Saturday, December 19, 2009

Strange realisations

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 ;)

Wednesday, December 16, 2009

In which I kidnap a small child....

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.

Sunday, December 6, 2009

The magic touch

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.

Monday, November 23, 2009

Blink and you'll miss it

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.

Wednesday, November 11, 2009

Freedom. Relief. Joy.

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!

Sunday, November 8, 2009

Thank you all my doctor House's!

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!

Monday, November 2, 2009

Paging Dr. House

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!

Wednesday, October 21, 2009

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

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.

Sunday, October 4, 2009

Spring school Holidays; A Zoo Visit

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....."








Wednesday, September 30, 2009

Never fear, I am still here!

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! :)

Tuesday, September 15, 2009

What does it mean when....?

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.

Wednesday, September 9, 2009

The royal twin We

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 :)

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?

Tuesday, September 8, 2009

Three months and Counting

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!

Thursday, September 3, 2009

30 Things About my Invisible Illness You May Not Know

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.

Friday, August 28, 2009

Tremendous Twin Tales

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."

Wednesday, August 26, 2009

Beta blocker brain

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.

Monday, August 17, 2009

Multiples and More QOTW


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 :)

Thursday, August 13, 2009

An August Birthday

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

Monday, August 10, 2009

Distracted

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.

Sunday, August 9, 2009

The Beach

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.

Saturday, August 8, 2009

Abnormal, it's the new black.

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.

Friday, August 7, 2009

Weary. Happy.

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.

Tuesday, August 4, 2009

I'm back. But not really.

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.

Saturday, July 18, 2009

Virus

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

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

Monday, July 13, 2009

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

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

Saturday, July 11, 2009

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

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

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

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

James: "I'm not."

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

Some time later......

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

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

*sigh*

Friday, July 10, 2009

Could we postpone?

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

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

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

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

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

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

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

Saturday, July 4, 2009

Six Years ago today...

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

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

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

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

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

But let there be spaces in your togetherness,

And let the winds of the heavens dance between you.

Love one another but make not a bond of love:

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

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

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

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

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

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

For only the hand of Life can contain your hearts.

And stand together, yet not too near together:

For the pillars of the temple stand apart,

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

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

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

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

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

True Friends - Here's to you



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



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



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



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

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

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

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

Thursday, July 2, 2009

Feeling Much Better (and Photos!)

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

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

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

*************************************

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








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

Wednesday, July 1, 2009

Health Update

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

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

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

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

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

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

Monday, June 29, 2009

Mutiples and more Question Of The Week

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. :)

Sunday, June 28, 2009

Foxy

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?



Saturday, June 27, 2009

Baby Love...

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.

Sunday, June 21, 2009

Multiples and More; Question of the Week




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

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.

Saturday, June 13, 2009

I get by with a little help...

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.

Friday, June 12, 2009

Update on blogging scam

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.

Thursday, June 11, 2009

My little heroes







My twins, my heroes

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

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.

Tuesday, June 9, 2009

Ah, I deserved that

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.

Sunday, June 7, 2009

52nd post

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...

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.

Saturday, June 6, 2009

But I don't want too!!

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.

Thursday, June 4, 2009

Carla’s easy steps to organising your emails

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.