YES... I'M BUSY LOOKING AFTER ME!

A lot of people have asked me how I keep myself busy now I'm not working. Its an innocent question I suppose, but one that nevertheless makes me feel that I'm  being judged. For the record, I am busy and I am not bored.

Life is however a lot different.

Let's look at a few things, starting with the kids. When I left them in the city at the start of the year I was heartbroken. I still miss them terribly but am no longer heartbroken.Thanks to technology my kids are with me 24/7. If anything, I have more communication with them now than before. Let me give you an example. There is the landline, the mobile, texting, Facebook, messenger, face time and Skype. My daughters use them all and one of them is capable of using all seven in one day (guess which one!). I forgot snail mail...she has been known to use that too. No, I actually talk to them more now than when they lived at home and all I got was the odd teenage grunt. Maybe its because they're growing up or maybe absence DOES make the heart grow fonder.

Another change is that when I worked full time, I used to have a cleaning lady. That freed me up quite a bit back then. No cleaning lady now and though I will always miss you Jasmine,  I do a lot more housework now. I actually quite enjoy it. Those cupboards I have wanted to clean for ages - done! Those clothes I wanted to sort out and give to charity for years - done! New blinds in the bedroom. Only took 20 years but done too!

So, that's also keeping me busy!

Another change is that I used to cook a lot, both at school and at home. But these days I keep it really simple and only when necessary. The husband was looking for something to have with a cup of tea the other day. Poor thing hadn't eaten for two hours and he was withering away. 

There was unfortunately nothing sweet to have and he's not used to that. I always used to bake, but I rarely do now unless its a one bowl creation. I don't have time or interest any longer and am much more aware of the connection between health and food these days. I also am aware of my own limitations eg with no kids at home either the husband or I will eat the whole batch of biscuits or the cake. No thank you.

( Incidentally, before I have an uprising of the six sisters in law, I always cook a healthy dinner. He is very well looked after!)

I suppose where there was a full time teaching job there is now my writing and my blog. I am administrator for two Facebook pages - COWDENS SYNDROME AUSTRALIA and CHRONICLES OF A LUMPY PERSON. (Yes, I'm on Facebook if you didn't know that before!). I also belong to a couple more Cowdens support groups and a number of blogging groups on Google plus. I try not to sit on my butt too long, but some of these pages and groups are so interesting. And, reading other peoples blogs is addictive. Honestly, try it.

Other changes?

Well, I am a poor sleeper. Now, I can sleep in and have a nanna nap during the day if necessary. No more struggling to work exhausted. Stress and tumour growth go hand in hand for me.
I have time to sit in town with a coffee and think or meet someone for a coffee if I want to. Quiet time in a sometimes chaotic life.
I can go for a walk anytime I like...yes family, I do walk.

I can watch Ellen and the midday movie. I don't really do that much but I can if I want to.
I can go out with the husband to see a movie and have a meal. We do that once a fortnight now. We didn't do it once a year when the kids were growing up.
I am starting some community service soon and I am looking forward to meeting a few new people.
Best thing, I can drop it all in a few minutes and drive to the city if needed and if there is a medical crisis. That reduces the stress on me a lot.

Yes, life is different. The challenge for me according to my psychologist is to care for myself in this way and to do it all without feeling guilty. I'm working on that, but its taking time. My whole self worth is tied into having a job and earning money. Its hard to change those feelings overnight, but its harder to maintain my old pace AND deal with all the crises this family has faced ... without eventually falling apart.

Hope your self care is good. If anything here makes you think about yourself, my job is done!!!!

Till next time...xxx

THE ART OF TALKING

A few years ago I had a young indigenous boy in my Home Economics class who had limited spoken English and zero concept of time as dictated by clocks and calendars. He was part of the football academy at the college and was much better at football than English, or Home Economics for that matter.

One day the following conversation took place. I have told this story so many times it has taken on legendary status in my family, with the girls able to repeat it word for word.

Me: Are you in class next Monday?

R: Mebbe ( he means "maybe"... for the uninitiated).

Me: Aren't you going on camp?

R: Mebbe

Me: When is camp?

R: Mebbe Monday.(ie has no idea)

Me: So you WON'T be in class Monday?

R: Hmmm....mebbe (still has no idea).

Me: ( changing topic as getting nowhere quickly) - Do you like Home Ec?

R: (Quick nod of the head).

Me: Why do you like Home Ec?

R: ( Sudden English expert with pearly white teeth and megawatt smile emerges) - COS I GET ME A FEED!!!!

Absolute classic story and one which still brings such a smile to my face every time I replay it in my head. It's also a typical teenager story where words are used minimally, unless there's something in it for them or they too are channelling their inner English expertise. The latter only happens when some mere mortal ( usually a parent or teacher) has pushed their buttons one too many times.

Good morning

Grunt.

Did you sleep well

Grunt.

Would you like some breakfast?

Grunt and quick nod of head.

Do you really need to be on your phone at this time of the morning?

Cue sudden English expert! (aka torrential verbal downpour).

I come from a long line of conversationalists. I am Maltese by background and I don't think I have ever met a Maltese person with an inability to strike up a conversation. Well, certainly not in my family anyway!

When my extended family is together there is no grunting, no nods of the head and no need to channel inner English expertise, as we are all professors. We talk at the tops of our voices, over each other and all at once. We laugh hysterically and talk with our hands at all times. I will never forget an Australian friend who visited Malta and on his return said " I understand you all better now. Everyone over there was just the same!"

( Hmm - note to self - did he think we were abnormal before???)

When I started teaching I used to get in trouble for talking too loudly and too forcefully. My boss regularly reprimanded me, but I could never
figure out what was wrong as I spoke the same way to everyone. Advantages - I never needed a microphone at assembly or on excursions. Disadvantage - kids were entranced by my hands and spent more time watching my hands " talk" than listening to what I was actually saying.

The art of conversation seems to be dying out. You can now order a pizza, book a GP appointment, make dinner reservations without speaking to anyone. You can order clothes online and even have a fight with someone all without opening your mouth. And the bit that makes me laugh - in a new relationship first you get to know each other online and then use of voice is stage 2...if at all!

I took the girls out for breakfast last Friday. We sat down and both automatically reached for their phones. Risking an explosion of " sudden English expertise", I asked them to put their phones away. They took a couple of extra minutes and then obliged. And it was lovely. I love hearing about what's going on in their lives and minds and seeing the repartee between them. They make me laugh so much. You don't get body language with texting and stupid emoticons.

This coming weekend my family will be welcoming our young cousin who is arriving for an extended stay from Malta. Warning Australia...the noise levels are going to get louder and there are going to be more hands flying around everywhere. My vocal chords and hands are ready for a good workout! Duck for cover folks!

And finally...I'll leave you with this.

John Wayne was obviously NOT Maltese.

Till next time...xxx

SUNSETS

The girls flew into town today to attend the funeral of their beloved cousin. It's been a long, hard week but its a bit better knowing that we will all be together at tomorrow's service.

The strength and unity in this family has been amazing. There have been numerous opportunities to share not only tears but happy memories. Some gathered tonight to watch a spectacular sunset and remember the young woman who used to surf in the water below. It was a lovely idea except for the bit where I realised we were watching from the top of a sand dune with a sharp incline. I am so unfit! If you saw someone lying face down in the sand, half way up the sand dune, that may or may not have been me.

But I got there!

And when my heart rate calmed down and I had promised the husband to do something about my fitness, I was rewarded with the most amazing sunset. What better way to celebrate the life of a special young woman than with Mother Nature showing off her beauty in this manner.

And then all too soon it was time for another sunset of sorts and to remember a woman, who as the priest said "was smiling in every photo". In a supreme display of inner strength both parents and brother delivered the eulogy together. I had the privilege of reading the following beautiful words which will be familiar to many.

Death makes us so much aware of what we have and I am determined to enjoy every minute of having the girls home, except for maybe the inevitable mess that accompanies their every move. I have no idea why they store everything on the floor!

The wake yesterday was the first time many of the family had caught up with my girls in ages. My favourite eldest daughter (FED) and my favourite youngest daughter (FYD) were kept busy repeating stories about their health and studies. It made my heart so happy to see the FED especially looking so well,and having some special time with her cousins. I really missed my cousins when I came to Australia and I love seeing my girls surrounded by theirs.

Before the girls leave to go back to the city, we are starting the process to determine whether they have or do not have Cowden's syndrome. Its something we have thought about and talked about at length and as neither daughter seems fazed by a potentially positive result, we are going with it.

I have my suspicions and I hope I'm wrong. But as usual, it is what it is and we will deal with whatever comes our way.

Till next time...xxx

PS - Guess which blog turns 1 soon???

ORGANISATIONALLY CHALLENGED

In a week that's been so full of sadness a simple conversation brought a smile to my face ... well sort of!

Me: what shall I get my friend for her 50th?

The husband: what did she get you?

Me: I'm 48!

Honest to goodness. Do men notice anything? Do they remember anything? Here is another:

Me to husband - when is our wedding anniversary?

Husband - July 23rd ( it's July 13).

Me: wrong

Husband - is it June or July?

Me: not telling. You were there. Remember!

                                          Husband: you're trying to trick me

                                          Me: ( sigh).

It's lucky I love him.

Two other young people I love dearly ( our daughters) will be home this week to attend their cousin's funeral. Telling them their cousin had passed away was right up there in the difficulty level. If I was playing a game I'd now have bonus points for having got through that. It's not something I want to repeat in a hurry.

To be able to attend the funeral, the FED ( favourite eldest daughter) and I have had to reschedule two doctor's appointments with the gastroenterologist (me) and with the interventional neuroradiologist (her). That's the doctor who saved her life and one of the ones who checks in on mine every so often. The appointments have been in place for ages, but when life gets in the way like now, we have to reschedule.

Making appointments (and rescheduling them if needed ) is a logistical nightmare for anyone with Cowdens syndrome or any rare disease for that matter. As constant monitoring is needed in so many areas, this task is not for the faint hearted. Simple patients become organisational experts, planning and re planning a number of dates to suit kids school schedules, work commitments, doctors holidays etc. It's a very lonely experience for most. You may ask why the doctors don't do it for us? Its simple really. All the doctors think someone else is doing the organising and coordinating and therefore don't offer to do anything themselves. In reality also, most of them have little or no knowledge of the condition and don't realise how " on the ball" patients have to be.

If you're lucky ( and I am), a good GP helps to coordinate most of it. but even in my case I do most of the research about what needs to be done and how regularly. I also keep tabs of where we're at and what's next.

Just to give you an idea. At the moment for ongoing care I have a plastic surgeon, a respiratory specialist, a neurologist, a psychologist and a gastroenterologist. On other occasions I have needed a surgeon, an oncology gynaecologist, a haematologist, a thyroid specialist and a women's specialist. You get the picture. Add into the mix (in the last 14 months) my daughter's appointments and surgeries and you start to realise why at the moment I can not hold down a paying job.

A mother of a daughter diagnosed with Cowdens syndrome recently posted a heartfelt message on our support group page. With her permission I have published some extracts because it shows the frustration we all feel so well.

I'm really quite sick of this whole rare business, all the advocating, being blamed for health issues, not being understood and never finding any specialists who really get it or can answer your questions. I asked one about endo screenings and what age this may be necessary. She said "I don't know but ask your paediatrician ,after all she is the one that coordinates all your daughter's healthcare." Ha ha if I didn't want to be rude I would have fallen off my chair laughing. NO ONE COORDINATES ANYTHING, I do everything. If it was left up to them my daughter wouldn't even be diagnosed let alone getting any proper healthcare.

and

My daughter already has had so many health issues that apparently don't happen to children. I AM just over it at the moment and I guess it's been a long week. Sometimes I just feel so alone, it's like living on another planet and no one you deal with ever understands. 


 If you know somebody with a rare disease or somebody caring for someone with a rare disease, chances are that beneath the exterior someone is trying very hard to keep it all together. Just give us a smile and some leeway please. We're often exhausted, frustrated and as my friend says " over it".

Till next time...xxx

THINK AND TALK...PLEASE

The topic of death can be a touchy one. Well, it certainly is for me. I don’t feel comfortable talking about death… which is tough really, because it is the only certainty we can expect in life.

I suppose I feel that if I don’t think about it or talk about it, it will never happen, neither to me nor my loved ones. It scares the hell out of me.

My first dealings with death came at about the age of 22. I was a young teacher in a school that was in mourning for a young life taken on the road. I remember the nuns issuing us with instructions on how to deal with grieving kids. I sucked at it. It was MY first experience at death and like the kids I too needed consoling and instructions on how to deal with my own grief.

A couple of years later my grandfather passed away. Although I had not lived in Malta for many a year I was sad beyond belief and more so when I could see and hear my father’s grief. I think that’s when the finality of death sank in. I had memories of reading books and looking at stamp albums with my nannu in his secret room. I realised that I would never do those things again. 

As the years passed I matured and toughened up. I had to. I worked in a country college and for a while accidents on the road were rife and funerals for lives lost too early, were plentiful. As part of my job at the time I had to organise a school mass for one student who had passed away. It was the first time I directly disobeyed an order from a boss. She had instructed me not to play music at the mass which would make kids cry. I ignored her and played what the Yr 12 cohort of the time wanted. She spent the whole time the song played trying to get my attention. I was too consumed with grief to care. Having taught the child for five years straight, I like many of her other teachers felt like I had lost a child of my own.

When I was diagnosed with breast cancer in 2008, I initially never thought about death. For those of you who have followed my blog since the start you may recall me writing that I was angry. I was furious in fact. But, I never thought about death.

That hit me one day in a crowded shopping centre when I came face to face with a book celebrating the life of a woman who had passed away from breast cancer. It hit me straight in the face, between my eyes and into my brain.

This was what I had.

I ran out of the shop and sat in the car and cried and cried and cried. I was terrified.

At times like this I have been glad for my faith. During the months of my illness and that of my daughter, I have repeated the mantra – “In God’s hands”. At the worst times I have repeated it over and over, calming the panic rising in my system and giving me some peace in the knowledge that someone was in charge of this chaos.

This week death came to visit, taking with it my lovely niece way too early. Left behind are parents, a brother, a grandmother and a huge family all shattered with grief. She was still young and it was totally unexpected.

I didn’t think about it or talk about it and it still happened. And I’ve realised a few things…too late in this case but regardless.

     I need to think about it and live a life of no regrets. I need to do things I want to do and go places I want to go. I need to live as full a life as possible and not turn around one day and say “I wish I had….”

  I need to talk…not necessarily about dying but to the people I love. As a Facebook status said this week , “Leave nothing good unsaid”. How true. Keep in touch with people. Am I the only one guilty of being too busy?
 

It’s been a sad week and one that’s brought up a lot of feelings and memories.

Think and talk...please.

RIP my beautiful niece xxx

IN YOUR FACES

I know I only posted yesterday and I seriously don't want to drown you in my posts BUT I just had to share this with you.

For those of you who are new to my blog ( and there are many), let me recap on the situation my eldest daughter has been going through.

She is 20, still young. Yet in the last 14 months she has been through so much. She was diagnosed with an aggressive dural fistula in July 2013 and since then has been through 13 brain surgeries. 11 of the surgeries have been through angiogram procedures and two have been craniotomies where the skull has been opened to expose the brain.

At the moment she is doing well and she may even have turned the corner. ( fingers crossed).

In my blogs I refer to my daughter as my FED ( favourite eldest daughter). My other daughter is my FYD...sure you can work that one out.

My FED has been involved with a wonderful initiative called The I am project. It showcases young women who have been through or are going through major health crises. With permission of the administrator and the FED herself, here is her latest post. Every time I see it I experience so many emotions .

Puts all of us back in our box I reckon!

Link below...have a good day xxx



http://www.the-iamproject.com/#!Lets-talk-about-Hair-/cmbz/91505767-3513-49AD-BFB2-ED13B8BBDE9C

I USED TO COOK

OK...anyone who knows me knows that I used to love cooking. My Mum is a very good cook as are all my Maltese family, and I guess somewhere along the line it brushed off. It used to give me great pleasure to produce something  from scratch, for a number of reasons. One, I wanted to taste REAL food not processed rubbish. And two with all my food intolerances; eating pre-packaged, processed food is a no no and bound to end up in a head- to -toe rash on my body, or me lying on a bed clutching my stomach in pain. 

Interestingly, the more people with Cowdens syndrome I encounter, the more I realise that it is quite common for these people to have food intolerances or food allergies. Not sure about the physiology here but does it matter? 

Eat fresh food...eat unprocessed food...cook!

This mantra is easy to follow when in my own home and in my own kitchen. But I find it so hard to follow when we are in the city going through a medical drama. And remember, my daughter has had thirteen major procedures in the last 14 months so I have been away from my home a lot.

When life's a drama, I'm not as organised with my food. I'm not in my own kitchen and I don't have time or inclination to shop for food. My head is understandably occupied with other things. Eventually, my couldn't care less attitude arrives and I find myself staring at some pre-packaged muffin and asking myself if  "surely one won't hurt?" The answer is always " no, of course not". In seconds, I forget the wheat which my body doesn't like. I forget the artificial colouring and preservatives which my body loathes and reacts to and I forget the unecessary packaging which I usually avoid. And I always end up kicking myself later and telling myself "its OK because your child is going through worse." What a cop out!

On top of all this, we've eaten in the hospital cafeteria so much this year that I have forgotten HOW to cook. Like any skill it requires practice and because I have had little practice in the last year or so, where once I loved cooking, I now have started to dread it.

Hello pots and pans - remember me?

Its hilarious really because I'm an ex- home economics teacher! But, in the last year while trying to get back into using those pots and pans, everything has gone wrong from burnt steak to overcooked chicken.I even had a sandwich fall apart!

Seeing it as a step back towards " normality", I have in this trip home made a concerted effort to revert back to my old cooking ways. And...it all started with a meal the husband and I ate in the city before we came home. He discovered "Thai green curry" and fell in love.

Now I always have a little chuckle when the husband discovers something the rest of the world has known about for ages. (Chuckle, Chuckle). But because I love him I decided that this week I would make him a "Thai green curry", even though I was sure I would probably wreck it. For the record, I've never made one before.

Armed with a recipe from taste.com.au which is posted below, I went hunting for ingredients in the supermarket. Because I live in a country town the ability to get fresh produce varies from day to day. Today wasn't a good day and  I was a little concerned when nine out of eleven ingredients were only available in a processed form. Rashes, tummy pains...here I come...groan.

(By the way please don't message me with comments about how you make your own green curry paste. I am quite pleased with the fact that I'm cooking again and yes, my curry paste came out of a jar!)

Apart from a borderline asthma attack when I stir fried the curry paste, the recipe was a hit and the husband was in foodie heaven for the second time in one week. I did eat some and it was yummy. The side effects on my strange body were not as bad as I expected, but its all about thresholds and I wouldn't tempt fate with another serve in the near future.

So, its another step in reclaiming my life. Starting to cook again and slowly re-introducing all the foods into my diet which make me feel better. eg Porridge for breakfast with berries and chia seeds. Hospital breakfast was just a coffee!!

I don't know what the secret is to eating properly while supporting someone in hospital. Maybe I'm over thinking this. Any suggestions before the next round of doctors would be greatly appreciated.

Anyway...feeling great about my cooking success so am off to make a "one bowl apple cake", which I pinched from my aunt's Facebook wall. Its easy and quick so it gets my seal of approval in this starting to cook again phase. If anyone's interested, I'll post the link. Meanwhile, maybe try the curry.It really is good.

Till next time...xxx



 http://www.taste.com.au/recipes/19756/thai+green+chicken+curry