Videos

I've just been sorting out all the videos off the camcorder and it's cheered me up abit. Here's a few

Me driving the boat in Greece

In the Lake District about 5 minutes before Pete proposed to me. Does he look nervous?!

House party last summer. Me = very bungalowed here and making a prat of myself I can't believe I am actually making this video public..... warning, DO NOT make your own sangria! This was the most decent video out of the lot! Do you like my moves? hehe.

Alfie playing with his buddy Murphy

Have you seen my appetite anywhere? I seem to have lost it!

I officially hate IV's!! My body is so tired I can't even be bothered to move most of the time, my sputum tastes yacky, I feel slightly sick and my appetite has gone bye bye. I am still eating stuff for the sake of it but I am not getting any enjoyment from it, I'm scared if I eat stuff that I like whilst I feel like this then I will stop liking it. I did go out for tea on Friday to some Mexican place and I ate all that, I'm OK with some foods, it's hard to explain! All I know is I'm not eating as much as I usually do and I have no desire to even get up and get anything, this is very strange for me! Pete made me a salmon, pasta, cheesy dish last night and it was really nice but I only ate about half of it! What's wrong with me?!!!

I am also getting headaches, this means I don't want to cough so I have sputum bubbling in my chest and throat. I had to do my physio with my pep mask last night as I couldn't face using my acapella as it wobbles your head about, so I got Pete to pat me and used the pep mask. But I didn't manage to do a whole session as my headache which wasn't too bad at the start just got worse and worse and I started crying because it hurt so much to cough. I think I'm going to take pain killers regularly to try stop it getting so bad again.

Making the meropenem up isn't too bad, I've got it to a fine art now and it's only taking me about 15 minutes to make it all up and administer them, which is quicker than when you have them in the ready made eclipses.

The nurse from Calea (Calea are the company that make up my drugs and deliver them) came to see me on Friday to do my tob levels, she comes to your house which makes life so much easier! When you are on tobramycin you have to have your blood levels checked after your first dose as if the dose it too high it can make you have hearing problems (I think). They can't take the levels from your port needle as there could be bits of tobramycin still in the line and then the readings would be wrong so they have to take blood out of your normal veins. I have one special vein for this that hardly ever lets me down and the Calea nurse is really good at taking blood.

My voriconazole ran out on Wednesday night and that's my 3 months up, I can't have it constantly because of the side effects and also I think because it's too expensive, although they don't say this to me! Hopefully my aspergillus and sceposporium (fungus' on my lungs) will behave themselves for a while now the voriconazole has kicked them into place!

I'm going to the cinema later hopefully, I think a big bag of popcorn is in order and I do not think I will have any problems eating it!

My body is weird!

I started my IV's today, my friend came with me which was nice of her, she offered to come, I didn't ask or anything. My other best friend was going to come too but this morning she text me saying she had too much to do so couldn't come, she is going travelling around Australia for 6 weeks tomorrow and she is not very organised so I kind of expected this to happen!

Got to the hospital (after going in the wrong lane on way there and having abit of a panic) and went to my secret disabled space and there was a delivery van parked there! I kindly asked the man if he was planning on staying there and he said he would be 5 minutes, I then asked if he had a disabled sticker? No he didn't and said he would move as soon as possible. I told him could he move now as he couldn't park there and I was late for my appointment. He finally decided to move, idiot!

So did the usual stuff to start IV's, and can you believe it. My lung function is back up at 52%?! Crazy stuff. I'm still going on the IV's as obviously they are all ordered and delivered, plus I still have sore lungs and need booster as haven't had any for a few months now. The only reason I can think that this has happened is because I started my tobi nebs last week? Who knows?! my weight has gone down to 55.6kg so the dietitian wasn't too pleased, I told her my appetite is abit funny and I am only eating stuff worth eating i.e. really nice stuff like curries etc. I didn't have any tea last night as there was nothing worth having and I've started sacking breakfast off. She says to have skandishakes when I don't feel like eating (these are high calorie milk shakes, about 600 calories per milkshake I think, they are delicious!), just so I don't lose anymore weight and it becomes a problem.

Because I have never had meropenem before I had to have my first 2 doses of it at hospital which meant I had to go back 6 hours later which I wasn't too pleased about, no-one told me I would have to do that! When I weighed myself when I went back for my second dose, my weight was 56.2kg, probably something to do with the fact my friend and I went to TGI Fridays for lunch and I ate loads, doctors orders! So I'm not really that concerned about my weight, they do like to make a fuss about nothing sometimes.

I slept most of the afternoon, that first dose of IV's always hits me hard. Not sure if I'm going to like this meropenem, the nurse made it look really easy making it up but when I had a go it took me forever! I'm having meropenem 3 times a day and tobramycin once a day which takes an hour to go through the eclipse, if you don't know what an eclipse is, look at my older posts from when I had my IV's last year and I explain what one is there and I think there are even pictures! Its basically ready made for me to use and is like a balloon that goes down and so pushes the drug into me. I might post some more pictures this time around but can't be bothered to do it today, too tired! xx

Genetic testing

Pete went for his blood testing today to see if he is a carrier of the cf gene. We also saw a lady who went through our options with us and our family trees etc. The results of the blood test will take about 4-6 weeks.

Basically if Pete is a carrier there is a 50% the baby we would have would have cf, because it could either get the faulty gene or the none faulty gene from Pete and it will definitely get a faulty gene from me because both of mine are faulty. If Pete is not a carrier out baby would not have cf but would be a carrier as they would get a faulty gene from me but a normal gene from Pete. The hospital tests for the 35 most common cf gene mutations, I think she said there are about 100 different cf gene mutations a person could have. The most common is df508 which I have from both my parents. Therefore even if Pete's results come back as him having no cf gene, there is a small chance he could have one of the very uncommon gene types that he won't get tested for, it's like 1% our baby could end up having cf even if Pete's results come back as all clear.

If Pete is a carrier we have 2 options. We can have a cvs test when I was pregnant to see if the baby had cf and choose to have a termination if it did have cf. Both Pete and I are not really happy with this option. The other option is to kind of have ivf where they choose an embryo that doesn't have cf and implant that into me, but I would have to travel to London to do some of this.

I asked a few questions, firstly, if we choose to have a surrogate, would we be able to select a non cf embryo to be put into the surrogate? Also, would the fact that my cf team would not recommend I get pregnant affect whether they would even consider doing ivf on me? The lady said she will look into it and write to us with what she finds out.

I just want to know! Obviously I am praying Pete is not a carrier. There is a one in 25 chance he can be a carrier. I don't want a baby with cf, how could I inflict this on someone else when I know whats it's like? If I can try prevent it I will, however I don't think I could abort a baby because it had cf. Afterall I still have a very good life and I am glad I am here! I was trying to think how I would feel if one of my parents had cf and had known I could get it, would I hate them? I'm not sure, I don't think I would most of the time. Maybe times when I'm feeling down or upset about my cf, I would be more inclined to be mad at them than I am, since my parent's didn't know when they had me so I can't really blame them. The other issue of course is that if I had a baby with cf they would be pretty f*cked because they would catch all my infections from birth! Not a good start to life! If Pete is a carrier then his sisters would need to be tested too as they could be, although one of Pete's sisters already has a baby and he doesn't have cf (they test all babies now) so this gives a glimpse of hope! Talk about opening a can of worms!

Last night of freedom!

So I went out last night and it was great! It was one of the best nights i have had in ages, we only went to one bar (Tiger Tiger) because we had vouchers to get 50% off a round of drinks EACH! For one round of 4 drinks it worked out at £7 a round, bargain! Binge drinking heaven! We stayed there all night so there was no walking involved as the taxi dropped us off and picked us up right outside, which was brilliant. However there were 7 of us and we had ordered a 7 seater taxi and when it turned up it only held 6 people, so we gave the taxi driver a grilling telling him he was breaking the law as we didn't all have seatbelts and we negotiated a lower price :o) So the taxi there and back was only £6 each, I think I spent less than £20 last night!

We had so much fun, we were taking so many photos of ourselves posing and stuff it was hilarious if not a little vain... You know those groups of girls/guys that are all dressed up and good looking and know they are good looking and you think to yourself 'I bet they are shallow' as you see them dance along to Britney Spears and they really annoy you? Well that's us.... This was proven when my friend looked at a picture she has taken and then said really loud, 'we are all so pretty, I'm glad we don't have any ugly friends'!! If I was an onlooker I think I'd hate us too. I hate those type of people......! hehe

We had to put some young girls in their place later on in the evening, they were clearly younger than us (meh! I'm getting old now!) and had terrible, terrible hair extensions and they came and sat on our table! How dare they! So my friend went up and told them that this was out table and could they not see all our bags and coats, anyway they moved begrudgingly. Got to respect your elders! Then about an hour later they got kicked out because one of the girls was sick all over the floor, I dunno the youth of today......!

One of my friends found it extremely funny when we were taking loads of stupid photos and I was laughing so started coughing my guts up. She reported to everyone else that the photos were so funny that I was coughing, which then made me laugh even more because that is seriously how people know that I'm properly laughing!

Here's some photos from the many taken last night....!

And below is the morning after!!

Today Pete and I had to go to a meeting at the church with other couples that are getting married this year. It was OK, we just talked about how we can make our relationship grow and what is important and how things will change when we get married. I knew one of the couples, I went to school with the guy. I must be getting to that stage in my life when everyone is getting married! Argh I'm becoming an adult! The worst bit was at the start we had to introduce out partner and say why we want to marry them and I had to go first! i'm not a soppy person so did not feel comfortable with this! Anyway I said 'this is Pete and I want to marry him because I love him and want to spend all my life with him', aw, pass me a bucket....

I'm a numpty

Well I am sorry about that post yesterday! I guess I treat this blog as a diary so just write what I'm feeling etc. when I want to and sometimes it's not very good reading for you guys so sorry about that, but it does help me to express myself and get it out of my system, better I moan on here than go around in public with a face on. You could say my blog is my online therapist :o) It also helps because I read it over later in the afternoon and thought 'Gemma you are a numpty for feeling so sorry for yourself!'. I did however have my mum on the phone worried about me! I do not do this to seek attention I swear and I don't use it as a cry out for help, this blog is kind of a story if you like of my life and yesterday I was feeling abit shitty.....!

Today however I am feeling better, not better like my cf symptoms have disappeared and I am cured (I wish!), more than I am feeling positive and have told myself to cheer up because things could be worse!
Yesterday I did some cleaning in the end, I vacuumed, did some washing and cleaned the kitchen. I then just watched TV, firstly I watched my DVD I got for Christmas 'The Other Boleyn Girl' and then some of 'the Tudors', so I had a Tudors afternoon and I quite enjoyed it. The Tudors is sooo much better than The Other Boleyn Girl, the costumes, the settings, the details but obviously a film has to skim over alot of details, I have read the book the film is based on and that is bloody brilliant and goes into so much detail.

Today I went for my hair doing, I went in about 10am as my mum said I could go in abit later. I took the guy who does my hair a big piece if chocolate cake because he always does my hair for nothing without a grumble (well maybe one or two) so I thought I'd give him some of my cake! I also called my gp to arrange another sick note which he is going to give me for 8 weeks so that's it now I don't need anymore to claim my incapacity benefit. I also asked him about my medical exemption certificate and he said if I went to the chemist they could get it signed by a doctor for me?! So I'll let you know if this happens or if my GP is crazy.

I then went to the hairdressing wholesalers to get some more mousse for my hair, it's so much better than the crap you can buy from the shops and the cans are massive and last me about 6 months and they are only about £4! I also got some purple nail varnish for Saturday, because I will be wearing my purple shoes and a purple necklace, so I'm going to be all purple and black because my dress is black. I'm now at home watching some more Tudors, I'm addicted again! I also started my tobi nebs again on Tuesday because I've finished my months gap (I do them for one month then have a month off), hopefully these will make me feel abit better before I start my iv's. I wasn't going to bother since I don't do them when on my iv's which I'm starting next week, but thought it might help improves things.

Meh

I'm starting to wish I had agreed to go on my iv's this week, my lungs are killing me. I just don't think I'm going to go outside today because the cold hurts too much. I'm tired too and achy, yesterday I also had something wrong with my gut and lets just say I bonded with the toilet alot. I got woken up this morning by the stupid washing machine in the flat above, this is why living in a flat sucks. I know it wasn't early or anything (10am) and they have a right to do their washing, I'm not saying atall that it is their fault, but that doesn't stop it pissing me off!! It's nearly 12 and all I have done is my physio and had some crumpets and hot chocolate, I thought some food might make me abit more energetic but it has not worked. You could say I am feeling sorry for myself and I guess I am, I really want to go out on Saturday. I have made it clear I am not doing much walking and so we have to go to bars close to each other, but what about getting taxi's and stuff? I will wear a coat and gloves etc, I always do but when it's this cold it doesn't really do much. I'm just annoyed at the moment I guess, the flat needs cleaning and I need to do some washing and I can't face doing it. Argh!!! Stupid cf getting in my way, I wanna get my hair done (just cos you don't feel well doesn't mean you should let your looks go, you will feel even worse then!) but I will have to go in first thing tomorrow morning which means getting up early, I shouldn't moan, after all I get it done for free!!

So yes I'm down in the dumps, I wish I could just put up with stuff and not moan cos I feel like I moan all the time and it doesn't help anything! I'm sick of people saying I look hungover, do i care what you think! And no I have not got the flu thing that is going around. Mind your own business!

Just to make matters worse I have realised my prescription exemption certificate thingy runs out at the end on January and so I need to get that sorted and so need to get a form and I guess try to get my GP to sign it. I'm tempted to just pay the £100 a year for my prescriptions rather than having to go to my GP'S to try to get them for free. People with cf do not qualify for free prescriptions automatically, we can if we have diabetes (which I don't) or if we have a permanent fistula requiring dressing as these are some of the criteria. So I will try get around this because I have a port although techinically it doesn't require dressing ALL the time. If your on income support you get them for free too but I don't qualify for that either cos Pete earns too much money.

Just thought i'd add this on, read it in the paper yesterday and it made me smile
http://news.sky.com/skynews/Home/UK-News/Devoted-Dog-Owner-Marc-Greenhalgh-Saves-His-Pet-Jarvis-From-Frozen-Lake-In-Manchester/Article/200901115198087?lpos=UK_News_News_Your_Way_Region_6&lid=NewsYourWay_ARTICLE_15198087_Devoted_Dog_Owner_Marc_Greenhalgh_Saves_His_Pet_Jarvis_From_Frozen_Lake_In_Manchester

Outpatients

Had an outpatients appointment today. Weight is 56.5kg, sats 98%. All good so far... fev1 45%, can't believe it, I'm gutted, totally gutted. The doctors seem to think it is still good because my highest fev1's last year were 45% apart from my 'fluke' 52% as they called it! Well I don't think it's good, I'm pissed off even though I knew really that they would be lower. I'm wheezy, coughing loads up, lethargic and my lungs feel sore. You may wonder how lungs can feel sore? Well they do! If you have nice lungs that don't like to try and kill you then you probably won't understand how a lung can be sore! They feel all delicate and when I cough and stuff I feel like they are throbbing, like when you have a headache. So anyway I am going on some IV's.

The doctor asked me what IV's I wanted. This is new to me! I was like 'erm some that work rather than the crappy one's you keep giving me'. We concluded I am going to go on tobramycin and meropenem, this is a new antibiotic to me so we will see how it goes. You have to make it up yourself (it doesn't come ready made in an eclipse) which I don't like the sound of.....but if it works I don't care! I managed to negotiate when I will start my IV's. You see I'm going out on Saturday with all my friends and it's going to be brilliant, I've even got a new dress (although I need to get it in a smaller size so I hope they have it!). So I can't be cancelling that because of something so silly like IV's! So I am starting my IV's next week, can't wait...... I just hope on this night out that people bear in mind I am ill enough to require IV's and don't make me walk around outside in the freezing cold for long periods of time!

I also spoke to the physio about my hunching shoulders that I have become paranoid about, plus my shoulder is starting to hurt because of it. She says it is normal for people in cf to have hunched shoulders and I'll never get rid of it totally but she did suggest when I do my acapella (because I think the acapella has made it worse) to sit with a rolled towel in between my shoulders and this will make me sit correctly and put my shoulders back and loosen my muscles so it doesn't hurt to pull my shoulders back. So I will give that a go. I also told her my never ending disk on my i-neb has run out.... guess it's not never ending! Stupid i-nebs need a disk in them to work and the disks usually only have so many goes and then they run out and you need a new disk. Well I managed to get a never ending disk when I took part in a study but sadly the disk decided it would cease to be never-ending on New Years day, the physio said it has happened to everyone. I have a load of spare disks hidden away anyway, once they run out she says to let her know and she will get the company to post me one each month. I did ask if she could smuggle me another never ending disk, but apparently not. Damn it!

Lungs are freaking me out at the moment (yes you read that right...!). I had some weird dream on Friday night about lungs, lung transplants or something, I can't really remember. But now I'm freaked out, I keep thinking about what it feels like to have someone else's lungs as your own and it's freaking me out! I don't mean to offend anyone who has had a transplant or is waiting for one, but whatever I dreamt has seriously messed with my head. I even had some sunblushed tomatoes in a sandwich and they looked like little slimy lungs so I couldn't eat them. What the heck it wrong with me? The tomato thing even makes me laugh at how stupid I am when I think about it, but at the time it totally grossed me out! Why am I even dreaming about this stuff?!

My new friend my I-pod

As I've already said, I got an I-pod for Christmas, it's an i-pod nano and it's pink of course! Pete set everything up for me because I'm useless and wouldn't even know where to start. He showed me how to to put music in my i-tunes library etc. but then I couldn't figure out how to get stuff on my actual i-pod, so had to ring him when he was at the pub! Anyway I'm all sorted now and an i-pod genius, well maybe that's abit extreme....!

I have used my i-pod in the car as Pete got me cable, warning don't try to work your i-pod whilst driving, this is dangerous as I have discovered. ... I took my new buddy to the gym yesterday, I felt well cool, everyone has an i-pod and now I have one too! I put Britney Spears on (of course - because I'm a girl and she is way cool in girl world), it was going well. I then realised I was singing along out loud. So I soon stopped that, it's quite difficult to not sing to such good tunes though! Then when I was on the treadmill I was messing with my hair and caught the earphones wire on my arm and the i-pod went flying, luckily I caught it! I also realised I was walking to the beat, god I'm so cool sometimes it hurts....! I'm going to get a cool band to put on my arm to keep it in, then I really will be the coolest gal in the gym!

I had to go in the ironing cupboard today, it's the worst cupboard in our flat. Firstly it is nearly always full because I always have ironing to do! The cupboard is quite high up, not good for people lacking abit of height such as myself. So basically I open it, I can't see the item of clothing I need, I try to delicately move items of clothing to find it, clothes hangers fall out, the iron sometimes falls out (this can be dangerous if not caught! Several times I have had to shout, Alfie run!!) and clothes fall out. I finally find what I need and try to pull it out, usually this pulls more stuff out, it usually has a hanger hook around it, I get stressed out and chuck it all on the floor. The plus side is, I may see an item of clothing that I forgot I had. Bonus!

New Years Eve

Happy New Year Everyone!

I had a good time last night, two of Pete's friends came over and my cousin and her boyfriend came around. We stayed at mine for an or so where I got to play my ipod with all my cheesy tunes on, trust me there is nsync on there and everything!! We then went the the pubs in my local town and met up with some of my friends, I also bumped into my brother and both his exes (who he was out with...? don't ask!!) who are both lovely. Pete and his mates wanted to go to another pub at about 1am to meet my brother but we were at a pub that is practically next to our flat and it would have involved me walking to the other side of town (about 10 -15 minutes in heels) and then walking back, and I couldn't face it with the freezing temperatures making me cough, I did have a coat on don't worry! So Pete walked me home and then they went to the the other pub. I tidied up abit whilst drunk, quite an achievement I think and then went to sleep. Only to be woken up at about 3am by Pete holding the house phone saying my friend is on the phone, I told him to tell her I was asleep. But no she was crying and I had to speak to her. Great.....! So anyway I sorted her out the best I could: she was drunk, I was drunk and half asleep, if was not a productive conversation....

Pete then came to bed and I woke up about an hour later and could feel something hairy under the covers in the bed. It was Alfie! Pete said he was whinging so let him stay in the bed with us, it was well funny because we woke up later and we couldn't find Alfie anywhere. I thought Pete must be laid on him! Then we realised he was on Pete's pillow right infront of Pete's face fast asleep!!! Bless Alf, he can fit anywhere to have a good sleep!

I've been good and done my physio, had to do it in the bedroom though because didn't want to do it infront of Pete's friends! I have realised that when I blow into my acapella all the digits on my alarm clock wobble around, it must be because it makes my eyeballs vibrate or something! At first I thought it was quite funny but then it started to freak me out abit!

So anyway what is 2009 going to bring me? Well i'm going to continue going to the gym and doing my physio twice a day and get my lung function up to 60%! I'm going to become a married woman and who knows what else! Happy New Years everyone xx

My fabulous new purple shoes!!