Wednesday, March 31, 2010


I think I'm actually going out tonight. To an actual party. Last time I went out properly was August 2009, since then I've only managed a sober hour wherever I went.
I'm excited :):)
don't know if I'll be drinking and don't know how long I'll last but it's a start :)
My dress for tonight...
With boots,

With flats,


and with my PARTY shoes ;) ha i love these beasts, they make me a least a little taller than my usual 4 foot 11, though it doesnt really help when all the other girls are wearing heels too! But they are SO comfy, I think its the platform, the only pair of heels I can dance all night in.

I love the material it has little cutouts and flowery bits :)

Will update later on how the night goes!


Sunday, March 28, 2010

Love love love love

For Eva

I already miss your journal entries, beautiful girl.

I've been wondering what to say since I found out you were gone... All I can think of is goodbye. And I suppose that's appropriate!
I really thought you were going to make it. I spent two days with watery eyes after you posted the video telling us: "my life is ending". It was tagged with the words death, life, and love... I remember thinking if I was going to have a tombstone, those would be good words to put on it to sum up Everything!
but the entries after that were so hopeful, and still had so much of you and your spirit coming through, I thought there had been some mistake. And I really can't believe that I won't read another now.

Well done girl, for being such an inspiration to so many people, and for fighting for so long. Well done for your awesome smile! Enjoy the freedom that I hope you have now.
I wish I had had the chance to know you better Eva.

Breathe Easy!

Monday, March 22, 2010

In Pictures

Not much to say to be honest. I feel blue.
But here's some pictures, again, I'm definitely not a photographer! I wish I had managed to sign up for a class before they got full this term :(



I went for a Chinese with my dad this evening at the Mandarin Room - OHMY GOSH it was so good, like uuuber amaze. Beanie cat was very interested in my fortune ;)
I guess it could be taken as either "I will live a 'full' life but die young" or "I will live forever but always be young at heart"... I'd prefer to hope for the second but am inclined to think that it would mostly likely be the first!
Any other suggestions as to what it could mean??

I didn't wear jeans again. yay :)
Wore River Island dress over long sleeved top and ASOS high waisted skirt (to make it all puffy :D love it, heh), black ribbed tights and ASOS army boots, and the cuddle topshop cardi :) oh, stretchy primark belt too.


more tomorrow, i dont feel like writing :/

Friday, March 19, 2010

I didn't wear jeans today :O

I am so proud of myself, it was even raining!
I wore...


Grey Mango tshirt, black bod-con-kinda skirt from Miss Selfridge, Topshop wooly grey tights, ASOS army boots, River island gold clock necklace, Accesorize buddha necklace. And of course topped it off with my H-UGE chunky black cardi from Topshop :) so. warm. ohmygosh.

So there we go.
Not very exciting, but its a start!

Spoke to Southampton today, they hadn't called me to let me know my blood results from last week even though they promised! My Hba1c has gone from 17 (highest they had seen in years apparently ;) haha) to 7.7 since January 18th, which is quite an awesome feat if i do say so myself. Again, if only i actually felt better for it! Apparently my infection markers were up a bit which i believe cos i feel bloody awful by now.
Wondering what would happen if I just refused any more IVs etc, how long would my body last out? ... i am rather curious i have to admit, as stupid as that sounds.
And i can put my pain patches up to 20 from 15, as theyre still not touching the pain and im hobbling around like an old lady pretty much all the time now.

Went in and spoke to someone about my tattoo again today! Somewhere different than the other day. And felt wayy more comfortable in the few minutes i spoke to this guy, so thinking i'll stick with him. Even though he doesnt have any space for over a month, which is a long time for me! And he wont tattoo hands or feet which means i have to think of somewhere besides my foot to put it. Hmm. Any suggestions? I want to save my back for something BIG, and i dont want it on my tummy or hips because im so self concious of my CF bloating pot belly! And i dont know... When i imagine it on my arms/legs it seems weirdly "plonked down" and not fitting in and flowing right... Which is why i had planned on doing it along the edge of my foot. Suggestions on a postcard (comment) please :)

Oh, PS. This is what Im getting! It's probably very cheesy/cliched but it's what i want. so there :P


... but... better. im no artist ;)
and more naturey, probably without the dragonfly, and with the words in a different order i think.

Thursday, March 18, 2010

First Attempt!

I made my first attempt at making a ring from scratch at my jewellery class last night...
I started out with a shiny sheet of flat brass, and after sawing, heating, hammering, shaping, more sawing, soldering, more hammering to create texture, and MUCH filing of edges, i produced This:


Be proud of me.
It's brass so if i wear it for any length of time my finger will likely go green but that practice means that next week i can buy some sterling silver sheet and go again :D excitement.

Also here's my photo for today... my lovely new Drip, Drip, Drop earring from Eclectic Eccentricity, that i managed to lose one of TWICE the first time i wore them! (The first loss ended in a find, the second time time i wasnt so lucky :( boo)
Ive also got in a little gold flower with a pearl in the middle which is one from my mummas youth, and a gem that my brother gave me, the first time he ever bought me a prezzy :)


Mum wants me to get some IVs sorted tomorrow. FANTastic... just as I was beginning to hope i might get to go out a bit in the next week or so, for a couple of parties, finally not miss some! And my chest screws itself over again.
I just don't want to do it any more, I'm fed up of my life being a cycle of having IVs, waiting to get ill enough for IVs, having IVs, waiting to get ill enough for IVs...
This is not a life. I want more than just an existence please!

Tuesday, March 16, 2010


i've decided to start a little project where im going to (try to!) take a photo each day (hence the 365, ie, 365 days a year) to post on here, along with all the other babble i produce. Give this thing a little direction :)
Dont expect photographic genius, im your bog standard point and shoot happy snapper ;)

YES I've just realised there is a slot that - think- takes my camera memory card on my dads laptop, so i can start today hopefully!
More later.

Monday, March 15, 2010

First of all, i forgot that i wanted to put a little love out for my mumma yesterday, not that she knows about this blog but she probably will someday and though we have our up and down days she is always there for a hug which i am supremely grateful for, and i know that i honestly wouldnt be here without her (apart from the fact that she gave birth to me, im talking about since then!)... So thank you Mumma Bear, Big Kisses ♥


Got all my new magazines this afternoon, im practically salivating over the Company High Street edit and the new Vogue :)
I have so many wants at the moment. Sadly I'm sure these pics are the closest i'll get!

mulberry alexa
small Mulberry 'Alexa' Bag

eclectic eccentricity,fly me to the moon,necklace
'Fly me to the Moon' necklace from Eclectic Eccentricity

On a slightly ickier note, my chest is suddenly completely clogged, got buckets of gunk coming up, it just wont clear! My cough is sounding horrendous again. Dont want to be back on IVs just yet. Wanted to manage my old 3 months without them!

more later. or another day. we'll see :)

Sunday, March 14, 2010


Just a quick update on how my Southampton appointment went on Friday...
Well the plan was to get the first flight out there, get some shopping time and lunch at an awesome chinese in before the appointment at 2pm, but we landed at 8am and i could hardly walk to the train platform-across the road - let alone contemplate shopping all morning so we ended up just heading straight for the hosp. Sat around waiting for the team to come out of a meeting and give me a room for about an hour but finally got one and had a little sleep about 45 mins, then the doc managed to come in early... turns out it was lucky we went early cos we only just managed to get away on time as it was, if we hadnt started til 2 i'd have missed out on either talks with the team or my flight home!
Weight has gone from 34kg on January 18th, to 43kg! which obviously everyone is really pleased with. And i managed to get a blow of 43% FEV1 compared to 30% on January 18th and 38% on February 1st... though that felt a bit like cheating 'cos i did about 8 and the rest were in the 30-38 range and then there was that one random 43! But i guess if i think about it in terms of you cant blow more than is possible so that potential must be in there somewhere.
Frustrations are in that whilst everyone is congratulating me for being officially a lot better, i don't feel it at all :(
I suppose it doesnt help that ive had some sort of cold/virus since wednesday anyway, but i just feel like at least if the numbers werent up then i'd have a reason for not feeling good, now i just feel pretty much a failure!
I asked about the enzymes situation, and they were really dubious and basically said to do "experiments" with the timings of my creon 40,000 rather than changing it. And wouldnt listen when i tried to explain that ive been doing that for years :/
and woww they took so much blood! i was practically turning blue by the time they'd finished taking 8 or 10 full vials ha! but the lady who did it managed to get a good vein first go, so fair play to her. Get as much as possible while you've got the vein i say!

Well, Ive had a migraine all weekend and am pushing through it to write this because im bored waiting for the washing machine to finish, but its bedtime now. I cant hardly talk or think, my head hurts so much :(

Goodnight all!

Wednesday, March 10, 2010


SO this weekend was the trip to London which though it didnt all go exactly to plan was much fun! The Lion King was absolutely amazing, i actually nearlycried, haha! Though i was asleep for about 45 mins of it :( Travelling wears me out plus i had been up since 9am when i usually get up around 11, and we'd been walking round the Natural history museum for a couple of hours in the morning as well. Oh and there was a problem with the stage so they had to stop in the middle and fix something which was ok, we got another interval i guess but i was annoyed because it was just after i woke up and i was thinking "why couldnt i have osmehow known this would happen and slept in this little break?!" but oh well. The hard rock cafe didnt happen, they dont take bookings and we got there and waited in a queue in the freezing cold and bitter wind for 45 minutes, only to be told that the wait for a table for us would be another 2 hours and 45 mins, by that time it was past 8 already and everyone could see how tired i was so we went to a steakhouse instead which was pretty damn good!
I felt really awful because my family were having to carry all my stuff around, and had to miss out on a few things they wanted to do because i was slowing everyone down quite a bit! And it sucked that my brother and sister argued the whole time, but thats pretty normal and it was still nice to spend some time with them.

Spent Monday and Tuesday recovering and then woke up today feeling bloody horrendous! Seriously bad... every bone in my body hurts even more than usual, my nose and throat are really dry and scratchy/burny, my ears hurt and im going from sweaty to shivering every 5 minutes, I'm really out of breath and just generally sick, must have a cold or virus or something...
just really worried now that ive managed to keep off IVs since the beginning of February even though i thought i was only going to last 2 weeks, and now I have clinic in southampton on Friday and im pretty sure that if im still like this then my lung function will be down even more and theyll keep me in again, really dont think i could deal with being away from home at the moment, it would just be the last straw mentally, im struggling quite a bit... Just with so many what ifs and what should i do's in my head regarding my health etc, and i dunno, too much stuff.

I've added so many things to my list! so even though a few got crossed off its getting longer and longer!

Read that Rachael Wakefield got her call for tx, i don't know her but just wanted to send out positive vibes to her and everyone else waiting for organs. Much loves ♥