Sunday, March 13, 2011
Loz and I spoke last summer about writing this while we spent a month in Southampton hospital when she had that really bad downward turn. It was our plan to write something together but as is life we put it off so now here I am writing it alone....I’ve only been trying to put words together for the last week, if Lauren hadn’t been the most amazing, caring, loving, gentle, courageous person she was then this would have probably been easier!
Loz was such a special person who touched so many lives. She always thought of others even when she was in agonising pain she always put everyone else first. And intelligent, so intelligent, she knew and understood from such an early age that there was a good chance that her health would deteriorate and her life would be cut short. How does a child deal with knowing that you’ll probably die young?... she had to, every day. Over time as things did get worse, for so long she sheltered her friends from her pain and the heartache she felt at not being able to keep up with them all. I think she wanted to protect them, she didn’t want to burden them....again thinking of others first, not herself. It was only more recently that Lauren became more open with them about how things really were, sharing with them some of the pain, sadness and frustration she was feeling, the realisation that she needed to start preparing them, preparing them for what she knew by then really was coming. Have you ever thought what it’s like to know everyday you are dying and that it’s getting closer? Only those who are in that situation really know, we can try to understand and have empathy and us closest to Lozzy maybe felt we had some understanding of perhaps a fraction of what her body and mind were going through each day but only she knew. She had to deal with those thoughts everyday, she was so brave, so courageous and yet she never became bitter, her love and gentleness always shone through.
At Laurens funeral her dear friend Jordanna said some words from her and other dear friends of Laurens, one of the things she mentioned was that Loz once said that she admired the brilliance of the bumble bee. Not just a bumbling creature, but a remarkable one.
Science shows that those tiny wings should not be able to lift the bees large body into the air. It's a creature that defies everything that makes sense.
Lauren was like the bumble bee, never letting her small wings stop her from flying.
Lauren's Cystic Fibrosis may have prevented her from doing certain things but she never allowed it to alter the way she was, the way she wanted to be.
She never let her kindness, her goodness, her generosity change, even when her illness did. She was an unbelievable daughter, sister, granddaughter, niece, cousin and an unbelievable friend.
Lauren had a tattoo on her foot......Courage, Strength, Hope
Loz always showed great courage no matter how much pain or how low she felt, she had inner strength for herself but even more so for others, and hope, she never gave up hope making plans for her future always encouraging and giving hope to all those around her.
It was one of Laurens fears that she would be forgotten, we all have so many wonderful and varied memories of Lauren. I think that Lauren has had a special place in so many peoples hearts for such a long time and that’s the place she will stay...never forgotten, always with us all, in our hearts and our memories.
What the caterpillar perceives as the end, to the butterfly it is just the beginning.....
Where ever you are Lauren, our lovely Lozzy, everyone that was lucky enough to know you, loved you, you touched all those hearts and left a warm wonderful feeling just being close to you, we have been lucky to have you with us, albeit too brief but now wherever you are you will again be warming those hearts, caring and loving as you always were...they are the lucky ones now to have you with them.
Always with us beautiful Lauren...you will never be forgotten xx
Lauren came home to be cared for by her family in her last few weeks and passed away peacefully on Wednesday 16th February 2011
Thursday, December 30, 2010
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
Wednesday, November 17, 2010
- 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.
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
I can't get that out of my head?
How are you all out there?
Tuesday, September 28, 2010
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
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.