Jo Was Neglected

Remember Jo?

She passed away last November after finally getting on the transplant list. Well it turns out the reason she died is because the medical staff did not look after her properly when she was admitted to hospital with suspected Meningococcal Septicaemia.

Words cannot describe how I felt yesterday and today as I have read articles about how she was treated. She didn't deserve this, don't these people realise that they are responsible for peoples lives? She is dead because of their neglect, it makes me sick.

I can't fault the NHS in lots of areas, the CF care I receive is brilliant. However these particular people let Jo down, I just can't believe this is what became of her after all her battles with CF. It makes me scared that I rely on these people, just like Jo did, and in her time of need they didn't help her. It's enough to put you off going to A & E for life.

For some of the articles click here and here

Link to the local News

Fly Hunting

I've had a pretty dull week really, I have been quite achy and feeling rather tired, so it's not really given me the motivation to do anything! I'm feeling better today so maybe it was just abit of a virus or something? Who knows!

I went for my port flushing on Wednesday, that all went well. Alfie and I went for a walk beforehand and the heavens opened, leaving one very wet dog looking rather like a rat and one miffed off lady with a dry head thanks to an umbrella but very wet legs and feet! We went for another walk yesterday that went alot better and Alfie was very well behaved, he didn't bark at any other dogs and even when one tried to jump on him, he quietly growled and ran off rather than try to start a fight. Very proud of my little munchkin!

We have a fly living in our house, it just won't go away! It has lived with us for about five days now, I have no idea how it is surviving but it is and its driving me crazy. It's everywhere I go, I've tried to hit it with a towel, even Alfie has chased after it on several occasions, which is hilarious. I think this is why I have secretly not made a proper attempted to kill it, Alfie jumps off furniture, jumps in the air and even sniffs around for it, it is SO funny! I keep meaning to video it, if I remember I'll put the video on here.

We are going to a surrogacy social event on Saturday, I am so scared! We were supposed to get matched up with some buddies to look after us, but our buddies have not made any contact so the organiser has just given us her number incase we have any problems. So now we are buddyless! Not a good start! Although, the event is in Stockport which is handy because that is where Pete is from, so at least we know where we are going! Not really sure what will happen at this event, but there will be other intended parents and perhaps some women who want to be surrogates as well, so quite nerve wracking! Wish us luck!

Must Be Feeling Good!

Well my hair is looking abit better so I'm not sure what I am going to do yet. I basically put some conditioner on it and left it on for about 2 hours with a shower cap on to try retain some of the heat and also so it didn't dribble down my face! I might try having it done with blonde colour rather than bleach next time and if its still as dry as straw then move onto the brown.

My mini has gone for repairing (sob!) and my courtesy car is a new corsa, its very slow, I can't wait to get my mini back! I can't zoom around in this slug! Although I must admit it was handy when we went food shopping on Sunday, we actually fitted all our shopping in the boot. It's a miracle! Usually most of the shopping has to go on the back seat, it's a pain to say the least.

I seem to have been very busy lately but I can't tell you doing what. This is a sign my health must be quite good at the moment, I'm just busy having a life! I went to the pub with my friends on Wednesday night and I went swimming on Thursday, been taking Alfie on walks, went to the cinema on Friday with Pete to see Inception which was a very good film. Then went out on Saturday night into town which was a good night. Had abit of a problem walking between the bars as it was uphill, but I survived! We usually just go to one bar, but went into town earlier this time so went to a few. I will not be doing that in winter though, I do not like hacking my guts up thank you very much!

I got in at about 2am and ate my subway sandwich in the living room, the reason I do this is that everytime I go out I forget to take some nutrizym with me and suffer the next day, so now I save my sandwich and eat it when I get home. I then did my tobi nebuliser which I was debated whether to do whilst eating my sandwich, seriously I had a full on debate in my head about the pros and cons of doing my tobi nebuliser.

The pros were - I wouldn't feel guilty for missing a dose, its good not to miss a dose, I could brag on my blog about how compliant I am, it means I can put off having to brush my teeth, wash my face etc for another 10 minutes. The cons - Its going to take forever because I'm drunk and can't breathe in for long periods of time when I drunk, it's going to be forever until I get to bed because I need to brush my teeth and wash my face etc yet and I'm SO tired, it might make me sick, does it really matter if I miss one dose?!

So there we go that's what I thought whilst eating my sandwich, along with 'yum this sandwich was worth the wait!' and 'I wish Alfie and Murphy would stop looking at me like that to try get some of my sandwich!' and 'these shoes that were supposed to be comfy were SO not comfy, my feet hurt'.

Last week I ran out of my nutrizym 10 tablets which was very silly of me. I was having my breakfast and my pot was empty so went to my cupboard and the cupboard was bare!! Luckily I had a small supply in my bag (I have a little tablet holder I take around with me) but that was it! I rang my local chemist, they are the best chemist ever, they are so helpful and have more than once given me the correct tablets when the GP has written me for the wrong ones. Luckily they had a pot of Nutrizym in stock, which was very lucky indeed, it's not a commonly used tablet as you can imagine and they usually have to order them in for me. They agreed to lend me a pot until I got a prescription from my GP's, which takes 2 working days. Panic over! I swear if I couldn't get any, I would have just not eaten until I got some. The pain I would have endured for eating and not digesting my food would have not been worth it! Oh and the smells coming from the bathroom would have had Pete begging me to stop eating! haha!

My Female Crushes

I'm really hating the way I look at the moment, I don't know why really. I suppose it's because I have put abit of weight on and my hair seems to be thinning and not looking as curly and big as normal, plus my skin seems to be blotchy and I've had a few spots on my face. I'm thinking about changing my hair colour to give my hair a break from the bleach, but the problem is that I hate having brown hair, I think I look boring and it fades so quickly and goes dull. I thought about having it a reddy/brown but my mum says it will make me look even more pale. It sucks having pale skin! It's weird because all the women I wish I looked like and think are gorgeous have brown hair, my favourite lady of all time is Rachel McAdams. I think she is so beautiful and she has the most cutest smile ever, that's a fact! I just love her in the film The Notebook, that's one of the only films I have ever watched and thought it was better than the book, and it's because of her!

I also love Natalie Portman, although not as much as Rachel because Natalie Portman played Anne Boleyn very badly in the film the Other Boleyn Girl, think it was more of a bad script though. She is still totally gorgeous, what a bitch!

So those are my two favourite ladies and as you can see, brunettes! Ladies, who are your favourite ladies? I love knowing!

Reflections

I've had a very busy week, in fact I haven't even unpacked my suitcase yet which is so unlike me!

On Monday I ordered my new car, I've gone for the new Astra, pertol SRI in the colour waterworld which is a darkish blue colour. Not very interesting compared to yellow which is what I currently have, but it appears vauxhall don't like doing fun colours!

I also had to ring my insurance company because my numpty husband reversed the mini into the McDonalds drive through window on Saturday night/Sunday morning when we got back from our holiday! There was no damage to McDonalds but I can't say the same for my car! The car is still drivable but all the back right side of the car is mashed in and the light is smashed, the light is still working though. It's not even funny really, we have rear parking sensors for goodness sake! Luckily the excess is alot lower now we are 25 but it means I won't get my £200 bonus when I return the car (if you don't claim on your insurance and the car isn't damaged they reward you). Can't complain though as at least I don't have to worry about my insurance going up etc and when they collect my car next Wednesday I will get a courtesy car, I don't like driving around with a bump in my car and people thinking I'm a bad driver, it wasn't me!...!

On Monday the lady from Scope where I volunteer came around to see me as I had agreed to help them interview for two posts for a new project commencing in the Halifax area, basically doing what our project does now. The interviews were on Tuesday and Wednesday and she just wanted to show me the questions, explain what would happen etc. It was quite fun interviewing people, there are some weird people out there who have some very strange opinions on disability. One thing which surprised me was how many people think disabled people think the barriers they face are taught to them and actually more in their head than actually existing and apart from physical barriers such as there not being a ramp, they didn't have a clue of other types of barriers. One comment which we all couldn't believe and actually had me in a fit of laughter and coughing fit ,(afterwards of course, we all kept very serious during the interview) was clearly disciminatory against wheelchair users, which is a great way to come across if you are applying for a job to work for a charity that believes in equality...!

The two days tired me out completely, we got takeaway on Wednesday night as I was too tired to cook and Pete didn't get home till late. I got quite upset actually because A) I was very tired and B) I had been interviewing people for a job I would actually quite like to do myself and was so angry it was clear I'd never be able to do it as I was exhausted from just interviewing for the job. This set me in very bad mood the next day when I was helping out at my mums barber shop which I wish I hadn't had to do as I was so tired. Plus I was majorly pissed off I have somehow ended up cutting people's hair which is not really what I had in mind as a career path years ago and it's not really my passion. Luckily the shop was quiet which is what I had counted on and I spent alot of the day reading my book. The past few days have just made me feel deflated, I've had an insight into what I could do if my health was better and an insight into what I actually do. I usually accept that this is my life now and the most of the time I am happy with it, loads of people end up doing things differently to what they thought and I am not miserable how my life has turned out. I know I am very lucky my mum owns a business that means I can just help out a few hours a week and it's pretty easy going when it's not busy, however sometimes I still wish I did have another life, well not another life as I quite like my life in general, just a better body!

Today I am just resting, I'm so tired I'm just going to take it easy. I have a few things I need to do like unpack my suitcase (finally!) and I haven't been to the gym yet this week as I have been far too tired so I might try go swimming later but somehow I doubt I will! In a way this week has been good for me too, I have been so tired from my busy days I have really struggled to force myself to do my physio/nebs and like I say I haven't been to the gym. So in a way it has also reminded me why I did give up work. I couldn't do this every week. Poor Pete has put up with my little physio tantrums 'I'm not doing it!' 'I'm sick of doing physio, it's all I ever do!' seriously, I'm like a little kid when I'm tired! So in a way this week has helped me reflect on a few things, good and bad.

Bonjour!

I'm back!

Incase you haven't realised, I have been on my holiday!

Health is good, mamanged to be 100% compliant with all my treatment, here is a picture for evidence. Wasn't easy as it meant I had to leave the side of the pool earlier to get physio done and get to pool later in the morning to get physio done! But needs must, I didn't want to come back feeling rubbish!

We stayed in a gorgeous villa in kind of the middle of nowhere! It was about 2 hours from Bordeaux which is where we flew to. There wasn't much to do apart from relax, not many restaurants, places to visit etc but it was great for a week to just get away and chill out. We went with Petes parents, his sister, her partner and their little boy and Petes other sister. Here are some pictures, enjoy!