how much a of a self-involved, own-illness obsessed prick must i be to have taken SIX ENTIRE WEEKS (including two lame unanswered texts to him and an unmentioned xmas card) that the reason I was hearing nothing about Jonny, my strong CF boy i was in touch with the most, has now also been taken for the angels?
I couldnt even drag myself onto facebook and just check his profile, just in case, when i worried about getting no texts? fuuuuuuuuuuuuuuuuuuuuuuck.
What a sad sad thing. Breath Easy now Jonny, I loved you man and I wish I'd gotten through to leave my message to you sooner. Sorry honeybun
xxxx
Thursday, December 30, 2010
Wednesday, November 17, 2010
Chemical Explosion Waiting to Happen
I'm not going to bore you with my medical journey of the last 8 weeks or so... mainly because I just can't remember most of it! But I was just going through my meds in my head, and aside from all the usuals; vitamins, stomach/bone/liver stuff etc, the list of antibiotics i'm on seems ridiculous!
My First cupcake exploration with Jordanna, back in September!
the big pinks and whites were vanilla and the lil flat ones in the back there were out of a tom and jerry pack, strawberry sponge, yum... :S
Me at Mumma bear and Paul's wedding :)
lookin skinny fingers, and slightly swollen in the face but the rule was no photos of the knees down as my calves were like bulging jellies and wouldnt go into tights, shoes, etc!
Disney Land Paris
we 3 siblings onnnn Its a Small World i think? fun but a real show made of being lifted into th eboat for me so i felt like the spectacle heh.
and everyone but me stocking up on energy supplies (fries and hotdogs)
- Azithromycin tabs
- Minocycline tabs
- Cipro tabs
- Chloramphenicol tabs (this one even sounds dangerous to me!)
- Temocillin IVs
- Tobramycin IVs
- Meropenem IVs
- Colomycin nebs
- Tobramycin nebs
And I've been wondering why my poor tum is acting up even more than its usual? Im a ticking friggin timebomb. Guessing there are serious casualties on the "friendly gut bacteria" front. Pity my chest is getting worse all the time! I'm on oxygen overnight now (the damn machine makes my room a sauna) but still feel heavy and have splitting headaches, I've been on IVs almost without a break for months... Its so tiring. Im wondering whether there is any point when i still seem to be deteriorating? It's not like im getting any time to do any more than take meds, do treatments, and every now and then manage a sleep or snack. The chloramphenicol is a last resort from what the docs said, anyone else got any experience with it? It makes my mouth/nose/chest gunk taste like a bastard along with a hundred other shitty side effects. Im thouroughly fed up by the way.
:)
ha.
Anyway I managed to get my memory card photos onto my laptop so maybe i'll treat you to a few.
...Or maybe not?!
can anyone help me on why I'm not being allowed to copy and paste text from one internet window to another? ie. from photobucket to blogger? It happened when i tried to post something earlier but i assumed it was a problem with the other site, apparently not. I highlight and copy, but paste is just not an option when i go over to the blogger window! help? :S
ahh. here we go...
My First cupcake exploration with Jordanna, back in September!
the big pinks and whites were vanilla and the lil flat ones in the back there were out of a tom and jerry pack, strawberry sponge, yum... :S
Me at Mumma bear and Paul's wedding :)
lookin skinny fingers, and slightly swollen in the face but the rule was no photos of the knees down as my calves were like bulging jellies and wouldnt go into tights, shoes, etc!
Disney Land Paris
we 3 siblings onnnn Its a Small World i think? fun but a real show made of being lifted into th eboat for me so i felt like the spectacle heh.
and everyone but me stocking up on energy supplies (fries and hotdogs)
Friday, October 29, 2010
Harry Potter 7 trailer...
However stupid and trivial I sound, I can't stop feeling sad that the way things are going at the moment it's a real possibility that I won't be around to see Part 2 of The Deathly Hallows movie when it's released next summer.
I can't get that out of my head?
Fleurghhh.
How are you all out there?
xx
I can't get that out of my head?
Fleurghhh.
How are you all out there?
xx
Tuesday, September 28, 2010
Had a month away...
Been a rather poorly bear.
To be fair I have had a couple of okay days, I managed to bake cupcakes with Jordanna which was mighty fine :)
But mostly I have been rotting in a hospital bed. They just cant fix me.
A lovely bunch called the Bosdet Foundation over here have bought me my very own shiny new laptop! And I am now also equipped with a dongle so internet access in hospital is now possible almost always :D very happy about this.
Mainly I'm feeling rather guilty that I have no idea what's going on with anyone! And here I'm meaning with my "real-life" friends as well as bloggy and CF friends. So I ask you please would you comment and update me? With your own news and anything else I should know? I'm so scared I'm missing something, that someone is really ill or something?
Love you guys. xx
To be fair I have had a couple of okay days, I managed to bake cupcakes with Jordanna which was mighty fine :)
But mostly I have been rotting in a hospital bed. They just cant fix me.
A lovely bunch called the Bosdet Foundation over here have bought me my very own shiny new laptop! And I am now also equipped with a dongle so internet access in hospital is now possible almost always :D very happy about this.
Mainly I'm feeling rather guilty that I have no idea what's going on with anyone! And here I'm meaning with my "real-life" friends as well as bloggy and CF friends. So I ask you please would you comment and update me? With your own news and anything else I should know? I'm so scared I'm missing something, that someone is really ill or something?
Love you guys. xx
Tuesday, August 10, 2010
Heading Home?
I might be heading back to Jersey on Thursday :)
It's only back to the hospital, I'm just not strong enough for home - I'm not strong enough to get further than the loo without a wheelchair! - but at least I might be able to have a few visitors, and they can bring me foooood :D
And that's about all I have to say I'm afraid! Sorry to bore you. I've been having small amounts of feed into my RIG, (not PEG, but basically the same thing I'm told...or have I said this already?) just half a Fortisip twice a day...it's making me feel really full and bloated, but it's a start and hopefully once i'm back to normal and moving around more etc. I will be able to tolerate more and so be able to get more than a measly 300 extra calories. Im definitely still down on my weight though its hard to tell because of all the swelling and fluid retention - I'm showing as around 39kgs but I think im probably still more like 33ish...my watch nearly fell off my wrist today it's so loose. Which is a bit of a worry.
I had another lung function today which came out at 21-22% again, so no real change, which is disappointing but not really surprising. If I don't have a transplant I could possibly carry on at this level for a couple of years, and I'll be trying bloody hard! But equally things could so easily go downhill too quickly to pull back...I'm feeling quite scared for the first time. I've never been scared of dying but since I've always seen 20% lung function as a sort of cut-off point - you either get transplanted or you're on your last legs, or something like that, for some reason - maybe it's just hitting home a bit.
The docs took me off oxygen yesterday afternoon and my Sats stayed around 94% which is about reasonable, so I thought I was finally free! But during the night they dropped to the mid-eighties which is less acceptable, so it was back to sore nose and oxygen tubing, and it looks like overnight oxygen may become a permanent fixture in my life. I'll have an official overnight oxygen test at some point while I'm in Jersey hospital to decide.
So there we go, I've babbled all my health news to you. I'm sure you found it riveting ;)
But this is for me to record stuff as well so *sticks tongue out at you*
Hopefully things will keep improving. Wish me luck - I don't want the routine of mother hen having to shower me to become permanent just yet please.
PS. Thankyou mummy bear, for being here and doing everything you do. I love you.
It's only back to the hospital, I'm just not strong enough for home - I'm not strong enough to get further than the loo without a wheelchair! - but at least I might be able to have a few visitors, and they can bring me foooood :D
And that's about all I have to say I'm afraid! Sorry to bore you. I've been having small amounts of feed into my RIG, (not PEG, but basically the same thing I'm told...or have I said this already?) just half a Fortisip twice a day...it's making me feel really full and bloated, but it's a start and hopefully once i'm back to normal and moving around more etc. I will be able to tolerate more and so be able to get more than a measly 300 extra calories. Im definitely still down on my weight though its hard to tell because of all the swelling and fluid retention - I'm showing as around 39kgs but I think im probably still more like 33ish...my watch nearly fell off my wrist today it's so loose. Which is a bit of a worry.
I had another lung function today which came out at 21-22% again, so no real change, which is disappointing but not really surprising. If I don't have a transplant I could possibly carry on at this level for a couple of years, and I'll be trying bloody hard! But equally things could so easily go downhill too quickly to pull back...I'm feeling quite scared for the first time. I've never been scared of dying but since I've always seen 20% lung function as a sort of cut-off point - you either get transplanted or you're on your last legs, or something like that, for some reason - maybe it's just hitting home a bit.
The docs took me off oxygen yesterday afternoon and my Sats stayed around 94% which is about reasonable, so I thought I was finally free! But during the night they dropped to the mid-eighties which is less acceptable, so it was back to sore nose and oxygen tubing, and it looks like overnight oxygen may become a permanent fixture in my life. I'll have an official overnight oxygen test at some point while I'm in Jersey hospital to decide.
So there we go, I've babbled all my health news to you. I'm sure you found it riveting ;)
But this is for me to record stuff as well so *sticks tongue out at you*
Hopefully things will keep improving. Wish me luck - I don't want the routine of mother hen having to shower me to become permanent just yet please.
PS. Thankyou mummy bear, for being here and doing everything you do. I love you.
Monday, August 9, 2010
Beady giveaway!
There is a giveaway going on at Copper Diem of these beauuutiful beads, I'm very excited about it! :)
Tuesday, August 3, 2010
Topshop Mystery! and PEG tube...
I have a mystery to solve, and wondered if any bloggy friends could help: I have been sent a package. This package is from Topshop, and contained a rather nice red checked shirt, but no note at all to clue me in on who it might be from! And that is the mystery - Who Is The Sender of said checked shirt?? I'd quite like to thank them :)
Also just to keep anyone who might be interested in the know, I've been told this morning that my PEG (feeding tube) will be put in late this afternoon- they just happened to be able to fit me in and my temperatures have been behaving in the last 24 hours so they decided to seize the opportunity and go for it! So wish me luck and hopefully it won't be too painful afterwards etc. :) Ta!
Also just to keep anyone who might be interested in the know, I've been told this morning that my PEG (feeding tube) will be put in late this afternoon- they just happened to be able to fit me in and my temperatures have been behaving in the last 24 hours so they decided to seize the opportunity and go for it! So wish me luck and hopefully it won't be too painful afterwards etc. :) Ta!
Subscribe to:
Posts (Atom)