A decent picture at last!

So I've finally got my act together and can post this lovely picture of Polly and Will wearing my creations (Polly's Dress and Shrug and Will's Waistcoat). I love Polly's Blue shrug one of my favorite things I've made. This photo was taken upstairs at the Reform Club on Pall Mall , hence the very posh surroundings :-)

Ariodante

So here are a couple of my wobbly photos of CHOG's production of Ariodante. Blogger is being a pain and only letting me upload a couple but there are some more on my Piacassa web albums thing-which is here-http://picasaweb.google.com/musoros/Ariodante#
I particularly like this one of the king in his fantastic Dracula-esque wig!

Overdue update...

So ok I have not blogged in ages (as several people have pointed out!) but to be fair my life for the past few months had resolved itself into a fairly boring mixture of work and clinical exhaustion, that was not really worth writing that much about. The doctors still have worked out exactly why I am so tired all the time, but I'm now on Insulin and having Iron infusions in an attempt to improve this. However, I've been having both for over a month now and have not noticed any marked improvement-marvellous...

Some of the only bright spots in the past six months or so, were the three lovely wedding dresses that I have made over this summer (sometimes working at the sewing machine whist staying in the CF Unit you can't say that's not dedication!). The first was for the lovely Rachel James a friend of my lovely mate Fran, for whom I made this rather sophisticated gown and veil. I particularly liked the long train and the swarovski crystals on the veil! But then again I love anything sparkly...

I nearly missed the lovely Kate and Colin's wedding due to another stupid bleed which landed me in hospital and on IV's. But thanks to my lovely parents ferrying me about, I managed to make the ceremony and dinner in between doses and sleeping! Kate's dress used some of the best and most complex embroidery that I've ever done, although it was rather stressful!

Finally came Polly and Will's wedding, for which I made Polly's dress and Will's waistcoat. Unfortunately I missed the actual ceremony as whilst I was on the train down to London someone threw themselves in front of the trainin front of mine causing the line to be closed and several hours of delay. I did eventually get into London for the wedding breakfast and reception. This was at the Reform Club in Pall Mall which was sooooo posh! I've not really got any good photos from this yet as I forgot my camera but am hoping to nab a few of the official ones. Polly's dress was gorgeous and the blue shrug was such a great idea.

Embolization

So having had all those bleeds the Doctors recommended that I have them sorted out permanently by getting them embolized. Now I have to say I was not that keen on this, as it sounded a truly horrible experience. Basically what they do is insert a set of wires into an artery in the groin, work these around your body to the abnormal bronchial arteries that have been bleeding and plug them up with small coils, sort or angioplasty for your lungs. To be honest I was totally scared about this thinking that the coils might float off and enter my blood stream, or that I would get DVT or something ghastly, because having foreign bodies in your lungs does not sound like fun! Luckily my lovely Doctors calmed my down and the lovely Dr Appleton that did the procedure explained how safe this procedure is and that recovery was very quick, so I finally bit the bullet and agreed (that and the idea that my lungs might bleed again and not stop clinched the whole thing!)

On Wednesday I went back to Papworth and on Thursday morning I was off to the radiotherapy suite and away we went. I was quite impressed by the number of radiographers and nurses I had, 6 including Dr Appleton, made me feel much better. Getting the wires into my artery was luckily not as painful as I thought it would be, although it was a very odd feeling. The worse part was the dye they use to highlight the abnormal arteries that have been bleeding as its the same stuff they use in a CT and it makes you feel just weird and hot. Dr Appleton talked me through the whole thing and afterwards showed me some of the pictures they had taken and in a strange way they were really beautiful, the shapes of your bronchial arteries are like a trees branches in winter- how poetic! You can't really feel the wires and coils in your chest as pain, but you are aware that there is something going on which is not a pleasant sensation but is not as bad as I thought it would be! To block off about four abnormal arteries took about forty minutes, although it felt a lot longer! The most boring bit was having to stay flat for 4 hours afterwards to reduce the risk any clots happening at the wound site in the artery, but once that was done I was back up and home by Thursday evening. All in all not a fun experience that I would recommend as a holiday entertainment, but really not too awful either.

Well that was weird...

So yes I have been overdoing it recently and the result has been a couple of nasty bleeds from my lungs-not much fun at all. So to make sure that they have stopped bleeding and that there is not some underlying reason for these bleeds that is not due to my CF, Dr Howarth sent me for a lung CT scan. Now I've had CT's before of my sinuses, but never one that involved using a dye. I turn up not realising that I would have to have dye injected into me so had not told the CT people about my crappy veins... The day before it had a taken a couple of attempts to get a long line into my arm vein and so one elbow has the line in it and the other is a swollen, inflammed lump of soreness from where we failed to get the line in and hit tissue instead- and no one was going anywhere near that with any more needles! Luckily the wonderful CT doctor got a venflon (tiny little mini iv line) into one of the veins on my wrist so more trauma and bruises were averted.

Now, to have a lung CT you have to lie on your back with your hands above your head in the CT machine (which is rather like an enourmous ring donut) with your line connected up to a remote infusion pump that will fill you full of dye when the CT machine is ready-a really odd way to spend 20 minutes! Whilst this is going on the CT doctor is next door to avoid getting irradiated chatting to you through the speaker. The weirdest part tho has got to be when they actually inject you with the full shot of the dye. Apparently the dye is iodine based as this stands out as bright white on the X rays and its side effects are really odd. First you can feel it travel down your arm into your body, which is weird enough, then you suddenly have a massive hot flush and feel convinced that you've just been lowered into a large bath of warm water-I am not joking! I could have sworn that I had just been dropped hot water except I clearly had not! Then to finish things off you get this very strong metallic taste of tin. Now I have not idea what tin does taste like but that's just what my brain identified this taste as.... All in all a really odd way to spend a morning.

Just disgusted!

I may not be a huge David Beckham fan but now I really think the guy is a selfish, childish idiot! He was scheduled to host a Charity Gala Dinner in aid of the Cf Trust at the Dorchester and pulled out at the last minute (literally there were only two hours before the dinner started!) with no proper explanation. He was probably in a strop beacuse he was not selected for the England team. According to his agent he was ordered back to LA by his football team for fitness tests- could he not delay for one night? Its not like he can't afford the plane ticket. Also if he knew it was a possibility that he would have fitness tests at this time why did he agree to the event in the first place- its all rather too coincidental. What makes it even sadder is that Theirry Henry who organised this event asked him to be his substitue as he knew he would not be able to host the event, and he was saying how great it was that Beckham had agreed to be his sub and what a fantastic guy he is- all rather hollow now.

Apparently a freind of Beckham is quoted as saying "David is beyond gutted. All he wanted was to play and get a 100th England cap.” Well quite frankly big deal! It is not like he is never going to play football again, or that he might not get reselected and it certainly is not the end of the world as football is just a game (whatever anyone says!). Just because he does not get what he wants at this point in time he goes off in a huff back to LA leaving the CF Trust and Thierry Henry's event in the lurch. Its bad enough that he left a charity it a difficult position but letting down your freinds like that is unnacceptable. He should be ashamed!

Here's the newspapers reactions-
http://www.timesonline.co.uk/tol/sport/football/article3285965.ece
http://www.thesun.co.uk/sol/homepage/news/article750258.ece
http://www.dailymail.co.uk/pages/live/articles/showbiz/showbiznews.html?in_article_id=511569&in_page_id=1773

And yes, before anyone points out that the main reason I am annoyed is cos its The CF Trust and that he does loads of charity work, I would like to say that I would be righteously indignant which ever charity it was. When someone as fortunate as Beckham-and lets face it he has pretty much everything anyone could want and a stupid amount of money for just playing a game, lets people down like that it just shows how selfish he is and sets a really bad example to all his fans. He should realise just how lucky he is and be grateful that he is in a position to help charities and not be one of the people who need the help.

Where have I been???

I've not posted in years, this is mostly because my life has been taken over by facebook.... sad but true! It has to be one of the most addictive things ever and in some ways it is marvelous, for example I have found some really old friends from school who I'd lots contact with-hurray! Unfortunately it is just a device to waste time and procrastinate with, which I am pretty damn good at to begin with, so this just makes it worse! I have now rationed myself to one session a day in the evening..... or at least I am trying to!

The last couple of months have also been rather crap as well and did not really feel like posting much. To start with my Uncle had to have heart surgery, then my wonder full Nanna passed away, I was ill and had to have IV's (not to mention having a coughing fit of such volcanic proportions that I ripped all the muscles off my ribs on the left side), and then my mum was diagnosed with Breast Cancer. Talk about misfortune not going in threes, but rather by the shed load! Mum has since had the cancer removed and once she's had radiotherapy she should have the all clear, but honestly we really deserve a holiday at my house. And that's before we even think about Christmas......

Spring has Sprung!

I do love this time of year and heres a few reasons why-

Ok so this last one is not that pretty, but I don't care it's such an amazing fungus!

So annoying!!!

This has got to be the most annoying thing that has happened to me in ages. I was on my way to London this morning to do some shopping for the opera I am currently working on, when this guy gets on at Harlow talking on his mobile. Now ok, that's not that bad. What was so utterly infuriating was that he was using the speaker phone to talk to the other guy, and had his ipod on really loudly at the same time! So not only did I get him talking really loudly, I got the rest of the conversation on the speaker phone and a thumping bass line from the ipod....What was this guy thinking???? That the whole carriage want to know all about his social life, and his girlfriend-way too much info thanks! If he had not been so big and scary looking I might have asked him to turn at least one of them off, but I did not have the nerve... I know that's silly and I'm stereotyping him by the fact that he was big, and had a hoodie and shades, but better safe than hospitalized.

Fainting Goats!

So I found this through facebook and it nearly killed me! Don't ask me why goats that faint are quite so funny they just are; heres the link- enjoy!
http://www.youtube.com/watch?v=xuqtnpY4zuY

Darwin Awards

My lovely friend Helen sent me these, and I had to post them as I nearly expired with laughter!

2006 Darwin Awards

Yes, it's again that magical time of the year when the Darwin Awards are bestowed, honoring the least evolved among us. Here is the glorious Winner:

1. When his 38-caliber revolver failed to fire at his intended victim during a hold-up in Long Beach, California , would-be robber James Elliot did something that can only inspire wonder. He peered down the barrel and tried the trigger again. This time it worked.

And now, the Honorable Mentions:

2. The chef at a hotel in Switzerland lost a finger in a meat-cutting machine and submitted a claim to his insurance company. The company, expecting negligence, sent out one of its men to have a look for himself. He tried the machine and he also lost a finger. The chef's claim was approved.

3. A man who shoveled snow for an hour to clear a space for his car during a blizzard in Chicago returned with his vehicle to find a woman had taken the space. Understandably, he shot her.

4. After stopping for drinks at an illegal bar, a Zimbabwean bus driver found that the 20 mental patients he was supposed to be transporting from Harare to Bulawayo had escaped. Not wanting to admit his incompetence, the driver went to a nearby bus stop and offered everyone waiting there a free ride. He then delivered the passengers to the mental hospital, telling the staff that the patients were very excitable and prone to bizarre fantasies. The deception wasn't discovered for 3 days.

5. An American teenager was in the hospital recovering from serious head wounds received from an oncoming train. hen asked how he received the injuries, the lad told police that he was simply trying to see how close he could get his head to a moving train before he was hit.

6. A man walked into a Louisiana Circle-K, put a $20 bill on the counter, and asked for change. When the clerk opened the cash drawer,the man pulled a gun and asked for all the cash in the register, which the clerk promptly provided. The man took the cash from the clerk and fled, leaving the $20 bill on the counter. The total amount of cash he got from the drawer: $15. (If someone points a gun at you and gives you money, is a crime committed?)

7. Seems an Arkansas guy wanted some beer pretty badly. He decided that he'd just throw a cinder block through a liquor store window, grab some booze, and run. So he lifted the cinder block and heaved it over his head at the window. The cinder block bounced back and hit the would-be thief on the head, knocking him unconscious. The liquor store window was made of Plexiglas. The whole event was caught on videotape.

8. As a female shopper exited a New York convenience store, a man grabbed her purse and ran. The clerk called 911 immediately, and the woman was able to give them a detailed description of the snatcher. Within minutes, the police apprehended the snatcher. They put him in the car and drove back to the store. The thief was then taken out of the car and told to stand there for a positive ID. To which he replied, "Yes, officer, that's her. That's the lady I stole the purse from."

9. The Ann Arbor News crime column reported that a man walked into a Burger King in Ypsilanti , Michigan , at 5 a.m. , flashed a gun, and demanded cash. The clerk turned him down because he said he couldn't open the cash register without a food order. When the man ordered onion rings, the clerk said they weren't available for breakfast. The man, frustrated, walked away.

******A 5-STAR STUPIDITY AWARD WINNER*****
10. When a man attempted to siphon gasoline from a motor home parked on a Seattle Street, he got much more than he bargained for. Police arrived at the scene to find a very sick man curled up next to a motor home near spilled sewage. A police spokesman said that the man admitted to trying to steal gasoline and plugged his siphon hose into the motor home's sewage tank by mistake. The owner of the vehicle declined to press charges, saying that it was the best laugh he'd ever had.

Its official.....

.....I am diabetic-bugger. I have it on the authority of Dr Adler the specialist Diabetic Consultant who also covers the CF Clinic. I am not type 1 or type 2 but instead I am a PWCFRD or person-with-Cystic-Fibrosis-related-diabetes. At last I have achieved my ambition of becoming an acronym! This does all suck rather spectacularly, but I am not on insulin yet, which is good. Also good is that fact that I now get all my drugs free- don't ask me why diabetics get free medication and PWCF don't, I have no idea and will probably start off on another rant! So I shall be monitoring my sugar levels and trying to adjust my diet from quick release high sugar foods, to slow release high sugar foods. Its all rather complicated as I need lots of calories to keep my weight up for the CF, so I can't switch to low fat foods which is one option for people with non cf related diabetes. But I now also need to stop having sugar levels that seesaw between very low and very high, which may result in nasty things like feeling really horrible and then hypo or hyper glycemeia. I am not yet sure what this means exactly for what I eat, but no one is making me give up chocolate!

2007 so far....

Well, another festive period and New Year has passed, and I am happy to say I did not spend all of my time reminiscing about this time last year, or sulking about being single, just a little bit:-)As usual I ate too much and was totally exhausted by the two under-fives of the family tearing around on massive sugar highs.

We all went up to Aberdeen last weekend for the wedding of my honorary Aunt Judith, which was lovely. She has been friends with my mum since they were both fie years old (altogether now- ahhhhh!) and got married for the first time at the age of 62, thereby showing all the rest of us that it really is never too late-hurrah. The service was very high church and I did feel rather like a fish out of water, not knowing all the correct responses or any of the hymns, which were rather obscure. The meal afterwards tho was truly amazing! Both Judith and her new husband Crawford appreciate the finer things of life and the meal was just gorgeous. If you are ever i Aberdeen go to the Marcliffe hotel for dinner as they even made me like the haggis-it was that good ;-)

My overwhelming impression of Aberdeen itself was grey: grey buildings, grey weather, grey sea. Although I've got to say that all the people I met, both at the wedding and working at the hotel and places we went were all really nice, and considering the weather remarkably cheery and chirpy. The only problem was the bloody train journey home. The train from Aberdeen to Peterborough got stuck twice at either signal failure or safety checks and we were an hour late into Peterborough, which meant we missed our connection. The train we got on instead was the only Stansted Express of the whole day which did not stop at Audley End (why??? why?? Not even the guard knew) and so we had to hop off at Cambridge, leg it down the platform and jump on another train that did finally get us home, 2 and a half hours late.... I just love public transport!

So, so far 2007 has been pretty good, although it will probably go completely down hill on Wednesday when I have the dubious pleasure of going to the combined Cystic Fibrosis and Diabetes clinic, so that the Diabetic consultant can take a look at me and decide that I'm now diabetic too. I have been expecting it, as it happens to about 7o% of PWCF (people with CF) of my age and is increasingly likely as you get older. It just sucks, as I'll probably have to start injecting insulin and I am now going to be officially cystic, asthmatic and diabetic. Maybe I should also try and become geriatric, lunatic and romantic, and anything else I can think of ending in 'ic'. Suggestions on a postcard...

Please Sponsor Me!

I am organising and taking part in the Cambridge Lindy Hopathon. It's a sponsored eight hour dance marathon, from 4pm til midnight on Saturday 17th March 2007. I won't be dancing for the whole time, otherwise my lungs will object... but I am going to do the first and last hours. So if you would like to sponsor me, and you know you do, then you can either fill in the form I'll be carrying around with me or go to www.justgiving.com/lindyhopathon and pledge lots of money! For more information about the Hopathon go to to blog I have set up for the event (theres a link on my list)

Happy Christmas!

Thought for the day....

A Christmas Poem, by Wendy Cope

At Christmas little children sing and merry bells jingle,
The cold winter air makes our hands and faces tingle
And happy families go to church and cheerily they mingle
And the business is unbelievably dreadful, if you're bloody single.

I wanted to change the last line to 'if you are still in love with your ex' but it doesn't really scan!

Ros's Soap Box

I apologise in advance as this is me jumping up and down on my soapbox again and ranting very loudly.....

Well yet again I am stunned by new proposals for the NHS, but surely this time they have reached the absolute limit of total human goofiness. The plans are for Doctors and local health centres to survey their patients and then those with a 'sedentary lifestyle' will be given free dance leassons or other activities! There will be no extra money allocated for these classes, they will be funded by the already over stretched NHS trust budgets. I really think that whoever's idea this is must be totally mad, and for once I agree with Ann Widicombe who calls this scheme 'ludicrous'. The idea that people are being given free dance lessons whilst people suffering from Cancer or Alzheimers are being denied life saving drugs because of the cost is quite frankly disgusting. This implies that obesity and unhealthy lifestyles have the same importance in the NHS as genuine illness and injury. Everyone is free to choose what they eat and how they live and I do not see why the genuinely ill should have to loose out on drugs and services to pay for dance lessons for people who are not ill, but who have an unhealhty lifestyle that they are unwilling to change.

If people need to take excercise they are free to do so, and should be encouraged to. They could simply go for a brisk walk everyday which is free and would not cost anyone anything, or they could be refered to a dietician and physio to recomend changes to their diet and lifestyle that would be better for their health. But the idea that the NHS is responsible for keeping people fit and paying for them to have the privlege, is ludicrous. I will not be recieving free dance lessons of seeing a personal trainer, I pay for my own dance lessons and my drug prescriptions myself thank you! I could easily argue that as I have CF I need these activities to help my lung capactiy. Not wishing to sound mean, but if I don't qualify for these freebies why should these other people, who as far as I can see are just lazy and do not eat properly or excercise enough be getting handouts at the NHS's expense???

The NHS is there to care for the sick and injured not to baby sit the country's lifestyle. It is already overstretched to the point of collapse, and they are closing wards, whole hospitals and nurses and doctors and essential staff are being laid off. Surely the NHS have better things to spend their limited money on than dance lessons for lazy people??? It is about time the government stopped trying to nanny us all, and stopped trying to run the NHS like it was a business to make money, and let it get back to its main function, that of caring for its patients. I am now going to go and write a leter to my MP, please do the same as the NHS will completely collapse and many ill people will suffer if this sort of idiotic idea is allowed to continue.

Please sign a petition!

Well once again the government wants to tax us even more and restrict our civil liberties at the same time. This time they want to tax Road mileage and 'Drivers could pay up to £1.34 a mile in "pay-as-you go" road charges under new government plans'(BBC News). Not only that but every car would have a satelite tracker that would record all your journeys, Big Brother is now watching your car!

Whilst I have no objection to Congestion Charging or even tolls on motorways this new idea will once again have no effect on the richer end of the population or major city dwellers, who can afford this charge or can just take public transport, but will be a total disaster for people in small towns and rural areas and those of a lower income. Where I live public transport is simply not an option if you want to go anywhere but London (and even then there is only one train an hour and it costs nearly £20). If you need to go and food shop the bus is not an option, as they are so infrequent and unreliable, and totally unsuitable for disabled people. If you do not have a car in rural areas you would be completely cut off, and taxing every mile you travel will make it impossible to own a car considering just how expensive petrol already is. By all menas encourage people to use cars less, especially where public transport is an option, but not in a way that penalises rural areas and has little affect in cities (again).

To try and stop this happening please sign the petition here-
http://petitions.pm.gov.uk/traveltax

We should try and reduce congestion and carbon emissions, but in a sensible and fair way. How about increasing tax on gas guzzlers? Motor way tolls work in Europe why can't we manage it? How about reducing food miles? And what about Air travel? It makes no sense that I can travel to Europe for less than £10 and can't get to London for that!!!!

Congratulations to Kate!

I just wanted to send huge congratulations to Kate Harvey who has raised well over £1000 for The CF Trust by completing The Great North and The Great South Run! A totally amazing achievement in itself and also raising a fabulous amount of money that will be used to help find a cure for this horrible disease. As someone with CF I just want to say a huge THANK YOU!!!!! You are fantastic!

The Jive Aces at Duxford

The fabulous Jive Aces appeared at the new Airspace superhanger at Duxford Imperial War Museum last night and they were brilliant! They are the best swing band out there, and they always give a fab performance. Despite the ticketing fiasco and the awful weather there were lots of lindy hoppers there and we hopped the night away (although there was a pause in the middle to have a few local bands play who were surprisingly good). The hanger is a fantastic place and it was a shame there was not more lighting on the planes and a bigger dance floor. I managed a couple of dances and a few strolls so I was pretty pleased with myself. I took lots of pictures but its not easy getting pictures of people in motion so here are a few of the better ones and some of the Jive Aces!














Paul and Fae zooming past, with Dan, Kathrine and Lotte in the background.

Somewhat randomly they had an origami exhibiton going and we all made some swans. The professionals had made some amazing paper culptures, but my total favorite was Yoda! How cool is that!?

Newquay,Land's End, John O'Groats and all the way back!

One of my friend's from the CF forums is organising a charity VW rally from Newquay to Land's End then to John O'Groats then back again next summer. It's all in aid of charity, one of which is the CF Trust and he's looking for people to take part and for sponsorship. He's set up a website

http://www.dubkings.co.uk/

so please take a look, tell your friends, maybe donate, maybe even take part! It looks like real fun, I may even try and find myself an old (ie cheap!) old VW and take some of my mates for one hell of a roadtrip!