Living a Blessed Life

Immortality DailyPost#15

2011-01-30T20:43:00.002+13:00

Yes I missed yesterday.
And with school starting back on Tuesday I may miss more.
However I am still aiming to post most days, even if I change my goal to a post a week, there'll still be more from me than last year so no complaining! ;)

I decided to use the writing prompt from a couple of days ago;

If you could live forever, would you? Why or why not?

If I was given the choice to live forever I would not take it. Surprising as it might seem, I have no desire to live forever. That would mean seeing all my loved ones passing on, it wouldn't take very long before I was extremely lonely.

Besides, we are not meant to live forever. If we were we would!

xoxo

Outdoor Movies DailyPost #14

2011-01-28T22:48:00.002+13:00

We all had one of the best days today. The boys and I got to go to a picnic at a friend house, the twins got to catch up with lots of their school friends and I got to chat with the lovely Mums. It was such a nice way to spend the last day of the school holidays (Except for Monday, but I don't know if I count Monday since it will really be a busy day preparing for school).

We followed this up with a trip down to the Arena to watch the outdoor movie with some of the same lovely friends, and also with my niece and nephew. It was such a nice night, not to hot and cloudy (Yet I still got sun burnt), and we got to have a picnic dinner. Bliss.

I am now quizzing my lovely husband on some of the strange things I have been known to say in the middle of the night when he is trying to sleep so I could share, but he's drawing a blank. Too sleep deprived he says. Often I'm half asleep and get a sudden fear - like that a person/ghost is hiding in the walk in closet, or a rabid squirrel ghost is breaking into our house. By the time I have made my lovely husband go and check everything, he gets back to bed and I am fast asleep. More recently I have apparently had a fear that my legs are turning into trees. Yeah, i don't know where that comes from.

xoxo

Musings DailyPost#13

2011-01-27T20:49:00.003+13:00

It's been a quiet day today. I was feeling unwell and decided to let myself rest, so have been relaxing and not doing very much at all. Which doesn't really make for a very fascinating blog post.

I have been feeling quite motivated to get back into exercise now that it is safer for me to do so. I went for a walk all on my own last night with some music and it which actually really nice. Maybe not the best idea given the chill wind and my ever present chest infection, but nice nonetheless.

Tonight even though I haven't been feeling so well I managed to do 20 minutes of Pilates.

And now I'm fulfilling my daily post obligation and listening to the twins arguing. TWO HOURS past their bedtime and they just will not go to sleep. So much for getting back into routine before school starts!

xoxo

When I'm reading a book... DailyPost #12

2011-01-26T18:57:00.001+13:00

Unexpected DailyPost #11

2011-01-25T20:59:00.002+13:00

I had two very unexpected events occur in rapid succession today.

It has been a reasonably long day as I'm not feeling well and I had to drag myself down to see my General medical Specialist. That all went well, nothing new there. I was very lucky that my wonderful MIL had the twins for me so they had a great time there instead of hanging out at the hospital.

I managed to get my concerns across about my weight and actually be listened to. That was nice for a change. The specialist made some light hearted yet serious comments;
"With all you have been through, I would just enjoy every single day if I were you"
"Being overweight right now is the better alternative." (Coming off medication which would be BAD)

But it ended up being a strange kind of day. Where small comments went full circle and gained much wider meaning by the end of the day.

I got home reasonably late and decided we would have an easy dinner. During our meal I received a phone call from my Mum letting me know my Poppa is in hospital with a second suspected Heart Attack. I love my Poppa dearly and he is having such a rough time with his health.

Just after hanging up from my Mum I decided to explore some of the blogs I used to follow before my blogging break. One in particular came to mind, of a fellow PPCM survivor which also chronicled her weight loss journey. I was shocked to find that nine months ago she suffered a Cardiac Arrest and passed away. She worried so much about her size and how she looked, right up to her final post. It really struck a chord with me, and made me think of what the specialist had said in a new way.

While my sweet blogging buddy may have carried some extra weight she was a beautiful person. And a kind person.

Which to me counts for so much more.

xoxo

A Sound That makes me Smile DailyPost #10

2011-01-24T19:23:00.002+13:00

What is your favorite sound?

My most favourite sound would have to be my two little boys chatting to each other. As babies I often wondered how the two of them would relate to each other. Whether they would have a strong bond, if they would be competitive with each other, if they would be friends or would barely tolerate each other.

As it turns out, so far so good. At five years of age they have the typical sibling arguments - they are around each other almost 24/7 it would be odd for them not too. They definitely have their love-hate moments and times where they argue just for the sake of it. But over all they are great friends, and LOOK OUT anyone who crosses either one of them. They have an amazing sense for when one or the other of them is in trouble. It can be quite scary if they think the other is getting an unfair deal.

I love also when they make each other laugh. They have the most amazing senses of humour developing and we can often hear them giggling when playing together or when they are meant to be going to sleep.

Some of my other favourite sounds?

Bird song
Waves crashing on a beach
Rain on the roof
Listening to all my sisters chatting
Craig's voice

xoxo

DailyPost #9 Does it count?

2011-01-23T21:51:00.001+13:00

Does it count as a post when it is only one sentence about whether or not a post counts?

Why yes. Yes it does ;)

xoxo

Growing your own DailyPost #8

2011-01-22T21:13:00.004+13:00

Well I have never been one to consider growing my own Vegetables and/or fruit. I am absolutely petrified of bugs, so the idea of gardening in itself creeps me out, let alone planting my own food, trying to keep bugs off it and then risking eating something that may or may not have a bug in it.

This is not an entirely irrational fear. When I was younger a friend of mine had a huge apple tree growing in her garden. The one time I took one to eat, I discovered a hole in it before I took a bite. Thank goodness. Her sister was not so lucky and ended up with a mouthful of apple mixed with worm. I still shudder when I think of it.

However I was lucky enough to receive a tomato plant for Christmas from my most wonderful childhood (Not the same as the apple incident!) friend. I have never been great with keeping plants alive, but with this being a gift and being a plant my friend had carefully grown from a cutting of her own plant I decided I was going to really try hard to keep this one alive.

And I have.

Not only is it alive, but it has grown amazingly well. On our kitchen counter. Now it is at the point I need to find a new home, and I'm actually looking forward to the possibility of having tomatoes I managed to grow myself! Luckily we have a glassed in area on our deck, so this is where our lovely lone tomato plant will go, and hopefully thrive.

Now I have started thinking about what else we could try to grow, and ways to avoid my bug and mud aversion. I have found some raised gardens which would look lovely on our deck, once we can afford to buy some. From this lovely gift of a tomato plant I'm actually becoming slightly interested in growing more things of my own.

I know some of my lovely friends have vege gardens, do any of you out there have any tips or advice for someone VERY new to the idea of vege gardening?

xoxo

DailyPost #7

2011-01-21T20:31:00.002+13:00

I had a few ideas for today's post:

Seven Things I love about the number Seven

An interesting conversation I had with the twins about Good & Bad (Will do this in the future!)

A revisit to the Spoon Theory

However I am not doing any of these. Instead I am feeling really bad because I can be so unreliable. My memory is like a sieve at times, which is why I keep a diary AND a calender AND a computer based planner. But I missed something off all three somehow and ended up missing something important to my friend tonight. Worst of all it was a gathering and I think I kept everyone waiting for me to turn up, which I didn't since I had forgotten. AND because I am feeling really unwell today I wasn't able to rush down when I received a lovely phone call reminding me the party was meant to have started half an hour ago. So people waited for me and I didn't have the courtesy to turn up

I really suck.

I could just accept the fact I simply forgot, and forgive myself. Except I can't, I feel really bad and worried. And sick. Not such a great combination.

So I just am not in the space to write anything clever, funny or thought provoking. I'm just wallowing and hoping I feel a little less terrible in the morning.

xoxo

Adventure DailyPost #6

2011-01-20T19:19:00.002+13:00

So today against my better judgement I decided to take the twins on a train ride, then a walk up to Daddy's work in the city. I'm not feeling the best at all -with an extremely sore chest when I breath and a distinct rattle in my chest it would probably have been better for me to stay home. However, then I would have missed out on the look on the boy's faces when we got on the train. I would have missed an experience, one I thought not that long ago I wouldn't be able to tackle on my own.

It was very worth it, despite the fact I now feel sore everywhere and the rattle is even loud enough for Craig to hear it now. I am definitely going to rest tomorrow. But for today, I gave my boys an adventure. For today, we were explorers :)

xoxo

Why? DailyPost#5

2011-01-19T20:48:00.002+13:00

So it's mid summer here at the moment and the last two days have been, to me, incredibly hot. I used to love days like this, especially today where the sun was out and the sky was a clear and beautiful blue. That was until I made acquaintance with heart failure and her buddy Fluid retention. Whilst I am doing so much better in regards to my heart health, I still struggle with fluid retention particularly when the weather heats up and it starts to get humid.

Added to this is my sensitivity to sun which developed shortly after the boys were born. I can be in the sun for as little as a couple of minutes and get burnt, I can feel the sun burning me the minute it touches my skin. I end up getting heat stroke very easily, and time spent in the sun can lead to a flare up of aches and pain everywhere. So i now slather myself in sunscreen, have a giant floppy hat and consign myself to the shade.

Which is fine. I still get to enjoy time outside with the boys, despite my quickly lobstering skin, giant hat and swollen ankles. Though this summer I have been really enjoying being inside on the rainy but warm days playing board games and (Bad Mummy I am) the occasional PlayStation game (Our fav at the moment is Scooby Doo!).

Which leads me to my question of today. WHY? When the recorded high yesterday was 30 degrees Celsius and the high today was somewhere near that (Haven;t yet checked) did our neighbour decide to light their fire? And why or rather WHAT in the world would cause horrible black smoke and a sickly horrible smell? Benjamin and I have had a annoying chesty cough ever since we inhaled the lovely smoke our neighbour shared. I ended up closing all the windows on what was one of the hottest days we have had.

Which makes me curious. Am I going to be the scary/crazy lady who wears giant hats, sneaks around in the shade and locks herself inside the house on the nicest days of the year?

Next summer should be interesting.

xoxo

Not a whole lot to say today... DailyPost#4

2011-01-18T19:18:00.002+13:00

This is what is going to happen when you post everyday I guess.

And it's only day four!!

It's been a busy, wonderful day with a very good friend of mine, and two of the twins bestest buddies. So I'm tired, in a good it's been a busy lovely day rather than a I'm exhausted for no good reason thanks chronic illness way.

It does mean though that I am not finding much inspiration in today's writing tip over at The Daily Post . The tip is a good one, I just can't think clearly enough to write a post on it. So instead I will count a couple of my blessings for today.

Number One: Aviva. Your comments have made my day and I feel such a connection with you though we only know each other in blog world. I think of you often and pray for you to feel better, receive a treatable diagnosis, and one day even be cured! I receive so much inspiration from your posts. xoxo

Number Two: New friends. One of my big blessings is connecting with a new a wonderful friend. It has been so so great to click so completely with someone, and so much fun finding out all the new things about my new good friend :)

Number Three: My tomato plant is growing! This may seem a small thing, but with my history of killing any plant I've ever looked at this is quite a miracle.

Soooo this is where I will leave things for today. I need a sleep!!

xoxo

Everything Happens For a Reason DailyPost#3

2011-01-17T20:18:00.004+13:00

I am a firm believer that all things happen for a reason. I also believe that in the moment it is not always necessary or meant to be that we discover the reason.

For me, I believe that my husband and I were blessed with twins to help ease the pain of discovering we could never have another biological child due to my heart condition. I believe the struggles we have encountered as a couple have made us stronger. We have faith in our love for each other, but also realise from experience that a good marriage takes work. Our struggles, particularly through my initial diagnosis with Heart failure, has shown us that we can overcome even the scariest and life altering things life has to throw at us.

There are many other things I am yet to discover. The good and the bad that has happened which is all part of a bigger plan. That isn't to say that I think I have no control over my life. I feel I need to take responsibility for my actions and do all that I can to lead a life I can be proud of. My belief in something bigger than myself though does get me through some of the harder times in my life.

Here I think one of my favourite quotes from a classic movie (Kung Fu Panda LOL) fits in nicely:

"One often meets his destiny on the road he takes to avoid it"
xoxoxo

Wacky Advice? DailyPost#2

2011-01-16T20:10:00.002+13:00

Todays writing prompt:
Describe the wackiest but most useful advice you’ve ever received.

I have thought on this one for most of the day, trying to think of some piece of funny yet helpful advice. I have been in many situations to have received some real gems. Unfortunately much of the funny advice has thus far failed to be all that useful.

So I changed my approach to this. Instead of focusing on Wacky funny I began to think about times I have received advice that seemed all good in theory but I wasn't sure how I could put it into practice. The times I have been given a small nugget of advice, and over time have realised I am actually holding onto a piece of gold. My favourite, and one which comes to me often is this;

You can not change others, you can only change the way you see/approach things

Now this may not seem all that wacky. However in the position I was in when I first heard this I was confronted with a new and unfamiliar way to deal with my problems. Many times if someone was upset with me, didn't like me, did something to hurt me I took it as a sign that I wasn't good or kind enough. I worried insesintly and would do everything I could to try to "make" someone like me. When I received the above advice I realised it wasn't saying I had to change who I was, I couldn't change the other people involved and make them like me, I have no power over whether someone will enjoy my company or not.

Upon this realisation, I also received the following advice from a close friend:

I have an Apple and an Orange. If you choose the Apple, you are not saying that Oranges have no value. The Orange is still a tasty and nutritious fruit, it's just at this time in your life you prefer Apples

I love this idea. It is so simplistic without all the complications of human relationships, but still makes a lot of sense when applied to the situations I struggle with.

This was a tricky piece for me to write. I'm kinda glad it's over for the day and it's only day 2!!

xoxo

If you had a time machine… DailyPost#1

2011-01-15T14:56:00.002+13:00

If you had a time machine that only let you spend one hour in a different time, what date would you go to?

Initially when I read this I automatically went back to the events of my past, imagining where I would go to spend this precious hour. It wasn't until I read a fellow bloggers comment over at The Daily Post that I realised one could go into the future and discover things which would be of later financial value.

I still would chose to spend my one hour in the past. Not to change anything (well not majorly) but to re-experience one of the most precious and amazing times of my life.

I would go back to July 4th 2003, early evening of my wedding day. I would choose to go back to the time just after we had our meal and enjoy my first dance with my new husband all over again. I would enjoy being in a fit and relatively healthy body once again, as well the excitement that came with the newness of our marriage.

The one thing I would change is to make sure I had a Daddy-daughter dance. This is the one and only thing about my wedding that I wish had happened. The evening went so fast it wasn't until the next night that I realised I had danced with Craig but not my Dad. That would have just been the icing on the cake.

Yes, to spend one more hour in Fiji on the night of my wedding would be bliss. I will forever have those memories, and thanks to this challenge have in some ways relived this moment!

I’m Posting every day in 2011!

2011-01-15T08:47:00.002+13:00

Thanks to the wonderful Nikki I have discovered The DailyPost, a blog which gives ideas and challenges on blogging each day or week for an entire year. And since I like to throw myself in the deep end I'm going for the daily challenge!

This is most certainly going to be a challenge for me. I am hoping though that it will also inspire me, will be fun and enjoyable along the way.

Any of my wonderful friends/blog followers who are still here reading my blog after my long absence, Thank you for sticking with me and Please help me stay motivated with this. Comments & Likes will be HUGELY appreciated and very motivating :)

xoxo

Kicken some chronic illness ass

2011-01-08T16:22:00.002+13:00

Haha, I said Ass on the Internet! What kind of google searches will I come up in now?

I've been feeling reflective today and thinking back to December 6th 2006, the day I was officially diagnosed with Congestive Heart Failure and faced an uncertain future. I have been thinking about how I view the anniversary of my diagnosis each year, and how this has evolved. I have always felt a sense of achievement as each year has ticked by, a a feeling of having won one more year of my life back from a heart condition I shouldn't have had to worry about for many more years.

In the earlier years, as the first year of living with my diagnosis went by quickly followed by the second there was also a sense of loss, guilt and sadness attached to each anniversary. I looked back on the things my illness had taken from me - a chance to have more children, the experience of having energy to properly take care of my twins on my own, actually energy to do anything.

Something has changed. I'm not even sure when it began, but certainly this year as my fourth year of living with a heart condition I was seeing things very differently. A sense of victory and smugness as I have survived. I am a survivor, not a victim. I have found things I can make choices about rather than focusing on the things I have no control over. I have a little evil chuckle to myself as I think of how this year I lived well despite the annoying presence of Dilated Cardiomyopathy and the increasing presence of an autoimmune condition.

I get tired easily, I get ill easily but I also live well and I love every small achievement. Even if I get to the point that I am completely 100% physically well I would not want to put behind me all that has happened. That would be ignoring a huge influence in what has made me into who I am today. I'm getting to quite like that person.

I also consider the odd day of feeling down, a few days of being frustrated by my body, some times of grieving for what may have been COMPLETELY normal. I'm sure I will still have those times. I hope I still have those times, they make me compassionate and understanding. Over all though my focus is truly changing. I feel for once I really am not defined by chronic illness. Just one example, I no longer feel the need to say I am a Stay At Home Mum due to illness, rather I say it is by choice. With factors which influence that choice of course but MY choice all the same.

How lucky I think I am to have experienced such a life changing illness. How lucky am I to be surrounded by loving people? To have seen first hand the kindness of human nature.

Lucky. And a hard working fighter. And though I know there will be days where I feel I am losing the fight against Chronic illness, I know I am winning the war :) I am living a blessed life with Chronic illness.

Thoughtful

2011-01-07T21:09:00.002+13:00

I have had a story buzzing through my mind for a good number of years (10!) now. I have always meant to get it all down o paper, not for the purposes of necessarily having it published or widely read but just to get it out of my head. To put the characters to rest on the page so they stop popping up in my mind all the time.

I was part way through the first half of a very clunky first draft when I met my darling husband. Then I lost my desire to write as I was so busy enjoying falling in love and the consequent beginning of a family. All of you who have followed me here know what happened after my pregnancy, and with little twins relying on me and a struggle to regain my health any thoughts of writing went by the wayside.

Until the end of last year (Can you believe 2010 is now last year!?!). I have been seeing a counsellor to help me unravel my feeling around being chronically ill, and I bought up how much I enjoyed writing and yet I never did it anymore. That story was still there, waiting to be written. It has evolved over time and my first attempt and restarting it hasn't gone well. I did no planning and jumped right in, quickly losing interest as it just didn't feel right.

I also tried writing about other things. Short stories, stories based on my illness, anything but none of those eventuated as my old characters kept sneaking forward.

So now I feel like I need to have a proper go at this. Once an for all get this idea out on paper and see where it takes me.

My goal for 2011 is not to complete a novel. It's not even to write a certain number of pages. Simply I would like to get the workings of this idea out on paper. A plan for where I would go with this story, what the characters would be like. To see if it would work before I pour however many hours into writing it.

Wish me luck! These characters have been haunting me for 10 years already so we'll see how hard it is to shake them!

xoxo

Busy

2011-01-04T19:38:00.002+13:00

These holidays are speeding by in a happy blur of busy-ness. I have had the good health to enjoy a couple of outings with my three boys, and the good sense (Finally!!) to rest when I need to.

We have managed a walk (albiet the shortest one) at Battle hill, a trip to the Horse races which my sweet Benjamin has been waiting a long while for, trips to the library, trips to the pool and lots of time with family and friends, especially one of my nephews and one of my nieces who make our family outings feel complete.

In amongst all that I have had some really tired days. I had one day where I couldn't make it out of bed all morning, I was achy and sore and just tired. I felt a little bit of anxiety creep in, which always happens when I am that tired and have to stay in bed, and I managed to make it go away! It was such a relief and I am hoping that 2011 gives me even more insight into learning to live positively with my illnesses.

One of my dearest friends Anushka is currently visiting the country she was born, and I am missing her very much. Any prayers, good thoughts, positive vibes whatever you like to do, if they could be sent her way so she enjoys safe travels.

xoxo

Happy 2011 Everyone!! :)

2011-01-01T21:39:00.002+13:00

Well a lot has gone unrecorded during 2010 but that doesn't mean nothing was happening. My beautiful little babies decided to go and turn five on me, meaning the beginning of their school journey and the first time I would be on my own five days a week.

My health continued to be much of a puzzle, with my Decemeber trips to the specialists bringing some light and good news. My heart is functioning close to normal now and I am now in the maintanence stage, keeping this heart which has been through so much healthy. A second visit to the rheumatologist has bought a tentative diagnosis of unspecified Autoimmine disease. Unspecified due to the fact my blood tests have come back non conclusive but I display all the signs and symptoms of a autoimmune condition so have started on a medication (Plaquenil) which will build up slowly in my system over the next few months and hopefully will bring some relief.

2011 for me is going to be a year of recovery and focusing on myself. I am going to rediscover all those things I enjoy, continue to learn how to live with chronic illness and try to feel less frustrated with my body.

So if I had a new years resolution it would be this. To record more of what is happening during 2011 just to see how far I have come and to enjoy focusing on this journey called life.

xoxo <3

Did you miss me?

2010-06-11T11:26:00.002+12:00

I know I have missed me. The logical, think things through and upbeat me. I have missed the me that didn't fool myself. The me that went ahead with all medical advice because while the side effects of medications can be awful, the alternative (Being dead) isn't fun either.

It's been an emotional few weeks for me. I could go back to January, around the time I last posted, and update everything that has happened. Or I could just start afresh. Pour my soul out and start afresh. Yes, that is what I will do.

Time for me has very little concept. There is right now, what is on the calender for this weekend and when I am unwell I tend to forget altogether how much time has past. An unwell week for me feels more like a month. But is May (Which feels like a year ago!) I had a check up with my Cardiologist. Here's what he said:

"Well, I'm very pleased with how things are looking. Your heart function and size has improved even more, and I think we can trail weaning you from one of the medications. Everything else should stay the same and we will re asses in 6 months. If we hold off seeing the rheumotolgist for now and revisit that idea if you start to feel unwell again."

What I heard:
"You're cured! It doesn't matter so much if you take your meds now! Just take them whenever you like! Not rhemotologist, you are fine! YAY!"

So just a slightly different interpretation. Just a little. But it took for me to get really unwell again to look back at that appointment and focus on what had actually been said and what I had badly wanted to hear.

I took myself off the medication my Cardiologist recommended. I took myself off the diuretic too, because it's a PITA to take. I decided I would take the others when I remembered. There wasn't any need to be vigilant anymore. And for the first week I felt OK. I got a cold, which seemed to make it difficult to breath but that was normal with a cold really. Right? My clothes started getting tighter even though I was barely eating, but again my body sucks and likes to gain weight so...

Then I thought maybe I should take just half the dose of my prescribed diuretic just in case I had a little fluid. Enter weekend from hell. I was needing to use the bathroom every five minutes. I couldn't focus on anything, I just had a constant feeling of a full bladder. The feeling like you are just about to burst? ALL THE TIME. I was even up and down all night. I thought to myself, this diuretic is bad for me I will go to my GP and get myself permanently off it.

Even though my Logical side was screaming "YOU idiot, your so overloaded with fluid now"

My emotional optimistic side said "Oh, it wouldn't hurt to take a day off the diuretics, this is a nightmare!"

Well, it turns out I'm not a doctor. I'm certainly no cardiologist and in fact I am not cured. My heart is working well because it is supported by all these medications. Take them away or not take them properly (Like I have over the last month) and all hell breaks lose.

By the time I saw the Doctor it was estimated I had 6kg worth of excess fluid in my body. That was after taking the diuretic for two days prior. My heart rate was high and irregular and the sickness I was blaming on the diuretic was actually my heart struggling to work with the sudden loss of it's 'life support' for want of a better word.

So I had a heart to heart :) with my Doctor, and I finally let myself feel the emotions I had been trying to squish and ignore. I'm 27 and won't have anymore children - even if my heart could cope I couldn't. I will be on some level of medication for the rest of my life. My heart is always going to be sensitive to viruses (I always get arrhythmia's every time I am sick) and with a low immune system, I do need to be careful and look after myself.

I was striving to be well, normal, like any other person in their late twenties. And all I did was make myself sicker. Today is the first day in a week I am not rushing to the bathroom every 5-10 minutes (Now it's down to 30-60 minutes!). I am feeling down and anxious for reasons I can not completely ascertain at this point but am sure being kind to myself will help. A flare up of illness tends to cause a flare up of anxiety.

So just when I thought I had this whole chronic illness thing down I realise I actually have a whole lot more to learn. Like that chronic means for the foreseeable future, not just until you get sick of being sick.

Well I never!....

2010-02-11T19:00:00.002+13:00

I've been a little MIA from my blog.

But for very good reason.

When I started blogging, originally on a different site maybe about 2 years ago I never thought I would be able to one day write a post like this. That I would one day find a way to balance my life, be well enough and look after myself properly enough to be where I am.

I am living a very full and busy life right now that contains chronic illness but is not controlled by chronic illness. My day no longer revolves around my meds, rest times, trying to find someone to help with the twins. Of course I also am not in the middle of a flare-up but I hope that when that does happen (I'm picking this winter, when my low immunity becomes a real pain) I will be in such a routine of balancing my life it won't hit so hard.

I am now working in what would be my dream job. It fits in perfectly with being a Mum, and being a at times unwell Mum at that. I work while my boys are at kindy with one of the nicest people I have met, with gorgeous baby clothing! I am really enjoying it.

I am really exhausted by the afternoons, and our house is looking decidedly untidy at the moment, but i figure with time these things will ease or become more manageable. We've come through so much, my little family.

I'm so proud of us.

The many days of 'summer'

2010-01-22T21:19:00.002+13:00

We have had three glorious days of summer. Now it's back to raining. But we packed a lot into those days, even if we have no other 'summery' days again we have done everything we hoped to.

With the pox all gone and the boys back to feeling well we went out exploring. We have seen the Karori Wildlife park (Best for kids older than four I think, but at least now I do), been to the movies, had a picnic in the park, gone for walks, played at the park. Tomorrow we will go to the library and that's it. Then I am planning a good rest to try and get rid of the bouts of SVT triggered by the busy week.

This weekend is Wellington Anniversary so we have Craig home for three days. And then I start work! Yup, quite surprising. I have never talked about job searching, job hunting, job anything on here before. That's simply because before Monday I hadn't even thought about it. My focus has been on Mothering and getting better. And while my focus will still be on these two most important things, I'm ready to try expanding things. It's a part time job during kindy hours and I'm really looking forward to it.

So just a quick update, I'm off to bed to listen to the rain on the roof. Wit my electric blanket and fleecy pajamas on. Ahh the many days of a Kiwi 'Summer'

Strange realisations

2009-12-19T08:00:00.002+13:00

It's been a peaceful time around here lately. I wouldn't dare say quiet, besides how can any last week of the kindy term be quiet? But things have been pretty smooth sailing. Sure there's the lack of money that comes at this time of year, the hurry to finish off shopping, the regular cardiologist appointment (Have had one every December for the last three years without fail).

And still there is the sense of calm. Of peace. Our little family has been through so much that the regular stressful times don't really seem all that bad to us. We're lucky to just focus on the blessings, the beautiful feeling of community and love that this season of the year is about.

I guess it helps that we've made our major decision for next year already - the boys schooling. An interesting thing though, that during this time I have been feeling quietly happy, reflective and joyful I have also been a lot quieter than usual. Strange.

And then my second realisation. I have been blessed with a gorgeous little baby nephew this year, an absolute sweetheart of a child whom I adore. However I have in no way felt clucky, or wondered if in some time in our future it might be possible to have another child (Cue cardiologist going very pale at the thought). No, this morning I discovered that what it takes for me to get clucky is Multiple babies. I've been browsing some of the Multiple Mum's websites and show me a picture of twins or more and gosh how I yearn for more! Not one more though. Only 2+ will do!!!

Perhaps the reason I can safely indulge this feeling is because there is absolutely no way we will have anymore children. :)

The cardiologist appointment went well. My heart is back in the mild dysfunction category, I seem to greatly confuse my wonderful Cardiologist. All winter I've been unwell and my heart function was dropping. Come summer and I'm back to improving. It makes him nervous.

Of course then I asked about decreasing my meds. I'm so mean because there is no way I am in a position to decrease at the moment, I just ask everytime my function looks better as it makes my cardiologist uncomfortable that I'm getting ahead of myself. Basically, it's my own personal in-joke. Everytime I get the same answer - We won't be doing anything with your meds until you are stable over a greater amount of time. Then we may decrease a little. Or not, it all depends.

I already knew that ;)

In which I kidnap a small child....

2009-12-16T21:43:00.003+13:00

First, the background to the events which took place today;

I have been feeling incredibly lethargic again. This has been going on for a good few weeks now - definitely more than a month. I find it has made me forgetful (Missed a play date for the boys - like completely until three days later), and slow-on-my-feet. I can't make quick decisions anymore. Or the quick decisions I do make may leave something to be desired. I could blame the beta blockers, I could blame the mystery illness, but in reality I have no idea what it is turning my brain to mush at the moment.

In addition today I was on a mission to pick up three preschoolers from kindy. Let me set the scene:
Three 4 year olds dump their bags by my feet and run for the gate. I manage to carry bags and ask said children to hold hands outside the gate. Feel quite smug as the listen and walk confidently out the gate. Feel quite panicked as they head for the road. Check behind me, no one coming out the gate. Call out to children to stop (Hah!) and close gate behind me. Walk out towards the road (Slowly, remember carrying three bags) and feel something tug on my dress. Probably one of the bags is caught I think. Children run down street towards where the car is parked. Slight panic as I know I can't catch them.

Feel tug again. Turn around. Am stealing a small 2 year old that has become attached to my dress. Children by car looking to be deciding whether to head onto the road to get into the car from that side. Children not listening to me calling out to them. Make snap decision.

Manage to pick up small child and all three bags, catch 4 year olds, herd them into car, put 2 year old in front seat so as to buckle in 4 year olds. Tell them to sit in their seats while I take 2 year old back to the kindy.

Too late. Discover from the kindy teacher madly searching the cars that 2 year old has been discovered missing and kindy-wide search has been started. I am the perpetrator.

Now I have had time to think, the scenario would have been better had I;
A. Caught all three 4 year olds, told them to hold hands and walked back to kindy with small child.
B. Not put small child in the car but held him so when his Mother came looking she saw I had him
C. Actually realised a bag can not insistently tug on my dress and looked down when closing the kindy gate

But I went for option D. And that's the story of how I became a kidnapper.

The magic touch

2009-12-06T21:04:00.003+13:00

I am officially now a kitten fosterer. We had our first set of kittens, four gorgeous little eight week olds, over the last two weeks. The had little cat colds and we learnt how to give them their medicines, keep them warm and fed and fluid-filled. We got to cuddle, teach our boys gentle handling of little cat babies. And then they went back, to get ready for their new homes.

And that was the test for me. That first time I would have to surrender the cute little balls of fluff I'd been spending all that time socialising and helping to get better. I was fine about it. It was a joy to know we had helped these kittens, aided the rescue centre and there were now four kittens not only healthy, but friendly and well socialised enough to be perfect for rehoming. A nice accomplishment.

Then three nights ago we dropped these little ones off and picked up our next two rescues. They were the definition of what you'd expect from rescue animals - scared of humans, scared of noise, weren't eating and would hiss and claw at us when we went near them. This would be my biggest challenge, and also biggest learning curb. Now three nights later, these same little feral kittens are sitting up on our bed, playing with us and jumping on our knees. They are eating well, playing and just normal kittens now. It seems I have the magic touch for this! We were warned it would take up to three weeks to get them used to touch, being picked up etc... and while they are still a little timid and nervous of being petted we have come so far in just three days.

I think this whole fostering thing could quite possibly be one of the most important things I have done for myself since I got unwell. It's healing the feeling of being lacking in some nurturing way that occurred when the boys were babies and I was extremely unwell but didn't know why. It's fulfilling the longing of having another baby in the house to rectify where I went wrong last time. It's giving me a reason to rest and jobs to do.

While it has also helped me to realise I will never be crazy cat lady - in the future I'd like to only actually own one cat at a time - I do see this as being a long term thing for as long as I'm needed. I feel useful. So this, along with the extra time I get to spend with my nieces and nephews due to being a stay-at-home Mum has made the fact that a paid job is not a possibility in the near future much easier to accept.

I can't forget what my younger sister said either, to treasure the fact I get to be at home with my children regardless of the circumstance that might have led to it.

Seems I have many good and wonderful people around me ready and willing to lift me up when I'm feeling a little down. Texting me, chatting with me and even making me fruit salad :) and I now feel, in a round about way, I am finally giving a little something back.

Blink and you'll miss it

2009-11-23T21:20:00.003+13:00

So, a very small health update. One might say, blink and you'll miss it.

Over all since my MRI results my outlook on all things health related has improved immensely. Sure I still get frustrated when illness gets in the way of attending events I would LOVE to go to (Grrr, I wanted me some BBQ on Sunday C & A!), still feel a little down after a day spent in bed waiting for an episode of Tachycardia to pass knowing the alternative is the third worst hospital in our small country. Just when I forget the pain that comes with ovarian cysts I get one, but yeah overall things feel pretty good. I'm still looking for whatever autoimmune issue is going on, I'm still a little nervous as to whether my December echo will show continuing decline in heart function, but I also feel pretty tranquil.

In other news, we have become a foster home to some little sick kittens this week. The Cat Protection league is overflowing with homeless kittens at the moment, so we volunteered to take some in. The boys are learning kindness and gentleness towards our little baby cats. I get to feel like I have babies to look after again and Craig.... well Craig is just a very good man who has trouble saying no to me so he's along for the ride as well. We have the kittens for 2-4 weeks when they will be re homed. So not too long. You know - blink and you'd miss it!

Benji and James are both loving morning kindy and looking forward to starting school next year. Yes they already talk about it, we've chosen a school I'm really happy with and they will start preschool visits early next year. The school we have chosen is very different to where I thought the boys would go, but that's a whole 'nother post.

All this school talk just makes me realise how grown up my boys are getting. They play very nicely together on the whole now, use their words to sort things out more than their feet or fists, and overall seem to enjoy each others company more. You remember people telling you when you are holding your newborn(s), slightly sleep deprived but totally in love, to enjoy every minute of it as they grow so quickly. It's true.

Blink and you'd miss it.

Freedom. Relief. Joy.

2009-11-11T21:27:00.003+13:00

Yesterday i had the review with my cardiologist I have been waiting for since my MRI. I got answers. Perhaps not all the answers, but enough to feel as though a weight has left my shoulders. To feel free from worrying about when my heart would give out, to be relieved with a firm diagnosis and prognosis and immense joy in sharing all this with the many good friends and wonderful family. In this long journey I have walked since the twins were born, no matter how I may have felt at the time I was never alone. And when I felt I was too tired to keep in touch with people and would lose all my friends, they would rally around and take away that responsibility. When I felt I didn't know many other Mums in my area due to chronic illness, I suddenly saw the wonderful kind hearted ladies from the twins kindy.

So it is with immense joy I share, I am a Peripartum Cardiomyopathy SURVIVOR.

All the tests indicate that I experienced heart failure due to pregnancy. There is no known reason why this happens to some women, but thoughts are that it is autoimmune and perhaps a genetic susceptibility plays a role. My heart function was down to 35% and failed to improve at first with all the right treatments. It actually seemed to be dropping at one point and discussions with my cardiologist of a future transplant if things continued to get worse and talks of a pacemaker were things never far from my mind.

Neither were the months before I got my diagnosis when I thought I was the worlds worse mother. I was fighting my body to get up and attend to my gorgeous babies, but constantly tired, struggling to breath (I felt like I was drowning), and my heart rate was always beating loudly and much too fast in my ears. I felt selfish that I couldn't push myself more, harder, to be the right kind of Mum. Even after diagnosis I couldn't separate my illness from those feelings of being a bad parent.

But now. I am much kinder to myself. I was not the worlds worse Mother. I was just a sick Mum, doing my best. There is joy in no longer carrying around that guilt.

And one of the greatest things, that this form of cardiomyopathy is the one you are most likely to recover from. The greatest risk of relapse is if I were to get pregnant again, but I've got my two little dudes and I'm immensely happy with that.

I do also have arrhythmia's - SVT and a form of SVT, Inappropriate sinus tachycardia. My heart still races from time to time for no apparent reason so I must be careful with how much activity I do at any one time, what I eat and basically living a healthy life.

There is still the issue of my mystery illness - a likely autoimmune condition causing inflammation somewhere in my body resulting in my aches, fever, fatigue etc but my cardiologist is referring me to the Rheumatologist he works alongside and is sending a letter to my immunologist and amongst other things I will be tested for Addison's. I have a fabulous cardiologist, who will see me again next month to ensure my heart function has stabilised again (Not dropping below the 50% it's at now)

So Fingers crossed gone are the days of exercise restrictions, Mother guilt and fear of future. Here's to all of you, my supporters, my family, my friends. I have made it this far in one piece because of you!

And that old you only have five years to live after diagnosis? Pfft, thanks to modern medicine we'll be having a HUGE party that day! You can hold me to it!

Thank you all my doctor House's!

2009-11-08T21:19:00.002+13:00

I have been so slack, and for that I apologise! I have read all of your comments to me in my last blog post searching for a Dr. House and they have been so helpful and encouraging.

I have never been tested for Addisons so will follow that up. There is a family history of rheumatoid arthritis but I have so far tested negative.

Thank you so much Mama Bonn, and while I really hate that anyone else is going through this it is interesting it's something so many of us PPCM'ers are going through. I found your post so thoughtful and kind, it really made me feel better.

I do have an appointment with my Cardiologist on Tuesday and am interested to see what he has to say about the slight decline in my heart function.

In the mean time my latest "flare-up" seems to be subsiding, although I have started to over do it since I feel so much better so here's hoping I don't trigger another one! I've spent much time with my new little nephew, the twins had a sleep over with a gorgeous friend of theirs from kindy, we went swimming and to the movies yesterday and to birthday parties and visiting great grandparents today. So a whirlwind busy weekend but I have managed a post, albiet a small one!

Paging Dr. House

2009-11-02T09:49:00.002+13:00

Do you enjoy watching House? Do you like medical mysteries and solving puzzles? Ok all my lovely friends and blog followers, I have seen seven different specialists that all agree there is something going on with me, but so far can not figure out what it is, so if you'd like to play at being House have a read over my symptoms, current diagnoses, blood test results and leave me a comment.

And yes I'm serious. Any ideas would be hugely appreciated, because right now with so many doctors at a loose end, I want to be proactive in my care but have also run out of ideas for what to test for/check next.

Current diagnoses: Dilated Cardiomyopathy. Current Heart function at 50%; low normal.
Polycystic Ovarian syndrome along with Insulin resistance
Sinus and supraventricular Tachycardias
Fatty Liver

Current symptoms: These come and go and last up to a few weeks at a time:
Extreme fatigue and lack of energy
Aching limbs to the point it hurts to move
Upset stomachs
Increased resting heart rate to 110, up to 180 with activity

Current tests; ESR; 80 (abnormal inflammatory marker)
CRP; 45 (More sensitive marker for inflammation, also abnormal)
Slightly Abnormal liver function tests

Tested for Celiacs, negative. Tested for hepatitis, negative. Tested for Lupus negative. tested for arthrits, negative.
Cardiac MRI shows a drop in heart function from 58% to 50% but still a lot better than when I was diagnosed with heart function of 35%

Most doctors involved think it is autoimmune, but don't know what.

If I remember other symptoms or tests I'll edit this later, but so far off the top of my head this is it. Thanks everyone!

It's all in the way you say it...

2009-10-21T16:58:00.002+13:00

Taking some time for writing, I am sitting upstairs with an ear out for my two little guys playing with their Dad and making dinner. I'm also wondering if the crazy concoction I thought up to be our dinner will work, and if the preparation should actually be being overseen by me, since it was as I said, my idea.

The boys have picked out a movie they particularly like at the moment, and have watched it at least once a day since their Father bought it home from the video store. With having started morning kindy they have been so tired and not wanting to do anything once they get home except for watch this movie. This hasn't worried me so much until this afternoon, when they began quoting lines from the movie.

And maybe about five minutes ago when James pushed play once again, and one of the characters asks "For a little help". The reply he got from James was "No, Never!"

So I was sitting here pondering the fact that our children have so quickly picked up on intonation. On how often it is they say something now that is so funny at the time, but doesn't translate when I later try to explain it. So often it's the way they say something, which is quite hard to reenact as an adult (or, you know, the adult I pretend to be).

Just before Ben was drawing a picture of Thomas the Tank Engine for James, and they were discussing which part to draw next. Poor James thought Ben was drawing a picture of him wearing a Thomas top, so he kindly suggested adding arms. With a slightly exasperated look Ben explained that Thomas does not have arms, but in fact has wheels and he would draw wheels. James just shrugged, then when he was asked again what should be drawn next he offered the suggestion of legs. Ben looked at him as if he was thinking "Have I not just explained this to you?" Then said in a semi-condescending, yet partially kind tone "Okay, he will have legs. Just this once."

So yes, their speech may not yet be fully developed and may lack a little clarity at times, but they have that whole intonation thing down pat.

Spring school Holidays; A Zoo Visit

2009-10-04T20:57:00.003+13:00

Because it is the school holidays, the weather here has turned from lovely early Spring sunshine and gentle breezes to constant rain. So all plans of outdoor picnics and strolls to the park have been postponed and we have been concentrating on indoor activities. However the sun finally peaked out, for just one day, near the end of last week. So I decided to treat our little treasures with a trip to the zoo. Which for some reason was not a great experience for Ben, as chronicled in the following pictures, which also go to show just how different twins can be...

"Seriously, the zoo? Won't I get dirty?"
"Seriously, the zoo? Yes! Thank you Mama!"

"Yes, Gibbons. Very nice. Lets move on."
"Wow Mama, look!"

"Look, these kangaroos are all well and good
but my trousers are getting mucky"
"Cheese, Mama this is fun!"

"Right time to go home."
"Wait, I don't think we've seen these ones....."

Never fear, I am still here!

2009-09-30T19:40:00.003+13:00

Where have I been you may ask? Well, at my new favourite place. The Gym. Really. Truely I have. No seriously, stop laughing. This exercise allergic, only runs if being chased, scared of getting sweaty or dirty girl has joint a gym. And I LOVE it. It helps a lot that I have found the right one for me, a supportive environment, nice and small, and people with knowledge of heart conditions and programs developed just for me.

And I have all the motivation I would ever need. I have overcome heart failure so there's no WAY I am letting this liver condition get any worse. I have talked about that right? I have so many reasons to get fitter (To get better, strengthen this tired heart, lose weight, gain confidence.....) and I have so much support I feel this is really going to work. And by that I mean it will help me feel semi-normal again.

Because who am I kidding, I was only semi-normal to begin with ;)

Stay tuned, I'll be posting more regularly over October! :)

What does it mean when....?

2009-09-15T11:59:00.002+12:00

You go in for an ultrasound of your liver and the technician ends up spending a large amount of time looking at the kidneys?

This is the annoying thing about having tests done. The waiting for results. The inability of the technician to give you a hint as to what may be going on (You know, the whole blink once if it's fine, twice if it's abnormal, three times if it's really bad. Wait, how many blinks was that? Oh, there's something in your eye. You're not playing my game are you?).

And then there's the surprise questions. Absolute silence while the liver is scanned. OK, no hints there and even though I'm watching the screen I can't be right or perhaps my liver has in fact imploded. Scanning the kidneys now. Wait, questions "Do you drink a lot of water? What medications are you on? Do you get back pain? When do you see your doctor next?"

And that last one was followed by a, "Well, I'd probably go in and chat with your doctor within 48 hours. They'll have results by then."

And knowing my luck, I will in a panic go to an appointment that's been pushed forward at the annoyance of the medical receptionist to find out..... It all looks fine. I'll keep you posted.

The royal twin We

2009-09-09T14:24:00.003+12:00

I'm not sure if this is a common occurance with twins, but our boys seem to use 'we' an awful lot. For example;
"It's we's birthday soon isn't it?"
"We want a drink. Not James, just we."
"We want Ben10. Now we both Ben10 and we watch it" (There's only one of them in the room)
"We is in the playroom. I go get him?"
A little disturbing. But then, yesterday;

The boys came running into the lounge from the playroom, both saying "He broke the train track!". Wow, some individuality. Knowing it was unlikely they would actually admit who it was I asked anyway.

"Who broke the train track?"

To which they both replied - in unison which is what one does if one is a twin - "He did."

They then repeated this over and over, moving closer and closer to each other with each sentence. Once they were standing next to each other they put their arms around each other and declared "We did!" before running back into the playroom. I looked at my husband and said one sentence before returning to my craft making. "Twins are really odd." Ahh but how we, I mean I, love them.

Advice Please :)

2009-09-09T14:04:00.002+12:00

I'm trying to make a decision here. I thought it would be an easy one but now I have found so many options to try over the next three months I'm not sure what to try first.

Okay, so it's rather apparent that I need a major lifestyle change to try and regain some of my health. In particular in the area of food. So what hasn't worked so far; making my portions smaller, drinking more water, drinking less water, watching salt intake, following at home weight watchers. Despite the fact I am not losing weight (And in fact somehow continue to gain) I am still following a smaller portion, 2l fluid, lower salt weight watchers diet. I figure there's no point in adding to the problem by eating badly!

So one thing I know I can work on and change is snacking after dinner. This is my bad time when I'm more likely to eat something sugary or high in salt. But otherwise I'm at a loss. My exercise is restricted due to my health issues at the moment which is always a problem!

Should I go Low GI due to my insulin resistance? Should I go gluten free in case of a possible gluten intolerance? Do I do both at once? What concerns me is making the changes too quickly and then 'burn out' on my new way of eating and make the weight loss even harder as well as making my health worse. It's certainly not going to be a yo-yo diet. At the same time I only have three months to show some results after two years of gradual upward sneakage in weight.

So I'm a little anxious and unsure where to start. Advice anyone?

Three months and Counting

2009-09-08T17:35:00.003+12:00

I had my three monthly visit to my GP and Nurse today. Basically I go a lot more, but every three months is a long scheduled appointment to make sure all the testing and specialist appointments are on track, and a run down of how things are looking as well as me just being able to talk about anything I've been finding hard. Like a counselling session with medical input and blood tests.

So I had my three monthly blood draw to check on my kidneys. Also a mass of other tests, which we already know the likely results of but are keeping an eye on. My inflammatory markers which were still very high at the last blood test, my liver tests which have slowly been raising and are now in the abnormal range. A test to make sure my breathlessness and high heart rate are not due to a worsening of congestive heart failure.

Next week I head off for a scan of my liver, a chest xray and FINALLY on the 12th of October I will be having my Cardiac MRI. This is the test a lot of my specialists are waiting on to see if the inflammation markers are indicating an ongoing inflammatory process in my heart. I'm incredibly nervous about this test, with a mixture of feelings about the results themselves. On the one hand if it comes back all clear that would be wonderful but the search would still have to continue about what is causing all these abnormal blood results. Then if it comes back showing something that would be so scary for the obvious reason.

The other thing to come out of today's doctors visit is a three month limit. I have already booked my next three monthly appointment and it comes with some time limits. There are some health issues that if they haven't stabilised or improved by then further more invasive measures will be looked at. For example one of these are my heart rate, my beta blocker is being increased even further and we had a discussion around pacemakers. Once I'm at the maximum dosage for the beta blocker, which I'm heading towards now, that becomes one less option for controlling my tachycardia. There was one other self-imposed time limit in regards to the struggle with my weight. My insulin resistance is worse making it harder to loose weight, and can lead to other serious health conditions such as diabetes. I have following a careful and well balanced diet and have been exercising as much as I am able and have continued to gain weight these past two years. There is no reason for it hence it being one of the symptoms on my medical mystery list, but at the same time I have put my foot down and if in three months my weight has not stabilised I want to trial some other options.

This is a really hard topic for me as it has been one of my major struggles since getting sick. I've seen so many doctors and none of them can explain why with my diet and exercise levels I have gained weight. I have seen a nutritionist who could make no changes to my eating plan as it was already low in calories and well balanced. But I am at the point that there seems to be no control over it and I want intervention. There are not many options open to me due to my health issues, but it's also not healthy for me to continue to gain weight. It's a catch-22.

So really this next three months are my trial period. Can my heart rate be controlled by meds? Can I finally crack the mystery of the creeping weight gain? Is my liver processing all my meds appropriately or is it under stress as well? Am I in heart failure again?

So many questions, so many challenges and so little time!

30 Things About my Invisible Illness You May Not Know

2009-09-03T19:42:00.002+12:00

1. The illness I live with is: Dilated Cardiomyopathy

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: certainly Heart Failure symptoms right through 2005, but I have had arrythmias since my teens

4. The biggest adjustment I’ve had to make is: Allowing my boys to go to a caregiver three times a week.

5. Most people assume: I don't know what people assume. I know I assumed someone with heart failure was near-death and would be on bed rest in a hospital. It was weird to be walking out of a cardiologists office and going home after such a diagnosis.

6. The hardest part about mornings are: Waking up still feeling tired. Like I've had no sleep.

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: My laptop.

9. The hardest part about nights are: Remembering to take my tablets, and managing to get to sleep at a reasonable time. (Nights are when I worry about everyone).

10. Each day I take about 15 pills & vitamins.

11. Regarding alternative treatments I: Am following my specialists advice at this time.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Both are hard for different reasons.

13. Regarding working and career: Not working outside the home right now but haven't given up hope that I can pursue something in the future.

14. People would be surprised to know: That I never knew what a normal heart rate felt like until the dosage of my beta blocker was correct, and it felt so slow to me I thought I was dying.... don't laugh!

15. The hardest thing to accept about my new reality has been: Struggling with my weight, no matter what I do it just keeps creeping up.

16. Something I never thought I could do with my illness that I did was: Walk almost to the top of a steep hill off a walkway in my suburb

17. The commercials about my illness: I've never seen any.

18. Something I really miss doing since I was diagnosed is: Long walks. I'm building back up to them.

19. It was really hard to have to give up: Exercise when I was first diagnosed and my heart rate was unstable. Now it's just as hard to get back into it.

20. A new hobby I have taken up since my diagnosis is: Cross-stitch

21. If I could have one day of feeling normal again I would: Go for a run, take the boys hiking, clean the entire house in one go, take all my nieces and nephews to a park and play, then take them all to the zoo.

22. My illness has taught me: to slow down and enjoy the small things

23. Want to know a secret? One thing people say that gets under my skin is: When someone calls a cardiac arrest a heart attack. It's two different things!

24. But I love it when people: Give me hugs

25. My favorite motto, scripture, quote that gets me through tough times is: Happiness is not a destination, but a way of travel.

26. When someone is diagnosed I’d like to tell them: Get good support networks around you, find a way to keep in touch with close friends even if it's mass emails and take good care of yourself. Let others help you.

27. Something that has surprised me about living with an illness is: It doesn't go away. Obviously, chronic illness is chronic but seriously. It's there all the time.

28. The nicest thing someone did for me when I wasn’t feeling well was: Oh, I've been incredibly blessed by good friends and family. If you're reading this likely you have done one of these nicest things, THANK YOU.

29. I’m involved with Invisible Illness Week because: It's the first time I've heard of it and think it's a good cause.

30. The fact that you read this list makes me feel: As though you have too much time on your hands... LOL, no it's very nice of you.

Tremendous Twin Tales

2009-08-28T19:13:00.002+12:00

I really enjoy my twin boys. While like any other Mum there are times I feel I am going stir crazy, feel like the noise is getting to me and think I have to say "Don't do that to your brother..." one more time I might just go mad, on the whole I really enjoy my children.

They are constantly teaching me new things, making me laugh and remind me how amazing the world actually is. Last week was the first one in a while where I had the boys every day. What I mean is, their Nanny was unwell and they weren't up to kindy a few days so instead of my usual three half days and two whole days with them we got to spend the whole week together. I really enjoyed it, after my initial nervousness about whether my health was up to such a full-on week.

It was also a wonderful learning opportunity. On the two full days I have with the boys each week I try to cram fun outings, learning lessons, shopping and playing into the day. In a way it helped ease the guilt of having them in care. So knowing we had a full week ahead of us, i made big plans. The first two days we were out all the time. We didn't get home until Craig did and I was feeling exhausted. The second night as the boys were heading to bed they asked what we were doing the next day. I hadn't decided at that point so told them they could choose. Guess what they said?

"Can we stay home with you and rest and have cuddles?"

This is when I realised they didn't care what we did, or if we went out somewhere exciting and got bought new things. They, like me, just enjoyed being home together. I still plan that we will have a few special occasions a month, but so far we are really enjoying our quiet time at home.

Something else I have noticed both my boys do is say "We" when they mean "I". The last time i tried to correct them, the conversation went like this:

James "Can we have a drink please?"
Me; "Sure, what would you both like?"
James; "No, not Ben."
Me; "So you would like a drink please."
James "Yes, We said we have a drink please?"
Me; "Honey, it's I. If just you want something, you can say I."
Ben, from other room; "Yeah James, just you. So say we have a drink, not me."
Sigh. I'm sure it'll catch on eventually.

I've been lucky enough to be dropping my sweet niece and lovely nephew to school a few time recently. I love going into the school and seeing their classrooms, meeting my nieces teacher. it's a great school with a great atmosphere. This morning the boys and I took my niece to her classroom where she proudly showed off her twins. She proudly announced they were "Identical twins!"

"Honey, they are non-identical twins. They look very different." I explained. My niece looked at me like I was losing my mind, then said - "But they have the same hats on, so they are identical."

Beta blocker brain

2009-08-26T19:31:00.002+12:00

It's been a little while. I should have lots to share - cute twin stories, health updates, stories of any kind. Unfortunately, while I know i have been super busy the last couple of weeks I can't clearly remember exactly what it is I've been busy with. Days passed with speed and I would think to myself, hey that's a cute thing Baby A did I want to remember. But I wouldn't write it down. Now all I can remember is wanting to remember something.

Yesterday at Cardiac Rehab I had confirmed all the things I had hear about beta blockers. This is one of the heart meds I'm on, actually the one I have had to increase to almost maximum dosage to actually get my heart rate under control. It works to slow down your heart rate and thus give it time to rest. However as my cardiac nurse put it yesterday "It also slows everything else down".

This means my memory pretty much sucks most of the time. I feel a bit brain fogged, don't have the same mental clarity I once did and basically feel frustrated by both of the above quite frequently.

So really this blog becomes even more important. To remind of the things my boys have gotten up to. So I'm promising myself to write more often.

But right now I'm off to watch My Super Sweet sixteen UK and shake my head at these kids and their parents.

Multiples and More QOTW

2009-08-17T20:14:00.002+12:00

Bucket List;

I find this question a little hard. Basically I have to answer "What things have you always wanted to do in life?". I'm finding it hard because the things I have really wanted I have done. I hadn't really thought of any new long-term things so I guess I need to now!

1.I would love to travel to Egypt, Parts of Europe, and all around the United States.

2.I would love to experience owning a dog. A really small one. Or maybe even just babysitting one.

3. What do you call a marathon you walk in, not a running one? I want to complete a walking marathon.

4. I want to walk some of the beautiful trails in the South Island. I want to do one with my Dad.

5. I would like to complete a novel, whether anyone reads it or not.

I'll stick with five. It's been fun to ponder this :)

An August Birthday

2009-08-13T18:45:00.002+12:00

I am very blessed to have many great and wonderful friends and family around me. Two of my oldest friends have their birthdays in August, plus my younger sister's partner also celebrates a birthday this month. Claire's was at the beginning of August and she ended up bringing us fruit salad to share to celebrate her birthday! It was delicious though :) So I really enjoy the month of August and trying to come up with new ideas of how to show some of the wonderful people in my life just how much they mean to me.

Today is Nuka's birthday. We have been best friends since our third form in college, so fourteen and a half years now. Every milestone in our lives since the day we meet we have shared. We have an amazing ability to talk for hours, to tell each other (almost!) anything. She is one of the twins honourary Aunties (Along with Claire and Michelle) meaning to me that she is such a wonderful, good, fantastic friend she is really part of our family. Really, she's another sister to me.

So for her birthday I thought I'd share some quotes that I feel fit our friendship. Next year I promise to write something myself, but I'm a little short on inspiration tonight due to some pain.

To Nuka, Happy Birthday :)

The best kind of friend is the one you could sit on a porch with, never saying a word, and walk away feeling like that was the best conversation you've had. ~Author Unknown

A true friend is one who thinks you are a good egg even if you are half-cracked. ~Author Unknown

Friends are kisses blown to us by angels. ~Author Unknown

What is a friend? A single soul dwelling in two bodies. ~Aristotle

Are we not like two volumes of one book? ~Marceline Desbordes-Valmore

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away. ~Dinah Craik

It's the friends who follow you up steep hillsides, stay with you even when you tell them wolves are coming, and forgive you for telling them your house is haunted right before falling asleep that count. ~ Carla Watkin

Distracted

2009-08-10T16:56:00.004+12:00

I was just working on a post about my beautiful baby boys when I received a call from a Nurse at my Doctor's office. Recently I haven't been all that comforted by the treatment I have been receiving from them. Especially as I seem to be hitting another patch of ice when it comes to my health issues. I completely forgot what I was going to say, what the whole point of my gorgeous twin post was. And the thing is, they deserve better than that. My boys deserve a beautiful post all about them, with no undertones of medical disturbances in the background.

So I have rethought the matter. I have lovely photos of my two little guys to share. I'm planning to go out and grab some batteries for my camera to get even more tomorrow (Well, in between their morning with their caregiver, Kindy and my Cardiac rehab! Oh and picking Craig up from the main city...). Then on Wednesday I am going to do a very special post all about my boys, what they're up to now they are almost four. Complete with pictures. And not once will illness be mentioned.

But this post, I thought I would share something we did with the boys this weekend. I had a really good day Saturday, managing to get up and play with the twins, go out with them to the park. It was a beautiful fun day. Then on Sunday i felt terrible. I spent most of the day in bed. It was while I was there, listening to my family playing outside in the garden I realised that all the boys knew was that Mummy was sick. Not why, or the reasons why one day I can play and the next we only have little quiet moments together. So I grabbed some paper and crayons and began to draw.

Now I'm not much of a drawer, but I managed to come up with pictures of hearts, two healthy and strong and one with a floppy left side. I drew doctors, a hospital, a picture of us all huggled up together and one of me with a bit of a sad face. I gathered the boys up next to me and told them a story.

I told them about how the heart works, pumping blood around our bodies so we can play. I told them that Mummy's heart was a bit floppy so didn't do such a good job of pumping the blood. That meant (Pointing at the doctor picture) that I visited doctors who gave me medicine to help me feel better. I showed them the medicines and shared with them what each one does. We talked about hospital and how it isn't a scary place but a place filled with Nurses and Doctors working together to make you better. We talked about how mummy gets tired, sometimes slowly and sometimes really suddenly. I let them know that it made me feel sad to have to rest on those days, but it meant I got better quicker so could be playing again soon.

I told them all about the tests I have (important since Ben saw me have one of my ECG's), and how most of them don't hurt. But sometimes the blood tests do a little, but having them cuddle me after made it feel much better. I let them ask questions, talk about how they feel when I'm sick or grumpy because I'm so tired. We let them know they could talk to us any time, or call their Grandparents or Aunties if they wanted someone else to talk to.

Right at the end, when I asked them if there was anything else they wanted to talk about, Benji looked up at me and said "Mummy, do you get scared when you're sick?" I looked at him and contemplated my answer for a few seconds before settling on the truth.

"Sometimes Benny. But I know I have lots of good doctors, friends and family. Most importantly I have you and James and Daddy so that always makes me feel better."

He looked at me, a grin on his face "Really!?" He said in surprise, "Because sometimes I feel a little bit scared as well."

And while I gave them cuddles and we settled in to watch a movie I realised my hesitation about sharing so much with them was wrong. They are getting older now, even if I look at them and still see babies. And now Ben knows he can tell us if he feels scared, and that sometimes even grown-ups feel that way too.

I think it was all about making it age-appropriate and letting them know they both do so much to help me and are wonderful little boys. Hopefully I'm on the right track.

On to the reason I received a call from the doctor's office. Luckily it was from one of the nurses I know quite well. She explained to me that the Immunologist is very interested in my case now and would like certain tests run, the results of which will indicate if I need to go in and meet with him or be passed to someone else. These tests include the cardiac MRI, a range of blood tests and a tuberculosis screening test called a mantoux. I find the fact there are so many people reviewing my medical records at this point in time quite reassuring, hopefully with these Seven! specialists we will finally get everything sorted.

The Beach

2009-08-09T08:22:00.003+12:00

I love the beach. Or I love the idea of the beach, I'm not quite sure which. We currently have planned (Hoping things actually go to plan this time!) a family holiday to one of my favourite beaches sometime over the summer school holidays. This is as well as my girly holiday with Nuka to Napier, so I'm feeling pretty lucky and hoping we can keep our finances in check so we make these trips. So far, not so good. Our car is causing us much trouble. But I am so dedicated to making these holidays I think we should find a way to make it all work.

Anyway, back to the beach. It's still winter here, however slowly and surely the weather is warming up. So much so I managed a trip to a little beach/bay with the twins on Friday. I love this cute little private beach, and the view is just pure New Zealand to me.

And now I have a taste for summer.

Abnormal, it's the new black.

2009-08-08T15:54:00.002+12:00

I've managed to add another abnormal test result to my growing repertoire. At least this one indicates a problem we already know about, but it has been worrying me that this is the first time it has shown up during this kind of testing. As I like to research everything, put pieces of puzzles together to figure something out, feel as though I have read everything I can about a subject I am a little disconcerted by the lack of information out there about my particular medical issues.

Perhaps I really am so abnormal there's been no one else like me.

To be more specific (I get distracted easily don't I?) I went in for a follow up with my cardiologist on Thursday evening. With the severe flu I had and chest infection two weeks ago, I've struggled with quite bad fatigue again plus episodes of tachycardia requiring medical attention. My GP's office were being less than helpful so I rang my cardiologist and self-referred. So after being told by the nurses at my GP's office not to bother the cardiologist (Not to bother him? So letting him know about deterioration in my condition is seen as bothering a doctor? What exactly is their job then?) it turns out he was quite concerned by the issues I have been having lately (Fainting, feeling unwell, tiredness, swelling).

I was sent down for an ECG which came back abnormal. My ECG's in the past have only ever shown sinus tachycardia (Annoying but not dangerous) or PVC's (Again annoying but not dangerous). This time it showed something called LVH or Left Ventricular Hypertrophy. It basically means the voltage from my heart indicates to the ECG probes that my Left ventricle has thickened. This is a marker for Dilated Cardiomyopathy.

Concerning to me is the fact this abnormality is only just showing up. Does it mean my condition is getting worse? Does it mean the possible inflammation in my heart is effecting how well my heart is pumping blood around my body? Is there a lot of damage or scar tissue from the Dilated Cardiomyopathy? At this point no body knows for sure. My cardiologist is calling a colleague to hurry along a cardiac MRI which will give us the answers to all these questions and more.

So yes, to be honest I am worried. This is scary, the uncertainty and the long wait. All I can do is what I'm already doing - Cardiac rehab, adequate rest and a healthy balanced diet.

And hugs. I like hugs.

Weary. Happy.

2009-08-07T19:05:00.003+12:00

Another Friday. Another week coming to a close. Another round of doctor's visits, tests and long drives to get to appointments. Another dose of antibiotics. Another sad look from Baby A as he has to witness Mummy having an ECG, and tries to be the brave one reassuring me I'll be OK. Another frustrating call with my Doctor's office, another abnormal test result. Another moment feeling as though nothing is ever going to be OK.

Another beautiful sunrise. Another gorgeous trip to the chilly sun baked beach. Another opportunity to be brave and positive. Another moment with my boys. Another four year old hug and kiss. Another moment of having a child run towards you yelling out they love you. Another opportunity to teach someone little something new. Another surge of pride as you watch your children play, helping each other, hugging each other. Another hug from a caring, understanding husband.

Another day. Another opportunity to realise how lucky I am to be here.

I'm back. But not really.

2009-08-04T19:11:00.002+12:00

So. Computer viruses. Not great. While I am in fact typing right now on my much love aDell, I'm not all that certain that all is completely well just yet. With my parents flying off to exciting destinations at the end of the week, my Dad most likely won't have too much time to do a computer check-up. Which means it could be another three weeks before I am regularly back.

Oh how I have missed you all, and what dramas we have had. The twins have been given a start date for morning kindy, which means five mornings a week I'll be home alone. I'm not sure I'm quite ready for that yet. Only one more step and then it's school. This time next year they will be a month away from turning five. How did that happen?

I had the flu. Now I'm not supposed to say it was swine flu since it is no longer tested for, and people that have been around me may have panicked. But really. I was so sick, even with tamiflu. I got a chest infection. It came on really quickly and I'm still fatigued after a week. I've had my flu vaccination this year.

I also now have a quicker follow up with my cardio due to some rhythm issues this morning which took me from being not so polite to the receptionist at our local doctors office to our local A&E.

Today is Claire's birthday. Happy birthday Claire!! I'm still thinking about the delicious meal Claire made me for my birthday. Yum :)

Hmm what else. It has been quite some time, too much time in fact and I'm struggling with my beta-blocked brain to remember what else has been happening.

Lets leave it at this. I'll be back.

Virus

2009-07-18T09:24:00.002+12:00

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.

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

2009-07-13T21:04:00.003+12:00

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.

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

2009-07-11T10:14:00.003+12:00

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."

*sigh*

Could we postpone?

2009-07-10T21:42:00.002+12:00

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?

Six Years ago today...

2009-07-04T10:10:00.002+12:00

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

2009-07-04T09:35:00.003+12:00

" 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.

Feeling Much Better (and Photos!)

2009-07-02T09:18:00.003+12:00

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 :)

Health Update

2009-07-01T19:20:00.002+12:00

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.

Mutiples and more Question Of The Week

2009-06-29T18:01:00.002+12:00

OK, so I'm a day late. But better late than never. This weeks question:

Where and when was your best family vacation?

This is a tricky one as I've had so many great family vacations. It's a close call between the trip to Disney land with my parents and three sisters when I was 14, and a recent family summer holiday we went on to Napier over this past christmas. I'm going to go with the Napier trip, simply as I got to enjoy it with my parents and sisters, AND also all our partners and kids so it was very special.

As what was meant to be part of our christmas present (We all somehow still got rather a lot of gifts on the 25th..) my parents paid for us all to go up, accomodation and food as well as all other expenses. We got to take the kids through a maize maze, visit the aquarium, go to splash planet, go to Napier Prison on a tour, go shopping and go to the beautiful ice cream store.

It was a great holiday filled with laughter and fun. In fact I enjoyed it so much it is the destinations for AN and I's girly trip coming up this summer. :)

Foxy

2009-06-28T08:08:00.001+12:00

I just finally caught up and installed Firefox. Now I have a lovely customised pink toolbar, bookmarks etc. So cute.

I'm just checking the blogging add-on to see how it works. Quite a boring entry huh?

Baby Love...

2009-06-27T20:31:00.002+12:00

I have been putting off a post all week. I've logged on almost everyday of said week and just stared at my dashboard, before checking out everyone elses blog updates. I've had such an up and down week it never seemed like to right moment to sit down and pour my heart out. Either I felt too down to make myself even more sad, or was having a great time and wanted to ignore the issue which has been playing on my mind for the last three years and has just decided to make a come back.

When I was diagnosed with Dilated Cardiomyopathy it was made very clear that under no circumstances should we contemplate a pregnancy at that point in time. To the point my Cardiologist made sure my GP went through suitable contraception options mere days after my first visit with him. This was the first time I began to wonder if more children would ever be in our future. Our plan pre-children had always been to have two, but after having the twins we realised we would love to add to our family one more time.

In fact, when I was diagnosed even though I was extremely unwell I had been to so many doctors that didn't believe me that I thought once I had lost some weight I would be all better and we could try again for another baby. We decided this at the end of November. This would be my new years resolution for 2007, something to aim for and look forward too. We were hoping to have a 2008 baby. I was diagnosed in early December 2006 and all those plans fell away.

I was much too sick for this thought to really play on my mind much. As time has worn on I've noticed that it is now when I am most sick the thoughts of having a baby plays on my mind. Bizarre, as I am not afraid to admit I struggle so much with the two beautiful children we already do have on these days. In fact, to have any hope of having the energy to get through the entire week my boys are in care/kindy 18 hours per week. How in the world would I cope with a newborn? Is this just a matter of wanting the one thing I can't have?

Added to this have been the recent opinions of both my cardiologist and the doctor we would most need during a subsequent pregnancy, my obstetrician/fertility specialist. My cardiologist is absolutely against another pregnancy right now. He's not sure what the future holds, but even if I fully recovered and came off all meds he'd be very nervous about another pregnancy. My obstetrician when I saw him said he would be very scared of leaving three children and a husband without their Mother and Wife. It's certainly not something these top specialists would be pleased about.

The fact is, I tried coming off my meds and my heart function declined. I now have fainting spells, I am carrying too much weight which is making it difficult enough for my poor heart let alone adding pregnancy to that stress. I have PCOS which means it's unlikely I could fall pregnant on my own anyway, hence needing support from a wide range of specialists even if the best case scenario - that I was fully recovered and off all meds.

I just wish I could stop yearning for something I can not have. I want to only focus on my recovery/health (and of course my family and friends).

I must add though that in no way am I upset or jealous of other people having babies or adding to their families. I am especially excited when someone I know is having a baby, as I know how wanted and loved they will be and I'm lucky enough to be a part of this new little persons life. The feelings I have are actually very selfish ;) Considering I'm lucky enough to have twins, I really don't know why I'm having such trouble with this.

I am feeling better about it all tonight, thus my being able to talk about it here. Hopefully by next week I'll be back to cringing at the thought of being woken at 2am by crying, followed by being spewed on and probably pooped on.

Multiples and More; Question of the Week

2009-06-21T16:55:00.003+12:00

This weeks question is all about Dads, given it's Father's day in the States today. Since I have already spoken about my Dad here, and to avoid my Mum being becoming jealous again (I did write about my Dad first, but I was waiting for Mother's Days to write about/to my Mum. I'll never live it down!) I'm not going to share this post between two of the most important men in my life. I am going to instead write this post just about one, the Father of my gorgeous twins, my darling husband.

What makes him a great Father?

Taken three years ago, must update our Father-son pictures!

I have always truely believed in the train of thought that the best gift a Father can give his children is to love their Mother. This being the case Craig is gifting those boys one huge magnificent gift. My boys have such an amazing role model in their Dad that I have no doubt he is the one growing them to be little gentlemen.

Often in the weekends it's Daddy time. My boys spend the whole weekend trailing their Dad around, wanting to do whatever it is he is doing, wanting him to play with them and read with them. Calmly and lovingly Craig helps them to join in the household chores, and even when the two begin fighting over who is going to push the washing machine button, or which of them is allowed to feed the cats Craig lets them know they will each get a turn and has an amzing knack of remembering whos turn it is.

Craig is an amazing Father. He isn't afraid to let his boys know he loves them. He comes home after a long day at work and every night bathes them, reads them stories and gets them to bed (More often than not he also makes sure they have nice full tummies too!).

I feel I'm just not doing justice to Craig, and the amazing Dad he is. But this is a start. I love him so much and he makes me so proud.

Busy, busy life

2009-06-21T08:00:00.002+12:00

Things have been pleasently busy around here lately. I have new pics of the boys I took on a very special day for them. I'll upload into another post later today, all things going to plan (does that sound slightly sarcastic? Things very rarely go by my best laid plans do they?).

I've been unwell. I've felt better. I've felt unwell again. Through all this I have been living my life, enjoying my boys, having great times with friends, exploring holiday options for over the summer when I will be off on a girl's holiday with Nuka while my darling husband stays home with our twins. Going out to the movies with Claire and having a wonderful time. I've been resting, Chatting lots at with Craig, crying at the end of Marley and Me, attending four year old birthday parties with the twins, getting terrible headaches I can't shake, ignoring said headaches to watch Ben10 for the millionth time with the twins.

I also have phone calls I haven't replied to yet. And emails. And a bit of washing to be done. So things haven't been quite perfect this week. Luckily I'm not aiming for perfection. Just to be living my life with happiness.

I get by with a little help...

2009-06-13T20:21:00.006+12:00

I was taking my nightly meds and realised just how much my life has come to depend on these little marvels of medicine.

Thes medications that I take were found to be effective for patients in heart failure/ diagnosed with Cardiomyopathy sometime in the early 21st century.

Nine years ago.

Looking back to 1980 there was a high rate of mortality for those found to have the exact condition I do. They were given five years at most to live. Many did not even make it to one year past diagnosis. If you've seen the movie Beaches, this is what one of the main characters died from.

I am currently sitting at two and a half years past diagnosis.

I have little tablets that clear my body of excess fluid to help my heart pump blood more easily. I have little tablets that slow down my heart rate, lower my blood pressure so my heart can rest and hopefully heal. I have meds that keep me safe from blood clots developing. Not to mention the meds helping my insulin resistance and iron deficiency.

Along with all the positives these meds bring, of course there are side effects. Severe tiredness, forgetfulness, a heart rate that now at times goes too low. My kidney and liver function are checked every three months to see how they are dealing with all this toxicity.

I wouldn't trade a thing.

These little marvels of medicine? They saved my life.

Update on blogging scam

2009-06-12T21:32:00.002+12:00

It seems that the perpetrator of one the scams I talked about here was tracked down through her business and facebook accounts. It's all so very sad, but I thought others may like to read about this latest update, and read about the news paper article done on this here.

I'm exhausted tonight. I have no energy to add more on this, and feel I am unlikely to want to discuss it in anymore detail at all. Just keep safe lovely blog readers.

My little heroes

2009-06-11T18:02:00.003+12:00

My twins, my heroes

2009-06-11T15:26:00.003+12:00

I had a rather eventful day yesterday, through which i truely saw how amazing my boys are and how much they have grown up.

I came home around lunch time having treated the twins to a special lunch and feeling in need of a rest. Next thing I knew I had sever pain in my tummy, and as I was waslking down the hallway to the bathroom (I felt very flushed and wanted cold water) I collapsed. The world spun, my vision went and I managed to lie down just before everything went black. I don't think I was out for too long, the boys were next to me asking if I was OK. Next thing they were bringing me blankets, toys to cuddle and the cell phone so I could call someone.

To cut a long story short i was very troublesome and stubborn and it took for Craig to come home for me to go to the doctor. I felt too sick to go. It seems I am allergic to Penicillin, but it was low grade so I kept taking it thinking everyone must feel that bad on antibiotics. Itr was day five that all this happens, so it seems my body had enough. Because of the pain my BP and heart rate should have shot up, but my heart meds prevent this so my body went into shock, my heart rate got too slow and I passed out. I've been on 24 hours bed rest to allow my body to heal, and I'm looking forward to tomorrow and getting up to be with my boys.

So I've slept on and off, had a lovely visit from my Claire with lots of great DVDs (And food, I'm too spoilt with such wonderful friends) and am hoping not to have another fainting episode. Ever.

I am so very proud of my boys though. They did everything right, didn't panic and waited with me until Craig got home. I know I have a few people upset with me for not calling someone closer, but I hate to make a fuss and as I said i was too sick to want to go to the doctor.

I have begun to think though it may be time to teach the twins about calling emergency services. I'm just not sure if at nearly four they will grasp the difference between when to call and when not to? Any ideas?

Bloggers (and readers) beware

2009-06-11T15:11:00.002+12:00

In the last two weeks I have found myself having followed two seperate blogs which in one way or another turned out to be fake. I do not wish to draw anymore attention to these poor ladies than is necessary, those of you whom follow other blogs will likely know who I mean. Having come across these ladies blogs through other blogs I read, I got caught up in their stories of unwell children and eventful pregnancies. As it turns out both these women are very unwell and unstable, one harming her own child for attention and the other never having been pregnant at all.

I find it incredibly sad that so many people got very close emotionally to both these blogs and the children they were about. Many people invested time, money and their services to help out the families in need. There are many people today I think wary of following other's blogs they don't know personally.

I myself do not regret the time I spent reading either of these blogs. In one situation there is a sweet little girl deserving of good thoughts and prayers, regardless of the Mother's actions and misleading blog. In another the young lady is obviousle unstable and still in need of good thoughts and well wishes. I don't think there is anything wrong in sending some good, positive vibes or prayers out there, no matter of the recepient they are aimed at. In one way or another everyone needs them.

But I also think it is a time for bloggers and blog readers to protect themselves. Not to become quite so emotionally involved in another's blog until you can be certain of their motives. With the access to the internet and an abundance of medical info out there, it is all too easy for someone to pose as being sick, having an unwell child or significant other. Whether this be for money or for attention the result is still devestating for those who follow their made up lives when the truth becomes clear. And it always does.

So I would like to encourage those whom blog and read to make sure:
1) If you are posting photos onto the internet please watermark them with your name
2)If you blog please consider disabling the right click function. Just makes things a little harder for the scammers out there.
3)Never give details of where exactly you live, plans for outings until they are over, or information about your child's school or preschool
4)It's OK I think to use first names, but be wary of letting you entire name be known through your blog. It then only becomes a matter of elimination for people to track you down.
5) Be wary of a blog asking for donations until you are entirely sure of the bloggers motives, know them or trust someone who does know them.
6)Be wary if a relatively new blogger begins running competitions to bump up their blog views when they also run adds on their site. This is how one of the scammers made their money.

Overall just take care of yourself. If it turns out someone you have been following is a scammer, delete them from your following list and move on. Don't beat yourself up and don't let it stop you from enjoying other people's blogs. There are so many lovely, genuine bloggers out there.

Ah, I deserved that

2009-06-09T19:06:00.004+12:00

I was flicking through a gossip magazine this evening when I was called away to do another chore. When I came back to get said magazine, I found baby B studying some of the pictures on the page I had left open. "Oh look honey, it's Daddy." I said cheerfully, laughing to myself as I pointed out a picture of Sasha Baron Cohen dressed as his new Bruno character.

"Yeah Mummy!" baby B replied, "And there's you!" It took me a minute to figure out just what exactly the picture was he was pointing too. Then I realised, and gracefully picked the magazine up and closed it.

You see, it was said actors bare buttocks in Eminem's face.

I guess I had that one coming.

52nd post

2009-06-07T20:14:00.004+12:00

I only just realised I'm up to my 52nd post here on my blog. It's only been a little under three months since I started this blog up and made a commitment to update regularly so as to have something to look back on as my boys grow older. I have now decided that I am also going to let this get up to a certain number of posts (Or perhaps a time limit? Like a years worth?) and then print it all out to make a book. Something for myself and my children to look back on. I know I would LOVE to read something like this written by my parents, grandparents and even more distant relatives.

So to keep me on track I am promising you my lovely readers, a prize draw. This is post number 52. When I reach post number 100, leave a comment in my comments section and you will be entered into a draw to receive an as yet to be decided prize.

Now, the catch is that I am not going to tell you it is the 100th post. I will remind you along the way, and may leave a pretty obvious hint in my 100th post.

Excited? I am! This contest is open to all, no matter where in the world you are. I may just wait and see who wins (By randomised number choosing) to decide the gift so I can send something distinctly Kiwi if one of my beautiful friends/blog readers from overseas wins.

Yay! Watch this space and get ready to start commenting!

So, it seems I'm a sock puppet...

2009-06-07T19:58:00.002+12:00

My two boys are growing up so fast. They have learnt so many new things in just the past couple of months, and are coming out with witty, smart new things on a daily basis at the moment. It's been so much fun and really exciting seeing what they will come up with next.

In the evenings we have gotten into the habit of them having two stories before bed. This means they can each pick a book, and we take turns with which book is read first. Well tonight they both agreed they wanted made up stories from Daddy. My darling husband was pretty thrilled, given he has a family story which was told to him by his Grandmother that he has been ~~desperate~~ wanting to share with our children from way back before we even started trying for them. It's a really sweet story about the adoption of a Drake by Craig's Nana and how this Drake (Slappy) became a part of their family. I kept a careful ear on the story, hoping Craig would not share the true ending of the story with the boys.

You see, up until two years ago Craig thought the story ended with everyone living happily ever after. That perhaps Slappy had grown old and retired to another large farm in the area his Grandparents lived in. Then one occasion as he was telling his parents with enthusiasm his wish to share the Slappy story with our boys, his Father mentioned leaving out the part where Slappy was run over by his Mother and died. Craig was, to say the least, ~~completely bereft~~ gutted. Thankfully his story did not end with the true happenings.

Then Ben requested a story about pigs, and I argued it would be fun to hear a story of how Mummy and Daddy met. Luckily my husband managed the story of how we met by making me a Princess, him a crazy strange man that scared people and our old workmates were the three pigs. Ahem. Anyway.

As the boys tiredly but happily went off to bed, their eyes heavy and their cherubic faces lit up with smiles, I couldn't help but wonder what new things tomorrow would bring. Would James, as I try to dress him and accidentally put his arm where his head is meant to go in his top, again call me a sock puppet?

Only time will tell what exciting things we have to look forward to.

But I don't want too!!

2009-06-06T11:30:00.002+12:00

Today I am stomping my feet, throwing a little tanty and declaring that I don't want to be sick anymore!! Well, I would be if I had the energy too. Instead I am in bed yet again with a incredibly sore throat caused by strep, a sore chest due to the beginning of a chest infection and a sore tummy due to penicillian. Return of tachycardia due to the temperature I keep running.

I promise I can see the joy in this. I have a book I have been wanting to read for about two months. I have cross stitch patterns to work on. I can rest and lie queitly taking care of myself so hopefully I well recover a little quicker from this small set back. It's the weekend and my darling husband is home watching the twins so it's possible for me to do this.

At the same time I have days like this. And I allow them, it's natural I think to become frustrated. I just wanted to spend a weekend day with my family. I just wanted to do some pottering in the garden, go to the park, keep up my new exercise plan... I just wanted to do something else.

But I will rest and take care. I will enjoy some reading and craft work. It will still turn out to be a lovely day.

Carla’s easy steps to organising your emails

2009-06-04T18:32:00.003+12:00

This evening, my wonderful readers, I am going to share with you my amazing steps for effectively managing your emails. You will read them. You will be amazed. You will wonder ‘how did I ever effectively reply to my emails before?’

Firstly, have an email account. Receive some emails. Then follow these easy steps.

1. Decide if it is something which needs deleting (the ads for websites you don’t recall joining, and really must remember to ask to be deleted from their customer list so as to avoid future spam mail… opps it’s deleted. What was the website again? Decide to deal with it next time you receive spam. Repeat ad nauseam)
2. Decide if it is a keeper, whether it needs to be replied to or filed away. Keep going back and forth on this point. Create new folders specifically for storing emails you wish to keep under descriptive headings. Change your mind and decide maybe you should reply. Leave email in inbox until a year later. When you delete it.
3. Decide if it is a replier. This is an email you have received from a dear friend or family member which has really cheered you up, made your day, or just has a question which needs replying to. In this case, further steps need to be taken:
A. Feel so happy all day said friend/family member has thought of you and taken the time to write to you. Decide this requires a specially thought out email in reply. Decide to take your time to make this email particularly special.
B. Spend a few days wondering how to make said email especially special
C. Worry about the fact it’s been a few days and you still haven’t replied. Now the reply email must be extra especially special.
D. Realise it’s been at least a week and you haven’t replied to any emails. By now are likely in the middle of some illness/flare of illness, and promise yourself the email you send will be so fantastically wonderful it will make up for further delay due to your illness.
E. Two weeks later reply to the email. Apologise for delay. Email is not special or exciting, but now at least the other person knows you haven’t disappeared off the face of the earth. And you aren’t ignoring them.
F. Receive a reply to your reply. Repeat steps A-F.

Really though, I love getting emails. And blog comments. I’m endevouring to answer my comments too, and just a heads up I am doing this in the comments section. I just now realized how silly this may be, as if you leave a comment do you then go back and read other comments? Trying to come up with a better system than this.

Or in true procrastinator style, I am planning to plan a better system than this.

100 things about me

2009-06-01T21:10:00.004+12:00

1.I’m 26, but often forget how old I am. Especially when asked by specialists.
2.I always wanted twins
3.After trying to conceive for a year we were referred to Fertility Associates
4.After one cycle of fertility treatment I was pregnant
5.It was twins :)
6.I tease Craig a lot
7.but I really love and adore him
8.I have three sisters and I think quite amazingly we all get on well.
9.My older sister is really amazing and brave. I’m always looking up to her
10.She has two children whom I sometimes pretend are mine
11.I used to fight a lot with my sister whom is three years younger than me
12.Now we’re good friends. I've talked about her here
13.I adore my baby sister.
14.My friend I have been lucky to know the longest is Claire.
15.I have been friends with her for 23 years.
16.She’s one of the best people I know.
17.I went to an all girl’s high school
18.I’m really glad I did as I met some of the greatest people there
19.One of them is Nuka
20.She’s my soul sister
21.Another is Michelle
22.I really miss her as she’s in London right now
23.After being unwell I have caught up with many more people from high school.
24.They have all grown to be beautiful young ladies
25.I feel extremely lucky.
26.I really enjoy a cup of tea at the end of the day
27.I like to say things like “This tea and scone are delightful” when around my family
28.They hate it :p
29.I secretly quite like South Park
30.Michelle does too!
31.I don’t thinks she’ll mind me outing her
32.I love going for walks
33.I love dressing my twins up warm and playing outside in the rain
34.They love it too
35. I find it hard deciding where to send my boys for school
36.Or kindy
37.Or High School.
38.I would like to go back to uni someday
39.I’d like to gain a Master’s degree
40.I married Craig in Fiji almost six years ago
41.We had planned a big wedding at home first
42.The thought of it made me miserable
43.Because I’m extremely shy
44.I hate being centre of attention
45.I do now wish we’d had the money to fly my friends over
46.And Craig’s family
47.I’d like to think we’ll renew our vows one day
48.I really love the book The Shack.
49.I believe it is true
50.In so far as it is the authors journey
51.Not that I actually think it happened exactly as it is written
52.I have been banned from exercise for three years
53.Because of a heart condition
54.I’ve finally been cleared to do gentle walking
55.I’m going to my Mum’s every day
56.To walk 15 minutes on her treadmill
57.I am so happy to be at this point.
58.I have struggled with my weight
59.More the feelings associated with it
60.I feel much more peaceful about it now
61.I have learnt a lot from being sick
62.I hate having misunderstandings with people
63.I like to try and fix things
64.I’m accepting I can’t change how other people feel
65.But I’m working on how I see things
66.I love to read
67.and write
68.and do cross-stitch
69.and long-stitch
70.I’m hoping to start playing the piano again
71.I wonder how I will ever express how grateful I am to all my friends and family
72.I’d like to take them all on a holiday
73.to Disney Land
74.My twins often ask if they can have a friend over
75.In this order; Nuka, K and R, Claire, Chelle, K’s Mum, Jordyn, each other.
76.then they ask where their other cousins are
77.and why they aren’t home
78.with us
79.Must stop pretending they are my kids!
80.I am really happy where I am
81.but I still do worry about things
82.so much less than I used to though
83.Once I make my mind up, I’m unlikely to change it
84.As was obvious when I went to a kid’s café the for the first time
and booked it then and there for the twins fourth party
85.In September
86.That was in May.
87.I would like to spend more time with my Grandparents
88.and with my Dad
89.Just chatting
90.I really love my computer
91.I call her Adell
92.Because she’s a Dell
93.I’m going to go see Lovely Bones when it’s released with Nuka
94.For our joint birthday
95.We’re one month and one day apart
96.One day I will be well enough to go on a hike
97.I’ll go with Nuka, and one with my Dad
98.I love receiving comments on my blog. I really appreciate them and read every single one!
99.I try to be a good person. I’m doing the best I can.
100. I'm wondering where I made a mistake as there was 100 when I wrote this in Word and now there's 99....

A big thank you to the lovely author of this blog (and my new blogging buddy) for the great idea for this blog entry!

Music Notes of Life

2009-05-30T22:29:00.003+12:00

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!

2009-05-28T20:35:00.002+12:00

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 :)

.......................................................................................

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?

2009-05-27T22:26:00.002+12:00

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

2009-05-24T15:09:00.002+12:00

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

2009-05-24T08:05:00.004+12:00

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

2009-05-23T12:00:00.002+12:00

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

2009-05-21T18:10:00.002+12:00

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.

2009-05-19T10:57:00.004+12:00

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

2009-05-18T18:55:00.003+12:00

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

2009-05-14T19:33:00.002+12:00

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...

2009-05-13T17:44:00.002+12:00

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

2009-05-12T12:34:00.002+12:00

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...

2009-05-12T08:55:00.002+12:00

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!

2009-05-11T09:14:00.003+12:00

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

2009-05-10T14:19:00.003+12:00

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

2009-05-09T20:52:00.004+12:00

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

2009-05-09T14:50:00.003+12:00

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

2009-05-08T19:56:00.005+12:00

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?

2009-05-07T19:13:00.004+12:00

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

2009-05-07T09:17:00.002+12:00

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."

........................................................................................................

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.

2009-05-06T19:20:00.006+12:00

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

2009-05-05T06:43:00.005+12:00

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!

2009-05-04T09:46:00.003+12:00

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

2009-05-03T17:59:00.004+12:00

"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

2009-05-02T15:21:00.005+12:00

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

2009-05-01T22:02:00.002+12:00

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.

...........................................................................................................................................................

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 ;)

.......................................................................................................................................................................

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 :)

My Secret Almost out!

2009-04-27T19:17:00.003+12:00

Well today was the first day back at kindy after the Autumn break. The boys were pretty tired, it was pouring down with rain and it didn't seem all that appealing to go out anywhere. Then the arguing over toys began, and all of a sudden I found an amazing well of energy. I got both the boys in their coats and to kindy in record time (Well, actually I was late but only by a few minutes).

Luckily for me(but not so much for her) one of my younger sisters, whom from now on i shall refer to as lil' one was on Parent help. The boys couldn't wait for me to leave so they could begin playing with Aunty lil' one and their cousin and friends. It was still raining though, and since I don't particularly want to ruin this event monitor by getting it soaking wet, I decided to venture back to kindy rather early so I could get a park close by.

So after participating in tidy-up time I sat down to watch the kids enjoy mat time. It's my favourite part of kindy, getting to watch all the kids dancing, singing and listening quietly to stories. So cute. Today however, mat time was a little early so at the end of the story the teachers began asking questions related to the story that had been read (Ants stealing sugar, eating way too much of it).

"We don't eat sugar every day do we?" The teacher said. Most of the kids said No. Baby B however, piped up "I do!". Oh no, now all the parents will find out my habit of bribing the boys with sweets when they aren't behaving. Luckily for me, a number of other children chimed in insisting they too ate lots of sugar. Good, I could smile and laugh like it wasn't true. I hadn't been found out.

"What sorts of things do we eat for dinner?" Oh no. Put your hand down Baby A. No one can know that this weekend while Mummy was sick we had not very nutritional meals. Not when other children were talking about vegetables and meat and rice.

Ahhh thank goodness. So many children wanted to talk that the teacher didn't get to either baby A or B. A lucky escape.

Once we got out of the rain and into the car, I noticed Baby A looked a little sad. I enquired as to what was wrong.

"I just wanted to tell *Teachers name* that I have donut and chips for dinner. Or Nutrigrain." He said sadly. Thank goodness.

"That's okay Baby A, next time." I promised, while hoping that if there were a next time it was after one of my 'well' weekends.

So for now my secret is still safe.

Except now it's on my blog

Ahhhh frick.....

Single Sentence Sunday

2009-04-26T16:06:00.000+12:00

“A real friend is one who walks in when the rest of the world walks out.”
Walter Winchell

Dilated Cardiomyopathy

2009-04-25T14:53:00.002+12:00

So I'm sitting on my bed feeling a little unwell (A little, which is actually quite good) looking at a giant blown up T-Rex which belongs to Baby B, and I realize all his teeth are covered in toothpaste (T-Rex's, not Baby B's). Obviously when I gave the twins their toothbrushes this morning and asked them to bursh their teeth, they took it to mean to brush the dinosaurs teeth. Which is fine, oral hygiene is important. Anyway.

I thought it's time I did another profile on another one of my medical conditions. I think sometimes people don't want to ask, or feel uncomfortable asking, what it is I have. So far I have talked about on of my diagnoses in this post. This is number two. There'll be about five or so in all.

OK, so onto Dilated Cardiomyopathy. This is the condition I was diagnosed with 18 months after the twins were born. I'd been feeling extremely unwell since their birth. I was swollen, was short of breath. I couldn't sleep lying flat because it made me feel as though I was drowning. My heart rate was constantly rapid and irregular. I had lost all my pregnancy weight once I got home from hospital, and proceeded to gain it all back over the next few months, even though I was following a healthy diet and exercise.

The doctors told me it was because I had gained back that weight. It was also suggested I was depressed, and had very little idea of what it actually involved to have twins and therefore my expectations of myself were too high leading to anxiety. It didn't matter that I explained my heart rate was always fast, and got so fast when exercising that I felt as though I would pass out.

So I stopped going to my doctor. I sat at home struggling to do basic things for my children, feeling like a failure as a mother, as a person. I started to think I was crazy, and began to push myself to do all the things I wanted to, despite feeling so unwell.

It was ultimately this which led to my diagnosis. I was doing Tae Bo one morning, and my heart rate went into the 190's. It didn't go back down again. By this point I had serious trust issues with my doctor, and so left it until the next day to make an appointment. At this point, my heart rate had come down. I now had a resting heart rate of 160bpm. Normal is 60-80bpm.

To make a long story short, I was sent to a cardiologist whom conducted an echo and it was discovered I had Dilated Cardiomyopathy. I was also in heart failure.

"Dilated cardiomyopathy is a condition in which the heart becomes weakened and
enlarged, and cannot pump blood efficiently. The decreased heart function
can affect the lungs, liver, and other body systems."

So that also explained the abnormal liver function tests I'd been having.

The function of the heart is looked at by estimating the EF, or Ejection Fraction. A normal healthy person has an EF around 55-75%. My Cardiologist felt in someone my age a normal EF would be 65%. My Ejection Fraction was 30%. My heart was enlarged and I had fluid accumulated in my lungs.

I was put on a very powerful combination of drugs and was able to come home.

This post has turned into more of a personal story then the informative encyclopedia post I intended! I might leave it at this for now and tell part two of this story later.