CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

Shattered

So the last few days I seem to have been quite busy and now I am feeling shattered. These are the type of things I have been up to:

Growing a major concern for a increasing bald patch in my hair just above my left temple!
Battling with a coldsore right in the corner of my lip, it hurts so much!
Also battling with bad skin on my face, hello spots and greasy skin! Not good!
Also still battling with a cold and giving it to Pete in the process
Getting my hair done (this is when I spotted the bald patch)
Going shopping
Ordering some curtains for our new home
Going to the bank to transfer our deposit for the bungalow
Visiting the inlaws
Helping at my mums barber shop
Going to Yoga and bruising my hip
Going swimming and doing 24 lengths again which I'm rather proud of
Developed a fondness for porridge with golden syrup in
Doing voluntary work and getting a certificate for 3 years service (its actually 4 years but they had to give me 3 for some reason that I can't remember!)
Other stuff I am too tired to try remember

We won't be completing on our bungalow this week unfortunately. There was a problem with the house the vendors are moving to, so hopefully it will be next week. Can't wait!

Anyway thats it folks...! I know this is the most boring blog ever..... but I want to go to sleep!

Please fill in my new poll, I am determined to prove to Pete I am not weird!

Nice Dream!!!

I would like to announce that I have had my first nice dream for months! wahoo!!! Although I am abit concerned by it.... I dreamt Thomas Cromwell from the series The Tudors was in love with me. So slightly weird but nice, I'm not going to be picky! It's a start! And now I am strangely in love with James Frain!! Shame he got beheaded at the end of series 3, woops sorry spoiler! Its history though so you knew it was coming!

Pete and I went to see Terminator Salvation last night, it was blumming fantastic!!! Best film I have seen in ages (apart from Twilight obviously...!!!)

Other news - I still have my stupid coldsores. They are all yellow and bleeding, my Nana thought they might be infected so she gave me some sudacream (I have no idea how to spell it) and it seems to helping to dry them out. I have started the ciprofloxicin as I still don't feel 100%, I've been sleeping an awful lot and since the coldsores are not budging I thought this was an indication my body is suffering.

My mum is on holiday at the moment so Murphy is living with us, oh the joys of having two chihuahuas treating you as a climbing frame! They both finished their dog training on Wednesday, Pete and I took them instead of my mum and I. They both managed to graduate (haha) and we have certificates and photographs! I think I'm going to take Alfie to the next level of training since he is so clever! Need to save up abit of cash first!