25.2.14

Fantasy, Reality and everything in-between...

Hey Blogland, 

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You know me and my sister when she used to live at home and we shared a room would used to have the most in depth conversations about the places we read about in books, the magical far off lands that those books took us too and we wished with all of our hearts that they were real. (She's gonna kill me after she reads this LOL) 

I don't have a belief system at all, if god exists, I hate him, I often wonder whether reincarnation exists, that sometimes crosses my mind but something I always wonder about is if I don't have a belief system what does that mean for me when I die? I don't want to believe that there's nothing after this, our lives are far to limited and short for this to be it, even those that make it to grand old ages of 100. If you think about it 100 years is nothing the universe and the world has been around for millions and billions of years, 100 years in the face of all that time is like a spec of dust. How does a small spec of dust make an impact on the universe, on the world, on time?  

I know thats a big question and one nobody is likely to ever answer. Although thinking about it maybe Hitler achieved that impact. Attemptive Genocide will do that for someone.

So when we were younger (I say younger like I don't still want it to happen, but I do so much!) Megan and I would discuss our books and a particular one being Harry Potter and one of our favourite programmes being Charmed and I remember quite vividly a conversation we had about how if we were to die we hoped we got to choose where we got to go whether fictional or real life. Then the conversation started to go off onto a tangent about what if I chose a certain place (because obviously I'm going first) and Meg chose a different place we needed to choose the same place to be together. I think we decided on Harry Potter in the end because obviously we wanted to go to Hogwarts and learn magic and all that stuff. We did have the conversation about the fact that Voldemort would be there but we came to the conclusion that no matter where we picked there would always be a bad person, or situation and the fact that magic would exist and all that cool stuff outweighed the whole Voldemort issue.

I know it sounds ridiculous and childish, but the more books I read as I get older and the far off places I get to visit when I read those books it just makes me really not want to believe that this is it, this can't be all there is. I haven't made the impact I want to make on the world, I haven't had enough time to make any sort of an impact. So I suppose I'm sort of hoping this can't be it and at least if I do die I can pick some other reality, fantasy land where I can continue to try and make an impact. 

 Chat soon guys 
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23.2.14

Worries...

So I'm feeling a bit better after being on these antibiotics finally, I thought I was going to feel like crap for the whole of 2014, haha! 

I can't say I've been feeling amazing in myself really. I don't know what it is that has suddenly got in my head but at night time I just lay awake to afraid to go to sleep because I'm suddenly really afraid I'm going to die in my sleep. The past few days haven't been so bad because I've been so exhausted that I've just fallen asleep without having to think about it much but in those days when you really have to lay there a while before you fall asleep I get it in my mind that I'm going to die. It's really odd! 

I don't really know how to explain it properly to anyone I've tried to explain it to my sister and my mum, but my body has just felt really unusual the last few weeks, like it's not me. I would try and explain the feeling to you but it just wouldn't come out right and you would probably end up thinking I'm a nut job lol! I suppose I can explain some things to you like the fact that I'm very aware of my heart beat, I have always been but the past few weeks it's just been there, thumping in my ears at night and with this minor infection and my cold my heart rate has increased and it's something I've noticed as I generally know it before I even find out for definite using my little finger machine thing. It freaks me out a little, my chest is feeling a lot tighter lately and it definitley feels like my lungs are way to big of my rib cage and I think that's a main reason why I'm so paranoid thinking I'm going to pop my clogs in the middle of the night because breathing has become somewhat harder lately and I suppose you always relate that to being a main necessity of staying alive lol. 

I dunno there are other things that are too hard for me to describe to you guys via my blog but I suppose it's just making me really anxious and worried about it especially at night time because I'm by myself in my bedroom and everyone tends to be asleep I suppose I just feel a lot more vulnerable than during the daytime with everyone around.

*                              *                              *                              *                              *                              *

That was last nights mini panic ^  ^  ^   ^   ^   ^   ^ lol I never know whether to post the little panics I have in the early hours of the morning I've written a fair few in my time and a lot of them get deleted because I think they must just seem stupid.

I can't say I'm feeling that much better today I keep hearing about people getting their transplants and there is just part of me that every time I hear about another person having their transplant it just seems to scream in my mind that I won't be getting mine, especially when you hear that they've only been waiting such and such a time and I just keep asking myself what the hell did I do that means I'm having to wait this long? The rational part of me is aways pleased for whoever it is that got their call and the rational part of me is constantly having to remind me that it's about the match and not the wait time and I understand that but 22+months and the rational Stacie that I like is slowly getting pushed out of the window and irrational Stacie seems to be taking her place.

It's okay though I'm off to the cinema and ice-cream and popcorn will help send me into a food induced coma that will help me forget ;). Food is ALWAYS the answer :D


 Chat soon guys 
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18.2.14

Second home...

source | I like this quote, it represents so many people I know who are so optimistic in the face of overwhelming adversity and they are the most optimistic people even though life is telling them otherwise, and I do believe that 'Optimism is the foundation of courage'
So blogland, I was once again at A&E last night. It's starting to get really old and I reckon you guys are probably bored about reading about my latest venture into that place. I haven't been feeling very well the past week or so, or more so than I normally feel and then on Saturday when I was changing my dressing over my line I noticed that there was a fair bit of green puss coming from the exit of the line (yes I know To Much Info) and it was red and sore too. Now we all know that since I had my infection last year I've been somewhat paranoid in regards to my line and infections but I decided on Saturday that since I didn't have a temperature that it probably wasn't a infection and that I would just keep a really close eye on it. Then yesterday I wasn't feeling very well at all, just really off and then I changed my dressing again once again there was a fair bit of puss around the line and it looked a bit more red than it had on Saturday. I took a photo of it both Saturday and yesterday and showed my mum and sister so they could say whether they thought it looked worse because I know I can be a bit paranoid in regards to my line but Candice said she thought it did and also because I thought it was more sore we decided to get it checked out.

I officially hate the receptionists at A&E or more specifically one of the receptionists. She is the rudest receptionist I have ever had to deal with. In my notes it specifically says that if I come to A&E with something wrong with my line I am not to wait to be seen, I told her this and she told me that, that didn't matter they were really busy and I would have to wait to be triaged by a nurse like everyone else. Now at this point my chest was hurting, I wasn't feeling very well, there were no seats to sit on and I just generally felt like crap. My mum and sister managed to get me seen by the nurse pretty quickly. Because I didn't have a fever and the only sort of signs of an infection was the exit point of my line and raised pulse she said we would have to wait a little while because the A&E actually had queuing ambulances and the hospital was pretty much full. I was okay with that, there's not much you can do about that, if there's no beds there's no beds if you know what I mean. Although I do think they could improve how they do things because they knew they would have to take bloods from me I don't really understand why they couldn't take bloods from me when they triaged me and then by the time there was a bed the blood would have been ready.

Anyway so my mum and I waited about 2 hours and I started to feel really dodgy like really dizzy and faint and all I was doing was sitting down so my mum told the receptionist and then a nurse called me through to  a bed. I luckily had a nurse who I've had before and who knew most of my stuff and we joked about how my line was a bit of hassle :D. While I was in the actual A&E bit we did bloods, blood cultures, heart trace, all the usual stuff and another X-ray. I started to feel really off while I was in there though and may have thrown up on my nurse, whoops.

I was moved up to a ward where we had to wait for a doctor to go over my results and then they would decide what to do. While we waited I threw up again which was fun lol. The staff on the ward were super lovely and the doctor who was dealing with me even did a bit of research about my line and what was wrong with me before he saw me. That's something I always appreciate when I'm being dealt with by a doctor I have never met before, it makes me feel less anxious. He said that my x-ray and bloods showed no sign of infection in my line because my CRP, blood cell count and all that were normal but I have a infection around the exit site of my line which is common when you have a line coming out of you. So they've given me some antibiotics to get rid of it and I just have to be extra efficient when cleaning my line and changing my dressing. We're putting the fact that I was sick down to the fact that  I have been producing a lot of phlegm because of my cold and it's just my bodies way of getting it out of my system  plus the fact that it was horrid and muggy in the hospital wasn't making me feel much better lol. We got home about 2:30am so I'm tired today but at least I know I haven't got a infection in my line and hopefully this cold will be on it's way out soon.

I honestly hope that's it for a while, I can't be dealing with this going into A&E every few weeks thing. I mean I like to be on a first name basis with my normal doctors but you know you go to A&E too much when you start to be on a first name basis with them.        
    
 Chat soon guys 
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15.2.14

Presumptions...

Hey Blogland,  
source
So this morning started off pretty crappy. I haven't been feeling well due to my stupid cold so I'm just generally feeling a bit rubbish and then to add fuel to the fire no-body could take me to work so I had to get a taxi (as I can no longer get the bus, or I could I just would not make it through my shift at work if I did) so I was just generally feeling annoyed and irritated by those things. When I got in the taxi I was coughing as I do which was a bit more phlegmy and more gross that it usually is due to my cold and the bloke turns round and asks me if I've been smoking too many fags? I was polite and said no and I just had a cold, but it really did annoy me! Probably feelings that were strengthened by the fact I was already annoyed and irritated anyway. It really gets to me though when people feel the need to comment on stuff like that. 

A fellow PHer said he was probably just trying to break the ice, which he probably was. The problem is I get this in so many different aspects of my life that it just adds fuel to an already raging fire. I would like to know though when it became common practise to make presumptions about people? Its not like people go up to really morbidly obese people and tell them they should eat less because thats seen as rude and inconsiderate but it's okay to tell a really slim person to eat more because somehow thats less offensive, when actually it's not because some really slim people would love to put on weight and for some reason a lot of them can't and it can be just as offensive to tell them to eat more as it would be if you told a morbidly obese person to eat less. The same rules apply here. I get a lot of people, customers at work, who tell me I should exercise more and then I wouldn't be so out of breath. Baring in mind these people are complete strangers who don't know me from Adam but because I look perfectly healthy maybe a little on the chubby side they feel like it's okay to comment on the fact that I'm out of breath and don't even seem to consider that it might be offensive to me in someway. But because I'm a nice person and don't really like awkward conversation I laugh and shake it off when inside I'm literally raging because is it really necessary to say that to me. 

It's the same with my voice, because of my vocal chords my voice is somewhat unusual and I'm very aware of my voice and conscious of how people perceive it and it gets even worse when I have a cold and whenever people make a one off remark about it I obsess about it because it really gets to me and I know it shouldn't because I don't know them but it does. 

So when this guy this morning decided that it was okay to question why I had my cough and presumed it was because I smoke too many fags I then spent the majority of the morning trying not to cough for fear of someone else making a similar comment.

It's okay when people I know joke about different things I have wrong with me because I know them and I can tell from their tone, their body language all that type of stuff what they mean by it and I know my friends and family aren't judging me. To people I don't know I give off this very confidant demeanour but inside I'm the most self conscious person I know. When I've spoken to someone I can go over that conversation in my head many times trying to think about the way I said something because sometimes I worry that I've offended someone because I can be quite blunt and sarcastic and if you don't know me then that can sometimes come across as me being off with you, when I'm not and that worries me that I might have offended someone. I'm very self conscious about the way I look, ask my family I obsess over my arms and I don't just mean little bit I really do obsess over them I hate the way my upper arms look. I can only identify 2 things about my body that I like, my eye colour and my hair (an even sometimes, especially on hot days that one can change) it used to be 3 until I had my line in and they gave me scars on my neck. 

Essentially what I'm trying to say here is people should think a bit more before they say things especially when it's people they don't know, something meant completely innocently could be the thing that throws someone off the edge. 

 Chat soon guys 
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14.2.14

Scenarios...

Happy Valentines Day Blogland!


I am relationship-less but that doesn't make me cynical or anti-valentines day. I like Valentines Day, I like that people tell their other halves how much they love them and I get to see lots of beautiful flowers and gifts all over Instagram, Facebook and Twitter. I still believe that you don't need a specific day to tell people you love them because I tell the people that I love that I love them everyday but I think Valentines day provides those who may have really busy lives the opportunity to just stop and think for a bit and show their partners, boyfriend, girlfriend, husband, wife that they do love them, not that they haven't all year but sometimes for some people life can be one big jumble of work, school runs, children, bills, stress, all the things that make life hectic and busy for some people. I'm not saying those people should go out and buy massive bouquets of flowers and lots of chocolate but Valentines day sort of reminds people to take just an extra minute to let their loved one know that they love them and that's what I like about Valentines day.  

I'm on a bit of a get people to sign up to the organ donor register tirade today if you follow me on any of my social medias you'll know lol. I'm losing my patience, like really starting to lose my patience with this whole waiting malarky now. People keep saying to me "it's going to be soon" and I know they are just trying to keep me positive but it's really starting to lose it's significance especially after all this time.  I keep going over in my mind what was significant about those days when I had my false alarms, was there anything that was the same on both of those days? Was there anything that I can replicate that was significant in meaning I got those calls? It sounds SO ridiculous even as I'm sat here typing this and I know it's just ludicrous and stupid because there is nothing you can do that will help you get your call. I've started putting my phone on my desk/shelving unit thing because I normally sleep with my phone in my bed and somehow in my mind I think maybe the universe thinks I'm being too presumptuous like "Oh she's so certain she's going to get her call that she sleeps with her phone so she doesn't miss it. So we'll just make sure it doesn't happen." So by moving my phone to my shelving unit this is somehow going to help me get my call. 

Then there's the days that I wash my hair, I'm almost positive my call will not happen on one of these days or more specifically after I have washed my hair. If that doesn't make sense I'll try and explain. So when I get my call, normally they make patients wash their hair before they go to theatre, now me, that will not happen. It won't happen because my hair is so thick it will not dry before or even during the surgery, on average my hair takes between 12 and 15 hours to dry naturally. By having wet hair they would be risking giving me hypothermia which nobody wants. After surgery it's going to be a while before I have a opportunity to wash my hair probably a week or 2. So this in my mind means that I'm likely to get my call on the day that I plan to wash my hair, where it's gotten to the gross greasy stage and my call will happen before I get the opportunity to wash my hair, therefore I will have to spend a ridiculous amount of time with rank hair. 

I'm almost certain it won't happen on a Saturday because the universe just wants to see me killing myself at work and therefore has a good laugh about that one. 

I reckon it's likely to happen when I haven't eaten all day or haven't had my dinner yet or just a point in time where I'm really hungry because the universe knows that once I get that call I can't eat anything and therefore will get it's jollies off of the fact that I will want to chew my own arm off.  

See I know I'm crazy, I'm fully aware of that fact but when you have been waiting for as long as I have all these little scenarios start to go through your head niggling at your brain sending you certifiably insane. 

So if you're going to do one thing today please let it be that you sign up to be a organ donor be it to show people that you really do care or to just simply stop me from going insane Join the organ donor register <3

Chat soon guys 
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9.2.14

Understanding...

Hey Blogland, 

 Source
Source || This quote applies to so many of my friends and I just love it!
So I'm currently writing an essay and as we all know I have the concentration level of a 2 year old and I'm taking a little break and therefore thought it would be a opportune time to write to you guys. 

Something I think about regularly and comes up a bit in my life is people understanding my situation and what that entails etc. My condition is quite rare what it stemmed from is not, having a hole in the heart is actually not very rare at all and certainly not within my family, having three though is unusual. Coming to terms with that, I would say, isn't all that hard. Then when I was diagnosed with Pulmonary Hypertension (PH) at 11 years old that was harder for me as it would be for anyone I think. I was scared, people were talking about transplant and drug trials and although I knew what they were talking about and was very happy that I wasn't kept in the dark about any of it, it was still very scary for 11 year old me. I actually burst into tears in a PE lesson at school after I had found out about it, one of the only times I have ever cried at school. 

I went through my teenage years feeling very isolated in regards to my health I was only 1 of 22 kids at Great Ormand Street at the time with this condition and most of them were real kids, if you know what I mean they babies/toddlers, I had nobody my age to really speak to about it. The good thing was I had understanding friends who adapted to being with me and didn't push me physically and allowed me to be me. So I never felt like I was missing out I just never went totally in depth about what my condition was or how it affected me on a day to day basis and I was okay with that because I liked to pretend I was normal and that was good for me at that point in time because that is what I needed to get through school, to just be normal like everybody else. Although embarrassingly at my year 7 award ceremony I got a achievement award for overcoming the odds or whatever it was along with two other people in my year who had other medical issues too. It was really embarrassing lol.

Then we get out of teenage years and I was starting to get worse and I felt like I needed people who understood me and what I was going through a bit more. I was 17 and I was in college and although I still had my school friends college was different, these people didn't know me and trying to explain the array of issues I had going on with me would be a horribly lengthy task. One of my best friends is from college so I obviously got there in the end with a few people but what I'm trying to say is, it's SO hard trying to find people that really understand what you're going through and can relate. It was around this time that I discovered the power of social media. 

Social media for those of us in my kind of predicament is paramount. I have a rare condition, so you're unlikely to find any-one who lives near you (although currently I do have one friend in the same town yey me) but social networks like Facebook and Twitter really help connect people and for people with PH we have our UK based organisation Pulmonary Hypertension Association (PHA) that organise events and promote our condition so we can meet each other and help each other. Since being put on list I've found these to be invaluable sources like the Heart Transplant Families group (the public and private group) because when it first happened I had so many questions that you sometimes don't want to ask your doctors and these have allowed me to talk to and meet people who have been through very similar situations and are going through them too and people who are the same age which make you feel less alone and seeing people who have been where you are and are where you will be in say 3 months times, 3 years time, 10 years time and so on is so motivating and inspiring and pushes you to go on because you can see where you could be or might be very soon. 

The problem is sometimes you see people who you went to school with and they all have these full time jobs and are having kids, getting married, travelling the world, buying houses etc. Sometimes I worry that I'm being judged I'm 23 and still getting my degree which won't be finished until next year. I still work where I worked when I was 17 going on 18 and sometimes people I went to school with come in and I serve them and I just feel like I'm being judged for still being there. Thats why I think it's essential for people like me to have a network of people who can understand why you're doing what you're doing and get the situation you're in. My sister sometimes asks me how I can be friends with people who I met through these social media outlets and it really is because of this very reason I have an immediate connection with these people simply because of what we go through, have been through and will go through that I don't have with people who I normally interact with. You can talk about things that aren't generally socially acceptable to talk about. Also once you start talking to them you get to know them as people, not just their illness, and become genuine friends with them. Obviously you come across a few crazies as you do in day to day life but the good thing about Facebook and Twitter is you can simply press the block button, simples :D   

A lot of these people are the reason you still have cool, calm and collected Stacie (with the occasional meltdown ;-) ). They help me answer some worrying questions I have, their positivity helps me to remain positive and there are my select few who I know I could ring day or night and they would be on the other end of the phone ready to help me if I needed it. I don't think there's too many people you could say that about in the world. 

Chat soon guys 
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6.2.14

Horrifically awful...

Hey blogland, 

source
So I have just returned from my GP's after having my monthly bloods done, fun times. I'm not doing so awesome it would seem. At my last Hammersmith appointment they upped my Flolan medication which should hopefully make my breathing etc. better but so far all it's doing is making me feel awful.

When I was first put on Flolan and all my subsequent dose changes since I haven't really felt any side affects but this time I feel like someone has run over me with a truck. My head is all cotton bally, I'm the most ridiculous shade of purple and I'm feeling so sick and nauseous. Last night I felt so weird, I can't even properly describe it I just didn't feel myself at all. My mum is the best mum ever and even stayed with me until I fell asleep to make sure I was okay. I honestly don't have a clue what it was but I think it was making me really anxious as well which wasn't helping, because I'm some-one who very much needs to be in control of everything and when something happens that I'm not used to or don't understand it makes me really anxious. Every-time I got near sleep I would wake myself up because somewhere in the back of my mine I kept thinking what if it's something really bad and I don't wake up? Ridiculous I know but because it was such a weird feeling I wasn't sure how to handle it.

I've only got to up the dose one more time so I'm hoping this feeling is only going to last a few more days, a week at most *fingers crossed*, or my transplant can just happen and then I don't have to get used to it at all haha!

I'm starting to worry a little with how many bad days I've been having, I can't actually remember the last time I felt completely okay. When I say okay I mean a good day for me, they all seem to be bad days at the moment if it's not one thing then it's another. I'm looking forward to not feeling sick, or ill anymore but in the mean time I have my extensive DVD collection, my cosy pyjamas and my amazing duvet to me company and comfortable lol.

I hope you are all well wherever you are and whatever you are doing :)    

Chat soon guys 
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3.2.14

Seeing Taylor Swift...

Hey Blogland, 

So last night I got to see Taylor Swift at the O2. It was quite frankly UH-MAZING! I've never actually been to a concert before... Yes, I know, I'm 23 and have never been to a concert. I've just never liked a band or person enough to go and see them in concert. Or I have I just have other things I would rather spend my money on. But back in October when I got the email to buy Taylor Swift tickets early, and I was really disappointed when I missed her on her last tour, I decided was going to buy tickets for me and my friend Rosie as her Christmas present. I made sure to buy really good seats as I figured if it was going to be my first concert I was going to do it properly and have really good seats, that and the fact I don't really do heights and trust me when I say the seats further up are pretty damn high and I can only imagine me being scared the entire time being sat up there lol. I was actually really surprised at how close our seats were I got Row N because I figured that was close enough that we would have a great view but not so close that we would be deafened but the sound boxes. But to my surprise we were literally only 3 rows away for the runway part of the stage which she performed on for quite a lot of it. 

I had such a great evening, it was awesome to be surrounded by thousands of people who were screaming and yelling and singing together. I'm pretty sure everybody in that place knew every single word to every song she sang, there was no need for her to sing at all really LOL. The only slight disappointment was that her 'surprise guest' was Sam Smith whom I have never heard of, I really wanted Ed Sheeran to be the guest, we are in the UK after all. Hey ho can't get everything in life can we? 

I think if I had a proper bucket list last night would have definitely ticked one off on the list :)

Here are a few photos I took so enjoy. 

Panoramic of the Arena 

Chat soon guys 
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