Jalan a kiss on the cheek.  You wont need your salt for that day at all.  Often threaten to rub her on my sandwich.

DSC_0002 DSC_0032 DSC_0056

Horses love her as she is one giant salt lick

The Dreaded Annual Review.

With Cystic Fibrosis comes the dreaded “Annual Review Appointment”

We usually get out annual review around our childrens birthday each year.

This review lets us know how our child has gone over the last year and how different they are and what damage has been done over the year.

It usually starts with a blood test that tests everything from A-Z in your bloods.

Next comes weigh in and measure so we can see what our CFer has done over the year.

Have they put on enough weight or grown taller.

Lung function is done.

The dietician comes around for a review of what the patient has been eating and how many creons or pancreatic enzymes have been taken.

The social worker comes to see how you are coping and progressing and to see if there are any issues she can help with.

The physios come and check your technique with your pat physio or your pep depending on which you do,

They then take a cough sputum to see if anything is culturing.

The doctors come in and do a review of all the medications your child is on and how they have gone over the year and formulate a plan for the next 12 months.

Then you get sent to xray so they can compare it to the previous years xray which can tell them if your lungs are deteriorating.

At certain ages you also get a CT scan, blood glucose tests to check for diabetes, and various other tests.

Some times extra examinations are done depending on the age of the child

If your clinic is on the ball in about a month you will get a letter outlining all the changes and what your child is on and what plan they have for you. This is usually when you get the biggest shock as the  original idea was you had a meeting with the team who discussed what is in your letter and what the plan is.  Only problem is someone forgot to advise you and the doctors that these meetings are actually supposed to take place.   In a perfect world.

Pros And Cons Of Cystic Fibrosis

Hi

After reading Christinas take on Pros and Cons i had to share it here

http://www.facebook.com/notes/christina-robinson-hoffner/day-10-pros-and-cons/10150603262045294

She sums it up so beautifully because yeah there are a lot of cons.  More cons than pros no matter what way you look at it

The cons for us as well is getting to know people and watching them losing their battle,  That is one major con of CF.

The pros for us are the same.  The people we have met both in person and online.

The friends we have made because of CF and admissions.

Yes we have made friends not only with other CF parents but other parents with their children sick in our hospital on our two week admissions  A special thanks to Tammie.  Brocks mum who made every ones day when she was there.  A smile amongst the rain.  A angel in disguise.

Friends we have made at Ronald McDonald House

The “House mum and dad aunty and uncles” that so freely give their time to make us feel loved. Their hug after a long hard day at the hospital.   Their beautiful company  Their listening ear or a cuppa It all makes it very special.   All the other parents that “live” there facing fear and uncertainty.

The Captains in the Starlight Room and the Radio Lollipop making the hospital a fun place to be amongst all the pain

Thank you to Captain Confused Jalans all time favorite Captain.

The joy of seeing our child batter her eyelids and make everyone fall in love with her (not sure if pro or con lol).

We love you all for making her smile and enjoy the life she has to lead

Luv Deb

Social Awkwardness Or What Not To Say To Someone With a Sick Child.

This was actually written approximately 4-5 years ago.  It was during an awareness campaign for Cystic Fibrosis.  Added it to the new blog on the 16th September 2015.  Editing it 30/09/2015 due to spelling errors and other associated thoughts.

OH Wow

The stupid comments we deal with on a daily basis Enough to make anyone crack

1. She doesn’t look sick   /  I think she looks great

If there’s one thing worse than being told your child looks REALLY sick. it’s people constantly saying she looks fine or good and healthy especially when you know the truth.

I don’t think she’s that sick, She has a MILD case of CF. Mild case WTF?  There is no such thing as a Mild or Severe case of CF You either have Cystic Fibrosis or you don’t!

Jalan went for a year with no admissions, then BAM!!!!  A year with 5-6 admissions in quick succession, like another friends child Coen.  In more than out at the time.  His mum Dawns saying of “We live at the Royal Childrens Hospital and have a holiday home up the coast”  really hits home beacause that is what it can feel like.

You can have a year where you have 4 hospitalisations then you can go 4 years like Joelboy did with no chest issues then end up in the hell hole for 2 weeks with serious inflammation. “Joel was 10 weeks prem! ”  From Leelee  Thankfully he is still here at the age of 13 and yes they are starting to have their holiday home at thier home town of Bunbury too.   He now goes in approx every three months.  Some times more.

JUST BECAUSE THEIR FACE LOOKS FINE DOESN’T MEAN THEY ARE WELL

You cannot not judge a book by it’s cover can you!!!

So don’t look at a CF Childs face and assume their Lungs look that good too!.

Wish we could get a xray put on their T shirt each time they have a bad one to show the new damage and the crap that is in there and how CF is destroying the thing everyone needs the most to live.

I cant believe how good she looks even though she is so sick

YOU CANT believe it  How do you think we feel We live with it each day It does our head in but guess what.  They don’t look good to us sometimes.  We can see the changes in their faces that show progression.  We can see how their breathing is different even by the slightest change.  We can see the little bit of extra blue around their lips and the nostrils flaring as they try to suck in that little extra bit of breath.

We can see that our child is one step closer to the “Ultimate Healing” when they can breathe freely for good.

“We can’t acomodate your child here for swimming lessons

Huh what do you need extra for my child.  She does not need a wheelchair She does not need a walking frame   Its a LUNG disease wanker.

If i found out my child had Cystic Fibrosis i would abort it

Yes was said to my by a worker at Dreamworld.  I think he should have aborted himself.

“My child has asthma she could have a attack and die easier than yours”  Yep and i could push you under a bus too.

This statement is true to a certain extent.  But IT IS NOT WHAT WE WANT TO HEAR.  We are not in a competition.

Will she die

Ummmm YES mate and so will i and so will you.   Everyone dies…..just not at the same time.

Will she need a wheel chair

Depending on how strong she is when she needs oxygen…..probably yes to carry the bottle of oxygen with her cause they are heavy little suckers.

Wonder how many more i can put here I could fill a novel

Constant so called positive comments, like she looks really good don’t help at all. Especially when your child is at the lowest weight for age they’ve ever been and wont eat this week.

We don’t want to be bullshitted, or brainwashed into thinking our children are fine.

They are not fine!  Well they are at that time.  The finest they can be at that exact point of time in their lives.

2  Coughing

Oh that’s a smokers cough  (Don’t ever say that to me!) This has been said to me with my cough all my life and i am not a CFer but shit it annoys me.   HELLO I DON”T SMOKE AND NEITHER DOES MY CHILD.   (My cough is from bronchitis as a kid) unless you count the crap in the air at the shopping centre because IDIOTS can’t read the signs that are on the bench they are sitting on AND the sign above their head.    I believe i should be allowed to turn the fire hose on them  After all there is smoke in a non smoking place which must mean its a fire there and other places where smokers believe it is ok to smoke.  LIKE THE HALFWIT LEANING ON MY CAR at Main Roads the other day having a smoke.

Jalan would not go near the car and said Mum “hes disgusting smoking hey” and wont go near anyone who smokes.  DONT LEAN ON MY CAR SMOKING especially if you don’t know me.    On second thought just DONT lean on my car permanently.  Rowan to his credit wanted to go and abuse the guy and tell him where to put his smoke.

My friend that Jalan wont even go near thinks Jalan hates her.    Nope Jalan dont hate you she hates the fact you smoke and knows how dangerous it can be to her lungs and the fact that you smell of smoke which we have taught her not to go near.

Your child should be home in bed”  (had that many times)

Umm YOUR child coughing like MY child should be at home not out spreading germs that make my child end up in hospital for 2 weeks or more.

If my child stayed home every time she had a cough she would almost NEVER go toout of the house or to school.  Their cough is designed to try move the thick mucous that builds up in their lungs waiting to harbour dangerous bugs.

If i feel my childs cough is because she IS SICK or could possibly spread it to your child she definately wont be at school or out.

She will be at the doctors to make sure this cough is not going to harm her.

3  Genetics

Well she couldn’t have got it from our side!  Must be your mums side.  They were always sick.

I have 12 aunties and uncles on dads side they have all had between 3 and 5 kids and now they all have had kids and so on and no one has it.

On my mums side i have 3 uncles and auntys.  One aunty with 10 kids and none of them have it either or their kids or their kids kids either. We don’t know if they are carriers and have been the “lucky” ones and been the 2 in 4 that are both carriers and haven’t had a CF child yet or if one or them or their partners are not carriers and have thankfully overriden the defective gene.

Just go get the damn test done and rule it out on your damn side cause i cant test mum  She got cremated in 1999 so that causes a big problem.    I dont care whos side it came from.   I want to warn one side or even both sides that it is possible in the future so THEY can get tested if they want to avoid the heartache of what we go through.

If ANYONE can explain to me the positive spin on that one I’d love to hear it

I wouldnt have the CF gene.

Hello halfwit!  There is no such thing as Blue blood you do realise this don’t you!.

Functions and Get Togethers

“You use Jalan  so that you don’t have to go to family/parties”   (ouch)

If I didnt want to come i wouldnt use Jalan i would just tell you I dont want to go.  I’m not that nice of a person you know

We just love sitting at home by ourselves not socialising or having fun didn’t you know.  We are hermits

I love BBQs and stuff

You will get endless amounts of stupid comments at functions

I’m getting to a point where it is really just easier not to go like other CF mums.   Sometimes it is just too hard

5 The Ultimate Insults

YOU HAVE TOO MUCH TIME ON YOUR HANDS BECAUSE YOU AND DARREN DONT WORK

YOU ARE ALWAYS ON THE INTERNET

You clean your house , deal out meds, nebs, physio, drop kids off pick them up.   Deal with a 18 yr old aspergers having a meltdown or yelling why can she have this and i cant.

Endless Drs appts, and you have TOO MUCH TIME ON YOUR HANDS?

Ultimate CF Mum Insult.

I am on the internet usually reading the latest research or finding alternative treatments that “just might work” in the slim hope the “cure” is found before it is too late for my child.  Getting support because i cant stop crying or thinking about the future and seeing it without my daughter.   Darren doesnt work at the moment because I CANT COPE.

LOTS OF Money is not the be all and end all of everything,  Sometimes family is more important

Just because i play my games and comment on facebook does not mean i am there 24 hours a day even if sometimes it looks like it.  It is open and i do things between doing other stuff.  And by the way how do you actually know how long I spend on here unless you are stalking me or on here ALL the time too.

And even if i was what concern of it is it to YOU.    This is OUR life not YOURS.  I dont comment on how YOU live your life

You should go out to work It will make you feel better

Yep and try find a boss that will give me 2 weeks off when my child is in hospital and understand that i am late for work because my child decided she was going to be a NON COMPLIANT day so it takes 3 hours to get everything done instead of an hour.   We sometimes have enough trouble getting her to prep on time let alone anything else.   What boss is going to understand that my child is too tired to go to school so i need time off.  The school rings because she is coughing a bit more than usual   Yep no worries just go we can cover your work and do it for you.

MY CHILD is first and foremost the most important thing in my life and i will not compromise her health for anyone.

Who pays for the time off you need from your job.    2 weeks of without pay or use your holiday pay no problem we can live on fresh air.

You exaggerate or make CF out to be really bad

“ahhhhhhhhhhhhhhhhh duh

It is called a Life threatening/shortening illness.

yeah some people live to 50, 60, 70

THAT IS WHERE THESE AVERAGES come from   I HATE averages it means there are very high AND very LOW numbers, and don’t people love telling you they met a 40 or 50 year old with CF. Or even older.

OH MY GOD well everything is going to be ok then isn’t it.

“Oh sorry, did you know I lost a friend at 31 last year”

“a girl in her late teens died in Perth only weeks ago”

“Just over 2 years ago we lost an 8 year old to CF (Ann in USA)”

“and a little baby Boy named Shane was born 12 weks prem and had CF he died 2 days short of his expected due date.”

Funny looking stats of they live til around 35 now………None of these were even close.

We meet a lot of CFers in hospital with Jalan in

Chloe died at 8 as well.   She did not look sick enough to die 2 days before damn it.  i was with her.  We were talking and laughing.  She was jumping around attached to a oxygen bottle.  It looked like she was in a wheelchair because the gigantic oxygen bottle was too heavy for her body to carry around herself.  It was a transport vehicle for her oxygen bottle.  She just went along for the ride.

Georgie made it to 16 WITH A LUNG TRANSPLANT.    All she wanted was the transplant so she could breathe and have energy.  Hell she had more energy before transplant than i did.

These two have made the biggest impact on me ever with their beauty and courage.

All the rest of the ones we have known through friends that have died  BEFORE 18.

We don’t put out videos abut those who have passed but I’d love to see a video with photos of everyone round the world who lost their fight with CF. it would be one long video!   On second thoughts maybe I wouldnt because the pain is too real.

Go to You Tube and Search Cystic Fibrosis and see how many videos there are dedicated to those we’ve lost

How many of them are kids. How many are under 1, under 5, under 10, under 15, under 20.  How many heartbroken families.

The average age is getting higher isn’t it so the treatments must be improving

Yes it is

They are finding ADULT onset CFers with strange mutations.  They are still CFers though.   Of course the age is getting higher. Take away the Adult ONSET.   The 50,60,70,80 and 93 yr olds that have only been diagnosed in the last 5-10 years and see what the average age really is.  Tell me why these people live to the age they do.

Give me the average “death” age and we will see what the true age is.

Oh thats right   The average death age is 20.

YES I HATE THESE STATISTICS

We don’t live each day thinking our child is going to drop dead on their 36th Birthday. That’s what the stats say!

We wonder how sick they’re going TO get,

Will they get married, will they have kids, and yeah will I be attending my own childs funeral one day.  You can say you shouldn’t think like that, but if you don’t have a child with CF or another life threatening illness, well, you’re not really qualified to judge are you.

“There are so many more but i don’t want to type forever I have other stuff to do like housework ewww

With thanks to Leelee for the base for this note.   Yes there is a lot of plagarism in it from her article. A lot of her words but she says it better than i can I just expand on her fantastic writing.

Luv Deb

My Posts And Other Ramblings

Hi there,

Well if you are reading this then you are probably confused bout the way my posts are written.  And the strange posting time,

Yep sleep is overated and ellusive some nights.  The body is willing to sleep but the mind isn’t.

A lot of it is I am transfering all the information I have written over the years on all different places into one.

Some parts are harder than others because they bring up memories deep and buried.

Some posts make me laugh, some make me cry.

But overall the posts are mine along with bits that i have adopted from others.

Actually working out how to do this blog and the thought process that goes into it is often scary.

Dont like thinking this much.

Still trying to work out how you put the links along the top of the page like people use.

Life goes on day by day………

My Greatest Fear

Another CF mum Manuela Bussack wrote this for a raising awareness for Cystic Fibrosis campaign and it was exactly my fears and feelings put into words.

The GREATEST and BIGGEST fear is knowing what’s to come and that I may one day have to bury my child……………..(MY CHILD) well before her time.   This is way too hard a concept to swallow, but one CF parents face in the back of their minds every day.   No one knows what side of the scale you are born on when you’re diagnosed with Cystic Fibrosis (CF).   The scale has so many variations on how the disease affects each and every individual at the beginning, but one thing’s for sure……….the ending result is the same.   An average life span is somewhere in the mid 30’s………in saying that, remember it’s a statistic.  There are still a lot of babies and children dying of the disease every day, leaving their parent hearts broken and their arms empty.  No parent should ever have to go through something like that.  We as parents are there to protect our babies and guide them on their own path into the future, with their wings out stretched and ready to fly into the open spaces to explore the world around them.  We don’t want to send them to the heaven’s……My heart bleeds with pain as I write this!!

When Ebony was first diagnosed, I didn’t know what sort of life she’d have.  I was completely on edge and worrying about every germ that would put a risk to her health and life.  I would spend many nights just sitting there watching her sleep (because the mucus would build up and block her airways)…….making sure she’d take the next breath, all through misty eyes.    For each year that passes, we all worry about the number of colds our children have endured and how much damage each and every one has made to their lungs.  For each infection there is another nail slowly hammered into the coffin with our child’s name written on it.

My other GREATEST FEAR is that I don’t want my baby to suffer……to have to gasp for each breath and see the terror in her eyes.  I dread the day her lungs fail to give her the oxygen that she desperately needs to keep her alive and selfishly help her stay with me and beyond my years.

But in knowing all this, we still have to live …………….so you try hard to bury those thoughts way deep down inside and continue on like a brave soldier.  Your day is filled with all the love and hope that your child will be one of the lucky ones who are able to have a full and happy LONG life.

My wish is for her To live to a ripe of age:  each crow’s feet shows the joy she lived, each wrinkle resembles the years and each memory shows the blessing of what she has achieved.

I love you Ebony beyond the moon and stars to the place where dreams are held and back into my heart always and forever!!  MUM

Thank you Manuela for writing what i wanted to write but find too hard. I can not write about this one myself It is too raw and close.

Imagine living with this fear day in day out then call us paranoid. We try not to even think about it as it just does our heads in.

Too many lives have already been lost to this dreadful disease Way too many we need a “cure” now before we lose any more

Yes my biggest fear is “THE CURE” will be just that little bit too late.

I want a cure before Jalan has a “ULTIMATE HEALING” and gets her angel wings like so many before.

Please please help us spread awareness so we can have “the cure”

Luv Deb

Cracking Point Or How To Get Happy Pills Cause You Can’t Take It No Longer

Hi

Cracking point hmmm i lose it and crack all the time so this is a hard one for me but i think my “cracking day” came not long after Jalan was born

Our social worker kept asking me if i was alright and how was i coping

What am i supposed to say

Yep i’m fine im coping doing well

Well guess what!  This is what i told her because i was in denial I WAS coping because it was ALL i could do. Wasnt it?

I tried to get this social worker taken off our case.   I never wanted to see her again.  It was her fault i was down. She thought i was a failure and i could see that she thought this by her questions.

What does she know anyway, she has never had kids.  Shes not old enough to be qualified to ask me these questions.  All it is is book learning.

Hahahahahaha how wrong i was She had a gift, a amazing talent to see through the all my bullshit and know i was losing it totally.

Jalan was about 2 months old Christmas was a few days away.  I was missing my mum with it being Christmas time.  Couldnt everyone see that i wanted out of this happy holiday crap.

Megan and Rowan had been bugging me and fighting all day long.  Darren was being a absolute pain.  Jalan was screaming.  I was severely sleep deprived.

I had just told my daughter Megan to literally FUCK off and she just kept pushing and pushing and pushing.

Standing in the kitchen cooking dinner and everything was going wrong.  Everything was trashed and a mess

Megan started again and i threw what i had in my hand at her.  As it passed my side vision i realised it was knife and my half working mothering gene kicked in and i threw it across the room in a down ward throw and it landed on the floor about a foot in front of her.  I collapsed to the ground in a sobbing heap realising that i could have killed my daughter that night so easily.

To this day i thank God that a strong instinct to protect my children was instilled in me.

Megan bolted out of the house terrified to the next door neighbours.  Darren came over to see me and all i could do was sob uncontrollably rocking in the kitchen on the floor.

Darren didnt know what to do.

The next door neighbour came over and had a talk to Darren outside, then came and sat with me and helped me to understand what was going on.  She said i had post natal depression and needed to see a doctor.

Great i thought now the whole street is going to know i am psycho. She told me what happened when her daughter was born and how she developed it.

Did she think i really cared?  I didnt care about anything.

Darren promised to help more and the kids promised they would be good.   What a laugh.

Then Darren went to bed to sleep leaving me to clean up the kitchen,  sterilise and make Jalans bottles and then do her night feed…..hmmm so much for helping.

Went to my doctors the following day and told him what had happened and he put me on the first of many different anti depressants and made sure i was not going to harm myself or anyone else and organised for me to see a psychologist.

Since then and now i have lost it many times but never as bad as this first one

People kept telling me i would cope and i was strong.

They reminded me i brought 2 children up on my own.  I buried my mum.   I buried my elder brother

I can do anything.  I survived domestic violence and molestation as a child.  I survived a emotionally abusive ex (the kids sperm donor) I can do anything.

Guess what if it wasnt for all this,  i might have been ok

But not dealing with all this and then having a child with CF finally topped the delicate fine line of balance i was walking and i fell I fell so deep and hard I never thought i would come back.

Some days i still dont think i will ever come back. These days are getting fewer and further between thankfully

Some days i dont want to come back

I dont want to be strong and cope

I dont want to live my life.

Guess what it is my life and i have to live it and have to live it to the fullest

After all they say what doesnt kill you only makes you stronger.

I live it day by day and try not to think about the future.

I live it day by day and enjoy each day for what it brings.

Thats all i can do so that i dont crack fully and never come back.

Have since learnt  “Its ok to not be ok but it’s not ok to stay that way. 

Luv Deb

This is why i live it

Someone you love is suffering from depression you maybe feeling frustrated and at a loss of how to help. Depression is an isolating disorder which can damage any relationships through misunderstanding.

Here are some tips to help support someone with depression.

1. Just Be There

When someone is experiencing depression they often don’t have energy or motivation to reach out for help or get things done. Ask them how can I help? What can I do for you? They maybe to proud or feel ashamed about asking others for help so give direct assistance if this is the case, like getting some groceries or helping around the house, only if you feel comfortable to do so. Sometimes saying nothing, give them a hug and let them know your there if needed.

2. Don’t Criticise Or Judge

Let the person know you believe in them. Their self-esteem may be low and they may feel totally hopeless. The last thing they need is for you to criticise or judge them. The tough love approach never works.

3. You Don’t Want To Minimise Their Pain

Saying something like you let things bother you to much or why don’t you try this or when this happened to me. Try not to offer advice or make comparisons. If you do the above it can invalidate the pain and sadness they are feeling. Making them feel it is a weakness or some type of personality flaw.

4. Learn about depression

Educate yourself about depression and it’s symptoms to avoid misunderstanding. You might not realise but saying the wrong thing to a depressed person can have a devastating effect on them. Be compassionate.