Sunday, 31 May 2009

Weekly Winners 22 2009

...has there really been over 22 weeks of 2009 ?

May 24th to 30th Edition 22

It has been cooler still and with a few more rainy days this week too we made sure we had plenty to do.
Tomorrow is the first day of Winter ...no wonder it is cold ! We never get snow here though I wish it.
P is for park !
(In case you missed it ...last Sunday we went to the park)
O is for ogling Orchids
(@ large chain hardware/home handyman/garden centre- everything under the roof)


Jumping

Helping the cook by
Lickin the beaters
Waiting for cake
finger licking goodmmmm
lossing the curly locks

Lost in space (at Wiggly play centre)
Hide
n seek
SlipperySlide

Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...
Please go see more Weekly Winners @ Lotus's
I have no idea why but blogger uploads my photos in reverse ..grr so some of the pictures are out of order.
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Friday, 29 May 2009

N is for Neurofibromatosis

Another confession . I hate talking about it.

May is International Neurofibromatosis awareness month .I have rarely mentioned it on my blog that I have NF1(much less in real life). It affects about 1 in 3000. It is more common than CF but I know many would never have heard of NF1 or 2. Yes, neuro f.ckity fibromatosis it is a hard word to say and it's even harder living with it.

Twenty years ago this month I discovered it quite by accident , though the signs and features had been there since my infancy.

In May 1989, I found a newsletter from the NFAA - (Neurofibromatosis Association of Australia) on my Aunt's table .I was visiting and as she was busy with her 3 toddlers, my then small cousins, I started to read it. My toddler cousin had not long had an optic glioma removed (common NF1 type tumour on optic nerve ~ removed via brain surgery in 1988/9).

I knew straight away NF1 was what I had ...had since birth. I cried for days , alone and despairing.I was so shocked. I almost lost the plot.

Despite being a registered RN nurse I didn't know much about it. I think the medical profession was largely undereducated too or rather they never mentioned it to most of the 'family' the implications of having NF1 signs & clinical features.

No doctors had ever mentioned it ~ though I had numerous and very large cafe au lait spots (milky coffee coloured / 'dirty' marks) plus other definite signs. After, I calmed down I went to see a neurologist, a geneticist and other doctors. It was more of a case of wait and see...then manage the symptoms. I've seen a few Drs over the years.

NF is a genetic disorder, 50 % dominant inheritance which means pretty much 1 in 2 chance if you have an affected parent. It can also be a new mutation in about half the cases...not quite a freak event but you know what I mean.

The family history started to fall into place.My grandfather, mum, aunt, 2 uncles (I deceased @ 31), my sister, 2 cousins ...now one of my sons and my cousin's daughter (2). My grandfather didn't have much contact with his extended family after he got married but I suspect they carry this too from a few things that were mentioned in hindsight.

I suffered a fair amount of 'teasing' at school because of my many 'birthmarks'. Mild bullying and social 'exclusion' but it wasn't too much to deal with. Just enough to bring misery, luckily I always had a few good friends to make things okay.I am /was so thankful for them. I loved books and reading too so the library was my friend some days.

We [my affected family members] all live relatively normal lives though we have almost all had various 'surgery' for removal various tumours. Now, I have a large one in my left thigh that causes extreme pain if pressure is applied (which wriggly little boys do often climbing onto my lap) and other sensations -tingling/pulling/tightness.

When I wean my sons I'll go see a surgeon maybe ! They say they leave them alone unless they cause pressure/pain or other damage by structure /organ or nerve compression .

I have hundreds of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). My body is hideous to me but clothes cover up most things , thank 'God' ! I have several small soft lumps on my face but nothing too hideous or noticeable ...yet. Click here to see a picture of elderly woman's back severe NF 'skin'.

There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).

I joined the NFAA years ago for a few years .One year I didn't renew my subscription .I put it off because the newsletters were too depressing and scary. I couldn't read them anymore.( I still haven't re joined.)

Still , it gives me a spirit of darkness and has been upsetting me more lately. Unsettling and freaking me out.I won't describe it as being depressed, but my mood lately has been bleaker and it scares me.
There I said it...
Neurofibromatosis awareness month is almost over but the awareness that I have to live with this sh.t is with me everyday.
That my young son has to face this life long 'demon' too gives me a lot of grief. We keep a close watch on him .He is being followed up closely by the Children's hospital clinics. There is no cure ...yet ! Management is a program of treatment by a team of specialists to manage symptoms or complications as and if they arise ... if .
My twin sons are also participating in a 7 yr study about cognitive development in NF1.

Facts & Stats about NF1.NF is not a rare disorder, it is the most common neurological disorder caused by a single gene. Find out about the facts and stats for NF here.
It is (was) Ehlers Danlos awareness month too Veronica knows all about this.

Like Veronica ...the main reason I wrote this post was not to 'whinge' but that if I could bring awareness to one person /family and help them in some way then it was worth baring all.
I rarely talk about NF, even within my extended family, so believe me when I say how hard this was to do.


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Wednesday, 27 May 2009

Wordless Wednesday - P is for park



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Monday, 25 May 2009

On Loss ...

I don't talk much about losing my first baby, my still 'born' daughter .
Certainly the hard days are fewer and fewer.
On Mothers' day I felt her loss and her presence.
I remembered the day just over 5 years ago, my first positive pregnancy test held between my trembling fingers after 12years infertility.
I remembered the changes we made buying and moving house.
The emotions flooding from fear to elation back then ...I was a parent already of an adoptive son but it was still my first 'known' pregnancy.
I had no idea of what was ahead of me ...
Not long after I had our first scan , then another at 12 weeks ... then the one that told us 'she' was 'she'.
It was all over too soon ...
Saying goodbye before we got to say hello .
A final gut-wrenching scan so there were no doubts ...after my OB couldn't find her heartbeat @26weeks at a regular appointment.
No doubts ... except how was I ever going to deal with the reality of losing my long awaited baby girl and the pain.
It is easy now I no longer focus on the raw emotions . I fumbled my way through in the begining. I had no clue . I didn't know anyone who had lost their baby.
So what do you do...

You wake up everyday and breath.
You believe in yourself that you can get through this.
You remember that this is as bad as it gets, from here, each day, you will survive and sunshine is never to far away.
You hug each other.
You find people to support you and you ask for help when you need it.
You remember that its ok to cry.

You will be surprised at the strength you find in yourself. Take each day as it comes, don't think to far ahead and tell yourself everyday that you can only do your best.

YOU WILL get through this
This advice I found recently ...and it is really good.

'You find people to support you'.
The other was to find and surround myself with friends who had cried & crawled walked the same journey(s) , hand in hand , side by side , leaning on one another when we needed to.
Some, still now, are real life friends. Some I have never met . We went on to share subsequent infertility / pregnancy journeys and parenting after loss.
Yes, we still meet and talk about the days of empty arms and broken hearts.

I Rewound this at the Pink Fibro 12/2/2011



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Sunday, 24 May 2009

Weekly Winners 21 2009

May 17th to 23rd Edition 21

We had a busy week and an even better weekend but it was over too soon ...
It has been cooler and rainy this week but last Sunday we were 'falling' in love with autumn.







can you see the rainbow ?
Olympic Cauldron converted into a fountain ...

What I didn't take pictures of ...
  • The heavy rain pouring down ...the washing ... not complaining, just saying ...
I pray for the safety of those affected by floods and the strength they will need to deal with the massive cleanup.
  • The mess S & J made being inside 24/7 instead of outside...but guess where we went today and now the toys are all organised.

  • The crowds in IKEA. I have never seen so many people in a store like we did in IKEA - it will lead the ecomony forward - the checkouts were so long.
  • The people I saw at dusk walking the hugest billy goat on a dog lead, along with their fox terrier and the tiniest tiny Chihuaua dog. I didn't realise till we were right alongside them the huge beast was a goat LOL. I am going to stalk the streets since they told me they take the goat out often.
  • My little puddle jumpers ... next time !

I wish I had more time to play and edit my photos (better or even at all) ... hopefully next term I will get to my photography course.

Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...

Please go see more Weekly Winners @ Lotus's



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Saturday, 23 May 2009

Talk like a pirate

Smiley Saturday
I really wasn't going to ... but this was so funny.
Yesterday, I discovered Pirate 'english' on Facebook. 
A friend, CB, I met at a real life pregnancy loss support group told the 'crew' about pirate english.It had me staggering off the plank laughing. 
This wasn't the funniest bit !
A different friend of mine F (who doesn't know CB) who I also met through a pregnancy loss support group chats to me regularly on Facebook and MSN. Late, last night I told her how to make FB 'talk' pirate english as she needs a good laugh.
Tonight, I quickly log on my computer to actually turn it off and I see F had tried to chat with me. I read the following ...
F says:
hehehehe
F says:
Dh is going off at me about facebook
F says:
I logged into his and put it on 'pigeon'
F says:
he went to use it and was like omg wtf have they done to facebook!!!!
F says:
hehehehe

...I reply 
Trish says:
pigeon or pirate ?
5 mins later chat window peeps

F says:
nfi
F says:
pirate?
Trish says:
it's pirate you goose 
F says:
are they the same?
F says:
what did i write
Trish says:
pigeon
F says : I need some sleep LOL
Trish says:
so did you enlighten DH
F says:
nup
F says:
he is going mental
F says:
and i am lovin it
Pirate says things like...
Th' saucy wench Trish be usin' Ye olde Facebook with the tongue o' English (Pirate)
'Trish be eyein' this with pleasure".
  "Trish flapped her gums " 

If you want to know how to do it too - ok I know you might think I some people have too much time on their hands but really I don't. I just really needed a laugh.
STEP 1: SCROLL TO THE BOTTOM OF YOUR FACEBOOK PAGE. 
STEP 2: CLICK ON ''ENGLISH US'' 
STEP 3: WHEN ALL THE DIFFERENT LANGUAGES APPEAR, CLICK ON ENGLISH (PIRATE) ...
STEP 4: HAVE FUN 

Go see more Smiley Saturdays at Lightenings


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Friday, 22 May 2009

BAHA ?

Today, I went to see my Audiologist about getting a new hearing aid.
My current hearing aid(s) were fitted ten years ago ...though I only wear one as the other aid doesn't help. I know technology has improved over the years and I was very excited to hear a new option.

He told me about a new system called BAHA (Bone anchored hearing aid) and suggested I might be a candidate.
I made a few phone calls and booked an appointment for July for a hearing test and assessment to see if I am a suitable candidate.

I found this on the Cochlear Aust site...

Cochlear, the world leader in implantable hearing solutions, now brings hearing to more people than ever before. Our bone conduction implant, the Baha® system, helps people with conductive hearing loss, mixed hearing loss as well as Single Sided Deafness (SSD™).

The Baha sound processors provide hearing to people who cannot or do not want to use traditional hearing aid technology.


I have struggled with moderate hearing impairment for over 20 (to 30) years. It is mainly conductive deafness but I suspect it is mixed as well.
I suffer from constant ear infections and wearing the hearing aid exacerbates it.I have almost complete deafness in one ear and moderate hearing loss in the other , plus my middle ear bones have been affected by numerous infections and I have a perforated ear drum. It is not suitable for reconstruction.
This may be the answer I have been looking for to improve my life, and restore sound and communication.

The operation is 'simple' and the device an implantable prosthesis is allegedly covered by my health fund (The BAHA device @$6000 is not cheap). I have no idea of the cost of surgery though some will be covered by PHI.

I read it is also available through public system but have no idea of the waiting list time.
Today , I am very grateful we have private health insurance - I've paid thousands over the last 22 years.

Has anyone heard about BAHA ?
PS : The Audiologist didn't even charge me for his advice and he said he loses a sale over it too ;)
I joined an online forum and even got an email tonight from one of the first BAHA recipients 4 yrs ago.


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Tuesday, 19 May 2009

Tiny talk Tuesday

I am loving age 2 . The language explosion is so much fun.

I wish I could remember to write down all the funny things they say ...let alone do (and did I mention how glad I am to have my camera back so I can take pictures).

I am a fan of Tiny talk Tuesday .Today I finally remembered I have something to add.
A few weeks ago I asked the twins to pick up the blocks spread across their bedroom floor.

J (age 2 & 3/4) : "No, you do it I got sore bad - ow "

...complete with a flick of one hand and the other hand on his lower back .
(previously showing no signs what so ever LOL)

My Darling hubby started calling him 'Compo' (the colloquial term for someone getting 'compensation' particualrly when alleged to be 'faking' e.g. a sore back to get out of working whilst still getting paid)

PS : I also won a competition on Facebook for it ...$30 voucher to an online store - woohoo!

Tiny Talk Tuesday helps parents focus on one of the many joys of parenting - the funny things that our little ones (and sometimes big ones) have to say.

Join in the fun and record the Tiny Talk overheard in your house! Publish a post on your blog and link us to the laughs.


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Sunday, 17 May 2009

Weekly Winners 20 2009

May 10th to 16th Edition 20
The I finally got my camera back edition ...

I love Autumn (Fall)

Lizzy was getting some sun down by the duck pond too
(wish I could have caught the coloured reflection better)
♥ feeding the ducks ...except they enjoyed eating the stale bread too

New shirts (click to read all about them)

Hope they don't try trains next !

When do we get the smarties mum ?

Bad Trampoline hair day
Loving my new Little drummer boy shirt
Sidewalk Chalk artist


Ready set go ... Hold on tight
Saturday Sunset
Remember Weekly Winners is a meme to show off your favourite snaps of the week ,
not a competition so anyone can join in the fun ...

Please go see more Weekly Winners @ Lotus's



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