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!

• 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)

Hello world...

So I'm still here,
still fighting.

In as quick a summary as I can manage, here's what's happened:
Managed two weeks out of hospital. Spent a week in a morphine haze in Jersey hospital where they then decided they were so worried about the fact that I was getting worse that I needed to go to Southampton again - cue air-ambulance and more days of not remembering what even happened, who I talked to. Couldn't eat for over a week, weight had already dropped to a lovely new low of 33kgs. Started becoming more aware that I was on the ward in Southampton. Started to eat a little but all conversations with doctors revolve around my weight. Request CT scan to see what exactly is going on in those lungs, told no because I had one only 6 weeks ago. Had chest xray and doctors decide actually CT would be useful. Come back with report that "they have never seen such shocking amounts of damage in such a short space of time". Saw CT. Spent afternoon in shock at how scarred and gnarly my puffers look. Oh, and had lung function resulting in 22% best FEV1. Doctors say that they don't know why but my cepacia has just run riot and destroyed my lungs faster and more efficiently than ever before. Changed onto new antibiotics - pullin' out the big guns! Likely to be long term. Decision made to have a Peg (feeding tube) inserted into my stomach as I just cant seem to eat enough - eating until I'm stuffed plus liquid calories in Ribena is not giving me even half my required calories. Days spent in agony - chest constantly on fire and legs at their worst - pain from osteopenia plus muscles seizing up from sitting so long, plus pain from immense swolleness due to infection using up my proteins. On constant morphine drip plus top up doses and other painkillers, but can't think from the pain 95% of the time. Mum here for cuddles but causing major problems with her work. I hate the burden that I am - I can't even lift myself into bed at the moment.

Enjoy the whinge?
:) sorry.
I've got some sweet pics (unfortunately only camera-phone quality) of my drug cocktail and swollen tellytubby cankles for you to look forward to.

I'm waking up pretty much like clockwork between 4am and 5am every morning and not getting back to sleep (damn the pain) so this is a new experience for me, being on the computer before lunchtime!

Comment if you feel so inclined and update me on you (or others?!) - I'd like to know everybody's news and how everyone is health-wise...will be making my way through the blogs but there is a LOT to catch up on!



i'll leave you with another hospital webcam photo. love to all <3

Steroids taste FOUL.

I just tried to take my tablets and had real difficulty due to the fact that I have been coughing ALLL night, and I mean a cough for every 5 seconds, and my throat has become swollen and raw. Ended up gagging on the prednislone: it's not coated, and tastes HORRENDOUS. Any suggestions for removing the taste from my mouth? I'm sitting here squirming!

The past few days I have just been so desperate to get home and DO stuff. Especially creative-type stuff: my brain is over flowing with ideas and designs and techniques I want to try out! Once I do get back I'm probably going to make a crafty blog and separate my babble out a bit. I've recently acquired some beady followers (thanks guys!) but I don't know how boring or not they find my health complaints?! I don't know, maybe it's nice to have a bit of variety and I should keep it all together. But then if I manage to set up a shop and start selling my designs then it's not going to look too great for my jewellery posts to be mixed in with lung function news or rumbles about loneliness in hospital! Any thoughts here?

I'm looking forward to getting hold of my camera and posting a nice photo-heavy blog too! I know there will be some of Portugal, some of some jewellery bits, some "haul" type shots of the clothes and craft shopping I've been doing, and maybe an outfit or two? And I'm determined to have a bbq and catch up with some real people as soon as possible once I'm back on the rock so hopefully friends, summer dresses and Pimms will be swirled into the photo mix.



I think I fell asleep when I saw this in the cinema with my little cousins, so I'm excited that I am now the proud owner of a copy on Disney DVD. Though to be honest the second I stop concentrating my eyes are closing today, because of this damn cough last night! So it might take a few watches before I manage to get the entire story :)

There wasn't really much of a point to this blog, apologies for that.
Ooooh, are any of you lovelies able to knit or crochet?
As you might know they are some of the things I want to learn! And I was wondering if anyone could give any "starting out" advice. Not so much on actual technique, I have found myself a book which seems as though it will be quite useful, but more on say, what equipment is best to start with, etc? Needle sizes, wool weight, all that jazz? Ta in advance!

Winning Streak?!

Well, first of all, this blog is a day late as internet was temperamental yesterday! I just wanted to mention my dad first. We have definitely had our ups and downs in life, but as i grow older he has become a unique figure in my life who supports and encourages me in everything that matters, and knows exactly how to be with me. I love that we can sit and do our own things buit still be together. I love you dad.
Also, my old and loyal friend India (sometimes referred to on here as Indie or Beau) - I always have an angel out there watching out for you, and especially on this day, I hope you know that, or at least remember it from now on. Love you, gorgeous xx

Onto this winning streak business!
Something so lovely happened yesterday :)
My dad flew over from Jersey to Southampton to keep me company in the hospital again for a few days. Because I had come over unexpectedly on the air-ambulance I had literally only a carrier bag of things with me that Paul (mother hen's other half, who is also very special and good to me by the way, <3...) had hurriedly thrown together, so Dad put together a little suitcase with some clean pjs and pants etc, so I can at least feel clean-ish and a little more human! He also brought post. eeep, yay! The first package to be opened was the one that Laura sent with the Lonelies beads I won. I knew what was in there but I was honestly so excited to open it, and I was not at all disappointed! The beads are all beautiful and perfect. They are a lot smaller (think, half the size) than i have always imagined her beads to be but that just added to the amazement at how delicate and detailed they are. Once again, thank you so much! And I will definitely be forwarding the love onward with a giveaway of something I make using some of the beads, though as I said previously, it may be a little while.

A second, MYSTERIOUS package was also there. With a sticker on the back showing the logo for the site Ollie and Nic. This was very curious indeed as though I have lusted over certain items on this site of cute-nosity, I have not yet placed an order. However, on opening the packet, all was revealed and became clear! A gorgeous handwritten notecard inside informed me that they liked my answer to a competition (i entered around 6 weeks ago to win a huge haul of makeup, mostly Benefit brand which i love) so much that I had been chosen as one of 8 runners-up! I had had to finish a sentence, and actually have a copy of the confirmation email so I can tell you all that my answer went: ONE BIT OF MAKE UP I CAN'T LEAVE HOME WITHOUT IS..."a really rich, smudgy eyeliner! Blacker than black in colour. You can create simple looks by just defining your eyes, making you look put together, or go sexy and sultry with dramatic smoky eyes. Plus if youre really stuck for a laugh it can also be used to create several styles of fake moustache to great effect! ;)"
So I'm guessing my strange brand of humour worked to my advantage here! Like I said, I didn't actually win the £170 worth of Benefit goodies, but the little leather keyring they sent was really lovely, and the fact that it was a surprise, they hadnt emailed to let me know or anything, really gave me something to smile about. I was so genuinely happy. And I just CAN NOT believe that after two years of entering every competition I see I have suddenly won two prizes in two weeks! I can't keep myself from exclaiming this out loud, I think father is getting rather bored of the same old tune, but I cant help it! I am like an excited child :)
So thanks also to the Ollie & Nic company!
*Photos to come when I get home to my precious camera. Yay!*
Question: Is it greedy to keep entering competitions when I see them now that I have won two prizes??

Health-wise, yet again I have more grumbles, it seems that every time I squint and manage to see getting HOME in the distance, whatever is out there realises and throws some other obstacle at me. I'm doing my best to keep climbing over them, but in all honestly, I don't want to be having to fight for every little thing for much longer! Yes yes, it's all about the climb, life's hard, etc etc... it just seems that most people squeeze in a break every now and then where they get to have things go smoothly, at least a little?! Don't get me wrong, I don't expect health and happiness to be handed to me on a plate: first off, I'm not that naive! But... it would just be nice if the pressure could lift, just slightly, just for a little while. For now I'll keep plodding on though I s'pose! :)
Technical-ish-ly, things seem to have in fact worsened rather than seeing improvements with my chest after the bronchoscopy on Friday - the temperature spikes continued but the doctors were not too surprised by that, seeing as they had probably stirred up all kinds of garbage in there. However once those had died down, they are more surprised to see that my sats are dropping ever lower, currently sitting around 82-84% when resting, and worse when expending energy or sleeping... and anyone who knows about me sats-wise will know that even when Im really poorly there have only been 2 or maybe 3 occasions where my sats dropped below 96-99%, and that was quickly rectified by 2 or 3 days of IVs tops. I'm now on day 13 (I think) of IVs and they are showing no signs of taking me off them any time soon. This morning I was started on a bunch of extra nebs, including one which I think is salbutamol which makes me trembly for hours, I hate it because I feel weakened, but if it's going to help by opening my airways then I have accepted taking it short term, they have also put me onto steroids. I'm not sure if it's that I'm tired but I can't even think how they help right now, can any of my CF friends advise on that? Ta.
I'm still a while from getting home I think, so mendy vibes would be appreciated please!-- as long as you cant think of anyone who needs them more urgently of course :)

I am however going crazy just sitting here on my oxygen and reading magazines alllll day, keeping fingers crossed that I might be allowed out very quickly tomorrow, and if I am then I am getting a taxi to HobbyCraft! I have never been to one but I am imagning it as seriously amazing, and the plan is to stock up on as big a variety of crafty bits as I can before dad leaves (tomorrow evening i think) to keep me busy afterwards. Oooh, does anyone know Southampton well enough to suggest any other good crafty places? Thanksss youuu

I'll end my babble here. Darnnn, it went past midnight, that makes me two days late! awwhh welll.

Much love xx


because i don't like to go too long without a photo. and because it's a damn cute kitty. and because i actually laugh at these moustache tatts :)

I'm Alive

...Just.
Only a quick health update here so prepare for something that does not excite- have been informed that a couple of you were wondering what had happened to me so I pretty much just want to reassure that I am still around! Though again, I'm quite ill.

Portugal continued as it started - it was nice weather but I wasn't really well enough to fully enjoy the trip, mainly problems with breathing continuing. On the last night I was getting pain back in the top of my right lung again, where the trouble was a couple of weeks before, I was really worried about he flight back but it didnt worsen on the flight. I also got stomach pains that just didn't let up.
I got home late on the Sunday night, but was in A and E by 5.30am with these stomach pains as well as vomiting and of course the pain in my lung. After a couple of days in Jersey hospital I was taken by air ambulance to S/Hampton hospital again and ended up being diagnosed with DIOS but also a cavity-causing pneumonia, which is obviously what has been hanging around and making the past few weeks hell for me! And why I didnt feel better after the IVs. Then after a bronchoscopy scheduled for Friday afternoon, it was called off at the last minute (and I mean, seriously last-minute, I was practically being wheeled into the room!) because my blood clotting levels were completely out-of-whack and if they had knocked anything in there we could have been left with a very dangerous bleeding situation. I'm now having a lot of tests on liver function which they aren't too pleased with, as well as high doses of Vitamin K, along with trying to deal with the immense amount of pain that this pneumonia/cavity is causing to my chest, hoping to be well enough for a bronch on Friday. Oh, and I'm also on Fluclox, Mero and Tobramycin for !however long it takes" - let's hope it's not too long as they are messing me up!
I will be back when I can but for now thanks for thinking of me XX

Making an Effort

So I think I'm just going to write about what's been happening in the hospital, more for myself really than anything so that I can refer to it next time and remember what caused which side effects! But also just to try to get all my complaints out for a while.
SO I came into hospital on Wednesday 5th, and was put straight onto Meropenem 3 times a day and Tobramycin twice a day. This was followed by the usual general exhaustion and nausea that I expect from IVs, but on Friday they added in Co-trimoxazole 4 times a day and things really went downhill... Crazy sickness and eating or even drinking water became an impossibility, by Saturday evening I decided to refuse the Co-trimoxazole and went back to just Mero and Tobra.
On seeing the docs on Monday they decided to switch the Tobramycin for Colistin IV since there was no real improvements happening, assuming I would be fine with it because I can tolerate it nebulised... wrong again! Tuesday I woke up so low on energy I couldnt talk or move, was flat on my back all day and it didn't help that that was the day my dad went back to Jersey aswell, so I was left all alone in that state! Everything felt heavy and broken, was finding it hard to breathe like someone was sitting on my chest and squishing my ribs, so Tuesday afternoon was taken off the Colo and left with just Meropenem... fine by me as I'd become used to the effects by then, though a worry that they originally wanted me on 3 antibiotics to have the best chance of fighting my Cepacia, and I was left with only one.
And well now, here we are, Friday afternoon. I think I have just about got back to the level of how I felt on my first day here! haha. Talked to the doctor this morning and he said rather than start me on the only other drug they can think of, Amikacin, (Tazocin, Gentamicin and Ceftaz are out due to allergies) and me have to stay another whole 14 days, they will just leave me on the Mero alone for 3 more days. To me it sounds overly-optimistic to think I could be well enough to go home in 3 days but we'll see, fingers crossed! I'm telling you now though, there's no way I'll be going without a fight if they try to send me home and I'm not feeling any better, no way I'm going to have lasted this out for nothing!
I'm sick, in agony, bored, lonely, tired, dirty, frustrated and hungry, but hopefully it will be for a reason.



And now the whinge is over. I will be making a real effort over the next few days to be POSITIVE!! Which if you know me is a bloody hard task. I am probably the most negative, pessimistic person you could find. Depression loves me.
But: I have been talking with my lovely friend Jordanna, and we are hoping to put some plans into action over the summer to do some fundraising - it is something we both want to do, will make us feel good and get another thing crossed off my list :)
I have also spoken to my friend Ollie who is super special to me and we hope to go on a hot air balloon ride over the summer, another list thing; and also hoping to go on a couple of travels with people - health (and money!) permitting of course.
I really want to actually get these plans into action and DO some things rather than just dream and talk though. Back in January when I was really poorly and the doctors were telling me I had maybe only two years left in this world unless I got a transplant, my dad and I made lots of grand plans and had big ideas, but none of them ever really got off the ground. Now its 4/5 months later and some of the things on my list are crossed off but I really want to create some experiences and memories with other people as well as the things so far which have been mostly more perosnal "achievements", if you could even call them that, like getting my piercing and tattoo etc.
I want the second half of 2010 to be different. I don't want to be looking back at the end of the year, as I did in December 2009, and be so thoroughly disappointed in myself and feel that I've wasted some of my precious time, what could theoretically be half of my time left altogether. You just never know what's going to happen. In the last six months-year we have lost so many CFers and I'm realising now that most of them weren't expecting to go... it just took one quick unexpected infection, one course of drugs that didnt help like they usually did, or a call that never came and then BAM, things were over.
It's not cancer, we aren't going to get told, "OK, you have 3 months to live, go out and enjoy it well". We need to live every day as if it is our last because it really could be, this is true of anyone ofcourse but even more so with CF... I just need to keep that in mind as much as possible, and hope you guys will too! We have been dealt a shitty hand but it could definitely be worse, and our lives are too short and prcious to be spending time miserable or doing pointless things that make us unhappy.

Ok, well that got maybe slightly depressing but I meant it to be positive, I promise!
On a happier note, I think my dad is coming over tonight, I will have company and we will hopefully go out for some nice food. I need to get clean though!
Also I am so so grateful to those of my friends who have sent me things in the post which arrived today - Jordanna sent a book, Alice in Wonderland so that I can read it as it's on my list, Tiff sent me a lovely letter with some photos and a little "Happiness Kit" which I will post more about later! And Annie sent a cute card with some little teeny toy animals (she works in a toy shop hehe). Along with the card Megs sent me earlier in the week, these simple things have brought some sunshine to my stay, it's nice to know that when you're feeling so low and forgotten that people really are thinking of you and will make the effort to let you know.

Ok, I think I've probably bored the socks off you now so well done if you are not snoring with your head on the keyboard! Bath time for me now. So much love to you all and I hope you are well and happy xx

Worth It?

The days are passing in a haze of pain and sleeplessness
I've felt worse with the drugs for longer than usual
I detest this place
The sterile smells and lonely room.
I feel like maybe all this isn't worth it. I want to stop.
I wonder what it would be like to just let nature take its course, leave all the chemicals and treatments and exhaustion of having to try so damn hard every day.
I wonder how long I would last?
and then I feel guilty.
SO so guilty.
So many of us are fighting to survive, wishing and praying on new lungs and a new life, and here I am wanting to give up and give in.
I dont think I really deserve much of this help, the money spent on my treatments, medicines, nurses, doctors, room and food.
Im just wasting the oxygen around me. Breathing it in, and using it up when others of you deserve it so much more, WANT it so much more... Im so sorry :S