30.4.14

May Goals...


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 Hey Blogland, 

So today's post is inspired by the Lovely Hayley from 'Water Painted Dreams' go check out her blog, I really enjoy it :). The idea of the post is that I post goals that I intend to try and do throughout May. At the moment I don't seem to have much focus or much direction so I'm hoping that by writing them down I'll maybe be a bit less all over the place and a bit more focused. 

  1.   Wake up before 9am Monday through to Saturday and before 10:30am on Sunday.

I know that this seems like a simple thing but except for waking up to take my pills and do my med change I don't seem to get up until about midday at the moment and then I seem to think that because most of the day has happened there's no point in really getting into anything. Stupid yes but it's the way my brain rationalises :)

   2.  Do my Uni essay at least 2 weeks before it is due (which is on the 27th).

This is because I leave my essays till a few days before and then I panic the night before it's due and it's all panic stations and it stresses me out and no matter how many essays I do it is always the same. I would just like to avoid that this month lol. 

    3.  Take 20-30 minutes out of each day just to give my room a tidy/clean.

I am fairly lazy. Or more the case I hate having to bend up and down picking up my pillows as it knackers me out and I just don't put things back where I get them from, so I end up with piles of DVD's all over the place and just stuff all over my desk and pillows on the floor. So I always end up having to spend about 2-3hours sorting it out  once a week, whereas if I just take about 20mins a day I should avoid having to do that. 

   4.  Lose 6 pounds.

There's really no explanation except the fact that I've been eating horribly for a few weeks and I need to lose 6 pounds before I'm back at Hammersmith/Papworth :-)

   5. Eat Breakfast.

I'm one of those people that really doesn't eat breakfast probably because I wake up at a stupid time of the day but if I'm going to be waking up earlier I need to eat breakfast. 

   6.  Read 3 books.

I'm not going to be over ambitious with how many books I read especially since I have quite an important essay due this month but I think 3 will be doable. 

   7.  DO NOT buy any new clothes or any stupid things you don't need!

I have a, not what I would consider horrible habit, but not a great habit of surfing the internet for things I do not need  and accidentally pressing the add to cart button which then leads to the pay button. It needs to stop!

   8.   Avoid the A&E.

Obvious reasons LOL

   9.   Write down happy things and put them in the box my nephew got me.

My nephew gave me a box which has the quote "When it rains look for Rainbows. When it's dark look for stars" and I want to start putting the little happy things that happen in the day that you usually forget about (as you can only ever really remember the bad things) and put them in this box so I can look back and remember the good things :)

   
 10. Get Transplant! 

Obviously this is a ultimate life goal not solely associated with May but May seems as good a time as any ;-)

Chat soon guys 
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29.4.14

The Fault In Our Stars...


So I have just finished "The Fault In Our Stars" by John Green. 

This is a wonderful book! I was a bit dubious upon reading it because I've read quite a few books about teenagers who are dying from various conditions. I can honestly say though I really, really liked this book. Now I know that the people in this book are cancer sufferers but I can completely relate to a lot of what this book was talking about. 

If you have ever wondered what it's like to be dying (not that you would but you know just in case) this book really is a good portrayal of what it's like. There are bits in it where I can't relate what with me never having been "in love' before but I can empathise with it. One of the characters Augustus Waters at the very beginning of the book is asked during their support group session what he fears and he simply states "Oblivion" and as I was reading it I was like "Yes! Exactly!" and when Hazel says to her parents "I'm a grenade and at some point I'm going to blow up, and I would like to minimise the casualties, okay?" It is like somebody went into my brain and plucked that out. 

It's a essentially a love story though about two teenagers both unfortunate enough to have cancer in some form or another, Hazel's affects her lungs and I can completely relate more towards her as she constantly complains that she wished her lungs would just do what they're meant to do and how they are are just rubbish at being lungs (My life in a nut shell but with the addition of my heart lol). Augustus's cancer meaning he lost a leg. I'm not going to ruin the book for you but I personally think it's a book about them finding themselves or more so about Hazel finding herself and knowing that if/when she dies that her parents will be okay and that going through life you have to be okay with the choices you make. It's witty, sarcastic and funny. It really is something that I just think you should read and then you'll know what I'm talking about it's obviously sad too but  I think it's worth it.  

Chat soon guys 
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27.4.14

My PH Lovelies...

Hey my wonderful Blogland, 

So, Megan and I have returned from our little adventure in Oxford. We had a wonderful time! It was so great. I got to see old PH friends and new ones. It's a weird situation to be in though because all the people you meet you talk to a lot online and you're already friends with them, you just haven't met them yet so it's like seeing an old friend for the first time. Then I met people that I have never spoken to before and everyone was really, really lovely. 

We were meant to go to the PH talk which is pretty much the whole point of the weekend, which was on Saturday morning, but I felt awful for some reason, I think it's because I had a horrible nights sleep. You know you're in a unfamiliar place and I just kept waking up every hour in the night. So I got a 3 hour kip and I felt much better which meant I could enjoy the rest of the day. We did archery which Megan and I have done before but I'm pretty rubbish at anything that requires some form of hand eye co-ordination, but I didn't do too badly I even hit the centre at one point, only once but it still happened! :-D Other people did things like Clay pigeon shooting (laser version), Wine tasting, flower arranging. We were meant to do First aid but me and meg got distracted talking to people so didn't really bother going, whoops!

Someone I did meet was my old specialist nurse from Great Ormand Street who I haven't seen in about 5 years and she was only there for a short time but it was so amazing to catch up with her because she was a big part of my life for about 6/7 years and when you go up to the Hammersmith you just sort of get cut off from them and never see them again and I do miss Great Ormand Street so it was lovely to have a bit of a blast from the past. 

Then in the evening we had our Gala dinner. Meg and I were on a table with Aimee, Steve, Hollie, Darren, Laura, James and two other people who I cannot remember their names at all :-/ but they seemed really lovely too. It was a lovely group and I just love them we had lots of fun the entire weekend and I felt so comfortable with them which is a sure sign I like people. We were joined later by a really nice couple Gemma and Andy, and Gemma has only be diagnosed since January but I really hope we managed to make her feel a bit better about having PH and a little less alone because when you're first diagnosed with it you literally feel like the only person in the world and that's what's so great about the PH conference because you get to talk to people who are in the same boat, or similar and see what other types of PH are like. It's a really great experience and I totally recommend people doing things like it especially if you have something wrong with you or you know anything and you get the opportunity to do so. Even Megan enjoys herself and I literally had to drag her to the first conference we went to but she enjoys meeting people and having a good old natter now that she knows people are all there to do the same thing :-). 

Hopefully they are doing another one next year and I'll definitely be looking forward to going. Whether I'm transplanted or not I'll be going because even though I won't have PH anymore, you're kind of a life long member of the club and PH has been 12 nearly 13 years of my life so having a transplant isn't going to change that and I'll always be interested in how the medicine and the developments they make within the field of PH are going. I think it's a club that once you've joined you can't ever really leave, it's a permanently ingrained part of who you are :).  

This morning however me and Megan may have driven over a great big fat nail which meant we broke down in the middle of nowhere and us being who we are have no experience repairing or changing a tyre (not that we had a spare tyre lol) just ended up waiting in the middle of nowhere for the RAC guy to try and find us :D. A few people stopped to make sure we were alright which repairs my faith in humanity but we were just like "no we're alright, thanks though". One guy was like "you can wait in my car if you want" and I'm sure he was just being nice but too many horror, thriller movies have told me that is never a good idea, I refuse to be someone's murder victim LOL. 

Here are a few photos from the weekend, they aren't the best quality as I took them on my iPhone but I didn't want to lug my camera around  but they're still good :) I wish I had got more photos with all the people I met but I kept forgetting to get my phone out but I did get some, so bonus points for that :D. 


Hollie, Myself and Aimee
Darren, Hollie, Aimee and Steve :) 
The lovely James and Laura
James, Laura, myself, Darren, Hollie and Steve

Are table minus steve

Me, Megsy, The Lovely Karen and lovely Hayley
Hollie, Me, Gemma and Andy
Aimee and Meggy 
Me and Nicola :D 

Chat soon guys 
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22.4.14

The moment...

Hello my lovely Blogland, 

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So you know me always one for reflecting, I kind of have been today. I went to my GP today and she has given me some anxiety and panic booklets to work through while I wait for my appointment with a councillor which is on the 14th of May I haven't started them yet but I definitely will do and hopefully they will help, maybe at least. It was funny while I was in there she asked me how long it had been going on for and I told her since about christmas and she was speculating as to what would have triggered it, because I've been ill forever and she found it intriguing that after waiting for so long that I would start having anxiety now. 

It got me thinking though about what I used to be like because I have been ill forever but I was pretty normal even just a few years ago. If I think back to when I started the whole transplant process back in 2011 I was actually pretty well I actually thought at the time that I seemed too well to go on the list but then within the time between May 2011 and April 2012 (how long it took to get me on the list) I got worse,  it would be amazing if it weren't happening to me to see the rate of decline at such a rapid speed then within 9 months to a year I was much worse and I'm much worse than I was last year which is obviously why they stick you on the list so early because they spot the signs of decline and know there's really no stopping it once it's started there's only trying to slow it down. 

Then I look back further even when I was 17 I had a job that I did at weekends and although I was ill then I was at college 5 days a week doing 9-5 but getting up at 6 and not getting home till around 6:30 and then on the Saturday I was doing 9-6 and some days 8-8 at Christmas barely sitting down for the whole day and Sundays 10-5. I look back on that and I really don't have a clue how I did it because I can barely do my 3 hour shift at work now. It really just shows how normal I was at one point in my life I was a normal girl who just took some pills and had to go to a special hospital every now and then. 

I remember resenting my illness back then for slowing me down. How I wish I could go back and give myself a slap and tell myself to appreciate it while it lasted because it wasn't too long after that, that things started to go downhill. If after my transplant I get back the quality of life I had when I was 17 being able to do what I did then I'll be a very happy bunny. 

Hindsight is a wonderful but horrible thing. I can appreciate now what I had because I don't have it anymore but I resent my illness now but who's to say that in a few months I won't want to give the me I am now a slap because I should of appreciated how I was now because we don't know how I'll be in a few months time. 

I suppose it's all about being in the moment and trying to appreciate what you have in the moment and not what you did have, what you will have or what you could have had. Just appreciate what you do have. So for me I appreciate the fact I'm alive and I'm here, I have wonderful parents, sisters and nephews. I have wonderful friends some who can really understand the experiences I have had and I have a strong bond with because of all that we go through, friends who have always been there for me for many years. I have a loving home and somewhere to call my own, my parents who provide for me because my current state of health means I can't do it on my own. I have so many things that I need to learn to appreciate more rather than focusing on the bad stuff which sometimes can cloud my mind too much and too often. 

I hope you guys have things that you appreciate as much as I do and I hope that you just take just a moment to appreciate them. 

Chat soon guys 
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20.4.14

2 YEARS WAITING... celebrated with lots of chocolate...

Heya Blogland,

So it's Easter and officially 2 years today that I was placed on the transplant list, two very long years! 

Saying that though I say it's been long, it has but there are days where it feels like it's been a eternity and there are days where it feels like no time at all. I remember the day perfectly, I remember exactly what I was wearing and what I was doing and it sometimes feels like it was yesterday. Then there are the days that I'm ill and it feels like I've been waiting a absolute lifetime and in some sense I have because my entire life has been leading up to point where I get my transplant but it has only been the past 2 that my life has really depended on it. 

I don't feel down about it though, I'm not entirely sure how I feel about it but maybe it's because it's Easter which means I get chocolate so thats replacing the normally resentful feelings I have about my "transplant list-aversary". 

Easter at my house is fairly quiet this year, we usually go and see my mum's side of the family but my mum's sister had a operation so we're letting her recover more before we descend upon each other. So this year it was just me and mum for most of the day. My dad was at work, my big sister went to a easter egg hunt with my nephews and then to her partners parents in the afternoon and I went to Frankie and Benny's with Megan and James this evening because I was in the mood for real food as I literally ate nothing but chocolate and sweets all day LOL. WE wen to my sisters new house that her and James have just brought and I'm so impressed with how much they have got done in such a short space of time. Their Bedroom is pretty much done, so is their 3rd bedroom and the Kitchen. They're in the process of unpacking but it's looking really great. I love it! 

This year we decided to do much less chocolate than we normally do and my mum got us a few presents instead. I got;- a malteaser bunny egg, a Flake egg, a button chick, a smartie hen... then I got a yellow t-shirt, a pair of pyjamas, a Vaults Wagon van lamp and 4 DVD's. 

I love my gifts they are awesome, I'm especially chuffed with my Vaults Wagon van lamp, if any one has ever heard me talk about what I would buy if I won and extortionate amount of money they will know that I always say I would go to Vaults Wagon and commission them to make me a brand spanking new Vaults Wagon van in colour of my choice and it would just be awesome!

In other news I think that my surface infection might be starting to dis appear it has much less puss and seems to be looking better too. I really hope so because I SO want to go to the PH conference at the weekend :).

Anyway I hope you all had a wonderful day whether you celebrate it religiously or like me it's a just a good excuse to buy and get chocolate. 

Here are a few photos from my day :) 

All my lovely chocolate and gifts
My Mum and Das's easter goodies
My nephews easter presents :)
I got greeted at the door by a Jaydon bunny LOL 
Trying to take a picture of my sister's little family, the little children wouldn't stay still lol 
My extremely awesome snapchat photo this morning LOL 

Chat soon guys 
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16.4.14

On my side....

Hey Blogland, 

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So yesterday was weird. I was all set to be in hospital for at least a few weeks, I had packed my laptop, my kindle, chargers, DVD's, work for me to do, lots of pyjamas, a million pairs of socks, blankets and pillow at the ready but looks like the universe might be on my side for once. 

I got there and they did everything I told them to do before I had to see a doctor and I explained everything that Hammersmith wanted them to do to the doctor and that he needed to liaise with them about what else to do. He asked to see my line and he agreed that there is still puss coming out of it but with all the bloods that they had done there is no infection markers within my blood, which is great we like that news but he didn't want to put me through what I had to go through last year. Basically there is no in-between when it comes to treating this you either treat it the way we have been or we treat it the way we did last July which is very intensely and physically draining on a person. I told him how I think Hammersmith just want to be on the safe side because no-ones want me to get septicaemia again which I agree with because I can honestly say it was a horrible experience last time and I don't want to have to go through that again unless I absolutely have to.

So Tim the doctor went off to talk to his boss who oversees all the doctors in A&E and see what she thought, they were speaking to Hammersmith to get their opinion on it and then they were speaking to the microbiologists as well to get their take on what could get rid of the strain of infection that I have. After lots and lots of talk they came to conclusion that the strain I have needs longer on antibiotics and stronger ones too. It is the same strain I had last year (which I have already been told I'm easily susceptible to) and like last year I needed 5 weeks of antibiotics to officially get rid of it. We can already tell that the surface infection is on it's way out as there is a lot less puss than there has been so I'm on a further 10 days of antibiotics which they normally don't do but the microbiologist think that it should hit it hard enough to make it go away. They are making me feel sick and tired I'm not gonna lie but I can honestly say I'm more than happy to feel sick and tired in my own bed rather than a hospital bed. 

I'm surprised because things don't normally go my way like that, I usually end up with the crap end of the stick so yay go universe for being on team Stacie for once :). At least now I know I can enjoy Easter with my mumsie and I can still go to my PH conference next week so all in all I'm a happy bunny :)  

  
Chat soon guys 
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14.4.14

Once again...

Hey Blogland, 

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I'm writing this now because after tomorrow I won't really have access to the internet. It seems that my surface infection isn't going away. The antibiotics I'm on don't seem to be getting rid of it they only seem to be keeping it at bay and the only reason it hasn't gone any further is because I'm being meticulous and  cleaning it and changing the bio patch every other day rather than the every week we're usually supposed to do that. 

So tomorrow I will be going to A&E where they will be putting me on IV's and giving me a few extra lines so they can remove my current line and then I will be ambulanced up to Hammersmith at some point to have a new one put in, hopefully this won't take too long One of my specialists said it should be done by Easter as it's only a surface infection but I think that might be a tad optimistic but hopefully I will be out in time that I can still go to my PH weekend :) *fingers crossed anyway*

I'm so annoyed at my body why can't it just behave for once?! At least I suppose this time it gives me a chance to pack and make sure I have all my drugs at the ready and pack some DVD's, Laptop etc.

Anyway I will try to update you guys but it's more likely to be through twitter and Facebook. 
Chat soon guys 
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11.4.14

Goodbye tea...

Hey Blogland, 

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So it is official I have to wean tea out of my life, a tragedy beyond all tragedies. Now I may be exaggerating slightly but I'm still not happy about it lol. For a while I have been having  abnormal heartbeats. During the day they are easy to ignore because I'm usually busy doing something but at night time they were really easy to notice and were one of the factors adding to my anxiety. I rang my PH team to see what they thought and they told me to ring my GP and get a appointment to have a ECG done. They didn't have any appointments available till after the one I already have on the 22nd, I rang back to ask if they thought it was important enough that I needed to make a emergency appointment which they said it didn't but in the mean time I could try cutting out caffeine. The only source of caffeine in my diet is Tea. 

One of the few pleasures I have left in my life is a lovely cup of tea and I am having to cut it out. It's only been 24 hours since cutting out the tea but I can already tell a difference which I should be massively happy about and I am because I had such a good nights sleep last night being able to get to sleep not worrying about why my heart wasn't beating to it's regular rhythm but I mean seriously why did it have to be tea? Why couldn't it have been chocolate? At least then I would have lost weight. 

Hey Ho I suppose if it has to be done I will do it because if I'm honest the odd heart beats were really starting to freak me out and then I'll get my ECG whilst I'm at my GP appointment on the 22nd :). 

I'm working my way through my Harry Potter books nicely for those of you that don't know I'm re-reading them. I really do love them, I don't think they're children books at all! When you re-read them though you remember things that didn't make it into the movies but because you've seen the movies you can imagine it so easily and just sort of slot it in. Honestly though whoever made the Order of the Phoenix movie did the worst job ever! Me and Megan have always thought so. It's the worst movie out of the series, by far, but I actually really like the book it was such a disappointment when the movie came out but at least we will always have the book :).  

Chat soon guys 
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7.4.14

Working on it...



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So I am not completely better yet, but we're working on it. When I say better I mean in the general sense in that I'm trying not to feel like crap all of the time. I went and got my prescription today and we changed my antibiotics from the one I was on to a new one called Flucloxacillin which is one of the antibiotics they had me on last year when I had the very serious infection so we know it should kill of the surface infection. I mean it's not as intense as last year but hopefully it won't need to be to get rid of it. 

My increase in my diuretics is starting to shift some of the extra fluid I seem to have been retaining which I am relieved about my stomach was starting to resemble something of a pregnant lady's lol. I rang hammersmith today and spoke to one of my specialist nurses and she thinks I should book a appointment with my GP to sort out this "I'm going to die in my sleep" anxiety that I seem to be having so I'm seeing my GP on the 22nd, I'm sure they'll refer me to a shrink or something which I don't mind doing, I'm just not one of those people that thinks constantly talking about something to someone is going to shift the fear I have. It's not like talking about it is going to stop it from happening, but I suppose I can try it and maybe it will make me feel a bit better about it all. 

I managed to get out of the house yesterday, albeit accompanied by my oxygen but I got to go see a movie that I have been waiting to see since I found out that it was being turned into a movie "Divergent". It did not disappoint at all, it was a really good adaptation of the book and I'm really excited to see the next one :D 

Chat soon guys 
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4.4.14

Constantly...

Hey Blogland, 


So this week has been stupid, just really, really stupid and as childish as I know that sounds it is the only way I can describe this week. As you all know I was in A&E on Sunday and then Wednesday I decided to go out with my work chummies as I had been planning to for the past few weeks which in hindsight wasn't the best idea due to the fact I actually wasn't feeling that well and haven't been able to get off my oxygen since my little visit to the hospital on Sunday. Anyway long story short we were put in what can only be described as a sauna, the air was horrible and thick and barely breathable and we were down some stairs with the smallest windows on the planet that probably opened about an inch. So I started feeling funny and dizzy and just plain old horrid there was no way I was going to be able to get up the stairs so I had to pull out the "I'm waiting for a Heart and lung transplant" card before they would open the fire exit for me. I got my sister and dad to come and get me, oxygen in tow and I went home. I didn't even get a chance to eat my dinner :'(. 

Later on in the evening about 11pm I started to feel even more horrible, my heart rate was like 130/140 my muscles were really horrible and shaky and stiff and I honestly have no idea what was wrong with me. Once again I ended up in A&E I felt awful and I'm pretty sure a nurse tried to kill me whilst I was in there. He gave me a drug which I told him I don't react well to which was soon to be followed by me going in and out of it, BP dropping to the floor, heart rate reaching new heights of 169 and following by continuous bursts of heart rate going sky high and BP going through the floor every now and then. For every good experience I have in A&E I have at least 2 bad ones and it was scary because the doctors didn't even seem to care that it was happening. Hey ho at least I got to go home after it seemed to settle which was about 4/5am.

I have been put on house arrest until my antibiotics have finished and hopefully I'm going to start to feel better. I feel bad because I seem to be constantly writing about bad things and I don't mean to, it just seems to be my life at the moment. I'm sure I'll feel better soon though :D I'm watching an excessive amount of Gilmore Girls and lots and lots of Disney movies, Frozen in particular because if any of you are anything like me you have to overdose on a disney movie when it comes out :) . I have discovered though that I don't actually own Sleeping Beauty and now I have this massive craving to watch it, damn Megan for moving out and taking her copy with her LOL. 

Chat soon guys 
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1.4.14

Mothers day...


My gift to my mumsey
Our collective gifts to our mumsey
Yummy Hot Chocolate, Meringues and swiss roll :) 
The sisters :)
Me and my mumsey 
Hospital fun times LOL 
Me and meg chilling on the bed :) 

Hey blogland, 

So we had a fairly good Mother's day I suppose. Me and my sisters took my mum to a garden place that my mum loves and we had breakfast, Megan had the biggest meringues on the planet which came in handy later on in the day lol. My sisters and I wanted to get my mum something she wanted so we took her to this garden place and told her to pick whatever she wanted and we would get it for her, but because I can't stand people waking up to nothing i also brought your standard chocolate, a mug she really wanted and a candle she wanted too which smells so yummy!

I haven't been feeling very well for a while now and I definitely did not feel at all well on Sunday and my line has been leaking quite a lot of puss from the line and that had been really worrying me for a few days but I was determined that my mum at least get the morning to celebrate mothers day. As we were going round though I just kept feeling worse and worse so we decided A&E was the best option. We got there and it was the standard bloods thing, they checked my haemoglobin first and that was fine so we knew it wasn't anything major so they took normal bloods and cultures. Everything came back fine on the normal ones so they are sure that it's just a surface infection and gave me some antibiotics which should hopefully clear it up and I'll ring tomorrow to make sure all the cultures they took come back okay too.

So annoyed with myself because I was determined to make it out of March with no visits to A&E, sadly it was not meant to be. Hey ho maybe I can get through April with no hick-ups?

Chat soon guys 
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