Win some, lose some

Finally had clinic today with the results of my sleep study.
It showed some mild problems, but the docs dont want to act on it at the minute, due to waiting on more surgery. So yay for no apnea diagnosis.

Chest docs are at a loss to what to do. Any meds they want to try, I already seem to be on, but the crap on my chest is still far to thick. The longer this trach is in, the more issue I am having. Im coughing more, changing tubes more often and most nights waking with a tube full of blood. But, I am still breathing better than I was. Today, I made the walk to the hospital all in one go, no stops and still pretty much able to give my own name in at the desk. This is hugely better than I was. Its been about 2 years since I have been able to do it one go so yay for progress.

Unfortunly, waking up is getting harder again. I am still pushing myself to be up and moving by 10, but it is getting harder. Though, I have mostly cut out the afternoon naps.

Today, I got a load of stuff done for the solicitors which is something I have been putting off for over a month so again yay for progress. And this afternoon, I made an easter egg for my niece. It is a galaxy and oreo easter egg, and hidden inside the egg are chocolate covered oreos. (We have an orea thing going on between ha) It weighs a ton, so I think perhaps I made the shell a bit to thick, but for a first easter egg, i dont think it is bad. Hopefully she will love it.

She is coming down tomorrow, with her new blue cast as she has broken her arm, again! But not going to see her over easter, so getting her this weekend instead.

So yep, yay for progess, aww for annoyance.

Happy Easter

Tonight, is the first night I have gone up the stairs walking and not feeling like I had just run a marathon. Lately I have taken to crawling up the stairs as it just easier. It amazes me how much my breathing effects my muscles. On bad days, every time I lift my leg or arm, it feels like I am lifting weights. Tonight, I dont feel so bad and I begun kidding myself that perhaps things were settling.

Today, I took a big step. I used the wheelchair to help my mum with shopping. It did make things easier, and I didnt feel so exhausted that I could cry at the end of shopping. The sad part? It is probably the last time I will be able to use the wheelchair with my mum for a while.

She goes for her surgery on Wednesday. They have decided on a lumpectomy and removal of a couple of lymph nodes. They will then test the lymph nodes and the surrounding tissue to see if she needs further surgery and from there set a schedule for treatment and such.

I often go through phases with music. I find an artist or song who I love, put them on repeat and listen to them continually till I get bored. I hate doing it as I kill the song, but at the same time I love it. Right now, I am spending a long time just resting and listening to Joshua Radin.



I have also been playing with some watercolor paper to make some images.

I wanted to experiment mainly, but I also wanted to make a special card for my elderly neighbor for easter. Ideally, I need to do a little bit more on it in the morning, as I think it needs a little bit of purple in the top right.

What do you think? I should have spent a bit more time on it, but overall I like it I think.



Happy Easter every one.
And as easter is all about new life and beginnings, I hope that it rings true for you all, especially those on the transplant list :)

Happy Easter

I can say, that I am not religious at all. (I even ate meat on Friday oops)
But I do love times such as easter.
Yus I do love chocolate, what female dosnt, but thats not it.

Its getting together as a family. Everyone dressed tidy and generally sitting down to a nice meal together.
We do, do this at christmas, but christmas everyone is preoccupied with presents and wrapping paper and everything else, plus I always have that whole bad memories thing going on in the back of my mind.
But easter, Easter for me dose not have any real bad memories attached to it and the day isnt taken over with gifts as we only buy really simple things for each other like exchange an egg or a plant or a book.
Todays meal was not as stressful as christmas either. Christmas mum likes to do everything. Roast, mash 4 veg 3 types of meat, pigs in blankets and you literally end up stuffed, but it all takes time to prepare.

Today, we had steak pie, veg and roast potatoes. It is everyones favorite meal and always goes down well. Of course there is always a fight in the kitchen while its being prepared. Mum trying desperately to guard her food and make it all look pretty on the plate. While my sister and my niece try to pinch potatoes and gravy without mum noticing.

So we probably ended up sitting around the big dinner table, all 8 of us for about 3 hours today. I had set dads computer up to run a slide show of all the photos on there as well as randomly playing his music. Different photos mean different things to each person at the table. Like my eldest niece enjoyed the Italian photos from when she holidayed with us, while my younger niece enjoying the canoeing photos from Loire Valley in France, where she was with us just last year. Where we recalled favorite bits like trying to reach the troglodyte caves at the top of the mountain. I nearly passed out getting up there it was so steep and I had to keep stopping, only to get to the top and find the last set of stairs were closed for safety reasons.

It truly was a fascinating place. I would have loved to go into the caves. Maybe sometime in the future. I wouldnt be upto it this year, but its something I might put on my list for next year. I wish I had photos on here to post of the village, but there still on my old laptop. I really need to raid that and get my files off it. It was just weird seeing this big mountain with window holes in it. To think that they had full living villages inside the mountain complete with cattle kept in one section. I mean how on earth do you hollow a suitable space out of mountain without it collapsing all those years ago when there were not many tools. Its awe inspiring.

EDIT: eeeps I just found some of my photos, on the same memory card as my london stuff hehe.

But anyway, back to easter, lol

It was nice to just sit and reminsie. It didnt matter that I wasnt able to be very active or that everyone had to be quiet when I spoke to others could hear me. After that I was pretty exhausted so I sat on my bed for a while, while the kids and played on my wii. I joined in a little. I want those kids to have happy memories of me, of me being fun and someone they can come and talk to about anything. I dont want them to always have memories of visiting ICU or various hospital wards, of me being in and out of surgery or always ill. They will grow up knowing that you can still be just as good a person. I think I'm doing ok at keeping this up. Obviously, its not so easy when I go into hospital for months at a time, but even then, my nephew used to come over to see me on his own and such.

I actually made a video earlier, more for my own records, but just so that I could hear my voice back. I had to put the mic up so my laptop sounds rather noisy but you can hear me, just sounds like I am whispering. I may get the courage to post it at some point.

Anyway, thats enough ramble for tonight.
Time to sleep.
But I shall leave you with a video of my stupid eldest tortoise. He has not yet accepted that he has grown too big to fit under the spaces he used to.