Saturday, July 18, 2009


Not me, my computer. *sigh* It's almost impossible to be on here for any length of time so I'll just quickly update. I had so much to share this week.
Beautiful dinner with Claire and Adrian
Movie going TWICE
Watching four children,
Venturing out with four children on my own
Looking at old photographs
Listening to Ben play singstar and singing very loudly "They call me Stace-ey!" (which I assure you we do not)
Listening to Ben try to bursh James' hair - "Let me do it. Stand still. Don't run away. Don't eat me! I don't want to do this now..."

But it will all have to wait as for now I say see you on the other side of this virus.

Monday, July 13, 2009

27 things I loved about my 27th birthday...

1. Having a lovely meal with my second family (My Inlaws :) ) the night before
2. Waking up and receiving handmade cards, instant kiwi tickets and chocolate from my babies and husband.
3. Receiving a gift from Michelle, all the way from London!
4. Said gift from London was my much loved and greatly missed Reeses peanut butter cups and pieces, as well a lollies I've never had before :) And a gorgeous postcard.
5. My Nana sent me a gift she had especially picked out for me as she thought I'd liked it.
6.I had lunch with my parents, my Nuka, all my sisters, their partners and nieces and nephews.
7. Everyone had put so much effort into choosing gifts for me.
8. My niece and nephew had spent a long time putting together a picture mural, drawings and my favourite gum.
9. My Mum paid for me to have my hair done a few days before, so I celebrated turning 27 with no grey hair :)
10. Nuka giving me the most perfect card, and a wonderful gift.
11. Receiving a hilarious card from one of my sisters, and the gift of a book!!
12. Going to Glassons after lunch with a gift card from my eldest sister, and finding a sale was on! Getting a gorgeous woolen top for less than half price :)
13. Finding the perfect bracelet and charms were also half price.
14. Having Nuka join me on the shopping trip.
15. Spending a quiet evening with my husband.
16. My littlest sister buying me clothes she knows I love.
17. Discovering that one of the tops she bought me is a new colour I've never worn and it suits me!
18. Finding lots of messages on Facebook from people wishing me a happy birthday
19. Getting sung to twice
20. Getting two cakes
21. Sleeping in late
22. Staying in bed reading for a while before getting up for the day
23. Did I mention the Chocolate from Michelle? Hehe, It's just SO yum it deserves another mention
24. That I still have more to look forward to, a dinner with Claire and Adrian :)
25. I was well for the whole day
26. Having my babies tell me they love me and to have a happy birthday
27. Having a peaceful, happy, wonderful day.

Saturday, July 11, 2009

But, he's my best friend....

Me "James, please put that toilet roll back in the cupboard"

James: "But it's my Best Frieeennd."

Me: "Then why are you ripping him up all over the carpet?"

James: "I'm not."

Me, walked away deciding this was a battle not worth fighting.

Some time later......

Me:"James, why is your best friend down the toilet?"

James, looking at me as though at a crazy person: "Mum, that's a toilet roll."


Friday, July 10, 2009

Could we postpone?

I have never before had any issue with growing older. I still pretty much feel like a kid every time Christmas or my birthday roll around. Extreme excitement, the knowledge I could boss everyone around if I wanted to, my choice of dinner and birthday cake. Yum, what's not to like?

It's just this year I'm turning 27. That's three years away from thirty. And I'm still not well. I feel as though this chronic illness thing should be coming to an end by now. Say there had been some kind of contract, I'm pretty sure it should have read something like this:

The agreement between Party A (Carla) and Party B (Chronic illness) is as follows;
Party B is to have all rights to Party A's body during her early and mid twenties. Party B can during this time decide to flare at any given moment with very little warning. Party B is entitled to take away Party A's choices in regards to childbearing, working, and raising her own children. Party A can fight against Party B, but it will prove to be of little use until;
i. Party A approaches the age of 30 when Party B
no longer has any right to reside in Party A's body.
ii. Party B is killed off by some kind of super drug sooner.

See, while this is hardly ideal, it gives me an end point. In some way I imagined this is the way it would go. It's only fair right? I mean I think I've given quite enough of myself to 'Party B'.

So while I'm so grateful to be here, celebrating turning another year older when all odds at one time pointed against that, I'm also not quite ready to get closer to that age I thought I would be all better. It's disheartening. It's another year of being sick.

I might just be miserable about this for a night. Then I'm going to enjoy my weekend and have a perfect birthday. A weekend where I don't think of any of this health stuff.

Maybe instead of postponing my birthday, we could just postpone being chronically ill? Just for the weekend?

Saturday, July 4, 2009

Six Years ago today...

It was incredibly hot. I was hanging out in a hotel room with my three sisters, Mum and Nuka. Things were quite relaxed. Well I should say I was quite relaxed. There was a buzz of activity around me as we finished off the lunch sent to our room by my husband-to-be. My Mum took me into the bathroom and began doing my hair, while my eldest sister proceeded to do my make-up. I was helped into my dress, my Mum and siblings left and my Dad arrived to escort myself and Nuka to the chapel.

Yup, Craig and i have been married for six years today. On that day not so long ago, and yet it feels like an eternity has gone by since (In a good way!), we were in Fiji at the Sheraton resort ready to say our vows in front of my family and Nuka and begin our lives together as husband and wife. During the ceremony, this was read out;

You were born together, and together you shall be forevermore.

You shall be together when white wings of death scatter your days.

Aye, you shall be together even in the silent memory of God.

But let there be spaces in your togetherness,

And let the winds of the heavens dance between you.

Love one another but make not a bond of love:

Let it rather be a moving sea between the shores of your souls.

Fill each other's cup but drink not from one cup.

Give one another of your bread but eat not from the same loaf.

Sing and dance together and be joyous, but let each one of you be alone,

Even as the strings of a lute are alone though they quiver with the same music.

Give your hearts, but not into each other's keeping.

For only the hand of Life can contain your hearts.

And stand together, yet not too near together:

For the pillars of the temple stand apart,

And the oak tree and the cypress grow not in each other's shadow.

Which is of course from The Prophet. I promised to love and cherish Craig forever. I looked into his eyes and saw adoration and love.

And six years later, after chronic illness, infertility and the birth of twins?

I didn't know it was possible to love him even more then that day overlooking the sandy beach promising to be with him forever. But it is. And I do. How amazing is that?

Today, I woke up and looked into his eyes, and it was still there. Love and adoration. I am one lucky, blessed girl. I love you Craig xxoo

True Friends - Here's to you

" A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away."
- Arabian Proverb

“If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you.” A.A. Milne

"When true friends meet in adverse hour;
'Tis like a sunbeam through a shower.
A watery way an instant seen,
The darkly closing clouds between."
- Sir Walter Scott

"True happiness consists not in the multitude of friends, but in their worth and choice."
- Samuel Johnston
"Life is partly what we make it, and partly what is made by the friends whom we choose."
- Tehyi Hsieh

I have learnt the hard way;
"Misfortune shows those who are not really friends."
- Aristotle
"The friendship that can cease has never been real."
- Saint Jerome

I have also learnt, I am truly blessed to have some very good, true and precious friendships. Friends whom knew me before i became sick, and have never treated me as an illness. Friends whom have cried with me, laughed with me, celebrated my successes and comforted me when things haven't been great. Friends who visit even when their own lives are hectic and full. The friends I love and care for and it is my honour and privilege to have them in my life. How could I be worried about those that turned out to not really be friends? I would not want them in my life anyway. Not when I have True Friends. Not when I am lucky enough to have more than one true friend.

So here's to you, my wonderful True friends. Thank you. I owe you all big hugs.

Thursday, July 2, 2009

Feeling Much Better (and Photos!)

I have woken up today to another chilly winter morning. The sun is out though, with blue skies and nice fluffy clouds that as the day progresses I suspect will turn to grey heavy clouds since this weekend is meant to be very cold.

I suspect writing out all I did last night helped me to stop going over it in my own mind all the time. Physically, I'm still tired and feeling icky but Emotionally I am so much better today. At this point in time, that seems by far more important. Feeling happy and assured is likely to help me through these days I'm having a flare of my illness. So I'm very grateful for waking up today feeling so much better.

The roller coaster ride that is dealing with chronic illness involves so much more than just how you are feeling physically. It really does effect every part 0f your life and while I choose to be happy and grateful no matter what, I am human and have those days, or those months when that choice is a hard one to fulfill. I am so very thankful to those of you that have stuck by me during this most recent tough time. *hugs* go out to all of you, near and far :)


So, I promised a few weeks ago pictures of the twins on a special day. Here they are:

Was that a birthday cake? And new toys? Why yes. Isn't their birthday in September? Yes again. And haven't they already turned three? How very observant of you. We had a 'pretend' birthday party for the boys at my Mum's house. They got a gift to share, a small present from my mum and sister, cake and a movie to watch. Just another of those crazy spur of the moment things I decided to do :)

Wednesday, July 1, 2009

Health Update

I haven't been blogging much. I haven't been doing much of anything. My boys get the best of me, the time when I am awake and well enough to do things with them or take them out places, and then I'm too exhausted for anything else. I'm having constant sore throats and aching, the weight loss has been non-existent and I was feeling as though my doctors had given up on figuring out what was going on. Depressing would sum it up nicely.

I had a scheduled appointment with my general specialist. I put it off a month ago, and was extremely tempted to cancel this one as well. Out of all my doctors I quite possibly had the least amount of faith in this doctor and the place I am in right now didn't feel confident about going to see him. Thank goodness I did, and I will freely admit I was totally wrong about this doctor.

In the two months since I have seen him, this doctor has been researching, going through all my records since childhood, in contact with all my current specialists and in touch with an Immunologist whom is going to come in on my case. I had more bloods done yesterday after my visit, ones ordered by the immunologist who will also be receiving a full account of my medical history in case he believes further bloods are necessary. At this point in time it is the immunologists firm belief that I have an active Autoimmune Cardiomyopathy. The next step for me is to have a Myocardial biopsy. Basically with a fine needle/grabber the Doctor can go in through a vein and grabby some cells off your heart for testing. While you are awake. Now, if I didn't already have PTSD I certainly will after that. At the same time I am pleased to be moving forward again, and thrilled someone is still reviewing my case and trying to work it out. I go to see the general specialist again in two months, in the mean time I see my GP on Monday and will find out about scheduling the biopsy.

The saddest thing about this past month or more that I have been quite unwell again has been the loss of a couple of friends. I knew it was most likely to happen at some point, I'm extremely unreliable when I feel unwell coupled with feeling depressed. I tend to take far too long to return phone calls, emails, post on my blog. I'm on autopilot just trying to get through the day while finding those little moments of joy, such as spending time with my Nieces and nephews or watching my boys play, to brighten my day.

Due to the weight issue as well I've not been feeling the best about myself. So the loss of these two friendships has seemed to reaffirm to me that I'm not a good person or friend to have. Then I worry about the time when I'll have no one as everyone has gotten sick of my illness.

I don't know if it was good to get this out or not, but I'll leave it. How I feel right now, but I'm working on it. The positive doctors visit has helped sooo much.