MY BIRTHDAY PARTY
After my Skydive i had all my friends round for a Birthday BBQ/Party!! In true style as i'm now well into my fundraising, i charged entry of £2.50 to everyone!! Which wasn't a bad deal as me and Steve provided all the food for party!!
ME AND MY CF
This is Me being Honest with myself!
So by this point, I had actually just finished my IV's after having them for 19 days! This lots of IV's were very frustrating for me to say the least, i was very busy and tried my best to rest, i had booked them in for then because i knew i was going to be busy with everything, but because of how poorly I got just before I started it took a lot longer to recover this time!! Many of you will shout at me and say i shouldn't of gone to work and i should of done this or that, maybe i should but sometimes i actually struggle more when i don't get up and do things, them days of sitting around doing nothing, trying to rest, i do nothing and when it comes to getting up to make lunch or go upstairs for the loo, i cough and i'm exhausted! Where yes, i struggle to get up in the morning and get myself ready for work when i'm poorly but when i actually get to work, other than feeling a little tired, i'm actually ok and surely walking around for 4 hours a day getting exercise is slightly better for me than sitting watching day time to TV and on Facebook!
So part of my problems over last two years is every time I have IV's a loose good bacteria! It's not a nice subject to talk about really but i have lot of problems with Thrush and I seem to be riddled with it! I have had swabs and have it in mouth, peg site n down below to put it politely!
I know so many of you girls know what it's like, but i can't describe how bad it's got for me, my repeat prescription with the GP almost has as many drugs on it to treat Thrush as it does my CF. The problem is they just don't do anything to get rid of it, no sooner av I finished IV's, i'll be on orals and then back on IV's my symptoms never have chance to get better!
So this time having become so poorly, it really was because i pushed myself too far, i knew i had a lot on, knew i was going to be starting IV's on 13th June but tap started too fill my lungs up and i started to really struggle in the few weeks before that and i didn't put myself on orals and i didn't bring my IV's forward like normally I would! But i was so sick and tired of feeling so ill with the systems of the thrush i just kept saying to myself "i'll see how I feel tomorrow!" My lung function hit an all time of FEV1 27% which quite honestly scared me! I felt so tired, exhausted and ill and couldn't cope with the amount of crap coming out of my lungs, if i'm honest if i'd of seen anyone else like i was i would of told them to get their ass in hospital, but i was stubborn! There are alot of issues going on with our ward and hospital, that's so my next blog, that i really didn't want to go in hospital. So off home i came with my home IV's! Still carrying on with everything else too!
That day though I did ring my GP and ask him to refer me to someone who could help me for my thrush, because i was at the end of my tether!!
The refferal came through really quick and I went to see Dr Bodasing, a consultant in Infectious Diseases, who sent me for swabs first, she needed to know if i was resisitant to all the drugs i've been using! This was something I have had problems with my chest consultant, one treating n two believe it was such a problem! One he male n two he specials in lungs, not sure what i expected! He always said i would have to have immune system problems to have thrush everywhere for it to be so bad and for the drugs not to be helping! Well turns out I was resistant to everything I had been prescribed! For years now everytime i have IV's i'd be put on Fluconazole too, i've used Pesarys, Creams the lot and oral Nystatin for my mouth!
So now i have the most lovely lady consultant helping me!! She grabbed my arm the other day and said "Please don't worry, there aren't many people like you, but i will do my best to help you, we have lots of things we can try!" So now i'm using a special drug, that had to be made up for me in pharmacy, because it's not mass made because it's barely used. It's a cream combining two drugs Flucytosine and Nystatin! It's not very nice what's i'm having to do with it every night, but fingers crossed it'll help, it's just for two weeks initially!
She's now working on finding me a drug for my mouth, Nystatin helps still just treat the symptoms but doesn't get rid of it! Waking up in the middle of the night gasping for a drink because my mouth is so dry and the back of my throat, it's horrible and the constant taste in my mouth, i'm sure i don't know what half my food tastes like anymore, it's probably why i need sugar in my tea now!
But saying that sugary drinks, alcohol etc only make my mouth worse, so i try to stay away, i have my half a bottle of coke at work each day to give me little energy boast if i feel tired then it's tea and water! i'd give anything to have a nice pink tongue instead of one with a horrible white/browny stain on it!! Brushing my teeth u'd think it helps, but sometimes it just circulates the thrush round my mouth making things worse!! I'm in a catch 22 with everything I do! So I hope i can stay off anitibiotics for next few weeks, my IV's are booked in for 28th July now so i can have 2 weeks before my holiday though!
Fingers crossed this treatment helps, It's also made my chest consultant listen now, he's now doing a Bronchoscopy on Monday for my sins, i'm so not good with swallowing the camera, i've told them give me lots of sedation! So fingers crossed i'll be ok! But this is to see if they can get sample from deep down to see if i have Thrush "Candida" in my lungs, as it can hibernate there too n i've had a lot of IV's over last year or so and not really felt the benefits for very long! Although i also have Aspergillus so they gonna look into that bit more too! I've been treated before with Intraconzole and it helped but last time it affected my Liver so they not wanted give it me since!! Boo Hoo!! I just want to try though!
Enuff with that now anyway! I'll update u after my Bronch on Wed with more!!
BLACK EYED PEAS
Next I went Alton Towers to see Black Eyed Peas (6th July) this was my birthday present from Steve!! Mart was there too with his I was a brill concert, it had rained all day so when we got there it was still raining a little but then it stopped! Most the people were wearing the sad little poncho's! I'm sure Alton towers weren't complaining, bet they made a packet!
MUM & DAD's BREATH OF LIFE GARDEN PARTY
So next on the agenda of my busy life was my mum and dad's garden party (10th July)! Mum and Grandma had spent the last few days baking and my dad was painting and tidying and clearing out the house ready!! It was a charity garden party for Breath of Life!! It turned out to be a lovely sunny afternoon and the family and friends who came were really generous! Selling cakes, raffle and mini tombola and they raised £325 for the day!! Which was brilliant!!