Visiting Stoke and Birmingham with Rich and Gem - The other Gemma that is. Not talking about me in the 3rd person - not yet anyway!

Rich came down to pick me up from Stoke on Wednesday. We went back up t'North on Thursday and went to meet his mum and dad as well as Jack the lab who was adorable, even if he did try to head butt me. We went to the pub quiz and came 4th out of about 30 I think. Though I hasten to add that I think my participation was more detrimental to the score than helpful. I hardly proved an asset when I got the Artist of a songs name wrong... and I thought I was right... I was more than sure, I was definite!! Next time I'll bite my lip on the song round I think - oops! Had a really fun night. It was the first pub quiz I'd attended since uni when it was a girls vs. boys tournament. Girls won - obviously!

Then after I got up ridiculously late and felt like I'd half slept the day away (queue sense of extreme guilt) we baked some cupcakes from Gemma's Halloween party and went to Trentham to the monkey forest. They were truly awesome. I couldn't stop taking pictures of them. There was a few guides wandering round the park spouting general info about makack monkeys (not sure how you spell that) and Rich and I seemed to be the only 2 interested. I asked about breeding and stuff - probably a bit inappropriate but I like to know the facts!!

We went to Trentham shops too which had the most amazing coffee shop with hot chocolate to die for. I think that chocolate took about 5 years off my life for its sugar content alone. There was also an immense garden centre that sold everything non- garden related. Lots of Christmas decorations and general house stuff that I love. We were kind of exhausted so went back and flopped in front of the TV. Or rather I did while Rich slaved away making chicken pie, which looked awesome. Like something from a Gastro pub. It rose so much I thought it might erupt.

I am going to by-pass some other pretty major events and I'm not sure I want to recollect them otherwise they will forever tarnish Halloween in years to come. But anyone who knows me will guess it was kind of the usual story.

Had a good old rest following it anyway and got dressed up and ready for Gemma's Halloween do. Couldn't believe how much effort she'd gone to with the house. Just looked amazing, cobwebs everywhere. And most people went to quite a lot of effort with their costumes which was awesome to see. Rich has to be the winner though. He had these zombie contact lenses that were properly scary!!! He said that's why I went and got petrol early because he didn't want to walk into the petrol station with the costume and contacts in. Might have freaked a few people out haha.

Went for Frankie and Benny's the next day with Gem and Rich and had a good old chin wag. Had some laughs which I always do have with those guys and said our goodbyes. Rich drove me alllllllllllll the way back down south, such a sweetie. Will definitely get the train next time as its so far for him to drive.

PS. I didn't check this over for spelling or grammar mistakes so sorry lol, it will be done at a later date

Laura Ashley Sofa's

I bought the sofa -
Told you so. I cant help it. When I'm in love, I'm in love

Short blog about not a lot - Oh yea , some Laura Ashley sofa's

What to tell, what to tell!! I had loads stored up to blog about and as I type this none of it is coming to mind. After last weeks ongoing stress regarding the GP and all that jazz, I started to perk up and bit and decided to just suck it up and get on. I'm still having my moments where I'm getting really worked up about it but as they say 'no point worrying about things you can't change'.

Have got a few plans for the coming weeks. Am going to visit my buddy Richard next week for a few days. Quite looking forward to my little break away. Gemma, my other buddy lives not too far from there so we are going to her halloween party on the Saturday, should be a laugh. Will do some cupcake baking in preparation.

I've seen a sofa I really want in Laura Ashley and its half price so I'm trying to talk myself into buying it but finding it hard to part with that amount of money !! But it is very pretty! Next time I blog I'll probably have caved in and bought it, I'm weak when it comes to buying stuff. And to be honest I've been spoiling myself a bit too much this week. I bought a car at the weekend so I think that's quite enough spending for one week really.

Not much else to blog at the mo as I'm in a bit of a bad mood and not feeling too well so I will keep it brief. I don't want to bleat on about miserable crap.

To end on a high note, Victoria Tremlett finally got her transplant after 4 years of waiting so am delighted to hear that news. Get well soon Tor :)

What a shite few months - not apologising for swearing either

My GP has been a compete cow since I had to move to her surgery back in January. She has called me in relentlessly over mix ups with medication and I've always felt she doesnt really take me too seriously. She's always making comments like 'you're too young to be on all this medication' and 'you shouldn't be around other ill people, it will make you feel iller'. What the hell?!!? I got referred to the Brompton heart and lung hospital (probably about 10 years ago now) and they have been investigating the respiratory stuff since then. They've (until now anyway) been really good and have referred me onto some ENT people and Gastro people as they think a lot of my breathing issues are complicated by something called laryngospasm where my vocal chords slam shut and stop me breathing in and out. But my GP goes and interferes and starts telling them all she doesn't like me seeing so many Dr's or having all this medication with me being so young. Why does she mess everything up. I have cancelled my registration with this Dr since finding this out obviously and am going to move elsewhere but she has already made an impact on some of the specialists that were so close to helping me out. I thought after I had the gastro op things would start improving, even with regards to my respiratory stuff but she has qui-boshed that now. I'm so upset and angry. I just feel like doing an escape mission to a dessert island somewhere and screaming!!!!!!!!!
And why the hell shouldn't I be friends with people with similar problems? I've actually found great support in other people who go through similar crap - more so than the people who are fine and dandy. Not sure where she thinks she got her qualification in psychiatry from to be making such a judgement! Dicks!

Friends, Hospitals and Feeling Perky!

Robyn with Ralphie playing hide and seek

Me, Charlie and Amy at Jayne's place

Me and Em in Cosmos

Can't believe I forgot to mention lots of other stuff!!

Had a trip to Wales to see a uni friend Jayne. Went to Cardiff shopping which was fab and had an evening out in Swansea. Swansea nightlife wasn't really my kinda thing but it was definitely a sight to see!! We ate our body weight's in carbs I think and I was really craving some green goodness after a few days!! Unfortunately like most times I try and go away for a few days break, I got sick and ended up in hospital there on BiPAP for a few days. Was all pretty depressing as I seem to be more isolated these days. Every time I seem to go anywhere, something happens. It was good to catch up with Jayne and co though and we had a good giggle

But alas, it wasn't all bad. My old uni house mate Emma who I haven't seen for 4 years came down from North London to see me for the weekend. My friend Robyn also came and I hadn't seen her in yonks! We had such a great time. We went out to Cosmo's for more fatty treats and just giggled all weekend. It was a welcome break from all the hospitals and dramas. Actually felt quite relieved when I survived a weekend with friends without being unwell. :) Since then I've pretty much been on a high. I've felt really upbeat and positive about life. I don't know what's changed but long may it continue :)

Donors and Twitter Strangers

Last time I blogged it was about Transplant Week and I believe I posted about Kirstie and her gift of a life saving double lung transplant. I am pleased to say that against the odds Kirstie pulled through and is now back at home at her dads with her hubby and recovering well. It's so amazing to see that in a time of such great sadness for one family, another family can feel such hope. All that because someone took them time to sign up to the organ donor register.

At the same time Tor is still waiting for her chance, 4 years of waiting and 8 false alarms. This breaks my heart and I just wish there was more that could be done. Her blog is truly inspirational and extremely touching. Tor talks openly about how she is acutely aware that her time is running out. And even talks about now having to discuss where and how she wants to die if the transplant doesn't come in time.

If only we could get more people to sign the register :(

On a much less important note.....

In my own life things have been a little up and down. I've been kept busy with 4-5 hospital appointments a week. My life seems to revolve around them these days. Despite having had to go to these for years now I do believe I seem to be developing a bit of a phobia to hospitals!! As stupid as it sounds, every time I go to an appointment I feel sick and filled with dread. My respiratory appointments have resulted in an increase in my medication, new nebulisers, new antibiotics, new physio treatments and a change to my oxygen at home. None of which are particularly the positive steps forward I had hoped for.
I've also been seeing the neurophysio for a couple of months now and my walking doesn't seem to have improved. I'm starting to thing I'll be like this for life now.

On a happier note I met a couple of people I've been chatting to on Twitter, last week. I was a little apprehensive, always remember 'ya mother always tells you not to meet people off the internet'. But I figured I'm a big girl now at 26 and it was broad daylight at a busy train station. Turns out it was great, I made a couple of new buddies and it was good to share experiences about respiratory illness and how different people deal with it. The girl, also names Gemma was amazingly upbeat despite her illness and lived a life pretty much exactly the same as any 'healthy' person her age - apart from the usual drug and physio regimes. Richard I think found it a little harder but was honest and had a real enthusiasm for his hobbies and interests which was refreshing to see. I hope we get to meet again as we had a good laugh.

The Gift of Life

Wow - been absolutely yonks since I last blogged. I'd mainly put this down to not feeling that there's been a lot to blog about! I'm probably wrong there and laziness has it's part to play. But when you know you probably don't have anyone who actually follows your blog it does become quite pointless. I guess I should try and see the writing itself as therapeutic though.

I often see blogs about peoples health stuff. I find many of them really inspiring and wish I had the words to express myself so eloquently. For a while I've wanted to blog about my own health complaints whether it be as a means of venting off or even to offer support for those who may read it and are in a similar situation. However, I have never taken the dive and done this for fear of sharing anything too personal online. But as any of you who may know me personally will know, I have a respiratory condition that has pretty much plagued my life for a number of years now. I have been in and out of hospital more times than I care to remember. And in intensive care over 20 times. So as you can imagine it does become pretty soul destroying. Nevertheless, I have found solace in the knowledge that lots of other people go through these traumas and there's a lot of support out there. Especially in online forums.

Quite recently I joined Twitter. For a couple of years I've been signed up to it but I just couldn't get to grips with it at all. I figure this was because I didn't really understand the premise behind it. But I put a few days work into it and am now totally and utterly ensconced by it. I have found tonnes of links to networks of people with similar conditions to myself and its been amazing.

Having health complications can get you to start thinking your own mortality from an relatively young age. This is what happened to me personally and so I got to thinking - 'What would I want to happen in the event of my death?'. This may sound really morbid, and I don't plan on going anywhere anytime soon but it was just something I felt I needed to address. I figured I'd rather not just be wasted- but rather 'recycled'. The way I view it is your body isn't really you as a person, it's more of a vehicle that you just use to get around in. Kind of like a rent-a-car. So donating for me personally doesn't feel like a big deal. It's for this reason I decided to sign the organ donor register, so that in the event of my death, a potential 9 other people could benefit from my organs.

So anyway, I had a little search online and found loads of groups and charities etc that get involved in promoting organ donation. I'm unable to work so felt I needed purpose and felt strongly that this was something I particularly wanted to get involved in. So I figured maybe I'd start simple and get involved in some tweeting about organ donors on twitter and facebook. Since then things have spiralled and I've learnt so much about the process. And also been introduced to a number of people on the waiting list as well as living donors themselves. Their stories are truly inspiring. Kirstie is in her early twenties and literally had hours to live when she got her lung transplant. She got married just 2 weeks ago knowing that she didn't have long left. In her final hours someone out there donated their organs to save her life, potentially granting her a future.

Organ donation is tricky, mainly because in many cases someone has to die for someone else to benefit. So its difficult to know how to react, as someones horrendous loss is someone else's humongous gain. However, without that person putting there name on the register, there would be two young lives lost today and not just one. Now Kirstie is thriving and just a week after her donation she is on a general ward and improving hugely day by day. Kirstie now has a future to look forward to and will never forget what a great gift she was given.

I hope to be able to continue getting involved in the promotion of organ donation. I need to do a little bit more homework though to see how best to do this. Fingers crossed next time I blog I'll have a few more ideas.