27.6.14

Good Old Catch-Up...

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So my lovelies in all the Hulabaloo with me finishing work and losing my metaphorical purpose in life I forgot to update you. I had a Hammersmith clinic appointment on Monday that I completely forgot to tell you about. I went by myself as it was just a run of the mill clinic appointment where I was getting the stitches from my line taken out. I had to have them in a little bit longer than you would normally have them in because I have a tendency to bleed more than the average person so they were in for about 3 weeks. 

I got to London with no hick-ups or anything which is somewhat of a miracle for me as regular readers will know. Having my stitches out felt so good, like an itch that needed to be scratched a little bit painful but the good type. I went in and Saw Rachel (my PH doctor) and we had a little discussion I told her about my numb arms, can't breath episodes and apparently it would seem that the acid reflux that I've been experiencing for the past year since I was put on Flolan can cause those type of episodes. Some of the drugs I am on, Sildenifil and Flolan in particular relax muscles and actually relax the muscles in my oesophagus, which is the reason I have a hard time swallowing bread, but because of these relaxed muscles it means the acid from my stomach can make it's way up my throat and goes onto my vocal cords which causes them to seize up which if any of you know vocal cords have a lot to do with being able to breath and thats why I was having episodes of not being able to breath and feeling like my throat was closing off. 

So I am now on a new drug called Omeprazole which just settles the acid in my stomach so it hopefully doesn't make its way up my throat and onto my vocal cords again. Thats all that pretty much happened at Hammersmith although with the 6 hours in the car and the 2/3 hours waiting around in the hospital I managed to read a whole book called "Me Before you" By Jo Jo Moyes and it was a beautiful book that I totally recommend to anyone looking for a unconventional romance story. 

Then in general life news I have discovered smoothies... A while ago I brought a Nutri-Bullet because I was going to be 'healthy' but a few weeks passed and I barely used it but a few days ago my lovely mother brought home these packets of frozen fruit which have various different fruits in designed to make a lovely smoothie and they taste really yummy. I think I have officially found my new breakfast. I generally don't eat breakfast due to sheer laziness but these smoothies are super easy to make and I find them really filling. Hopefully this will help me in my quest to lose the pounds that are piling on at the moment. 

Thank-you to everyone who has made suggestions for things for me to do as well, I'm making a list and I am taking all of your suggestions on board. Oh yeah and welcome to the followers I seem to have gained in the past few days I hope you enjoy the sometimes bumpy and emotional ride that is my life :-D


Chat soon guys 
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26.6.14

Purpose...

Hello my beautiful Blogland, 

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So even though I only worked several hours a week I kind of feel like my purpose has gone... just vanished. I don't mean on the bigger scale of like life I just mean generally because now I don't have to get up in the morning so my current sleeping pattern is me sleeping in a lot later than I normally would. Although all that being said I do make sure I get up for the tennis at the moment but what happens when Wimbledon finishes what do I have to get up for?

You know those long time non-workers who just choose not to work simply because they are lazy, how the hell do they do it?! I honestly feel like my purpose has flown out of the window. I know I was only a sales assistant but I liked my job and the people I worked with. I really hope my transplant happens soon so I can get back to it even if it is for only a little while while I figure out life's much bigger question of what do I want to do or be?

I'm trying to see all this free time as a opportunity to do things I just don't know what type of things I should be doing? Anyone have any suggestions? I should be organised and make a list and tick them off as I go. Although at the moment I can only think of things I can do post transplant. I'm still desperate to go to Wimbledon though... always wanted to see a Wimbledon final. How on earth do you get tickets to do that though?! Anyone?! 

I will have to think up some things and get back to you guys and if you want to make any suggestions of things I can do in my not so great pre-transplant body that would be awesome :-D 

Chat soon guys 
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23.6.14

End of an Era...

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The time has come, a time I never wanted to come but unfortunately it has.

As of this weekend I decided I was no longer fit enough to work
 
Friday evening I was having funny turns, arms going numb, body seemingly forgetting how to breath without constant reminder from me to do so. I had a rubbish nights sleep only seeming to drift off at 4am. When I woke up at 6 I felt no better and it took an hour and a half for me to decide what to do. It's not fair of me to expect work to keep my position open yet I only seem to be there about 1 week out of a month at the moment, it is not fair on them. 

As much as I have loved working there and as much as I wanted to carry on working till the day I got my transplant it just seems my body just doesn't agree with me. I have to keep telling myself that I'll still get to see my work chummies again and I would like to think they would take me back after my transplant till I figure out what I want to do with my life. It's just sad is all. I'll miss it and all of them.

I kind of knew it was going to happen for a while, I just didn't want to admit it you know? I think the guys at work have probably felt it too. Hey Ho things don't last forever and this is sadly one of those things.  

Chat soon guys 
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19.6.14

TFIOS You broke me...

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Bare in mind as you read this the last time I cried in a cinema at a movie was when I saw "Marley and me" it was absolutely soul destroying watching a beloved pet die. With that in mind I must tell you I am an ice queen when it comes to movies I rarely cry even when there are people saying "but it was heart-breaking" I am beyond critical when it comes to a movie worth crying over.
'The Fault in our stars' broke me!

It hit way to close to home I had tears in my eyes most of the movie, I held it in for as long as I could even whilst listening the sniffles and cries from the surrounding audience, I held it like a trooper that is until Gus starts crying at a particular point in the movie which I will not disclose so I don't ruin it for those of you who haven't seen it yet. Then because I'm there sniffling and crying like a moron Megan couldn't hold her tears in any longer either. I cry, Megan cries.

The movie, the book they bring up too many questions for me. I know that cancer isn't romantic, dying isn't romantic no matter what form your particular death takes but both Hazel and Gus get to die having loved deeply and were loved deeply in return and I love that! I think it's something everyone should get to experience. I have never been in love nor have I ever been loved by any-one but it is something I hope to experience at some point.

This movie is one that will be held close to my heart and may even have made it into my top 5 even after only seeing it once. It was just a sheer joy to watch! 

Chat soon guys 
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17.6.14

Struck with the Con Blues...

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Megan and I are depressed!! Not in the serious actually depressed way, in the over dramatic we wish were back at insurgence 6 kind of way.

Every year without fail we have to come back to our normal lives and we're always moody, miserable girlies for days. I think it's a mixture of things that does it. Like I mentioned in my previous blog endorphins and adrenaline are gone so there's a instant low right there but then normal life just seems super boring and mundane compared the few days we were away.

Me and meg always get super ambitious too because you always sort of come back inspired to live your dreams but you get back to your normal life and realise that living your dreams really isn't as easy as it seems. There are so many road blocks that are ahead for you and I can't even begin to think about living them until I get my transplant so that brings you down even more. It will only last a week or so but you should hear mine and Megan's phone conversations at the moment they go a bit like this:-

Megan "How you doing?"
Me "Depressed! How are you?"
Megan "Depressed!"

LOL we're obviously not actually depressed but we just really want to live the lives we've always wanted and you've just met people who went out and chased their dreams and made it happen but it's not always that easy. So at the moment it's all about the chocolate! But I promise one day I will live my dreams and I will take all of you along for the ride, it's going to be AMAZING and I cannot wait! 

Chat soon guys 
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16.6.14

Insurgence 6...

Well I had a absolutely wonderful weekend Blogland I hope you guys did too! 

So insurgence 6 happened this weekend. What is Insurgence 6 I hear you cry? Well my lovely blogland it was mine and Meg's Vampire Diairies weekend. Yes! We went again LOL For those of you who are long time readers you will know that this was mine and Meg's 4th convention, we both love it SO much and this year we even had another member along for the ride, Natalie, James's sister so Megan's soon to be sister-in-law. 

There are going to be a few of you reading this thinking that I'm sad for going while there will be others who will have wanted to go and then the lovely other few who actually went too. This year we had the pleasure of meeting Paul Wesley (aka Stefan Salvatore), Steven R McQueen (aka Jeremy Gilbert), Zach Roerig (aka Matt Donovan), Michael Malarkey (aka Enzo), Todd Stashwick (aka Father Kieranoff of The Originals), Rick Cosnett (aka Dr Wes), Robert Pralgo (aka Mayor Lockwood from season 1 of TVD) and last but definitely not least Leah Pipes (aka Cami off of The originals). Me and Meg have both met Zach, Steven and Paul before but it was so great to see them again and be reminded of why we love them so much. I could try to explain to you what it is that we enjoy so much when we go to this thing but it would not do it justice. I think for anyone meeting people from a show that they love it would be amazing so if you can do something like it, you should! We've been so lucky with the people we meet they always surpass our expectations with how lovely they are and just the time they have for you, no-one we have met has ever been less than lovely. I mean don't get me wrong it can be quite a stressful weekend sometimes because you're worried you won't get your autographs or your photos but it's all a part of the experience that makes it amazing. After it you suffer from the con Lurgy as most call it and the con blues but I think that has a lot to do with the adrenaline and the endorphins that have been pumping round your body all weekend that suddenly just aren't anymore. 

So this weekend I got to get pictures with Steven, Zach, Paul, Leah and Michael, We opted for less Photos this year and wanted to see more of the talks and do some coffee lounges too because last year was all about the photos so this year we wanted to change it up a bit. We did coffee lounges with Leah who is just the loveliest person I really was so surprised by how lovely she was because her character on the The originals has never been one I've paid too much attention too. We did one with Steven who is still as lovely as ever, he made Megan do her Lip trick that she tried to teach him at i4 it was hilarious. We did another with Zach who is also still so lovely and he seems to have grown up since the last time we met as he now has a little girl and is a single father and he was just gushing about her so much in the coffee lounge, it was so cute. We also did a Meet and greet which I really enjoyed because I got to have a argument with Steven about hockey and how he should be watching other sports like Wimbledon lol. 

For me and Meg it's also a chance to catch up with old friends who have been going to these things with us since Insurgence 3 but also go to a lot more conventions too. Nowadays it's like a massive reunion. This year was a bit harder for me than usual it's kind of a way I can measure how much worse I've gotten health wise, I spent a lot more time in a wheelchair and the few times I did try and just walk to somewhere it killed me because it's quite a large hotel. I also spent a lot of time on my oxygen because the humidity and heat was getting to me a bit but the whole experience totally outweighs any health issues I have at the weekend and I will still always do it because they are so accommodating to people with disability issues and Zach even carried my oxygen for me, bless him! We did have a minor issue with my line because it was leaking but luckily it was just from the bubble catcher so all I had to do was change it so no paramedics were needed this year :D. 

Here's a few photos from the weekend and seriously guys if you ever get the chance to go to something like this for a show that you like I say jump in head first you won't regret it :) 



Chat soon guys 
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11.6.14

The Small things...

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The thing I'm going to be writing about today I've wanted to write about for a long time but previously I had a completely different attitude towards what it was I was going to write about. I've wondered for some time why people ask "Are you okay?" "Alright?" "How are you?" all those different variations. In my mind I used to think people only ever ask those questions because of common courtesy, in which case said person is literally looking for the standard "I'm good thank-you. How are you?" response in which case they then reply the same.  Or because someone was just being nosey in which case they will get the same response and I'm unlikely to ask them how they are but the thing is I never actually thought anyone would really care enough to actually care how I am really feeling. 

Lately though my mind has changed. I'm trying to become less cynical. For me I genuinely will ask someone how they are and really want to know and for me it's my way of letting that person know I'm here whether they need to talk or not, sometimes people need to be with people without talking just knowing they have someone there if they need them. I know that because I am one of those people, I find it hard to talk openly with people about my feelings, face to face that is, without making a joke or just completely brushing off the subject all together because it makes me uncomfortable to talk about it, I have quite tough exterior to crack. There are few people that ever really get to hear how I'm really feeling. My sisters, parents, a few old school friends, my best-friends and a few very special PH and transplant friends. That probably amounts to about 10 or 12 people and I'm extremely lucky to have those 10/12 people. Although this blog has definitely allowed me to really express how i feel about so many things that under normal circumstances I wouldn't want to talk about.

I mean don't get me wrong I do still believe people only ask due to common courtesy and I know there are people that only crop up and ask me how I am when something dramatic or interesting  happens in my life because people do get bored with the whole "terminally ill" "dying" thing and who can blame them really? I mean I get bored with it too but I can't just walk away from it and not text someone for months to avoid it. This is how I know who my friends really are and I can promise you I will never be bitter towards those who have and did get bored with it because I can't blame them, although luckily for me there were/have been very few people who have/did get bored with it, I surround myself with positive wonderful people who are really amazing.

I think sometimes asking how someone is, is the only thing someone can do, it's a little thing that can sometimes help and make someone feel just that little bit better letting them know they're there. 

So from now on I'm going to try and look at peoples how are yous? and are you okays? as genuine because I like to believe in the good in people and because I ask with genuine feeling I'd like to think there are others who also do. I suppose it's a bit like when an English person offers you a cup of tea. A cup of tea solves the worlds problems there is nothing in this world that has not been made better by a decent cup of tea and if an English person offers you one then you know that they genuinely care or are worried about you because you can talk about everything that is wrong in the world and in your life over a nice cup of tea. It's the rule ;-) And therefore I plan on looking at future How are yous? and are you okays? like a good old English cup tea. 
   
Chat soon guys 
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6.6.14

The world is not a wish granting factory...

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So today was Papworth Clinic day and I can honestly say I've had better clinics. They are starting to really worry that my transplant may never happen. We had a discussion and my doctor mentioned just doing double lung transplant again because it is just taking too long to find a match for heart and double lung. The problem is we initially ruled it out because of how damaged my heart is and when we were talking about it today my doctor said if we were to go down that route it would all come down to how I recovered initially after the transplant but he's not even sure the surgeons would even do it in the first place because it would be far to risky. 

So today I was given the option of staying the course and having faith that I will eventually get my call for heart and lungs or choose to do a extremely risky operation which has an extremely slim chance of working. I chose the former. I know my situation is extremely precarious at the moment, I know I'm running out of time and everyone is really starting to worry but I refuse to take a chance on something that I know in my heart won't work, even if I did pull through with just double lungs I would still have a damaged heart and I would still end up living a life limited because of that heart and it would likely damage the new lungs anyway. People might think I'm being foolish but that is one risk to many for me and it would be idiotic of me to say yes to something like that because everyone is starting to get scared that it's not going to happen. I can't do something that I don't believe will work and the doctors thinking there's only a slim chance of it working as well. 

It really annoys me though I shouldn't be having to make these kinds of decisions. But like the title says "The world is not a wish granting Factory". I've had a few miracles in my time maybe that's all I get. Not everyone gets their wish and if life has taught me anything good things don't happen to good people, in fact a lot of good things happen to bad, horrible, mean people and I shouldn't expect anything else. 

I just hope life can find it in its heart to grant me one more wish

Chat soon guys 
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2.6.14

My Haven...

So today I am going to show you my Haven... and by that I mean my Bedroom. Why? You maybe asking. Well because my bedroom is a very important part of my life, it is my little haven a place entirely my own. 

I have not always had a place of my own as I shared a bedroom with Megan for the first 17 years of my life until the day that my older sister moved out to her very first apartment and since that day my room has been my retreat my own cosy cave to go when times are tough, when all I want is a bit of quiet, a place to be with friends and escape the world through movies, books, a place to reminisce. 

It's a bit like when you're sick and all you want to do is curl up in your bed and forget the world... Right? Well I'm sick all of the time but I can't just curl up in bed all of the time, as much as I may want to. There are however a lot of days where I cannot face the world or even the rest of my house and so my room gets a hell of a lot of quality time and therefore it has everything I could want in it... except food I do have to venture outside the realm of my bedroom if I want food... and a bathroom as well but that is literally two feet away from my bedroom so that hardly counts LOL. 

What I am trying to say though is I think for anyone in a similar position to me, or anyone really, they need a place that they can call their own, entirely their own. There are days when you don't want to talk to anyone and just want to be alone but being in the condition that I am I can't just go take a walk somewhere and clear my head. So instead I close the door and I pull the blind and my little haven welcomes my return.     

It pretty much has the entirety or HMV in it, Warren and James constantly tell me I could open a blockbuster. It contains memories from the good old days, thousands of photos, clothes galore and I may as well have a pharmacy in my bedroom. I can't completely escape the world or my situation as half my wardrobe is occupied by all the equipment I need to make up the medication that keeps me alive. Then there's my little office corner where I get to keep up with people and pour my thoughts out to you lovely lot.
 
I think it would just be nice for me to document where "my place" was at this time in my life because I'm sure once I get my transplant I won't be spending nearly as much time in my bedroom and I'd just like to remember the place that I felt safe, that I could always retreat to when I needed to and contained all my creature comforts.  
What you see when you initially walk into my bedroom 
My computer corner and obviously as you can see the copious amounts of stuff I keep in the cubby holes

A closer look at these 4 cubby holes;- Lots of lovely medication in the top left, Some Vampire diary things in the top right, the transplant box that will someday have a use in the bottom left and my Harry potter cubby hole in the bottom right
Lots of Purell which is always in my bedroom as I have to remain sterile when I make up my medication, the beautiful flowers Kath and Rob got me and other bits and bobs that rarely move from my printer. 
My sharps box where all things that touch my Flolan medication go, needles glass that type of thing. The start of my DVD collection, the cabinet mainly contains Disney DVD's and movies beginning with A then obviously continuing to the other letters the bookshelf and a corner where i chuck my shoes :D 
On top of my cubby holes, lots more DVD's  my jewellery box, little teddies I've received and cards some friends have been kind enough to send me recently. 
Yet more DVD's, a VW lamp, mirror and headbands :)  
Unable to escape medical things for too long a portable canister which only gets used if I have a really long car journey ahead or if the electricity goes out which isn't often.  
The place which I could not be without for long, my bed. The L shaped pillow has been a absolute lifesaver for me I can't sleep flat and this seems to support me in my sleep and I have been sleeping so much better since I brought it. The Noddy toys I have had the one on the left since I was born and the one on the right my Great Grandmother had made for me when I was a baby. The one on the left has been to every major hospital event in my life so far. What would a bed be without a few disney toys; Olaf, Spot, Minnie and a plethora of pillows Gryffindor included ;) My kindle and nasel cannula included as they are must haves in my bed. 
Wardrobe, which Alfie couldn't help getting into. The first 5 baskets have clothes in generally jeans, jumpers, t-shirts, leggings. Then the bottom 2 baskets contain stuff to make up my Epoprostenal/Flolan and where my cat is and the box is usually full of individual bags to make up my meds but that lovely task of making up the bags isn't till tomorrow and the spare bedroom is currently ladened with boxes :) 
The main part of my wardrobe with all my lovely clothes, where Alfie is, is where lots of individual medication bags usually are but as I mentioned above thats task is happening tomorrow so at least my wardrobe is looking somewhat tidier for you guys. Also at the top there's a few books but 95% of my book collection is under my bed which happens to lift up for lots more storage space. 
The bag that has only ever be used twice on May 20th/21st 2013 and October 8th/9th 2013 with both my false alarms 
My TV corner. My beautiful lamp with the New York skyline that I received as a present a few years ago, a little "I Love you" plague that my aunt gave me a few years ago. The DVD's that I'm currently working my way through. As you can probably tell I'm not one of the people who need the most up to date technology so my TV will never be the most up to date thing in the world but it does the job :) 
My beautiful Draws which just generally keeps underwear and socks in but I absolutely love them. Underneath you can obviously see lots of bags this is also another place I keep the individual bags that I make up to make my medications with and on the right my little green box that I keep the majority of my shoes in. 
Annnnddd finally we have the photo frame that I brought when we first moved into this house and contains a lot of the people I hold dear to my heart and obviously a Gryffindor flag if people didn't already know I love Harry Potter. 
That's it guys. Obviously my room tends to be scattered with pillows usually and there are nooks and crannies that I didn't show you like under my desk where I keep my photo albums and files and under my bed where I keep childhood memories and the majority of my book collection and my bag collection and uni stuff but honestly it's a mess under there and I didn't want to sort it out lol. 
I hope you enjoyed that "tour" of my bedroom and I hope you can see why I love my bedroom so much and see how I can spend so much time in it :) 

Chat soon guys 
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