31.3.13

Easter Time!

Heya Blogland, 

Well today was obviously Easter day and although me and my family are in no way religious we still like chocolate and therefore we still think it's a great excuse to get some :). We also go and see our other family who live further afield and just quality family tim together. 

It feels like it was such a long day we spent a good hour and half in the car each way today which knackers me out for some reason. I don't know why it should because it's not like I do anything while I'm in there lol. I'm probably even more tired just because the clocks went forward here in the UK last night and I didn't get to sleep till 3:00am/4:00am and then was up pretty early as well.

So here are some pictures from today that I thought you might enjoy :)

Easter 2013: some lovely gifts from my mummy and daddy
On the Severn Bridge entering the land of Wales 
Me forcing James to do an instragram photo in the car :D
My cousin Emma with the little nephew Spencer
The lake we went to after Lunch lots of swans, ducks and seagulls.
My older sister Candice and my older nephew Jaydon

My older sister Candice, her fiancé Warren and littlest Nephew Spencer 
The family talking and what not
Megan and James swinging Jaydon around :)
Hope you like them guys, I very much had a great day and love seeing the family although very tired. 

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28.3.13

The Flolan Diaries:- New Friends...


Heya Blogland, 

source

Well today I got to meet the loveliest people!

As a general rule, with PH you don't get to meet many people with the same condition as you. Or you do but you rarely ever actually get to see them, in person. Which is why social media has become quite essential in regards to people like myself when it comes to getting to actually talk to people who can relate to what you are going through. I have quite a few PH friends who I talk to on a regular basis through Facebook, Twitter and other similar platforms but a lot of them live fairly far away and it's just not feasible to be able to see them very often if at all. 

Tonight however I got to meet a young girl called Erika and her mum Rachel and Erika's best friend, who actually live in Swindon. I've actually been talking to Rachel for about a year on and off but had never really spoken to Erika. Erika, who is 14, has recently been put on Flolan and although the pump is different to an adult pump essentially the beginning process is the same and Rachel and Erika kindly offered to show me how they do their night-time med change. I gladly said yes because practising is one thing, but I think it's definitely something you need to see first hand because when you're practising you're not sterile and you're not bothered about measurements etc. 

I went over to their house and got to witness it first hand and although it is still a little daunting because it is still an intravenous drug being put directly into your heart but we all had a laugh and a chat while Rachel did the meds and it certainly makes it seem like I should be able to do it too, once I get used to it.  There was obviously loads of things to get used to like different syringes different vials with the drug and saline and all that medical stuff but they sort of showed me that if you go through it step by step it should all turn out fine. Rachel was also telling me things that she originally panicked about but now she just works through it and it turns out fine. 

One of my fears is killing myself with an air bubble lol.   

It was so lovely to meet them as well because I don't have very many people my age that I get to talk to and there definitely wasn't anyone my age when I was Erika's age so even though me and Erika aren't close, close in age we can still totally relate to each other and talk about a lot of PH stuff and Erika and Rachel have really made me feel a lot more at ease with the whole Flolan thing as well. 

I still don't have a appointment through for me to have the pump line to be put in me but my consultants are just waiting for the imaging department to get back to them to let them know when they have an open spot. But the guy did say it would probably be around the 15th but he'll have to make sure.

I am off to see "The Host" tomorrow with my friend Gina, I'm rather excited to see it because I have been waiting for this movie since the book came out. I really hope they don't screw it up because I really did love the book! I will probably do a review on it after I've seen it.    

Write soon guys 

26.3.13

Room Makeover

Hey Blogland, 

Well I don't know if any of you guys remember me mentioning but I did say a few blogposts back that I planned on just refreshing my bedroom a little and finally it is complete. It took a while because I had to wait 3 weeks for my new bed and my wardrobe was just one massive disaster after another lol. But I did it eventually with loads of help from both my Mum and my older sister Candy who seriously did pretty much all of it for me bless them. All I had to do was buy the stuff :). 

So here we go My before pictures kind of demonstrate a tip and that is simply because I started to move some stuff and then kind of realised that maybe I should take a few pictures lol

BEFORE





AFTER




So guys I know the after pictures are still a little messy but I still have a few lose ends to tie up and what not but I really wanted to show you what I have so far :)

Hope you enjoy

20.3.13

The Flolan Diaries


Hey Blogland, 

Well I’m going to call todays blog “The Flolan Diaries”. This is because over the next month or so, if I don’t get my transplant that is, I will be writing a lot about Flolan and therefore if I’m going to write a lot about it then the title should probably be a good warning for you guys about what I’ll clearly be writing about. 

So today I made my way to Hammersmith with my mother, fairly uneventfully as they go, and today was “the talk” about Flolan. They basically went through the basics of the machine and showed me how to work it initially the easy way lol. They also wanted to know whether I had made up my mind about it or whether they were going to have do some convincing. I told them I wanted to do it because at the moment there’s no getting me off of my oxygen which pretty much sucks, I even had to ask to go on the hospital oxygen today because I felt awful which I never do because all you do is sit and wait while you’re in the hospital but hey ho thats here nor there. 

But basically guys I will be going on the Flolan as soon as they can fit me in which should be within the next few weeks which is all very exciting! Although there is still the small naive part of myself that still hopes that maybe I’ll get my transplant before I have to have it put in me and then all this worrying and decision making will have been for no reason whatsoever lol. In all seriousness I really hope it makes a difference though even if I don’t get my transplant before it happens all I really want is to be able to get off of my oxygen for a little bit or instead of all day just a few hours of something because thats starting to annoy me a little. 

But as of today, right now! I have been on the list 11 months which is slightly insane can’t believe it’s nearly been a year already that flew by!

I’ll have a few more posts up soon guys I’ve just been super stressed and nothing all that interesting has been happening for me to write about but just wanted to give you an update after today. 

OOOOoooo and a P.S. Massive welcome to all my new followers I hope I don’t bore you too much and maybe you’ll be a little enlightened as to life on the transplant list :)

Write soon blogland    


15.3.13

Bye Bye Google Reader...

Heya Blogland,

Well it would seem that Google Reader is disappearing, from what I have read it's Googles way of trying to force us to use Google +. Now if you've come here for answers then you are not going to get them because I am just as in the dark as you guys. I haven't got a clue what this means, whether we will lose all our followers etc. etc.

But I just thought I would let you guys know that I do try and follow as many of you guys as possible on google + (as some of you will know :]) I add you to my little followers circle so if some of you guys do have google + but it's not your primary profile then feel free to add a link at the bottom so I can add you to my little followers circle. My google + thinggy is just to the right under  my bloglovin button and my followers widget. Here's The link to my Google + if you want to add me to any of your circles :)


I also have Bloglovin and I'm guessing a bunch of you have already followed me over there as I got a few emails tonight saying so. So if bloglovin is what you use then please feel free to go follow me over there. I will definitley be trying to follow all my current blogs on their prefered platform.

 Follow on Bloglovin
 If anything this is just very annoying having to make sure your bloglist is somewhere thats not about to be deleted lol If anyone can actually help me to understand what the loss of Google Reader means that would be awesome :)

13.3.13

Bed and flat lemonade

Heya Blogland,

source

Well right now this very second I am supposed to be in hospital being shown pumps and being talked through the Flolan thing… but noooooo… My body has decided it wants to be violently ill. I think it’s making the rounds around the people I usually associate myself with. Apparently my Dad and my sisters Fiancée have had a dodgey tummy, not that I knew about it until this morning. “Stacie’s been really ill this morning” “Oh yeah! I’ve had a iffy tummy for the past few days” Thanks for the heads up guys! LOL.

In all seriousness it’s not too bad I’m just chained to my bed trying not to move too much because that’s when I start to feel ill. I probably could have made it to the hospital but that would have been really selfish on my part, I decided not to go because I don’t want to get a bunch of other patients ill, that would be really selfish of me especially when the ward I would have been on deals with stomach and bowel patients in particular and I can’t imagine adding a stomach issue to their array of other issues would be particularly pleasant.

Hey Ho, when life throws you lemons, drink flat lemonade :P.

My bedroom is coming along although in typical Stacie style I managed to order a wardrobe about 2cm too tall for my bedroom. I think I have an odd perception of measurement I really thought a wardrobe 240cm tall would fit in my room, but nope it didn’t. I have to exchange it for a shorter one so I’ve got the delivery people picking up the taller one tomorrow whilst at the same time delivering the shorter one. It’s going to be 201cm tall which is still pretty tall but I just didn’t want a gap in-between the wardrobe and the ceiling, I suppose the only way I would achieve that is if I got a specially fitted one and that’s a tad expensive. My bed arrives next Friday which I’m really excited about I currently have a single bed but it lifts up and that’s a great space saver so I’ve now ordered a double bed that also lifts up so double the space to stick all my stuff. I avoided buying a double bed when we initially moved into this house just because I couldn’t be bothered to buy a double mattress lol I have a double duvet because I like a lot of duvet cover but really just couldn’t be bothered finding a mattress and all that stuff lol. I’m spending a lot of my savings but I’ve recently found myself thinking, what if I did die? I don’t need a bunch of saving when I’m dead, so I would rather spend it on things I actually want and a wardrobe, a desk, a shelving unit, a bed and a iMAC is stuff that I’ve wanted for quite some time so I figure why the hell not? It’s probably driving my mother insane because the upstairs part of our house is kind of a mess while we wait for my new wardrobe but hopefully after tomorrow it will be much better :).

                         Righty Ho I shall leave you guys alone now and as always I will keep you updated.

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10.3.13

Foundation Reviews

Hey Blogland,

Well I thought I would do a review of two of the foundations that I have been trying recently I have given them a few weeks to really be able to give my opinion on them, but before we get into this I would just like to say that I’m not some-one who know loads of things about make-up, the correct terminology all that stuff. I’m just a normal girl and this is just my opinion on them :]. 
 

Loreal Paris True Match foundation


When I first tried this I really was not a big fan of it but I literally just took off my previous foundation with a make-up wipe and put this on two seconds afterwards because I really wanted to try it. I really hated it initially but I made sure to not be totally deterred by my initial impressions and therefore tried again. I made sure to prep my face properly and then applied it. Now it wasn’t as bad as the first application but I’m still not impressed by it. It’s got what I would call a sticky texture to it and for me that just doesn’t seem to go away It makes me feel gross, I prefer a much more matte foundation and this just doesn’t do it for me. I will keep it and probably use it if all my other foundations ran out or maybe I’ll keep giving it a go and one day I might like it, but for now it’s just not my cup of tea.

MAC Studio Sculpt foundation and studio finish concealer
 
 
Now these I loved immediately! The concealer is really, really good very similar to Benefits “Boing” but I think I prefer the texture to MAC’s studio finish. It covers redness and blemishes really well and even the dark circles I have under my eyes which can be very prominent. I would most certainly recommend it and definitely worth the £14.50 you pay for it.

The foundation has also become a firm favourite of mine and I think its one of those products that “does what it says on the tin” or in this case the tube lol. It provides a extremely flawless finish or as MAC describes “satin finish” which doesn’t cling to dry patches that my face tends to get which I love and can be quite hard to come by whilst also still achieving quite a matte/flawless finish. I prefer a matte base to my face because I like to add dew/shine in later with highlighter and blush. I also love that it is cheaper than my favourite Clinique foundation as it is only £24.00 but I know this is still a little pricey but definitely well worth it as I think the tube will also last quite some time, so definitely a good investment :).

Here are the links to both foundations and concealer so if you want to purchase them there you go :]
Loreal Paris True Match Foundation
MAC Studio Sculpt foundation
MAC Studio Finish Concealer

Talk you soon guys :-D

4.3.13

Let positivity reign!

Hey Blogland,

I cannot express into words what a relief today was.


source
The past 3 days have been sooo stressful, I went to work on Saturday and even they noticed that I wasn’t myself and I never let my medical/personal issues interfere with my cheerful demeanour at work but I just couldn’t do it. Put on that mask that I put on for everybody to see. So for the past maybe 2 weeks I haven’t been myself trying to decide what I should do for the best and Friday really was just the straw that broke the camels back. So Thursday, Friday, Saturday and Sunday night I think I got 2 hours sleep on each night and I’m someone who can get by on zero sleep if I have to if it’s a one off but 4 consecutive nights of literally zero sleep is a killer.

This morning I was actually worried I thought I was going to go in and see my consultants and get a massive telling off for stopping my Iloprost but to my surprise my Doctor was completely on my side. We had what I would call a very “grown-up” conversation and he listened to everything I had to say and he told me that he totally agreed to me coming off the Iloprost so long as I didn’t feel worse for doing so. Which I proceeded to tell him it was in fact the opposite I still have chest pain but not the crippling kind that I was getting after doing my Iloprost. I’m still not well it’s not like stopping the Iloprost has by some miracle made me better it has just made me feel less ill, does that make sense? He also went on to say I lasted a lot longer than most do on it which is was surprised at because he thought I was going to stop back in September.

We proceeded to talk about my transplant progress, which obviously there is non lol. Then he asked when I was next seeing Papworth and I told him that I saw them on Friday and I told him what happened when I told them I had stopped the Iloprost. Once again to my surprise he was completely on my side, he told me that it was ridiculous that they would think that I have no discipline with my medication, and he then asked me if I had met this doctor before to which I said no. Then that seemed to make perfect sense to him, he continued to say that if the doctor had taken the time to look at my notes he would realise that I had been taking all my medication as specified by my doctors since I was 11 years old, and if he knew anything about PH and Iloprost he would also realise what a feet making it to 10 months on the stuff was. I really felt like I was in an alternate reality because I couldn’t believe that the doctor which I always thought never really got me was agreeing and saying almost everything that I had been saying to myself for the past 3 nights.

He told me not to worry and that he would be giving Papworth a ring to reassure them that I am an extremely reliable patient and I always do as I am told and I had been advised that I could come off of my Iloprost if I felt I needed to do so, so it wasn’t like I was doing it completely against medical advice as I stopped it as I was advised to do, slowly.

The conversation then took a turn to what I should do next in regards to my medical treatment, and basically he told me that there was no other treatment option besides doing nothing, in which case I would probably be dead pretty soon or do the Flolan and he went through all the negatives and positives and I just felt a lot more at ease about it than I ever have done. I told him that I have been avoiding it since September to which he replied “I Know!” LOL because that is when the doctors really wanted me to go on it. He then continued to explain that he had to wait for me to be ready to go on it because if he forced me to do it then I probably wouldn’t have been careful with the drug treatment or sterile or any of the other stuff you have to be with Flolan. He had to wait for me to want to go on it because then I was more likely to do everything I need to do to make sure I don’t die with it. He tried to explain it in terms of transplant, he knows transplant patients who really wanted to do it and wanted to get better and wanted transplant to work desperately and therefore after their transplants their recovery was amazing they bounced back with vigour and they got to really live. But then there are the other patients who just go on the list out of obligation they feel like they just have to do it because that’s the next step, they don’t really want to do it. They have their transplants and although yes they don’t have PH anymore but they aren’t living the way they should, the way their transplant really does allow them to and a lot of these patients end up rejecting. He said he wanted me to make the choice to go on the Flolan because he didn’t want me to be one of the people who don’t do so well.

So after today I feel sooooo much more positive and just relieved. My parents and I have to go back in the next week or two where they will give me some pumps to take home with me to get used to and get to grips with and then we will arrange a date where I will have the pump fitted. It’s really scary but I think it will help and hopefully improve my much diminished quality of life.


Ahhhhhhhhhhhh (sigh of relief)

In other news, or actual news should I say, I was in my local newspaper last Monday and today I have updated my features page and you can go check them out there or just click here to get diverted there.

I have a few exciting posts coming up soon, my bedroom make-over and a foundation review as well of my most recent foundation purchases MAC studio sculpt foundation and my Loreal Paris Match perfect as well :).


Thanks for reading guys and I hope I didn’t bore you too much.

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Lots of love guys and thank-you for all the support it really means a lot!

2.3.13

Misunderstood

Me as Mario
Hey blogland,

Well I just got in from a very busy day. Firstly I didn’t sleep last night which meant I was going to Papworth on zero sleep which wasn’t actually too bad because I thought hopefully the car journey would send me to sleep and that’s 3 hours long but no because of all the traffic as it we were driving in Rush hour traffic which seems to go on for at least 2 hours. This meant the car journey was pretty jittery and I couldn’t sleep at all. I got to Papworth where we did the regulars, bloods, weight, blood pressure and a chat. Then we were called in to see the consultant. Now I love the Papworth team they are just the loveliest bunch of people but the guy I got today, I have never met before and didn’t feel like I related to him very well at all.

So I let them know that I have officially stopped the Iloprost because it really was becoming too painful to carry on doing it. I did as Hammersmith had said, if I was going to stop it I had to stop it gradually which I did. But this guy turned it into “You do know you’ll have to take ALL of your drugs post transplant?” YES!!! Of course I know that you condescending idiot. He made it seem like I have no discipline with my meds. I think I have a lot of discipline with my meds I lasted on Iloprost 9months without complaining even though I was in a horrendous amount of pain the entire time! I couldn’t put into words how much it hurt, there were days that after I did my Iloprost I just wanted to cry and curl up and die because my chest hurt so much. Now I’ve stopped it I obviously still get my chest pain but it’s my normal regular chest pain not me doubling over in pain, chest pain. This guy just didn’t get it. If he knew me he would know that I have taken and been so good with all my medication for the past 11 years, but he doesn’t know me so it just seemed to him like I was some jumped up little girl doing the doctors jobs. I have done EVERYTHING I have ever been told in regards to my health, but it never hurt me to do that, I was never in physical agony and the one time I decide to think for myself and so something about it. I just feel like that guy was judging when he doesn’t even know me.

The nurse I had was super lovely I don’t mind if I have her again I feel like she understood me and where I was coming from. I think I’m going to have to ring Papworth next week to try and explain myself.
After leaving a feeling pretty awful about myself we came home I got no sleep in the car again but managed to get about 2 hours when I got home. Then tonight was Roller Disco night for my sisters birthday every-one decided to dress up in 80’s themed stuff. Most were in fluorescent stuff and crimped hair. That was me but then the person who was supposed to be Mario decided that the outfit wasn’t exactly flattering lol so I said I would go in it because James didn’t want to be Luigi all by his lonesome. It was really fun and I got to take loads of photos and just chill and people watch :).

So that was my day. I have a Hammersmith appointment on Monday where hopefully we can figure some stuff out but at the moment I feel like no-one is helping me. My parents keep telling me it’s my decision, useful! The doctors at Papworth just listen but aren’t offering a resolutions because obviously they’re just waiting for me to have my transplant. Then Hammersmith just aren’t listening to me when I say I’m in pain surely that should ring some very large alarm bells in their heads and decide to do something else? Right now I just feel like I’m fighting a battle pretty much by myself. I know it is my battle but I just wish I felt like I had the doctors help because right I don’t feel like I do and it sucks.
Hoping Monday provides some result.
Night guys have a great weekend :)
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