Music Notes of Life

You may notice the new gadget I have added over there on the left side of the page. My brand new weight loss ticker with the cute little heart on it. As a result of many doctors appointments this month, I am feeling very content with where I am health wise right now, and full of much hope for the future. I also have a few goals for myself in the next twelve months. Things that will add to my learning to take care of myself and putting my health first.

One of my goals is weight loss. This has been a long term goal for me since the birth of the twins, however due to many circumstances out of my control (Heart failure, arrhythmia's meaning exercise was not allowed, PCOS and worsening Insulin resistance) it's not really been top of my priority list. When it did become something I could work on, I quickly learnt that this too was not in my control. With so many things working against me, it has been a long hard struggle to try and lose, and then just try to maintain my weight so I wouldn't put on more. I have just realised it needn't be this way. It doesn't need to be a struggle. When I am doing everything the right way, and my health is so poor my body is not in the right place to co-operate. What more can I do than my best?

I have finally seen all my specialists in one month, so there was no need to double check things between each other and make more appointments for three months time. I was the go between, taking comprehensive notes of blood tests and questions for each specialist to each appointment. I now have very comprehensive treatment and follow up plans. I have been given many options, which I won't go into. I really wish to share what I have chosen to focus on right now, and not what may or may not ever need to be done. Of course, I will share those if they ever become a necessity.

With Insulin resistance, the body has difficulty processing glucose. It tends to store everything as fat. With Cardiomyopathy the heart is weakened and can't pump as efficiently causing fluid build up. With uncontrolled arrhythmia's it is dangerous to exercise. With a mysterious autoimmune condition going on, it is difficult to find the energy to fight for what you need from your doctors. This month I knew I had to. It was my chance to see all six specialists and get a good plan going on.

So, the endocrinologist (Looking at my PCOS and how to treat it) is increasing my Metformin, a drug typically used in diabetics but proven to be very effective in treating Insulin resistance and PCOS. Hopefully this first step is going to aid my body to get back into order heal it's self. My Cardiologist has increased my beta Blocker even further and it's working! Decrease in arrhythmia's, decrease in tachycardia and a resting heart rate of 75bpm!! Actually, the other night I woke up and said to Craig that I thought I was dying as I couldn't feel my heart thumping away. He very calmly helped me find my pulse, and explained it was normal not to be aware of your heart rate! Wow, I'm loving it!

As a result I have clearance to exercise! At this point in time absolutely NO running, really the only thing which is OK is walking. So I'm starting off on my parents treadmill at a very slow flat speed for 15 minutes each day. Over time I'll build up intensity and length of time, with the hopes of reconditioning my heart after all it's been through.

And it's been through a lot. So I'm working on taking care of it. I'm working on helping my body to heal itself. I mean, I've come through Heart Failure. I have every confidence the rest will take care of itself too. Provided I continue to do everything I can to support it. So I'm hoping my body is going to thrive with all these changes to help it function well and I'll be able to move my ticker along until sometime in the next twelve months I meet my first goal. Looking forward to sharing this new part of the musical notes of my life with you all!

Everythings OK, and thoughts for Claire!

First of all can everyone keep my wonderful friend Claire in their thoughts. She's facing something quite scary over this coming long weekend. I'll be sending lots of positive thoughts her way and would appreciate if you could do the same :)

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I'm not feeling too well at the moment. But I'm happy and doing well at the same time. The cycles of chronic illness are so unpredictable, which can cause such frustration when you have plans you desperately want to keep. There's a feeling of lost control over your own body, a difficult thing to explain to someone who hasn't been here. Those well versed with chronic illness in their own lives know what I mean. One morning you feel fine, by that evening you're in pain, or absolutely exhausted, or short of breath, the list goes on.

I however now find the unpredictability somewhat predictable. Confusing? Well, I know for sure my health issues are not going to disappear. I know for sure that certain things, such as lack of sleep, a unhealthy eating day, not resting when my body tells me too all contribute to my not so healthy days. Then there are times I do everything right and still feel yuck. It's going to happen. It's part of my life. It's part of who I am now. It's somewhat predictable. Unreliable, and yet so very reliable at the same time.

So I'm not feeling too well tonight, but I am happy. I am feeling contented. I am being kind to myself and not pushing myself to do more. I am grateful to be in this part of my journey, travelling with happiness rather than towards it.

Awaiting as update?

Yes, I did visit one of my specialists today.
Yes, it went quite well.
Sorry, have lots to digest and this is sadly not a proper update.

I do have concussion though. Baby A smacked his head into mine, and ran away laughing having no idea he'd just given me a rather large forehead lump. The joys of being three.

A sick Mum who does get sick days

I know that for many parents, one of the hardest things to adjust to once starting a family is no longer being able to put your owns needs first when you feel unwell. You still have housework to do, kids to feed and look after, washing that needs doing, the list goes on. When you get sick, most times you can no longer crawl into bed and take care of yourself. You don't get sick days.

Now in my situation the same thing is true. It just occurs much more often then we ever imagined when we were planning for our family. My husband can't take every day off during the week that I feel unwell, otherwise he would hardly ever be at work. We can not afford full time care for our twins. There are some days it is just unavoidable. I feel terrible, but there is much to be done. The fact is, on these kinds of days It is hard to think of anything good about having a chronic illness. I struggle to remain positive while feeling short tempered and exhausted. I can't find the energy to dress myself, let alone my twins. I have realised though, that learning to live with a chronic illness is a process. Through it I am learning to be kinder to myself and less hung up about being the *perfect* Mum.

I am very lucky in all this to have a very supportive husband whom allows me to rest up all weekend. All Weekend. For example, it's Sunday evening and I've had a grand total of about three hours out of bed all weekend. I am exhausted and my heart is racing. The boys have been coming in for cuddles and stories, but on the whole have had a fun weekend with Daddy. I am not ashamed to say that this is not an uncommon occurrence. I have learnt to put myself first, to give myself the best possible chance of getting through a week with as little stress and fatigue as possible.

The boys are preschoolers. They are so active and yet only attend kindergarten three afternoons a week. I am happy to share that three mornings a week they go to before kindy care. That's right. I'm a stay at home Mum with a Nanny. This has been the best possible move for us all.

Those days that I have two little boys at home all day and I feel as though I've been hit by a truck? Well, cereal isn't going to hurt them. Even if they get it for breakfast and lunch. They love yoghurt's and fruit(Yay for Claire, who has recently gave us with even more of the boys favourite things! We love you!), two things I have to do very little with in order for them to be served. They get dressed if Craig has managed to do it, otherwise a PJ day is declared. We have an easy dinner, and we do try to get out of the house (Dressed, don't worry!) for a short walk to get Daddy from the bus. It's my daily walk and for them some time out of the house. A ten minute walk has been managed to be stretched out to about half an hour ;)

All in all, I just let it go. The housework isn't going anywhere. The room I began de-cluttering a week ago will get done on a better day. I lower my expectations and I take care of myself and those boys and that's it. Those are my sick days. It's been a journey to this point for all of us, especially my husband and I. A lot of guilt and expectations about roles in the home has gone, leaving a peace and gratefulness to each other for all that we do. And even though this sounds incredibly strange, I congratulate myself for putting my health first so that I am here with my boys. In every sense of the word.

Prince James

I love to make up stories to tell my boys. Either before they go to bed, or in the morning all tucked up in our bed is our favourite time, and I find both my boys love the stories in which they are the lead characters. Yes, I realise I am using the boy's real names in this. It's much easier in this circumstance and their names are indeed no secret to most reading this. i just like using Baby A and Baby B as it helps me wax nostalgic about back in the day when they were in my tummy and that is how we knew them.

Anyway, onto this morning. James was in bed with me, Benji having woken up at some horribly early hour 5.50am. I asked James if he would like a story, and the following is what I told him. Keep reading to see the story he told me afterwards;

Once upon a time there was a little boy, Prince James. He lived in a castle and his room was right at the top, with a view out to his friends houses. One morning he woke up and looked out the window to see it was a beautiful day. To his surprise he could see his friend Thomas the Tank Engine puffing along the tracks near the castle. Prince James quickly got dressed, walked safely down the big spiral staircase and outside to the Castle's railway station. He got there just as Thomas arrived.

"Would you like to go for a ride?" Thomas asked.

"Yes please!" replied Prince James, very excited. All of a sudden, just as Prince James was about to climb into Thomas, Swiper the fox appeared and swiped all Thomas' coal! Naughty Swiper threw all the coal into the forest, telling Prince James he would never be able to find it now. Thomas was very sad, as now he couldn't take Prince James for a ride. "Don't worry Thomas, I'll find your coal!" Prince James promised bravely.

Prince James set off into the forest. He knew he was only allowed to go as far as the clearing so he hoped he would find the coal quickly. There were four pieces missing. He found the first one by a tree as soon as he entered the forest. He walked a little farther and came across a Monkey in a tree. The Monkey was playing with a piece of coal.

"Hello Monkey, could I please have that piece of coal for my friend Thomas?" Prince James asked.

"You asked so nicely, of course you can." The monkey said, and gave Prince James the piece of coal. Prince James kept walking a little bit farther and found a little mouse, trying to lift up a piece of coal.

"Hello mousie, may I please have that piece of coal for my friend Thomas?" he asked.

"Of course, as you have lovely manners." replied the Mouse.

Prince James set off to find the fourth and last piece of coal. He eventually came across the clearing, where he found his brother Prince Ben. Prince Ben was playing with the last piece of coal!

"Ben, may I please have that piece of coal for my friend Thomas?" Prince James asked nicely.

"NO! My coal!" Prince Ben replied grumpily.

"Please Ben, when you're finished your turn could I have the piece of coal?" Prince James tried once more. Prince Ben was very grumpy, and shook his head.

"I don't think so. It's Mine! I want it!" he yelled. All of a sudden the Prince's Daddy appeared.

"Prince Benjamin, you need to share with your brother please. When you have finished your turn please give the coal to Prince James. Otherwise you might need a time-out." He said. Ben looked at the coal, and then gave it to James.

"Here you go James, your turn." he said. Prince James was very happy. He ran all the way back to Thomas, who was also very happy, and they both set off on their fun ride. The End.

At this point James decided he wanted to tell me a story. The story he shared is as follows;

Once upon a time there was a little girl called Mummy. She saw Thomas, and me, and then Swiper came. He took all the coal. So Mummy and me went and looked. We found a monkey "Please Monkey." and the Monkey gave it to us. We saw a Mouse and said "Please Mouse" and the Mouse gave it to us. Then we saw Ben. We said "Please Ben." But Ben said "No!" Then Daddy saved me, and Ben went wah wah wah. The End!

I quite like how Daddy 'saved him'.

Cute.

When will I know what I want to be? Who am I now

I have often pondered just what I would be when I grew up. When I was very young I was convinced I would become the Prime Minister and do away with taxes. I didn't understand how someone could just take part of people's incomes and get away with it. As I got a little older I decided I would be a vet. Small problem, I'm scared of most animals. So then I moved on to wanting to be a writer, and by the time I finished High School I had settled on Nursing. After completing year one of the Nursing degree I realised I was much too emotionally involved to continue in that career.

I felt I was back at square one. I was eighteen and felt like I was failing because I didn't know what to do with my life. Now, at this point in my life I think what a ridiculous amount of pressure I put on myself. I began hunting out job options, and study options at University. I decided to do a general degree so as not to be trapped on one career path. I managed to achieve a Bachelors of Arts in Psychology and Criminology.

But I still wasn't sure what I was going to be. I felt I should be doing something amazing, changing the world or at least making some kind of difference on a large scale. As it turned out, we started our family at this time so all my thoughts of jobs or study faded away as I became a full-time Mum. And then a chronically ill Mum.

I still find myself from time to time beating myself up for not financially contributing to our family. For not being clear on where I'm going. For having a non existent career path. Then yesterday, as I found myself once again feeling panicked by thoughts of never being able to hold down a full time job, or even what kind of job I would ever be able to do, I stopped. I thought about the article in this post. I thought of all my friends and family. People who love me and just want me to be happy. I then realised when I have these negative thoughts I am putting down who I am now. I am badgering myself for things that haven't happened yet and that I have no control over.

I don't want to be missing my right now, to focus on a fuzzy future. Right now I am a Mum. I contribute to our family in so many ways in this role. I am an Auntie, one of the best roles ever. I am a daughter, a sister, a friend. A wife. Sometimes a chronically ill person, but most of the time a Survivor. All of these things are so much more important than figuring out and berating myself over a future role which may or may not become possible to fulfill. This is taking away from my right now.

Of course as my lovely good friend Michelle says, it is good and important to have goals. Something to strive for and look forward to. The thing i struggle with is setting myself impossible goals and pinning my happiness and sense of achievement on achieving them. I knock myself about my illness induced weight gain, feeling I should have complete control over what size my body is. In my situation I actually need to get better before this weight is going to shift, something I have no control over. I can eat well, and exercise and that's the best I can do.

So I'm taking my focus away from future career moves. I'm going to stop asking "What will I be when I grow up?". I'm going to stop using the scales as a judgement of how well I am looking after myself. I am going to focus on Right Now.

Longest, tiring, good then scary day ever

I had my gynae appointment today. I was really nervous about it. I'm not entirely sure why. Last time I had my Mum and sister accompany me, while this time I went on my own so that may have been part of it. The appointment actually went really well, and THANK GOODNESS I don't need surgery at this point. The large cyst I had has dissolved, and the right overy still looks polycystic. I may have some endometriosis, but with the rhythm issues I am having with my heart my wonderful gynaecologist feels that surgery at this point in time since the large cyst has gone would be way more risky than beneficial. I'll stay under his care, and just go in to see him if I get the severe pain again. He's the most fantastic doctor.

I think all the driving really tired me out. I ate poorly today as well with all the rushong away, so by the time it got to kindy pick-up I was fairly exhausted. Which I think contributed to what happened next. Due to my appointment time my Mum had dropped the boys off to kindy and had one of their car seats. On the way out of kindy Baby B asked if he could go in Grandma's car and we had been invited for afternoon tea so agreed he could have a turn in Grandma's car. Next thing we know, Babies A and B are racing each other down the hill to try and find the cars. Now they know not to go out of my line of sight. If they can't stay close to me they have to do the most dreaded thing - hold my hand.

They also know that due to my heart rhythm issues I can't run after them (Mummy gets a tired heart and can't keep up!). Physically, when I run I feel as though I am going to pass out. On occasion, I have passed out so running = not good for me. So I desperately call out after them, threaten them with time out and walk as fast as I can to catch up. I reach Baby A. Baby B is nowhere in sight. Luckily my Mum was there with my three nieces and nephew she was picking up and spied baby B ACROSS THE ROAD! This road is extremely busy with all the parents picking up their kids. I have no idea how he got across it.

The worst thing is, my Mum had two kiddies by the hand, and I was walking some way behind her, trying to catch up to take Baby A's hand. Before I could get there He suddenly darted out onto the road, right in front of a car. The driver barely managed to stop in time, and was extremely shaken up by it.

I told them off so sternly while holding back tears. But for the grace of god we'd be at the hospital tonight. We've put the boys to bed early as I'm just exhausted physically and emotionally tonight. I held them close and gave them goodnight kisses, and thought I have never taken you for granted. I don't need a wake up call to how precious you are.

But perhaps I need a wake up call on how we behave out in public when I'm not feeling well and can not chase them. It's too late when I pick them up and am already tired to work out a plan. But tonight I am going to sleep early. Tonight I am just so pleased both boys are snug in bed, healthy and safe.

Brothers & Best Friends.

UPDATED; fits the page better so as to actually see the photos ;)

Make an on-line slideshow at www.OneTrueMedia.com

I really love my computer

Really. I do. There's just so much one can do on the computer. It's kinda like all the different things one can do with shrimp....

Like for example, if you have internet and preferably broadband one could watch online episodes of their favourite programs. This would mean someone in say New Zealand could keep up to date with American shows and not find out season finale details from American friends on FaceBook, or while watching E!. One could then find out the names of songs they like when all they can remember is one line, and then download that song from iTunes.

Online you can shop, chat, research, keep in touch with people over the other side of the world.

One could also be drafting a novel on said computer.

One could become so obsessed with their computer no one else is allowed to touch it. And that same person begins to refer to themselves as 'one'.

Ahem.

Maybe time to log off? Perhaps. Except the computer is a chronically ill girl's best friend. You know, apart from actual people.

Carvedilol: 1; Carla: 0

So the increased dose of my beta blocker seems to be kicking my butt at the moment. I'm going to bed at 8-8.30pm every night and sleeping right through to 7am. Still waking up tired. Still need to rest most of the morning. And still getting break-through tachycardia.

So that's all from me really. A short precise update as to why there may be fewer entries this week.

At least I have yummy Claire Mandarins.

Good night!

Bondi Band Giveaway Over at Multiples... and more...

See the neat blue I love Multiples button over on the left hand side of my page? Give it a click and head over to the Multiples and More blog.

A fantastic blog, the writers of which are currently conducting a fantastic giveaway. Just by leaving a comment you go in the draw to win a Bondi Band.

Go have a look! :)

Friends I am blessed to have

I had something happen this morning which completely made my day, took me aback and made me smile. I shall also mention that the thing that happened was so amazing it managed to do all of this for me on a day I am feeling really icky.

I have amazing friends. I have such lovely, supportive people that have come into my life and I'm lucky enough they have stayed around :) One of my very good friends also happens to be my oldest friendship. We've known each other for 22 years. We've been through school together, high school, University (Albeit it took one of us a little longer to decide what to actually do, hence doing a year of one degree and then dropping it to do something completely different. I won't mention any names. Ok it was totally me...). She was there for me when my wedding ended up changing plans dramatically, when I had my twins and when I got sick. I was lucky enough to attend her wedding to the most brilliant man earlier this year.

Well this morning this particular amazing friend dropped in with some groceries for us. She knew I hadn't been to the store, and also saw my other post this morning about our stock of coke and little else, and bought me many yummy healthy snacks, breakfast food, juice, cream for my poor hands and milk! It is just the most incredible thing, and all this done during her morning work break.

Now asides from the fact this was an amazing, sweet gift is the fact something became very apparent to me. I have friends who care about me so much they are willing to spend their hard earned money on helping me to become well. In my lovely groceries this morning were lots of low GI goodies. For a good few years I have known I need to focus on changing my diet, and low GI is what is suggested for those of us with PCOS. Having a good knowledge of low GI foods, my wonderful friend bought me the many goodies she knows taste great.

This is a friend who notes down my medical results and researches them for me. Who gives me great advice on how to speak with my doctors. Who takes me out to the movies for some time out. All this while she leads an extremely busy life herself, but she never once has made me feel she doesn't have the time for me. Thank you Claire, you are an amazing, beautiful, intelligent, kind and caring person and I am so lucky to have you as my friend.

And do you know what? It doesn't stop there. I have Michelle who calls me from all the way in London, who reads my blog to keep up to date with all my health issues and what my boys are up to, who sends me beautiful touching emails that make me miss her even more but also absolutely make my day.

Kylie who gently but firmly makes sure I am taking my meds correctly (She can, she's a nurse!), reads my blog everyday, catches up for chats each day before kindy pick-ups and never makes me feel bad when I have to cancel a catch-up at the last minute due to my health. She's a true treasure.

And AN. My soul-sister.

I have so many people in my life that surround me with love. Right now I am thinking particularly of you four. Thank you for being my friends, I love you :)

How I know...

This is how I know my darling husband was the one to go grab our grocery basics this morning;

1. I went to look for some milk and the fridge contained two big bottles of Coke. No milk.
2. My twins had cupcakes to take with them for lunch at their caregivers.
3. My twins had chocolate bars taken off them they insisted were for lunch at their caregivers.

But most importantly I know because my husband ended up running late for work. To make sure I didn't have to get up and rush down to the shops before the boys set out for the day. Because I got a magazine, and I never buy them for myself even though I want to.

The amount of love put into getting those two big bottles of coke? Well, I can go without milk for a day. Thank you my sweet husband.

Not me! Monday!

It's another Not Me! Monday! Head on over to Mckmama's blog and see what everyone else has not been up to. Maybe wait until tomorrow though if it's specifically Not me's! you want to see, since it's not Monday there until tomorrow!

OK, There are so many things I wish I had not done this week. Luckily I get to pretend I didn't, Fantastic! SO this week.....

I totally did not find an old South Park CD from my teenage years. I detest that programme and most certainly would never have liked it enough as a teen to have bought a CD of their movie music. I then did not find one of the worse songs on the CD and decide to play a trick on my husband by setting that song up to play when he started the car to go get our groceries. My husband was not so totally horrified that he turned off the cd player, forgetting to take the CD out so it was still set to that song. On our way to kindergarten the next day, the song so DID NOT start blaring teaching our sweet boys their very first BAD word. (As an aside, if that had happened, said bad word has thankfully not been repeated!)

That CD did not find itself in the trash.

I do not hate it when my tricks backfire.

On Saturday I did not have a run of SVT that made me so irritable I had a mini-meltdown at my Mum's house. Nope, I'm always poised and calm when out and about.

My boys love each other so much that when I suggested they shared a room again they both jumped at the chance. Baby A certainly did not say "No thanks, Never again!" When asked if Baby B could sleep in his room like he used to.

And finally, I am not already planning the boys fourth birthday party which is in September. I wouldn't have spent all weekend looking at venues, only for Baby A to say on Sunday night, "I want my party at Grandma's house.". Of course I would think to ask them first before wasting many hours on the internet enquiring about prices for things.

Well that's it for me. I hope next weeks not me! contains NO backfired tricks! No, I really do!

Silly game; Carla needs

This is a game I've seen a few of my facebook friends play in their notes section. Since I'm enjoying a nice, quiet, peaceful mother's day I thought I'd do something that didn't require too much any energy today.

Simply I googled Carla Needs, and these are the first 10 answers I got:

1. Carla needs to call Dan and they need to team up (No conspiracies going on here Michelle, I promise!)
2. Carla needs good governance
3. Carla needs to pee (Diuretics do tend to do that too ya...)
4. Carla needs to use her own toilet (What's with all the bathroom stuff?)
5. Carla needs bread to feed her animals (They actually prefer biscats)
6. Carla needs your support! (that's always appreciated ;) )
7. Carla needs cuddles (Also appreciated )
8. Carla needs help with barking
9. Carla needs to feel a job is really hers
10. Carla needs a change...

For my Mum, for Mother's day

Mum,

Where do I begin to thank you for all you have been and done? Lovingly nursing me through my many childhood illnesses, seeing me through fights with my friends. Through both the ups and downs with my boyfriend whom later became my husband. Helping me hold my marriage together when times got tough. Providing me with such a loving and warm environment in which to grow and learn to be myself. Allowing me to be myself.

And always being someone who would listen. A friend, but even better a Mum. Someone who would set limits and call me out for my bad behaviour. Telling me it was Ok to be sad, angry, upset but also telling me when I needed to start to refocus.

Most of all, for being so strong during the time all parents dread. I know this because when my boys are unwell it breaks my heart. So I know that the fact I have some scary illnesses, some mystery illnesses and some illnesses that will always be with me must be so horrible for you. But you have never made me feel bad or guilty. You have never doubted me, you have always been there holding me up with a ready hug and some kind words.

You willingly take in my twins and cheer them up with cuddles when I have yet another doctor’s appointment. Even when you are so rushed off your feet you really shouldn’t. Even when you are so completely exhausted we both know you should be saying “No.”. You reassure me that I am a great Mum, even though I am ill, even though my boys know more about hospitals and doctors than any three year olds should. It is this among much else that makes you the great Mum. You are leading me by example.

I know Mum, that you would do anything to make me better. I know you spend many nights worrying about my health, my happiness, and if the worst will happen. I hope you understand that because of you Mum I am happy, I am learning to live well with what I have been given (which on the whole, is actually a whole lot of good!) and I can’t promise the worst won’t happen (I’m pretty sure it won’t!) but because of you, my life has been wonderfully blessed.

And not just on this mothers day, but all the year through, I thank my lucky stars that I was given to you.



This post is part of a world wide blogging tribute to Moms led by TheBlogFrog

Stories and a Party

I love the conversations I get to have with my baby boys now that they are older and have become quite adept at stringing a sentence together. This morning for example, Baby A came into my room and asked to tell me a story. I quickly agreed and we sat down together on the bed. Baby A proceeded to tell me a story of Lightning McQueen, Thomas the Tank engine and Percy. Suddenly he stopped and turned to me.

Baby A: “Wind!” He proclaimed. I sat and looked at him a little perplexed confused. “Wind!” he said again, emphatically. So I blew on his face, figuring he was asking me to pretend to be wind.

Baby A: “No Mummy, not wind, WIND!”

By this point, he was beginning to get quite frustrated, and realized he needed to spell it out to me.

Baby A; “It’s the end of the story, so it’s wind!”

Me; “Oh, it’s the end.”

Baby A nodded, finally smiling his big gorgeous smile.

Me; “You know honey that is two words. The and end.”

Baby A; “I know. Theanend.”

………………………………………………………
Our family has been looking forward to this weekend as we were attending a beautiful little girl’s surprise party. I had tried to be helpful in the organizing of this event, but in the few days before hand realized if I was going to make the piñata I really should have started paper mache-ing a long time ago. So the piñata had to be purchased. Instead I went for a treasure map, so all the kids got to hunt together for the hidden treasure. I managed to remember to burn around the edges of the map, but next time I’ll use tea bags to discolour it so it looks like a really old map. And I won’t tie the exact same kind of ribbon in my hair that is wrapped around the map. Kind of gives it away.

So we all had a great time, except Baby B got a little sick and needed to go home early with his Dad. He was quite disappointed as he had been waiting for today all week. We bought him home a lute bag and lollies so he wasn’t left out. I got to bring home the newspaper so I wasn’t left out either ;)

Facing death at 24

I am working hard on my oath to be Happy where I am. Part of this realisation of how I want to live my life, started for me this week a reflection on where I've been. Being diagnosed with a very real and dangerous heart condition in December 2006 at the age of 24 was amazingly scary. It's something I still haven't completely wrapped my head around two and a half years later, and I am beginning to grasp the fact I probably never will. And as my wonderful friend Kylie (thank you for the inspiration for this post hun!) wrote in her comment on my last post, I am a Cardiomyopathy survivor, when many are not. In Memory of those who unfortunately are not.

Some of you may have heard of Tyree. A beautiful 29 year old new Mom with a 3 1/2 month old baby girl. She woke up one morning, picked up her adorable baby girl and collapsed and went into a coma. She was diagnosed with Peripartum Cardiomyopathy(PPCM) with an Ejection Fraction at 25%. She suffered severe brain damage due to lack of oxygen and sadly passed away soon after her collapse. This story really struck me, as a newly diagnosed Dilated Cardiomyopathy(DCM) patient AND as a new Mum. My ejection fraction was 30%. Only 5% higher.

And Karen who was pregnant with a sweet baby boy when she suffered sudden death due to undiagnosed DCM.

Also Lakeisha Nunley whom suffered cardiac arrest due to undiagnosed PPCM, leaving behind a most gorgeous baby boy.

These are just some of the amazing women and Mothers whom have had their lives cut short by this disease. I will always keep these strong, brave women and their families in my thoughts.

Then there are all the amazing women I have found through amothersheart All of whom, like me, are survivors of Peripartum Cardiomyopathy or Dilated Cardiomyopathy (Same condition, different causes). Each of whom have amazed me with their strength, compassion and support.

For me, what have I been left with? A lifetime of heavy duty heart meds. An arrythmia caused by the damage to my heart. Annoying weight gain, diuretics, shortness of breath.

My Life.

But you don't look sick?

For me, the answer I'd like to give to this question/statement varies between two responses.
1. Wow, you don't look stupid either!
2. Really? *take a quick look at myself* Thank goodness, I'm cured!!!

There are many difficulties which come from living with a chronic illness. One of the things which can make it even more difficult though is the lack of understanding from other people. I'm not talking about people who truly don't understand, and whom ask me more about my health, or what it's like to be sick all the time, or how I manage to have such happy twins (Truly blessed would be the answer to that one!). It is the people who do know, or the people who make their own assumptions and stick to them regardless of further information who really get to me. It's the comments my husband fields when attending things without me, the people whom tell me I am looking well in a condescending way which just dares me to say otherwise.

Don't get me wrong. There are kind, loving people in my life whom tell me when I look great, and I love it when that happens because it means I really must be looking well. This is in no way addressed towards you.

On the whole I am an excellent actress. I strive to perfect the role of 'healthy person'. I often attend things with a smile pasted on, looking for all the world just like anybody else. Then I get home and have to sleep the afternoon away just to feel semi-normal again. The thing is, this is the way I want to be. I don't want to be sick, and most of all I don't want to look sick. I mean, it's bad enough I feel icky a great percentage of the time.

One of the things I think many people don't realise is how much guilt comes with being chronically ill. Not only that, but in being a chronically ill Mother. Before I had my twins I thought I'd stay at home as it was my choice. Now I stay at home not only because I want to be here with my babies, but also because I can't work. I probably won't ever be physically up to contributing financially for my family by means of having a full time job. My babies go to a caregiver three times a week so I can rest up and go to doctors visits. I have to rely on the kindness of family members and friends to watch my twins so I can attend specialist appointments outside of that time. Which, having six specialists and weekly GP visits, does happen sometimes often.

So my point really is that for those people whom don't recognise someone as suffering a true illness unless they look really sick (and what does that look like anyway?) or just can't help but see individuals with hidden illnesses as hypochondriacs, Please keep your opinions and judgements to yourselves. Or be prepared for a little dose of sarcasm.

You can't say you haven't been warned ;)

What's getting married? and other three year old musings

Going through some old photos today I came across the ones of Craig and I from when we got engaged. Sitting peacefully, reminiscing it wasn't long before one of my adorable babies came along and snatched the photo out of my hand. "That's from before Mummy and Daddy got married." I told them both as the fought over who would hold the picture.

Baby A; "What's married?"

Me;"When two people love each other very much and decide to stay together forever and ever and choose to do that by taking special vows."

Baby B; "Like me and Baby A!"

Me; "Well, not exactly..."

Baby A; "Yeah, no Baby B. I don't wanna be with you forever."

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I love it when kids have big imaginations. I find nothing cuter than a child making up a story, or playing a game of their own invention. With this in mind I have been actively supporting and nurturing my babies imaginations. Maybe though, I have been a little too imaginative. My children have become immune to my crazy games.

Today as I had a shower I heard Baby A come into the bathroom. Ahh, what a great opportunity to make him think there was a duck in the shower. So I made quacking noises, and I really did sound just like a duck! However baby A, in a very bored voice, simply said "Hello Mummy." This in a tone which suggested he was becoming a little exasperated with my games.

Me; "How did you know it was me Baby A?"
Baby A; "Because last night I was nearly a sleeping and someone jumped in my room and said 'Morepork!' and it was you. So all silly stuff is you Mummy."

Ahh, bright child.

Happiness is not a destination, but a manner of travelling.

I have a very wonderful Father. I have grown up admiring him, hoping to one day be just like him, and knowing I would only ever marry someone who loved me as much as he loves my Mum. Holding a job which required him to travel a great deal led to my Dad taping himself reading us bed time stories, so we'd still hear his voice every night. I had a habit of making up long, 'interesting' poems to tell him over the phone when he would call my Mum during his lunch hour. He always encouraged us to follow what we love to do, and to always put in our very best.

Something I highly value in my Dad is his ability to give subjective, wise advice. He's also excellent at cheering up someones day when they are a little down. The fact he is highly intelligent and quick witted I think gives him the unfair advantage :)

So the last little while has been a bit rough, and I began to feel a little like I was in over my head in terms of our financial situation. I felt as though I was letting a lot of people down with my poor management of our budget. It was during this time I received a lot of information to ponder over. Such as the fact that we are on a single income, and my illness in and of itself is costing us a fair bit of money we could never have foreseen needing before we had our children. Also something I had never thought of before.....

What I wish for my boys: Health, happiness, joy. It's exactly the way my parents feel about us girls. All the guilt I had over being in debt, getting so upset about it and then having a lot of health issues in the last few weeks years to deal with was all too much. I was unhappy. And in being so caught up in making up for getting us into debt I didn't see that my unhappiness was actually causing for the people in my life a lot of worry and unhappiness in itself. Much better would be to think, hmmm that's a growing pile of debt. Am I doing what I can to pay it off? Right then, moving on.

So the last few days, since these epiphatrees epiphanies I have begun to feel a lot better. And today I received an email that I really needed. Something which is going to be my focus until I am feeling 100% about things again. An article that reminded me of the quote I used in my title. And the reason I spoke of my Dad earlier on? Of course the source of my inspiration came from him. Thank you Dad.

Be happy where you are

Dr. Richard Carlson

One of the most tragic things I know about human nature is that
all of us tend to put off living. We are all dreaming of some magical
rose garden over the horizon – instead of enjoying the roses
that are blooming outside our window today. – Dale Carnegie


Sadly, many of us continually postpone our happiness – indefinitely. It’s not that we consciously set out to do so, but that we keep convincing ourselves, “Someday I’ll be happy.” We tell ourselves we’ll be happy when our bills are paid, when we get out of school, get our first job, a promotion. We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren’t old enough – we’ll be more content when they are. After that, we’re frustrated that we have teenagers to deal with. We will certainly be happy when they are out of that stage, We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, are able to go on a nice vacation, when we retire. And on and on and on!

Meanwhile, life keeps moving forward. The truth is, there’s no better time to be happy than right now. If not now, when? Your life will always be filled with challenges. It’s best to admit this to yourself and decide to be happy anyway. One of my favorite quotes comes from Alfred D’ Souza. He said, “For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.” This perspective has helped me to see that there is no way to happiness. Happiness is the way of life.

I'm a little mean

UPDATE; The appointment yesterday did not, unfortunately, inspire much confidence in me. Asides from the fact he reviewed my blood tests, declared them ok, and then looked again and said "Hmmm, except the ones in red. Those are quite abnormal. Interesting..." He seemed to be completely out of his depth in what all my medications were for, and thought it would be good to come off them all and see what symptoms I had left that may be able to explain the abnormal blood tests. Reminds me of an episode of Good idea, Bad idea....


May is my month of specialist visits and follow-ups. Beginning yesterday with my Cardiologist, whom has increased my dose of Beta Blocker (Which works to slow the heart rate and relax blood vessels) to the maximum to try and get my arrythmias (rapid and uneven heart beat) under control. Today I see my General Specialist. He's the poor guy that got given my case after three other specialists couldn't figure it out and kept referring. I feel quite sorry for him.

I also feel a little mean. I think he thought he'd figured it out. I'm quite sure he expected me to come back in and tell him I was feeling much better, and my bloods would be back to normal. Unfortunately my latest bloods to check inflammation in my body are even higher, and I've been getting severe muscle aches even more often. Now I'm the one that will find it interesting as to what he has to suggest. Probably a different specialist since my body isn't cooperating.

Then I have my gynae follow-up to see if the giant cyst needs sugical removal. Tricky stuff with my heart condition and arrythmias. The onto the Endo to talk PCOS and pre-diabetes. Much fun.

But maybe, May will be the month I learn so much more. May might be the month my arrythmias come under control. I certainly am hoping for it!

Not me! Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After a hiatus from Not Me! Mondays! due to baby Stellan's illness Mckmama is back to doing her Not Me! Monday posts, so I thought I'd join in.

Okay, so this week I totally have not been trying out lots of new healthy yummy recipes. I most certainly am not very unfamiliar with vegetables of the unfrozen variety. I definitely know what a courgette is, and don't need to ask if the skin needs to stay on or be cut off. Of course I knew how long they needed to be cooked, and had no need to ask AN when she was here yesterday for dinner.

This morning my little Baby A did not bring me the box containing my Pilates DVD's and ask me what they were. He then did not mistake what I had said and think it was a box full of my farties. He was not completely disgusted. But say that had happened, Baby B would definitely not have found it absolutely hilarious.

I have not left poop on the floor downstairs in favour of quickly checking my emails. Of course my boys are three and a half now and would never poop on the floor. If they did of course I would clean it up promptly before hopping on the computer.

I have not started watching episodes of Desperate Housewives online in an effort to get to bed earlier on a Monday evening. Most certainly I have not been totally negating the early Monday nights by staying up until 10.30 every other night to watch another Desperate Housewives episode. That would be silly.

And finally, my house is not in need of a good vacuum, dust, polish, tidy and general overhaul. It is spotless and sparkling and could be used as a showhome.

That's it from me! Happy Not me! Monday!

When Thank you isn't enough

"At times our own light goes out and is rekindled by a spark from another person.Each of us has cause to think with deep gratitude of those who have lighted the flame within us."
Albert Schweittzer

There are times when living with a chronic illness becomes very overwhelming. Your optimism wanes, you begin to wonder if things will ever get better, or if they are always destined to get worse. You wonder if a cure will ever be found for the conditions you have, or sometimes even if it will be discovered what condition you have. There are times it all seems so unfair. You feel sick of being sick. It feels as though the part of you that flickers with hope and optimism is beginning to estinguish, and you begin to accept that this is as good as it gets. I have experienced this a handful of times during my illness. Most recently, I had hit a rather rough patch. I am extremely lucky to be surrounded by many loving family members and friends whom are not willing to allow me to stay down though. Tonight, I want to say thank you to my Best Friend Forever, whom shall be known as ataahua ngeru (AN for short). Today Ataahua ngeru drove the half hour drive to our house and spent the afternoon with my family, playing with the boys and generally cheering us all up. AN has always been there for me, and we have known each other since starting high school, close on 14 years now.

AN knew I'd been having a hard time of late. She had been very worried about me so has been making us meals (Yummy soups!) and coming to visit even when I wasn't well enough to be up and about. We talk about everything, and I always feel so much better having seen her.

Well AN today came with a gift for me. It was a gift of health and happiness. It is a gift which means I will get some advice and guidance in what I can do to nutritionally get my body through the tough times in my chronic illness. It is a gift which means so much to me, that Thank you just doesn't feel like enough.

I'm pondering this tonight. Gratitude, and feeling so fulfilled by something, so happy and peaceful. How can you ever repay that? It's refilled my optimism tanks and relighted my hope, and I'm just about back to feeling like my happy self again!

I'm working on it

Updated; I like the four hearts representing each person in my little family, but now with three columns I think it needs to be bigger. And you can't read the two outside columns. Great! Who knew HTML code was so tricky!

Edited to add, I do like this header a little more :)


As you can see, I've been spending my day working on HTML and XML codes and changing up my blog for Autumn. I don't think I'll do this too often!!

It's not done yet, but if you have anything you miss from the old blog that you'd like to see back, or if anything is hard to read/see OR if you have ideas on how to improve my header (So not happy with it!) Please leave me a comment down the bottom of this post.

Go on. I Dare you!

A Lot To Say

I have a lot to say. If only I could remember what it was. That would be a good start.

My two cherubs tonight had the funniest conversation with me. They were both in their bedrooms and I was in mine. Baby A called out, but I could barely hear him and I didn't want to have to get up (First time I'd sat/lay down all day!) so I repeated to him what I thought he'd said.

"You're broken baby A?"

Baby A: "No Mama, my poster is broken."

Me: "Ok baby A, we'll fix that in the morning."

Baby B: "Mama, me too!!"

Me: "You're poster is broken too baby B?"

Baby B: "No mama, I'm broken."

Silence...

Me: "Ok honey, we'll fix you in the morning too."

And thus all worries taken care of, my two sweet boys fell happily asleep.

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We had a really lovely day today. We went over to my Mum's house and the boys played with two of their cousins (Aunty 'lil ones beautiful kiddies). The four of them had so much fun together, and I was lucky enough to get lots of cuddles from both of my beautiful nephieces (my word for both nephews and nieces). I'm really proud of each of my sisters, and today I'm going to share what I really admire in my sister, 'lil one. Amongst many things is the fact she manages to study full time while taking wonderful care of my almost four year old niece and 15 month old nephew. Not just study though but put her all into her work, achieve incredible marks and submit high quality work. Because she really cares about her study, and what she is working towards.

There are many things I am proud of, which I won't go into so i can protect her privacy but it's suffice to say that it is an honour for me to be big sister to 'lil one. I see things in her I hope one day will rub off on me ;)

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Health update:
I can return the event monitor as it has given me a terrible rash so I can no longer wear the electrodes and thus can't record any events. All I managed to get was episodes of my Sinus Tachycardia and some PVC's and PAC's. Nothing we didn't already know about. So now I need to make a follow-up appointment with my cardiologist and I may be able to go onto an antiarrythmic medication. This would be great as I then would be able to exercise (If it works and brings my heart rate down).
My ESR (Indicator of inflammation) is steadily rising. The doctor referred me when it hit 24 and had been there for close on a year. At my last appointment it was up to 54. Yesterday the result came in at 68. My CRP is now also up from 14 to 20. Normal for these tests is under 15-20 for ESR and under 10 for CRP. I see the general specialist on Tuesday so it's up to him to try and puzzle this out!

That's all I can think of right now. It's been a whole week of not blogging, so I'll be sure to try and make up for it this weekend :)