Munchausen by Internet

It is a sad day today in the American CF community, and the CF community as a whole. There has been a blog running about a girl called Pepe who supposedly had CF and went through a transplant, the person has been exposed as a fake, or probably more acurately someone suffering from Munchausen by Internet.

I was not an avid reader of the blog, I don't know why but I just never got around to checking it regularly, however it did have quite an audience of people who were hoping and praying for Pepe and who were utterly emotionally, and in some cases financially, involved in the story.

It has annoyed and upset me, despite my lack of personal involvement, on principle. Although I wasn't involved in her story there have been others who's story I have become involved with such as Emily's and Oli's, I can't imagine how utterly betrayed I would have felt had either of their blogs turned out to be hoaxes. There have been some very low points in the last few years where literally the only thing that has got me through to the end of the day has been a little voice in my head saying 'If Emily and Oli could do this, worse than this, then you can too!'.

It is a disgusting manipulation of the emotions and trust of the CF and transplant community, a community that is made of vulnerable people.

Almost more scary however has been the way sections of the community has reacted, someone has set up a blog literally, and very successfully, stalking this person and every website they have ever contributed to, many have made violent threats. I understand the anger, but at the same time it is just the internet, you can just never truly know unless you KNOW that person in real life, it never ceases to amaze me how het up people can get over someone they don't know!

It has served as a reminder to me just exactly what the internet is made up of. I am always telling friends off for posting details that link them to a specific place or taking part in those stupid 'what's your porn name' things that are just designed to get personal information out of you. Even today I have been sat here thinking back over all my posts and trying to work out if at any point I've given too much information away about where we live and what are lives are like.

I guess that is the problem with a blog, you want people to see it and read about you, but at the same time you don't really want people to know anything too personal. My friend Adam and I actually discussed my blog and he commented on how different it is in style to my old one which was much more emotional and detailed. I admit that even I at times look at this blog with a certain level of dislike, it's a very 'happy clappy this is what I did today' kind of affair, there is very little in depth analysis of how I actually feel and what I think about things, but then I think I have become more aware of my potential audience

This a totally public forum after all, any future employer or client of mine could read it and I'm not sure I really want them to know all the dark emotional wrangling that goes on in my little mind, nor do people I know read this really want to know the gory details of what Luke and I do with chocolate buttons of a nighttime ;o)

I don't want to be at risk, I don't want my family to be at risk, yet at the same time I like having a blog, I even stated it as one of my hobbys on my birthclub, and heaven knows I have few hobbys as they are hard things to maintain when you are unwell and have no energy all the time. I guess you just have to be careful.

I find it amazing how involved strangers do become (and I write this like I'm not one of them haha!) but when you read these blogs you really do begin to feel like you KNOW the people involved and begin to share their hopes and ambitions with them, and cry and worry at their troubles. On some levels it scares me, and on other levels I think it is actually the true power of blogging, the way it gives people a platform to speak and an audience to listen, an audience to care, I think it brings out the best of the human spirit, and demonstrates far better than any myspacefacebook can what true social networking is about, it's not some empty list of 'friends' it is about connecting, and about caring, you give up something of yourself and in return you get something back.


So back to normal happy clappy scheduling we go...

Thursday - was a day of rest, I laid about the house and did nothing but snuggle with my boys adn watch DVD's in order to recover from the excitement caused by the mices and ballerinas.

I watched 'The Last King of Scotland' it is VERY good, though very sad as basically it's happening all over again as we speak in Zimbabwae and yet again to my shame it is us English who had a major hand in putting a madman in charge.

However I am also angry with the people of Africa as I whole, why don't they get their shit together and sort themselves out?? They could be a rich nation they have lots of valuable natural resources and a lot of manpower, if they just stopped bickering and squandering it all on corruption and guns and stopped shilly-shallying about waiting for someone else to sort it out they would all be a lot better off!! That said if I had a bunch of guys in a jeep with massive guns riding through my village shooting and raping everything in site I don't suppose I would be that keen to make a stand and make a change either. Sad world.

I thought the most clever thing about the whole film however was how little it showed of the ongoing genocide, despite the fact the characters were right at the centre of it. It demonstrated exactly how these atrocities happen and continue to happen, because those who could do something choose to bury their heads in the sand because they personally have something to gain from doing so.

And if all that heavy political stuff doesn't do it for you it also has lots of shots of James MacAvoy's bottom in it :o)

Friday - I meant to take Edward swimming but his skin was so bad I thought it unwise as I didn't want to aggravate it. So I spent the morning supervising Edward's nappy-free time whilst watching 'No Country For Old Men'. It was a good film, though I think it thought it was more intelligent than it actually was, I felt the serial killer was a silly character who spoilt the film and they just used him as a device to say certain things, but as he was so melodramatic and cliché they'd have been better off leaving him out, Tommy Lee Jones however was utterly fantastic.

I then took that and the other DVD as well as some books back to the library as they were only on short loan. I left Edward in his daddy's capable hands as I couldn't be bothered with heaving him on and off the bus!

I wandered back slowly via some shops where I got some nice candle/sauce dishes and then the pharmacy. Luke cooked us dinner we had tasty chicken kari...he's branching out :o)

Saturday - I had a lovely long sleep from 11pm last night till 8.30 this morning!! It was truly blissful :o) I think the sleepies must have stayed with me as I really haven't done much all day expect faff about on-line. I planned to go and get maple syrup so I could do American pancakes which I have been craving lately but in the end lazed out and just made Luke a plain bacon sandwich.

In the afternoon/evening I made roast beef, Edward particularly liked the Yorkshire puddings :o)

After Luke finishes raiding with his WHOLE guild (very exciting stuff I can tell you!) we are going to watch some more Trigun which is turning out to be rather good, it really makes me want to roleplay though as the structure of the episodes feels so much like an RPG plot, it really makes me laugh as alot of the time the animation of the lead character is naff......but whenever he is saying something profound or trying to chat up a girl they sex him up manga styleeee!!

Shopping and Pie

It's been a rather busy couple of days here at the ranch.

Yesterday I went off in search of flexible ice-cube trays for putting puree in as it is not proving practical using pots as I don't have enough of them nor a big enough freezer to be able to do the kind of variety I want. I also decided that I wanted to get some individual pie bowls as I thought my steak and ale pie would work better if it was made in a bowl rather than being just meat on a plate with a piece of pastry placed on-top.

I headed out to Oxford St. and left Edward behind as it's easier without him. I went in a few shops comparing prices and availability before getting the ice cube trays from House of Frasier and then a rolling pin, potato masher and pie-bowls from John Lewis where I was helped by a rather crazy shop assistant who spent about fifteen minutes telling me all about her Swarovski Crystal animal collection... quite how she managed to get from 'Where are the ice-cube trays?' to that remains beyond me!


I then headed home via la supermarche where I got the ingredients though I had to phone Luke and get him to come and carry it home as it was too heavy as I bought lots of heavy vegetables!

When I got in I started the cooking as Steak and Ale pie has to cook for hours in order to be any good, it was quite exciting as this time not only did I have my fantastic new bowls but I was also using a new type of ale, specifically BADGER Ale!!!


Anyone who knows me knows I have something of a mild on-running love of badgers, I think it began with my Sylvania's and was cemented during the days I played a character called Gem who owned a war badger rather fittingly called Baddie who in one particular fight managed to kill a guard single handedly by biting him in the nuts!

Not long into the cooking Aaron arrived, followed a while later by Chris and Andy. It was lovely to see them as they haven't been over since our last pie night, personally I would have cooked something different but I was overwhelmed with demands for pie that I could not refuse.

We had actually been trying to arrange this dinner for a while but given a variety of factors we kept having to cancel until it got to the point that Andy was having 'Homer in the land of Chocolate' style dreams of pie, and Chris was becoming concerned that Andy may actually mistake him for a piece of ale dripped steak and eat him in the night!

We all sat down to eat (minus Aaron who had to go and pick up some stuff) and we ate lots and it was tasty and we had fairy cakes for puddings for which Luke made some very questionable looking icing that not too surprisingly only he and I ate. The boys all then played Call of Duty 4 together (which they had been doing before dinner too) until it was time for Chris and Andy to go home to bed as it was a school night. All in all very good fun!!

The rest of the evening wasn't so great as Edward was unwell and crying, we had to have him in the bed with us in the end and it took him a long time to settle and he woke frequently in the night. However come the morning he'd cheered up and was clearly feeling better and so I took him out with me, I also wanted to give Luke a chance to sleep as he did most of the night-care.

Today I had lots to do that involved running around town quite a bit. Firstly I had to go to the Library which is over by Paddington, I then had get my Freedom Pass done which also involved getting passport photos though thankfully there was a machine there though it cost £4.20!!

After that Edfart and I headed to Camden as I wanted to get a video I have, of a very old version of 'The Lion the Witch and The Wardrobe' that Fleur, Shellie and I used to watch as kids transferred to DVD as a wedding present for Fleur, however sadly in the month or so since I was last there the shop has closed ARGH!!! Serves me right for not being more organised and getting it done sooner, though thankfully later Luke managed to find it on Amazon hurrah!

I then headed to Oxford St. as I realised that I didn't really have a bag that I could use this weekend that is a) big enough and b) able to sling over Edward's buggy. So lots of mooching and shopping and a spot of lunch later I came home with a FANTASTIC huge zebra bag, lots of clothes for Luke some new bedding (as I'm bored of what we have) some shoes to go with my dress for the wedding and a belt...hurrah for Primark :o)

This evening has been pretty laid back, I spent a few hours making a card for Fleur as I decided it would be gorgeous to do a tree with paper leaves all individually sewn on, it is pretty, but not something that could ever go into mass production I don't think haha!

Edward started feeling unwell again late in the evening and we had some more tears and lots of snot, so I've given him lots of cuddles and milk and hope that tonight he makes it through the night in his own bed and that he feels a lot better tomorrow.

Obviously things will be quiet the next few days, but I shall return with pictures of the wedding and lots of lovely stories I'm sure :o)

Fleur-Bert!

A very old and very dear friend of mine Fleur came to visit with my sister Shellie and her boyfriend Simon. Fleur was a girl we have known since we were little and we grew up like sisters spending weeks at a time at each others houses only to finally be taken home and ending up staying at the other persons house! Sadly she moved away to Thailand and so we mostly lost touch with her as that was the dark days before the interweb and the glories of facebook.

However she has finally come home to England and is actually getting married next Friday, an event to which we are invited hurrah! She was up in London sorting out the last few bits for said wedding and arranging details with Shellie who is going to be her maid of honour ( I think!)

They arrived Thursday and we sat chatting and I showed off Edward to a very delighted Fleur, then we went out to dinner leaving Luke in the safety of the pollen free house helpfully babysitting. Fittingly enough we went to the Thai place at the end of my street and it was nice as Fleur could talk to the staff in Thai, though the waiter did a real double take when she first started speaking to him. She was quite amused by the coconut rice as in Thailand it's only really eaten as a pudding with mango, something I already knew, but I don't care it's so tasty I could eat bowls of it just on it's own :o)

The next day we all went shopping on Oxford street as Fleur wanted to get some stockings to complete her bridal outfit aswell as a dress for the next day. We had fun in Ann Summers, especially Edward who ate his breakfast there whilst giving his best flirty eyes to the manikins that he thought were real ladies...bless!

We spent hours in Monsoon and found a perfect dress for Fleur in Laura Ashley though had to get a nicer ribbon for it in John Lewis. Shellie then had to go as she had patients, but Fleur and I stayed on and had lunch in the cafe at the top of John Lewis as it has a nice view, and also rather fantastically gives out free baby food!

It was a really good fun girly day though a bit of a mad rush at the end as tragically there had been an accident on Oxford Street and it was closed and so we couldn't get a bus and had to dash all the way home and then to Paddington to put Fleur on the train home.

Just a few photos!

I know this has all got a bit behind as I've been away, I will do a catch up post but will backdate it so make sure you don't miss it.


For now I just wanted to put these pictures up of Edward and Aunty Thea as they are just so gorgeous. She is such a perfect aunty she loves her little nephew so much, in a funny way it makes me feel really proud, both of Thea for being so wonderful, and Edward for being so adorable!


The final photo is from our trip out on Saturday. We had planned to go to Liberty's as Thea had read about it on my blog, however Gay Pride was on and we couldn't cross Regents Street to get to the shop. It didn't matter in the end though as walked down watching the parade which was quite moving in places, especially hearing the cheers for all the military staff who were allowed to wear their uniforms for the first time. Initially I didn't think it was appropriate for them to wear them, but then I decided that it was actually important for them to make their statement, this country is full of all sorts of types of people, and those men and women are as much a part of our society and the forces that defend us as anyone else and it is right that they take pride in what they do especially when you consider they lay their lives on the line for people who hate what they are.

After initially not wanting to walk as far as Regent Street we ended up walking all the way to the South Bank where we had a yummy lunch in Wagamma before having ice-creams. Thea then headed home and we rushed back to ours to make sure we were back in time for the end of Dr Who. Hurray Cathrine Tate is gone, and David Tennant is still alive....all faith is restored!

Sunshine And Anime

GoAs Will was up in London we decided it would be cool to try and visit an anime shop as he's really interested in it, and they are the kind of specialist things you only tend to get in big cities. I also wanted to change my i-pod case as it didn't fit, and get the new Porcupine Tree album. So I hatched a shopping route, asked my other anime friend where the best shops were and dragged the techie boys out into the sparkly sunshine!

We got the bus to Warren Street, and began walking down to Fopp, my steroids had kicked in so I was feeling highly energetic and capable! About half way down Tottenham Court Road and before we got to the record store (which also has anime books in the basement!) we stopped at a Japanese restaurant to be in keeping with the theme of the afternoon. Luke and I had cooked dishes, and Will had sushi which looked on reflection to be an awful lot nicer than ours, though Luke and I were in agreement that ours had probably been nice a few days before when it hadn't been re-heated umpteen times.

It was pretty cool just to be sat out in the sunshine on a London street eating Japanese, it was hard to tell with Will as he's quiet, but I think it would be fair to say that both Luke and I felt pretty cosmopolitan and cool in that moment. Every so often it hits me just how awesome my life is, and that I'm living in one of the most fantastic cities in the world doing something I love, it really cannot be beaten.

We then carried on our way, and I made a b-line for the Porcupine Tree album the second I was in Fopp. We then went downstairs and I went to the till while the boys looked at the books and DVDs.

Further on up the road to the shop I got my i-pod case in. Very embarrassingly the thing had two different sized backs in the box, I just hadn't seen the second, and so it did actually fit after all! The boys had gone to Muji next door as it's one of Luke's favourite shops 'just too look in', so I went in to join them, but couldn't find them, so came back out again to find them hanging about looking dodgy on the streetz!

Onwards to Forbidden Planet, which we had discovered was the best place to go to for anime. I had very briefly looked at a map of where it was so that we knew where to head, but I then got confused as to which road it was exactly that we were supposed to take off from centre point. However given a little pootling we did find our way at which point I felt highly smug and proud of myself and all my genius navigation skills!

We spent a good long while in there ogling all the weird nerdy things. There was lots of debating as to whether we could afford the £200 for the entire of Babylon Five on DVD, or maybe the same again for all of the X-Files eventually settling on Firefly for under £20, however should Joss Weedon ever decide that he wants to make enough to fill a £200 box set I promise on my life I WILL buy it!!

Then very weirdly just as we were about to wander off and look at the comics this chap walked past, and I thought 'ooo I know him'. So I did that think of trying to look at him more, whilst not giving away the fact I was staring at him just in case it turned out I didn't know him, but hurrah I was indeed correct and it was my very darling old chum from college, Peter. So abandoning Will and Luke momentarily I minced over and gave him a truly massive cuddle!

I don't see him very often even though I talk to him all the time on MSN as we are both just a bit disorganised and shit hehe, so it was fantastic to get the opportunity to say hi face to face for the first time in about a year, and have a bit of a natter.

I then realised I really had actually lost Luke and Will and that I really ought to find them, as innocent young females must be careful not to dance about unaccompanied in a short skirt round what is effectively an over-sized comic book store for long periods of time...it is just asking for trouble!

I did indeed find my boys over by the X-men comics. We carried on mooching about, and bumped into Pete a few times. Though it was kind of odd I introduced Pete to Luke, as I figured it would be nice for them to know who I was talking about, and talking to all the time. Not sure how we got onto it but I think it was via some unfair slating of Titan A.E, but Pete told us we really should go and see Sunshine as it is very pretty, and quite good.

We then headed up to the till, and then made our way out and back towards Oxford Street, whilst doing that thing of comparing what each of us had bought. We had Firefly obviously, and Will had, surprisingly enough, got anime stuff.

We pootled into Virgin for a bit so the boys could have a look at games. I actually lost them again for a while as I got distracted by the band that were playing live in the basement, as they were pretty good, but I couldn't work out if I knew them or not. I re-found them up by the games, debating which one to get, then we headed out before we bought too much. At the door there was a sign saying that the band was Ash, which made it all suddenly make sense!

I then had to go as I was supposed to be going over to Oxford to get my bag off of Bryan, as in the mad pain-filled dash back to London a few days ago I hadn't brought it with me. I made my way down to Marble Arch to get the tube out to Oxford, but had to nip into John Lewis to do a pee, while I was there Bry called to say he was going to be working till about 8 or 9 probably later, and so that I couldn't really come that night unless I wanted to stay, which I didn't as it would have meant being away from Luke. There was a very pretty top in the shop but sadly it was about £200, I really have no idea how anyone could spend that much on something simple!

Kind of pleased that I didn't have to trek to Oxford, as I was now feeling pretty tired I headed back to home via Ann Summers who had a fantastic sale on, just perfect for cheering up poor sickly boys dying of nast evil puffy hayfever :o)

I called the boys and asked if they wanted me to pick up dinner, I nearly didn't as I just wanted to walk in and cuddle Luke and surprise him that I was still here, but I was also hungry and knew I wouldn't want to leave the house again once I'd got in. So Pizza Hut it was, where I ignored the request for just pizza and got extra garlic bread!

We then sat about eating, while Luke played on the game he'd bought. Will assembled his anime figure that he'd bought and it was pretty cool. He then joined Luke on the game.

Noting that this was the last I was going to get out of either of them for the rest of the night, and given I was quite shattered having walked so far I retired to bed.