True Blood

My new obsession is a series called True Blood (Thanks for that Jo!). In this programme vampires live amongst humans since the development of synthetic blood, this means they don't need to drink from humans anymore so want to 'main stream' and have legal rights etc. There is discrimination against vampires, a new illegal drug on the market called 'V' (Vampires blood) and alot of weird vampire/human sex going on, the humans get nicknamed 'fang bangers'. It's quite dark and weird, check out the link, even the opening credits are unusual and strange!

http//www.youtube.com/watch?v=5r77tta6HPw

A glimpse inside my head

I’m feeling really fed up at the moment, I can’t stop worrying and planning, I’m constantly thinking all the time.
I’m sick of my parents hating each other and I’m dreading a bust up at the wedding, I’m sick of them getting me involved and using me as a tool.
My parents split has not put me off getting married atall, life is what you make it and if Pete and I want to be with other, only we can determine how that will turn out. But to be honest I don’t think we could have picked a worse time to get married.

When I’m upset about something it makes me feel hollow inside and I get all these crazy thoughts about how I can solve the problem. However I cannot solve this problem, its out of my control, I haven’t even done anything wrong so why do I feel so pathetic?! It makes me feel sick and this makes me think I should stop eating, if I lost some weight maybe it would create something else to worry about and the other things would go away. Told you it makes me think crazy things!

Today at outpatients the nurse commented that I looked fed up, I told her I was and why, I felt stupid, as if she wants to know all my problems. I cried on the way home because its just nice to tell someone, someone who isn’t caught up in everything, someone on the outside. I feel like I can’t say anything to anyone without pissing someone off, whatever I do doesn’t please everyone and even if I just do what I want it’s exactly the same. I watched Smallville this morning and the female character had faked her own death (or something like that) and gone to a different country to get away, I wish I could do that sometimes. I can’t wait till our honeymoon, maybe I won’t come back!

I try to think when I’ve felt like this before and I got through the other end, but it doesn’t help me feel better for now does it?

I know my family read this blog, I probably haven’t helped the situation by writing this but I feel like I’m going crazy.

So you see, even people with cf have non cf problems

Outpatients: fev1 43%, weight 55.5kg, sats 97%. I have to go back the Monday before our wedding so they can check how I am doing. Apparently I have an unknown fungus growing on my lungs, anyone would think I live in a barn!

Sad News

I am absolutley gutted to have just read that Vicky passed away last night. After been in hospital for over 6 months she finally gave in, is no longer in pain and has gone up to Heaven. She will be joining her fiance who also passed away in 2006 (also due to cf I believe). May they rest in peace together. My thoughts are with her close friends and family, they should be proud of her because she was such a strong and lovely little lady.

Repeat Prescriptions!

On Thursday I went my GPs to pick up my prescription, I had asked her to prescribe 2 months worth of medication because with the wedding and honeymoon its likely I might not have chance to go collect some more in 4 weeks. Does anyone else think its the most stupid system? You drop your request off then you can't pick up the prescription until 2 days later. This is because the woman who does them is not actually qualified to sign off prescriptions so she writes them all out and then a doctor has to sign them, hence the 2 days of doing something that the hospital doctor can do in about 30 seconds.

So I went to pick it up and she had missed some stuff off and prescribed me some stuff for 2 months and some stuff for one month. I'd even done my own note to her with everything neatly listed as I went through my medicine cupboard, I mean its not that hard is it? What is hard is going through it all and trying to recall from my memory every single medication I am on and if they are on this prescription she has handed to me.

So I told her (very politely may I add) that she had made some errors, she asked me to go through it and write down what I needed (ahem I already did this when I handed the nice neat note in 2 days ago) then said 'ok I will have it ready for you by next week'. WHAT?! My GP's is a 15 minute drive away, its not at the end of my road. Needless to say I had to leave before I did something I could have got arrested for.

Here's an idea..... instead of having this useless woman (who I'm sure just works on reception) writing my prescriptions, why don't I write them myself and then get the doctor to sign it myself? Would save myself alot of hassle!!!!!

Anyway I took the prescription I did have (with many items missing) to the chemist and informed them I would pick it up tomorrow (Friday) so I didn't have to wait around, plus they have to order half of the stuff in.

Friday morning I sent Pete to pick up the prescription, he came home empty handed. Apparently it wasn't ready yet, it would be ready in the afternoon. Well that's useful because I would be at a wedding then! So I had to ask my dad to go and collect it Saturday morning as we wouldn't be back by lunchtime when it closes.

Saturday afternoon and thank god my dad had remembered to go collect it as I'd run out of nearly everything. Still no sign on my tobi though!! So I haven't had any tobi since Thursday morning and it's now Monday. This is because the lovely tobi people will only let the chemist buy it directly from them so it takes forever to get hold of, plus the lovely GP will only write me a prescription for 28 days worth, even though most months have 30 days in them. It can take upto a week to get hold of tobi, so if you work this out I have to wait 2 days to get the tobi prescription from the GPs (if I'm lucky she will remember to put it on the prescription), then a week from the chemist then if I have 28 days worth I need to be arranging my next lot 19 days later! I tell you, you have to laugh otherwise you might just cry!

Back to Friday morning.... I woke up with a banging headache that I could not shift through any amount of painkillers which was disappointing since I had been looking forward to this wedding. I don't think I was much fun really throughout the day, abit quiet since talking doesn't exactly help a headache. It was a lovely day and all went smoothly although the bride was late and the groom was getting slightly worried! After the meal I had a sleep for about half an hour after taking a load more painkillers and then did my physio, realising I had brought everything apart from the chamber I need to do my dnase through my i-neb, doh! The sleep seemed to do the trick with regards to the headache, only took about 14 hours to shift lol. So then I was ready to party!!! Lets say I got bungalowed and Pete and I were the last ones standing of the night, I even got everyone up on the dancefloor as it was empty for about the first 3 hours. So anyway I think I made up for my quietness throughout the day.Oh here's a tip for you, if you are hungover in the morning and feel sick DO NOT do your acapella.....

Bride and Groom (Petes Uncle)

Abit drunk....

My future father-in-law and sister-in-laws!

Gutwack

I started the Voriconazole on Tuesday morning and then Tuesday night I didn't feel too good. It was weird really, I got the usual blurred vision in the morning about an hour after taking it, this tends to last about 20-30 minutes, it kind of makes me feel abit spaced out and I find myself just looking at the wall intensely!

So Tuesday afternoon my stomach starts to feel abit strange and I thought I had drunk too much coffee! It got worse and so felt like I had forgotten to take some tablets with my food, however I knew I had not. I now have a technical term for this feeling (when you forget to take your food tablets), someone on facebook said it, so from now on it shall be called 'gutwack!'. I felt really sick by the evening and my stomach was twisting, turning and bloated, I also felt lightheaded and nearly fell over when I stood up on a few occasions.
In addition to this when I did my evening physio I coughed up absolutely loads of gunk, thick lumpy stuff, it was never ending! Very strange indeed!
I felt fine the next day so I have put it down to the voriconazole hitting my system and working its magic!

Yesterday I had my hair done as Pete and I are going to his Uncles wedding tomorrow. I'm looking forward to it as I feel like I've not done much since my hen night, plus I can't wait to wear my new outfit!

Apparently Alfie spent all Tuesday barking at a statue in my nana's garden haha! The past two nights Pete has put Alfie's basket on the sofa and Alfie has sat in it watching TV like it's his throne, to add to this Pete has been spoon feeding him yogurt whilst he chills in the basket. Pete pretends he's not soft when it comes to Alfie but behind closed doors it's a different story! Alfie gets treated like royalty! I'm getting sick of Alfie barking at the TV everytime an animal is on the screen, he even barks at the directline advert as its a phone on wheels moving around. He doesn't like the meercat.com advert and don't get me started on the blue cross advert with poor Barney. I know its funny but also annoying at times! lol! We are considering squirting him with water if we tell him 'no' and he continues to bark, DVD will probably end up blowing up though from getting wet!

Vanity is permitted

Had the joys of outpatients today, I did enjoy my drive there though. I had a mini rave in my car, I have this new 90's album and I love it!

My lung function is 42% now, I blew so hard my head almost exploded as I was determined for it to be up again. Its so annoying, I don't know if anyone else has this problem, but if I could blow for as long as possible without dislodging some sputum and needing to cough then I could perhaps get a tiny bit higher.

My crp at the end of my IVs was 34 which was actually higher than when I started (it was about 18) but apparently this could be a reaction to the antibiotics, especially since they made me feel so unwell. They took my blood to see what my crp level is now and if it's higher they are going to call me. The doctor were very understanding that I don't want to go on IV's now as it's too close to the wedding and I want my arm to look nice! Vanity is allowed even when you have CF :o)

I have been put back on voriconazole which I have to stop 5 days before the honeymoon so that I won't burn in the sun. I have to go back in 2 weeks for them to check on my liver as voriconazole can cause liver problems.

So overall an ok visit, least the lung function is up abit and I'm feeling ok just very breathless all the time. Just got to trudge along though don't you!

Petes Stag Weekend Shenanigans!

Some pictures from Pete's stag weekend in Spain. Yes that is Peter dressed as a sailor girl and yes that is everyone with Pete masks on in Hawaii outfits. You are lucky I haven't subjected you to the picture of him in a mankini!

This week I went for my final dress fitting, its fits me perfectly now (it was a size 14 to start with!). We also met up with the venue to go through all the food, drink, timings, table plans etc. So stressful, here's some advice. Don't get married when your parents are in the middle of a divorce, I swear I might strangle them both at this rate! To add to the stress Pete and I seem to be quite skint at the moment so we have been putting off going food shopping and using everything in the cupboards and freezer, the result has been I have had to use my imagination alot to conjure things up for tea! I cooked a risotto last night so at least I am using some of my cooking skills!

The cleaner came on Tuesday and when I got home the flat was so tidy, I didn't realise it could look so clean and tidy! She moved some stuff around which was abit annoying at first but I've got used to their new places now.

Took Alfie for a walk on Wednesday and had to carry him back as I think he stood on a nettle and was just standing there, paw in the air, looking at me with a sorry expression. I then took him for a walk on Thursday with my brother and Murphy and we went up into the woods away from everyone around the lake (school holidays = busy) so they could go off their leads. It was damn hard work walking up the hill though!

Went swimming today and it was such hard work, I managed 22 lengths but I was so out of breathe that when I got out of the pool I nearly fell over! Need to get back into the routine as I have been slacking lately!

4 weeks today until the wedding! Ekkk!

Catching up with the daily news...!

I totally forgot I recorded this the other week, it's Alfie watching the news. Well I found it funny anyway!

The week has flown by!

For some reason I haven't updated this blog for a week so I shall tell you what I have been upto!

Monday I went for my dress fitting, I was scared to cough because she had pins all down each side and I thought they might all pop out! My dress is going to be tight, I think I'm not going to be able to breathe! My veil has arrived and I've ordered a bag and hair piece as I am not having a tiara. I also went out for lunch with my mum and brother.

I went shopping one day, Thursday maybe? I had £70 to spend on a whole outfit for a wedding I am going to in two weeks. I knew it was going to be struggle and since I hate shopping I was not really looking forward to the experience! Anyway I managed it with £10 spare! So I treated Pete and I to a takeaway, the Indian we use has been shut for weeks. We were all in despair, lost, confused as to where our weekend takeaways would come from. We tried other places but nothing compared. Then this week it finally reopened, phew! I thought my life as I knew it was over! Anyway back to the outfit, I got a dress, some shoes, a bag and a big feathery hair thingy. Not bad ey?

I have finally started back at the gym after not going for about 4-5 weeks, I was not impressed when I got there. They have moved everything around and thrown my card away with what levels I do on the treadmill etc, therefore I had to try recall from my memory. I did OK to say I haven't been in so long. I was coughing quite abit when doing my sit ups and a guy asked me if I wanted some of his water, I was so embarrassed!

I went to church today with my Nana as our wedding banns were been read out. I had another embarrassing moment there, I was coughing loads in church whilst singing along to Lord of the Dance and this old lady turned around and gave me a tin with some little tablet things in. I didn't want to seem ungrateful so I just took one and hid it in my pocket. I always seem to have these embarrassing moments, when Pete and I went to London we were looking at the Crown Jewels and one of the guards tapped me on the shoulder with a cup of water he had gone and got me! Also the other day when I was helping at my mums barber shop this guy asked me what was wrong with my arm (nosey bugger) pointing to my port, it's still abit red where the needle was. I got all embarrassed and just said I'd had a needle in there, I didn't elaborate. I mean where do you even start explaining to a nosey stranger what a port is and why I need one etc etc.

Pete is on his stag weekend, they have gone to somewhere in Spain (I don't pay much attention) so I've been all alone. I have quite enjoyed it though, just Alf and I! On Friday I watched The Notebook then last night I went for a curry with my friend and then today after church we took Alfie and Murphy for a walk. Then this evening I watched Marley and Me which by the way is the saddest film ever. I think I cried pretty much all the way through, even the funny bits made me cry! Pete is back tomorrow, he called me yesterday and apparently on Friday night he had to dress as a sailor girl, oh dear..!

Alfie had to visit the vets on Friday, on Thursday afternoon he started shivering and was just sitting around not been his usual self. Pete and I let him sleep on our bed that night and everytime I woke up Alfie was just sat there looking at the wall so I don't think he slept. During the night I tried to move him but it seemed like he couldn't move his back legs. In the morning I got him to walk and he was dragging his back end so obviously I was concerned as he was still acting all strange. I booked him into the vets and as the day went by he seemed abit better but still wouldn't walk anywhere. So off to the vets we went and she said all his back and knees felt clicky and he must have jumped off the sofa funny, so she gave him some pain relief and something to reduce the inflammation. He's fine now, although he was asleep on the top of the sofa today and rolled off! Jeez! Death wish or what!?

The best news this week is.... that my Nana has got me a present, she is paying for us to have a cleaner! It's brilliant because I do struggle with it so I'm not going to turn down an offer like that! I don't care if people call me lazy or whatever, they are just jealous that I have such a generous Nana :o)

Hen Night No.2

Here's a slide show from my Hen Night in Newcastle, had a great time! By the way I am not in the habit of letting strangers try to lick my face (I didn't realise he was there!) or walking around with my bra showing. I hope my dad doesn't have a heart attack watching this!