Reminiscing ☀

This weather is absolutely gorgeous don't you think? Well, it may be a little too hot at night but in the day, oh it's amazing. Having nice weather just puts me into a reallyyyyyyyyyyyy good mood and I love it. And it also makes me reminisce. Monday night me and my brother went on a walk with Fudge just to the local recreational park. When we got there we immediately started jumping on the trampoline which wasn't a very good idea but honestly it felt so good; even Fudge was on the trampoline. And then there was the swings, I remember when me and my friends would go to this same park when we were young and the swings would always be the first thing we went on. Swinging on the swing (LOL) didn't make me out of breath or feel funny which was really good, I felt like I was finally doing something that I used too do as a kid and enjoy it.  When I was younger I was quite an active child, I went out nearly  every day with my friends to the park, I played netball, I did horse riding and nearly every weekend I would go swimming. Till about year 8 when I really started to struggle most of it stopped and I just found myself doing less and less as time went on. PE became the hardest one of them all. When it came to the day of PE or Games as my school called it I would always ask my Mum for a letter; most days it would be a yes but sometimes she would say no and I would get so anxious and cry about the fact I had to do Games. Like most parents they just assumed it's because I was lazy and unfit but then it got worse. I ended up writing my own notes to get out of Games because I knew I just wouldn't be able to do it and I didn't want to be humiliated in front of everyone because I couldn't keep up and felt funny.  I remember when me and my Dad and Jackie went to the Lake District camping (before I got sick), and I was so excited for it but when we arrived I realized what was to come. LOTS AND LOTS OF UPHILL WALKING. It was a good holiday and it was a bad holiday; for the pure fact every single bludy day we were walking up hills and in the valleys. Yeah I didn't enjoy that bit at all. Sometimes me and Jackie speak about it, and just laugh because Jackie would stay behind with me as Dad walked on further and I'd complain about being tired or out of breath and Jackie would quite simply tell me to stop complaining and get on with it.

 I don't know why we find it so funny looking back, but we do and honestly laughter is the greatest medicine. It's just days like Monday when I do something that I used to do as a child that I haven't done in a long time where it kind of hits me how much everything has changed. I guess you don't really realize what you have until it's gone. Of course there were days when I was young that I would complain about going out and now I wish that I could just go back and to do it. Even stupid little things like going up the stairs, that shouldn't be hard work, that should be easy, something that every one should be able to do without being in pain. But it's not, it's one the hardest things I and many others do daily. I can't remember the last time I walked up the stairs without being breathless and in pain. Or the last time I went out and didn't have to go home early or didn't cry about the fact I was in so much pain.
 I miss a lot of things and I do have the odd day or sometimes the odd week where I just think 'shit'. But I wouldn't change it, well actually I would change one thing and that would be that there's a cure, but apart from that I don't think I would change anything. It's made me appreciate life a little bit more than your average teenager I think, and before I do anything I say to myself "If I don't do this, I'll regret it and I need to have no regrets with the time I've got". It is difficult being different but as time goes on I learn to accept it more, and yeah it does make me sad that I can't do half of what I used to do but it's made me who I am and it's a part of me, I can't get rid of it so all I can do is try my best to be happy with it and accept it; and with that comes change.
Love, Erika

2nd Hammersmith Clinic

Sunday 14th June 2015
Okay so for about a month I've been trying to budge this terrible cold somebody kindly gave me, last week it finally went completely and I've never been so happy!! Usually I can just deal with colds as I'm used to getting them regularly but I wouldn't class this as your every day cold. I couldn't hear properly, I couldn't sleep, I had the most awful throat and I could barely speak because every time I tried too speak I would end up having a coughing fit, it wasn't fun at all. I ended up having 2 different course of antibiotics; the first lot didn't touch it and I actually ended up getting worse and the second lot made it get worse but I new it was getting better as I could start too hear again (the second lot definitely did the 'it will get worse before it get's better' type of thing). I can tell you now, I will never take my hearing for granted again!!  (This was written on the 14th of June but as you can probably tell I never got round to finishing it, so I've inserted it here because it's relevant to the whole blog post today being 'general life update', however I did recover really well on the fourth week of having it and hopefully I won't be seeing a cold for a while).

Tuesday 30th June 2015

Today I had my 2nd Clinic appointment at Hammersmith and it was very interesting too say the least.

At Hammersmith they do everything back to front compared too Great Ormond Street. At Great Ormond Street the same thing would happen EVERY time; echo, ECG, 6 minute walk test, MRI or CT, and an exercise test every 6 months to a year and then after the tests your Doctors would review the results from the tests briefly. I would then have my consultation and leave with some sort of result and some information on how well I'm doing or on any deterioration they can see.

At Hammersmith there are two options with how you would like your outpatient's appointment too go. 1) have your consultation FIRST and then do the tests after which involves a lot of sitting and waiting around in waiting rooms or 2) go into the day care ward with tests first and then a consultation with the PH team

On my first appointment we had no idea about the 'day care' so we had the consultation first and then Echo and a 6 minute walk test and then that was it. Honestly it sounds easy but it's really not, it's emotionally and physically draining and we were up at 5am and didn't get back till 5/6pm with patient transport. I did write a post on my first trip which you can read here >First Hammersmith Appointment< but honestly there wasn't much to tell you so you've probably forgotten so I thought I'd recap it a little in this post. But at my very last GOSH clinic we were told they could see a little bit of deterioration. As  I had been transferred to adult care it's basically like starting ALL over again and as the consultation was first we got no information or results at all.

Today was so much better than my last appointment, everything was just so so so much easier and better. One thing that does help with Hammersmith is that they seem to be on time more than GOSH were with tests and actually book appointments where as GOSH would just send you to the particular place and you'd have to wait and wait until a space freed up.

Anyway so we got the 09:11am train too London Paddington and from there we got a taxi too Hammersmith. I'm not sure if I've mentioned this previously but the hospital is directly next too Wormwood Scrubs prison for men which puts me on edge but what can I do haha. Let's just call it a 'fun fact'. When we arrived we went straight to a ward for Kidney patients but the PH team in Hammersmith have a few beds there.

As soon as I sat down there was this lovely lady who spoke to me about taking part in a research study of people with PH. This involves looking at my blood and seeing if theirs any mutations or extra things that shouldn't be there which then all goes towards a case study to try and find out new information to further Doctors and Scientists and our knowledge on PH. And to hopefully find some new treatments and medications to cure or too slow the disease down. There was a lot of paperwork but I gave my consent and I'm so glad I did, well I was until she said she needed blood from me TODAY. I hate needles and cannulas especially, I have my bloods done monthly and it's only until recently I've stopped using the magic cream that numbs your skin. I let her do it, and it was so painful and it wasn't your average 30 second blood test, it was minutes which felt like hours but still that's besides the point. IT TOOK FOREVER.

After she had taken my blood I got changed into gym type clothes ready for the exercise test. If you've EVER had to do one you know exactly how I felt and how hard it is. But for those who don't you're bludy lucky but I'll explain. The exercise test involves sitting on a exercise bike (stationery bike) and basically peddle yourself, starting from going downhill, to biking on a flat surface, to going uphill by them increasing the incline. But really it's not that simple; you're covered in wires. So you have the ECG wires on you with those horrible gunky stickers, an oxygen sensor on my right hand middle finger, a mask on my face covering my nose and mouth and obviously Martin hanging at the side but that's nothing new. I'm not going to lie, it was really hard. I haven't done one in a while but I new what to expect but it still was really hard. I have no idea how long it took, I just kind of started, did it and then stopped. Gradually my legs started to give up, my hands were shaking and I was breathing too fast for me too even catch my breath so that's when I knew I had to stop or I probably would've collapsed. Lol, fun. I rested on all the machines for a few minutes, then came off the bike and had 5 minutes too myself. The two people taking my test were soooooooooo lovely and actually told me that I put so much effort in and too them the graph looks good but they don't know figures which I was super pleased about.  After the exercise test we went for an MRI which is the really long machine, NOT the one that looks like a donut (that's a CT scan). I was told too get into a gown and too wait for them to come back. When they did they told me they needed to give me a cannula and my face dropped and I just burst into tears, honestly out of everything cannulas and needles are the worst for me. Anyway, we had a conversation about it and during that I bought up my pump Martin and asked them if they had everything set up for me to go in. My CADD Legacy pump is not compatible with an MRI machine because it has magnetic components, so at GOSH when I had an MRI they would make up my Epo like I do in the evening and put it into a MRI compatible pump which in this case is a huge great big syringe driver put with an extra long line, it's huge but it works. I told the man this and I have never seen anyone so confused in my life, he told me he was going to get somebody else too see if they knew and they didn't so she said she'd get the department manager. Well he came and he was none the wiser. He had no idea what I was going on about just like the others and told me that they don't have a pump compatible for the MRI machine, just great. HOW DOES A HOSPITAL WHO IS SUPPOSED TO CARE FOR YOU NOT HAVE THE RIGHT MATERIALS TO DO SO. I just can't believe they didn't know and I'm more shocked that my consultant didn't know I couldn't go in with it!! I was so discouraged, I honestly couldn't believe my ears. But to be honest I was quite happy that it worked out this way because it meant I didn't have to have the MRI which means no cannula and no contrast dye (the contrast dye goes into the blood via a cannula in a vein which helps highlight certain parts of my heart and lungs too produce clearer images). Not much really happened after that, I didn't do as many of the tests as I expected because they alternate what I have done every time I go up. I had a consultation where we discussed a few things, treatment wise and the now. I don't really have any results because my consultant kindly told me that actually regardless of whether I'm getting sicker or better I'm still on all the treatment they can offer me so what's the point in worrying about figures when I'm doing all I can. But apart from that, we left at around 14:30pm and was home by 16:15pm. It was one of the most enjoyable outpatient clinic's I've ever gone too, it sounds ridiculous but I was in such a good mood considering everything I had too do. I think the weather has something to do with it, and maybe the fact I found a load of old tunes on my iPod so I listened too those pretty much all day! My next clinic is in Bristol so less travelling, a shorter day and much closer. Brilliant. Oh by the way, I've set up a Facebook page for my blog, I'll link it below so if you would like to follow me you can which will make sure you're up to date always with blog posts and what I'm doing, as some times writing about your life can get a bit much. I'm really sorry if there are any typos, I've done my best on such little sleep and a long day, but if there's anything that reads really bad feel free to let me know! Thank you for reading and speak soon guys!
Love, Erika
Facebook Page - https://www.facebook.com/erikacestlavie?ref=hl

Inspiration ♡

So recently I've been a bit distant on the whole social media front, mainly Blogger and Facebook and it's really hard to explain why but I'll try my best. 
So a few weeks ago, my very good friend (and ex PH sufferer, ooooo there is so much joy when I say that yay) Stacie Pridden who I think I've mentioned in a previous post a while back, got her call. Now 'the call' or 'her call' if you're not in the transplant world means that they've found a match for organs. And in this case they found a match for Stacie's organs (her heart and lungs). Stacie has been on the transplant list for 3 years and she's also had her fair share of false alarms so everyone had their toes and fingers crossed and were praying that this would be it for Stacie, that she would finally get her transplant. 
And she did, SHE GOT HER FRIGGING TRANSPLANT GUYS. AND SHE WAS OUT OF HOSPITAL QUICKER THAN YOU CAN SAY 1 2 3 AND NOW SHE'S AT HOME AND RECOVERING AND SHE CAN WALK AND GET UP THE STAIRS WITHOUT STRUGGLING TO BREATH AND AND AND SHE DOESN'T HAVE TO WEAR AN OXYGEN TUBE ANYMORE AND WOW.
It's absolutely incredible, the day she got the call I cried, with happiness but also because I was scared. Honestly the first thing I said was "Shit, I spoke to her half an hour ago, what if I don't get too speak too her again because it's such a delicate operation and what if something goes wrong". Goodness knows how her family were feeling, I was an absolute mess. I was genuinely scared for Stacie when I saw that note on Facebook from Candice and it wasn't even me!!!
Unless you've had a transplant or have been asked to consider a transplant you don't know actually know as much as you think, and I must say, sometimes I meet people and I tell them about transplant and they say "Oh well if you were my daughter you wouldn't have a choice". And that's because it's portrayed to be a simple thing having your organ's replaced, people see it as a quick fix sometimes and don't actually know what happens after. They think 'Oh as soon as you've had your transplant you can do all these amazing things that you couldn't do before'. Yeah part of that is true but what people don't know is that you have too teach yourself how too breath again, how too cough and you've got strict medication rules to stop rejection. For the first month after being home you have to have weekly visits too the hospital; there is so much more to having a transplant of this kind.
I was worried for the operation and for all the recovery and steps that happened after. But she proved me wrong that I had nothing to worry about, the women got her chest drains taken out with NO pain relief for goodness sake!!! And now less than a month after transplant she's home and going on walks and she's already getting ready too go to Wimbledon. There is nothing stopping her at all and it's absolutely inspiring and I'm so lucky too know this incredible lady. I cannot thank the donor and their family enough for quite frankly saving one of my best friends and for giving her a second chance at life and allowing her too inspire so many people, including me. 
Transplant is something that I've been asked too consider, and I've had a lung transplant assessment about a 2 years ago now so that they could get all the figures and facts in case I want to be put on the list. I don't. But something happened when Stacie had her transplant, it made me feel different and funny. I don't know how too explain the funny feeling, so you either get it or you don't and if you don't that's okay, you're really not missing out on much. Anyway it hasn't made me go GET ME ON THE LIST NOW I WANNA DO IT. Because it certainly hasn't done that. Lots of things creep me out and scare me with having a transplant and some things absolutely petrify me because I'm not very good with pain at all. Obviously there are so many benefits to me having a transplant but one thing that really get's me is that, there's no guarantee that your body will accept the new organs (in my case lungs) and it could be rejected straight away, which means I wouldn't have long too live (days or weeks) before I passed away because of it when I could of had a few more months without it.   However it has got me thinking about the possibilities, the negatives and positives. The things I could potentially do after I've made a full recovery and the places I could see. But there is a lot to think about but maybe this is a start and this is all down to Stacie and her amazing donor and donor family. And I honestly can't thank Stacie enough for being who she is and for being such a huge inspiration too me and the donor and their family for giving her the chance to continue being the amazing person she is and for giving her a second chance at life. 
Bring on the bucket list Stace. 

As always, thank you for reading 

Love, Erika

Bored bored bored

Hey guys, guess what? I'm bored.

So about a week and a half ago I came down with the most terrible sore throat, it was like razor blades in my throat and I thought I had tonsillitis again. Right now I actually wish I had tonsillitis, instead I've accumulated this horrible dry mucus cough (gross) that went too my chest pretty quickly and has resulted in endless sleepless night and being house bound. Oh and don't forget the blocked nose which doesn't help as I can't breath well enough already!

Yesterday, Mum managed to get me an emergency doctors appointment, which turn out to be the biggest pile of crap ever. We ended up discussing my disease for the majority of the appointment because they don't like too give you the same Doctor, and then when it came down to discussing this horrible cold, I was told that it will "soon go". Great advice, he clearly wasn't there for the 15 minute conversation we just had about my disease, and that it's very risky for me to have a cold because it can cause all sorts of problems. Mum then had to remind the doctor that because of the treatment I'm on, I can't take Beechams Cold and Flu capsules (and other medications like Ibruprofen, Nurofen etc) as they interact with my drugs and can cause heart problems. 

Anyway, they finally prescribed me some Antibiotics which I was told to take only if I get worse. Yeah, he clearly wasn't there for the whole entire conversation about my disease, where Mum also specifically highlighted the fact that I'm struggling already and if it gets worse I could end up in hospital.

Today is my first day on the antibiotics so hopefully I will start too feel a little better by tomorrow! At the moment I'm house bound and I'm trying my hardest to rest as much as I can. It's really weird actually because before I started work and my apprenticeship I was off a lot of the time at school and sixth form, and I don't even know how I managed it, especially when I was off for those four weeks.... I'm so so so bored!! 

I can't wait too feel better, I've completely forgotten what it feels like to not have a blocked up nose and to have a decent nights sleep. 

As always, thanks for reading!

Love, Erika

5th May World Pulmonary Hypertension Day

• What is Pulmonary Hypertension (PH) ?

Pulmonary hypertension (PH) is a rapidly progressive disease which affects the lungs and heart. It is characterized by high blood pressure in the arteries of the lungs. There are 5 main types of PH which affect patients in different ways, all of which can lead to heart failure and death.

• What are the symptoms?

PH is a personal condition and symptoms can vary in each individual, common symptoms may include:

Breathlessness
Blue lips
Fatigue

Educating people to recognize the symptoms of PH could save lives.

• Treatment

A range of pharmaceutical treatments are available but they only treat 1 of the 5 types of PH, called pulmonary arterial hypertension (PAH). There are currently 0 cures for 4 of the 5 forms of PH. The only potentially curative treatment available is surgery for 1 form of PH called thromboembolic pulmonary hypertension (CTEPH).

Some patients are eligible for lung or heart transplant, although this is not always possible due to lack of available organs, or patients not being suitable for surgery.

Accurate and early diagnosis and treatment followed by continuous treatment monitoring can mean the difference between life and death.

More research is needed to improve understanding of how all 5 types can be treated effectively.

• Who is affected?

It is thought that there are more than 25 million patients globally. One of the rare types of PH, called pulmonary arterial hypertension (PAH) affects approximately 52 people per million.

People of all ages, including children, can develop PH although it is most likely to be diagnosed in people between 40-50 years of age.

• The impact of PH

50% of patients die within two years if not treated. The death rate for pulmonary arterial hypertension (PAH), the most studied form of PH, is higher than both breast or colorectal cancers. PH can have a profound impact on many aspects of daily life such as having difficultly climbing stairs or simply getting dressed.

• Time matters for people with PH

Diagnosis of PH takes approximately 2 years due to delay. Symptoms are often non-specific meaning PH is frequently mistaken for asthma or other conditions. PH is a rapidly progressive disease and time lost in it's progression cannot be entirely regained. With earlier diagnosis and treatment, survival and quality of life could be significantly improved.

Thank you for reading and I hope this has given you an insight into PH. Love, Erika *All information has been from the PHA Europe Website* http://www.phaeurope.org/

Out with the old and in with the new..

Hi guys, I bet you're all really impressed that I haven't waited weeks or months too write my next blog post!! Anyway, in my previous post I said that things were going to be changing and as you've probably all noticed by now the layout has completely changed and so has my theme. I've ditched the pink because I wanted a more classy look for my blog and I ditched the 'Tinkebellaaaaa' name. (I am not in any way saying that some one with a pink blog is not classy, all I'm saying is that as my knowledge of blogging has expanded I've noticed a few things and this style definitely fits better for me and my blog, in my own personal opinion my blog now seems seems more classy than the bright pink). STOP BABBLING ERIKA AND JUST GET ON WITH IT. Anyway, at the time the pink and the name 'Tinkerbellaaaaa' worked for me because I had just started out with blogging and had pretty much no idea what I was doing, but as I've grown up and my blogging has expanded I have actually ended up not liking the name 'Tinkerbellaaaaa', I still frigging love Tinkerbell though. Sooooooo to replace it I've named my blog C'est La Vie which is a French phrase for, 'That's Life'. Now this blog is mainly focused on my life living with PH so in my personal opinion it fits better for me and this blog, because this is MY life and that's how it's supposed too be; my disease is unavoidable and that's just life.
In my last post I also said that I've been doing a lot of research too do with blogging; something that popped up while I was doing research was having a signature at the end of all your posts. Now it wont work on previous posts but it will work on posts from the day I set it up which was today, now I've done it, I'm not quite sure on it, what does everyone else think? I think the writing is too big compared too the rest of my blog but I've tried too change it and I can't. What's everyone's opinions?   Thanks for reading guys and I can't wait too hear some of your opinions on my signature.
Love, Erika

Goodbye Winter.

Owhhhh I hate winter and I'm so glad it's finally going! I've had a stinking cold for about 3 weeks now and it's absolutely draining me. All I do at the moment is go to work and sleep. Oh and I've been going to a few hospital appointments too so you can say I haven't had an exciting time of it lately.

It's been so up and down, so much has happened and it definitely hasn't been a normal few weeks recently.

Two weeks ago I had my last ever GOSH appointment and last week I had my first appointment at Queen Charlotte's and Chelsea Hospital (QCCH), and my monthly bloods at GWH. ITS SOOOOOOOOOO DRAINING TO SAY THE LEAST. I'm glad it's all over now though because now I can just get on with life with no interruptions for at least 6 weeks (which has now changed to 3 weeks of no interruptions with lots of phone calls and stress because I'm petrified), pretty sad too look forward to having no hospital appointments I know but they are very draining and it's nice to have a break for WEEKS instead of a few days or a week. 

But really it's not all over as I'm already having problems with Hammersmith and Queen Charlottes and Chelsea Hospital, which isn't making my transfer easier and I haven't even met the Hammersmith PH team and I already hate them for all the drama and stress they've managed to cause already. It's actually really upsetting because I feel like I've been chucked in the deep end, and I was told I would be introduced to the team over the phone and I would be told about the clinic appointments and what would happen, but I haven't had that conversation, and they've gone and booked me in at Hammersmith in 3 weeks time for a PH appointment at and I have no idea what to expect? I'm so scared and as well of all of this I feel like I have no one to turn too about it as no one understands and most people think it's so easy, I tell you now it's really not.

Anyway, enough of the boring, crappy stuff. On to the more exciting 'stuff' (there's not much).

KATIE GAVE BIRTH TO SAMSON THE CUTEST LITTLE BOY EVER AND HE'S SO DINKY AND CUTE AND AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH. Samson was born on the 12th February, and was only 52cm long/tall, I'm not sure how long/tall he is now but he is still so dinky. I haven't met Samson yet but from all the pictures I've seen he is an absolute cutie, and Jools and Katie are the most amazing, perfect parents ever. I've appointed myself as Auntie Erika because he is just the cutest amazing little boy ever.

Thank you for reading and I have no clue when I'm going to write another post so don't hold your breath!

Love, Erika

I'm still absolutely petrified of posting this but here goes.

I'm back to blogging, well sort of? Lets just see how it goes.

This post wasn't actually going to be about 2015 so far, but because it's been so awful, I haven't done anything exciting that is worth writing about. So January 2015 it is.

2015 is already not my year at all, January has been absolutely terrible and honestly I can't even begin to describe how I've been feeling and whats gone on. Let's just hope February is better but to be honest, I don't really have high hopes. I've had a really bad start to 2015 and nothing seems to be going right at all.

• I've been feeling rather up and down recently, good days and bad days. Mostly bad at the moment and I have a few ideas why. 'Friends', my accidental overdose, my apprenticeship, my last appointment at GOS, moving to Hammersmith and Fudge. I've been trying to take my mind off of everything by seeing friends and family, going out, listening to music (preferably Jessie J or S Club 7:The greatest hits, always a few good motivational songs between them) and doing coloring (it's actually a very good stress re-leaver and it makes you relax, well it does for me anyway).

• No one knows about this except family as I didn't want to go shouting about it at the time. At the beginning of the year, I had an accidental overdose in medical terms. I had two ambulances out to me and quite a few people in my house. Basically, I had a migraine and wanted relief for it, so I had to take 1 morphine based tablet. Well instead I had mistaken morphine for paracetamol (where I would usually take 2), and I took 2 instead of 1. PLEASE DO NOT DO THIS. I have never had an experience like it, nor do I want to experience it again. One minute I was fine, the next minute I couldn't see, my pupils were constricted, my breathing was slowing and it felt as if someone was sat on my chest, I was boiling hot and sweating like I was in Africa and Mum had to fan me, I felt sick, I was shaking, and I couldn't feel my body. I literally felt like there was nothing to me, all I could feel was my head. I was violently sick multiple times and my headache was still there. Because I was unable to breath properly (well my properly anyway, which is pretty heavy and slow anyway) I was terrified to go to sleep as I didn't want to stop breathing and die. Because of my disease and the fact I felt so terrible, Mum and myself decided it was best to call 111. I was pleading for an ambulance and I never ever want to go to hospital all call an ambulance unless it's life and death, and I felt like this was. 111 sent an ambulance and a car, they did a few general checks on me: blood pressure, bloods, temperature and they basically said I'd get over it and it wouldn't kill me unless I took more. They also said that a heroin addict would take a whole packet of those tablets, which is 32 just to get their fix. I had a really rough few days after that, but I was so happy that I was ok and didn't need to go to hospital. By the time they actually got to my house, I was feeling better, but because of my breathing me and my Mum pooped ourselves and wanted to double check I'd be ok, as you can understand in my condition, not being able to breath is quite serious. Anyway, I'm fine now, I definitely won't be making that mistake again and I'm here to tell the tale. I know some of you will be like "Why did she put that on her blog?", well I'm a very honest person and I wouldn't feel right blogging about how rubbish January has been and missing out the most life changing, crappiest thing of January. It just doesn't sit with me right and if you don't agree with me putting it on here, then fair enough, everyone has their own opinion, but honestly just do one, I shall write what I want.

• If you have me on Facebook, you would of seen that recently I've been feeling like I can't count on everyone and that all everyone does is let me down. Without offending anyone, well that's if they even notice this applies to them, I've lost quite a few friends. Close friends as well. Ever since I've started this apprenticeship nobody has bothered and all the people I thought I had have just disappeared. Yeah I understand people move on, get new friends, carry on with their life blah blah, but when you thought you were best friends or good enough friends with someone to keep in touch with and then they don't it kind of hurts a lot and makes me feel poopy, as it probably does with other people that this happens to.

• My apprenticeship has been taking absolutely ages to get to grips with, but hopefully by the end of February I will be in the swing of it and flying through it. At the moment it's very stressful as I should've started the work last November but unfortunately it got delayed and delayed and I only started it on the 12th of January; so as you can imagine I have loads to catch up on and complete by November 2015, no pressure.

• As for my last appointment at GOSH and moving to Hammersmith; I think I've spoken about this before, but it's coming around pretty quick and I'm quite anxious. These people who have been with me since day one of my diagnosis aren't going to be there anymore and I'm going to have a different support network which makes me really anxious. I hate change, especially this type of change. I'm quite happy and comfortable with my Doctors, Consultants, Nurses and Ward Staff and I don't exactly want it to change, but unfortunately change happens and I can't stop it, so I guess on wards and upwards?

• Fudge isn't exactly being a good puppy at the moment and when I'm having a bad day it doesn't exactly go down well with me, I literally want to chuck him out the window. Obviously I don't do that and I wouldn't ever do such a thing, he's still alive and being a pain but sometimes he drives me up the wall. When he barks, he doesn't 'woof' he barks and it won't be quiet and innocent, it's a full on loud bark. It makes us poop ourselves when he barks unexpectedly and everyone that hears fudge outside probably thinks we own a great big aggressive dog when in fact, Fudge is just a Yorkshire Terrier with short legs, about 70cm in height and a very loving personality with a good old loud bark. Anyway, I still love him very much and I would be lost without him if I didn't hear him in the morning barking at the school run, or when someones outside in the alley, or when the postman comes, or when he hears me coming home through the front gate and welcomes me; it's comforting to know he's there, trying to protect us regardless of his size and to hear him welcome me, us home. 

• Health wise, I've been ok. I've had the odd hiccup and have acquired another cold but hopefully it will pass soon. I have been sleeping a lot more recently and getting much more tired than I usually would but I think it may be down to the emotional roller-coaster I've been on, the stress I've been having and everything else as well. If you put it all together it is just draining, emotionally and physically. Oh and regarding my meds (Epoprostenol via hickman line), I've been getting on really well. I haven't done them every day, a few times a week but I'm certainly getting there and my confidence is growing each day with it. I'm so proud of myself and so thankful that my parent's have taken the time to teach me and picked up the pieces when I've thrown a paddy because it's stressed me out. 

Writing about the morphine was actually really hard for me, and I did post this last night but I completely regretted it and deleted it. But since then I've thought about it and here I am posting it again. I decided to re post it and keep that particular paragraph in because since speaking to a couple of people, they told me it was a good idea to include it as it shows people the real world and that not everything works out. Things like that do happen in life, regardless of who you are, where you come from, if you have a disability or not etc etc and I genuinely don't think we hear enough of these common mistakes to make ourselves aware, so don't take this as a "I want your sympathy" because I don't. I just want you, and other people to be aware of how easy it is to make that type of mistake and how fatal and scary it can be.

As for this post, it's a very honest and open post. My January has honestly been awful and hopefully it can only get better. Thank you to a lot of my family and friends (you know who you are) for your continued support, motivational talks, picking me up when I'm down in the dumps and ready to give up with everything, and for just generally being amazing towards me. Always cheering me up and reminding me why I'm still here fighting. You're all always there when I need you and even when I don't you're still there, reminding me of why I get up in the morning, and get dressed and go to work and continue this apprenticeship even when I could so easily spend the rest of my life in bed. I honestly couldn't get through half of what I do without any of you lot, and I'm so blessed to have you all. And I'm actually really thankful that you make me go out and spend the day with you because you know exactly what I'd be doing if I wasn't out with you (staying in bed) and you know deep down I'd rather go out than waste my time. Time is precious to me and you all seem to know it and don't let my stubbornness stop me. I honestly couldn't ask for better people to spend my life with and you know who you are, I love each and every one of you so much and I hope you never ever forget that.

Thank you for taking the time to read this blog post and I'm sorry it's so long.
Credits to Stacie for the confidence boost and the guidance.

Love, Erika

By the way Jessie J was amazing and me and Megan had the time of our lives. She's definitely worth going to see and I can't wait until she does another tour. HINT HINT. Mum? Dad?

Stacie's blog ♡ - Life Is Worth The Fight

Martin

Hi everyone, I hope you all had a lovely Christmas and New Years, I know I did thanks to all my family and friends.

Anyway this isn't going to be a long post at all, just nice and brief. As some of you know as you're friends with me on facebook my New Years resolution was to learn how to do my meds as there's quite a lot to be done and it's about time I learnt. It also means I have more freedom so since the 2 of January I have been doing my meds with mums guidance and I'm so proud. 

Today marks my 2 year anniversary with Martin (my pump). God knows why I named him Martin but I did and that's that. This is Martin 

Martin has saved my life, he might not of worked at the beginning but 6-7 months ago he decided he was going to start kicking some ass. I'm so glad I got Martin when I did, it was definitely the right time when I got him and he's changed my life in so many ways. (If someone looks over your shoulder while you're reading this they are going to think that I have a really sweet boyfriend, Martin is NOT my boyfriend, he is my pump that is connected to my Hickman line feeding me medication 24/7. Sorry for the disappointment.) Martin has changed my life, mostly good but some bad. And he's also changed my family's life. Certain things I can't do do effect my family but we all march on and keep going and always find alternatives. Also, because my meds have to be done every 24 hours, it limits where I can go, and I always have to have my parents with me as they're the only ones who can do it, but I assure you all that is going to change very very soon. But focusing on the good points, he's made me better these past 6-7 months, my health has improved and I've never had an internal infection with Martin which is great.

You're all probably thinking I'm a nutter for naming my pump, but it just makes things a little easier when dealing with being ill and having a pump connected to you 24/7.

Thank you so so much for reading! Hope you're all well and have had a brilliant start to 2015.

Love, Erika