Did you miss me?

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!....

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'

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

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....

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

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

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.