Blessed

I was so very organised today. I packed up Ben’s bag with towels, a change of clothes, hats. I got my camera all ready and decided we would all drive up Raumati Beach. It’s such a beautiful day and I was certain I would get many cute photos of my little cherubs.

Everything was going so very well. My very lovely husband packed a beautiful picnic lunch, and I was in charge of getting the  house closed up and the bags in the car as he wrestled lovingly placed our twins in the car.

After the half hour drive we got there. Very windy it was, but warm enough and the boys proceeded to jump the waves in the giant ‘pool’. Cute! Perfect! I thought, hunting for my camera. I’m sure I put it in here somewhere… Oh right, it’s in the bag. Hence the great search of the car ensued until it became abundantly clear that the bag was indeed not there. And as I looked at all three of my boys splashing in the water I wondered if they would notice my hour long absence to collect the bag?

Yup. Seconds later Ben decided he wanted to get dressed. Ah well, that’s what baby clothes we were about to donate are for.

At least we had the picnic as that was lovely husband’s creation and he had taken charge of it.

So we had a lovely time, and I got home to cut down some branches REST. Ah yes, the rest of the story will be in not me monday I think because I can then at least pretend i didn’t do it

I applied for entrance to a graduate programme at Uni. It’s extramural and It’ll be heaps of fun but that’s all I’m willing to say at this satge, so stay tuned!

Craig got the call tonight about the emergency dispatcher role he applied for. He got right through to the final stage, and did so very well. I’m so proud of him. This time though, it wasn’t meant to be. He has handeled it all so well. The job he is in right now is a good one, and he likes it so there is no hurry for him to leave. It’s just a matter of keeping an eye out for things he’d enjoy.

The house is clean presentable, the twins are asleep in bed. I’ve done just about all i can figure out on making my blog pretty, so if anyone has suggestions they would be much appreciated! I really don’t know how to do much yet.

I have been following MckMama’s blog for some time now.  She is such a wonderful writer as well as having many gorgeous children AND has a particularly miraculous baby, Stellan. I have finally decided to do my own Not Me! Monday. Even though it may be Tuesday here, and I will officially begin next Monday, I can not resist just a couple of comments.

This week James certainly did not wait until we were leaving Grandma’s house to show me he had a handful of ‘chocolate’, had in fact pulled off his nappy and smeared his legs with aforementioned ‘chocolate’. We then certainly did not have to completely undress and shower him while unavoidably being smeared ourselves. Uh-uh. Not me!

The twins certainly did not complain that Mama was starving them due to the fact I gave them Apples and crackers for lunch without cookies. They then definitely did not go to kindy and tell the teacher that they were hungry and had no lunch. No way, that didn’t happen!

And finally, I certainly did not sit the boys down in the playroom with Finding Nemo on TV so I could finish writing this post. No way, Not me!

In other news this week, Craig has completed his final step in applying for the job as a emergency dispatcher. We will find out at the end of this week or early next week, so watch this space to see if we have a really big change approaching!

So I had a rather horrible experience this week, but it’s turned out well as now the Doctors have finally seen and written into my notes that I am still suffering from extreme fluid retention and am indeed not lying to them and have very little appetite so should not be gaining weight (I even admitted to those very salty chips I have a liking to, and out of respect to my wonderful friend Claire am cutting them out!)

Because Claire has much on her plate already. Organising a wedding AND working on a very gruelling PHd. And I know you read this Claire, thank you for keeping track of me and I will look after myself, as long as you do the same!

So Wednesday I felt terrible. I was in a lot of pain and was very tired. Thursday morning I had gained TWO kilos overnight. Went to see Dr. Park and she could see the puffiness in my face, there was evidence of fluid in my ankles and hands but thank goodness not yet in my lungs. So I no longer have to fight for my diuretic as it is rather obvious I still need it. Plus Nushi gave me the name of a very good nutritionist and I shall go and find out what foods I can eat to help avoid fluid retention (Obviously not my favoured salty snacks).

But wow, the pain! I lost three kilos overnight after taking the diuretic. My ankles ached, my legs ached and I felt like I was getting the flu. Yuck, but and incentive too. i don’t want to feel like that again.

So today I go to try on numerous outfits as I’m lucky enough to be going to two of my closest friends weddings in January. I’m so excited, Claire and Michelle you have made my 2009!!

is really quite scary. I thought with time and with growing up I would be less nervous of this whole concept, but today I realised it’s something I may never grow out of.

My brave Benjamin went and sat on Santa’s lap today. He was so pleased with himself and we managed to get a photo which he has been carrying around with him ever since. James however would go no where near Santa. To be honest from my position – as far away from Santa as possible with a decidedly terrified smile on my face – I wasn’t much help. After many consoling words from my Mum he finally made his way up the stairs towards Santa. We were prematurely excited by the fact we might get a pic of James with Santa too but no such luck. He stood as far back as possible, took the book Santa was offering then backed slowly away and had to be lifted down off the stage. That’s right, don’t turn you back on him I thought.

It’s OK, we are already saving up for our boys therapy bills

Anyway this experience put me in mind of the time I went to my Dad to seek reassurance on the whole Santa issue. It was a very scary thought to me that a stranger broke into our house – never mind that he left gifts. Not only that but he *watched me when I was sleeping*. So I checked with my Father to make sure that as we had no chimney Santa had no way to get in.

“I’ll leave the door unlocked for him.” was the reply. But no, then a bad man could get in I reasoned (By bad man I meant Santa). “Don’t worry, I’ll lock the door then and Santa will just come through the key hole.”

What!? either Santa was incredibly small or as I’d seen him at the store was normal sized and could shrink and stretch in a decidedly creepy way.

Either way this whole Santa business is almost as scary as the Easter Bunny or the tooth fairy.

I now have a similar survival rate to any other ‘healthy person’… in case you were worried!

I spent a lot of this weekend researching my condition. Statistics, latest advancements, what some of previous abnormal blood results may indicate. Google was my friend initially, until a vast bulk of my results suggested I had only five years to survive from the time of diagnosis. I don’t like that answer so I switched to journal articles and other sources more reliable.

So with all my gathered information I went in to see my GP to get all the answers to questions I’ve been too scared to ask. It went well and my new approach to doctors and visits to specialists works much better for me than the old ‘whatever you say, I’ll just try not to bother you” approach.

My ESR and CRP level have been abnormal for some time. They are indicators of inflammation somewhere in the body. Part of this inflammation is my heart. It flares up and is under vast amounts of pressure whenever I get a virus and this the reason why I need to be prompt in my visits to the doctor over every sniffle and cough. Secondly there may be some underlying condition going on so I will now be even more regularly used as a pin cushion and will be returning to the rheumatologist. All good.

Ahh yes, then came the restrictions – “You aren’t picking the twins up anymore are you?”… hmmm no I certainly don’t, and absolutely no way did I carry them both at the same time down the stairs yesterday. Really. “No heavy washing baskets, nothing over 10kg.” Righto. That’s not a problem as anyone who’s been near our laundry could tell you, there’s about a weeks worth of washing just sitting there. And unlike when I lived at home IT’S STILL THERE!? “Keeping you salt intake low?” Check, you don’t count really salty chips do you?….

And then my concerns over my weight which we have a plan for now. Basically as I can’t exercise like a ‘healthy’ person can this is why I’m struggling so much to lose my baby weight. Now I’m just letting this one go while I get myself back on track healthwise, and hope this will be a little easier soon.

AND I may not get off my meds now. So it will be even more miraculous if that day comes that I do come off them, so i think that’s rather positive. Plus not that long ago the whole five year survival rate was actually optimistic for those with my condition, and a transplant was a must so I’ll take my forgetful inducing weight gaining meds over that any day

Now I just need to work on those restrictions. Because last I night I didn’t carry the both the boys around with me and then wake up in the middle of the night so breathless I had to go to hospital. Truly…