POOF

I haven't blogged in ages but I've been quite busy with my apprentice and I haven't exactly been healthy so I've had no energy at all to blog. So here is my really late blog but I am trying my hardest. I try to write little bits during the week so I don't have loads to write when it comes to actual finishing a blog.

Poof is my new favorite word. If you know me well you'll know that I go through stages of having favorite words and sayings for months on end, and these ones have been the most recent in the past few years; 'shitty shitty' excuse my language, fabulous, oh hunny, bubs and probably a few more that I can't remember but if you do, please feel free to tell me as I like being reminded of these things.

My apprentice that I started just over three weeks ago in business administration is going really well. There's not much to tell at the moment but I'm really enjoying myself and I think it was definitely the right decision. I do miss all the staff at Commonweal and my friends, especially my first aiders. But I honestly do think it was the right decision and I know that if I do ever want to go back, I can. But so far, so good. I have more energy now, and I'm not so drained after work. I also don't have the stress of exams and learning loads of new things, so I'm pretty healthy at the moment too. Minus my cold that I seemed to catch but it's gone now so fingers crossed I don't get one near Christmas time.

It's Christmas in 30 days and I can't wait to by presents for everyone and wrap them up. I haven't started any of my Christmas shopping but oh well there's loads of time. I love Christmas, Christmas songs, the atmosphere, the jolliness, I JUST LOVE IT.

I had some friends over on Saturday who I haven't seen in ages and it was so so lovely too just see everyone, have a catch up and have a good time together. We managed to have a laugh and a joke and it went so quickly. It was really nice to do something with my weekend instead of spending it sick or sleeping.

As for hospital, my next appointment is at the beginning of December, so not to close to Christmas thankfully. Not much to write about at the moment as nothing exciting is happening so this one is rather boring, however I will be doing 'blogmas' so I need to start preparing for those or I won't do anything!! Ooops.

Thank you for reading the most boringest blog ever.

Love, Erika

Pulmonary Hypertension Awareness Month

Idiopathic Pulmonary Arterial Hypertension is a very serious but rare medical condition and I seem to have been one of the lucky ones who was picked out to have it. It's an incurable and progressive disease. Idiopathic Pulmonary Arterial Hypertension (PH for short) is where the Pulmonary Arteries are much thicker than a healthy persons arteries therefore my heart has to work much harder to pump blood to my lungs. Because of this my heart works less effectively than your own or a healthy persons. 

Below is a picture that shows you the difference between a 'normal' person's heart, and a person with PH. The second image of the first figure which is of the heart and lungs is what my insides look like, and in the second figure my arteries are the 3rd image described as 'severe PH', (PAH - just means Pulmonary Arterial Hypertension).

There are two types of PH, secondary and primary. I suffer from primary pulmonary hypertension (PH) as this disease is not caused by another disease and has developed without a known cause. However PH can also develop as result of other diseases too and this is called secondary pulmonary hypertension (PH). 

Because this disease is so rare, I don't know anyone my age that suffers with the same disease. I have a couple of friends that do have PH, but they are not around my age. Age isn't really a huge deal but it definitely would of helped me if I knew someone who was doing there GCSE's with this stupid illness like I was or something along those lines. We still get on and have a fabaroonie time when we're together and I've learnt to deal with the fact that I probably wont find someone my age but life goes on.

Stacie, a very good friend of mine who I have known for a rather long time, suffers from secondary PH due to two holes in her heart. She was diagnosed at 11 in 2001, in 2012 at the age of 21 she was put on the list after 11 months of waiting to go on it and now Stacie is 23, still fighting and waiting for a heart and double lung transplant (which I hope she get's very soon). Stacie also writes a blog where you can keep up to date with her fabulous life, so at the end of this blog post I will attach a link to her blog 'Life Is Worth The Fight'.

Kat, suffers from secondary PH too due to systemic sclerosis, which is a variety of schleroderma. Schleroderma is a rare disease of the blood vessels, the immune system and the connective tissues. The body produces too much collagen and then the collagen binds the body together. Kat has recently returned from the US after receiving a stem cell transplant. Kat also has her own wesbite called 'Katrina's Future', where she fundraises and makes people aware of schleroderma, so like Stacie's I will attach a link to Kat's website.

Because PH can make you tired and lethargic it makes it more difficult to do 'normal' everyday things. The symptoms i suffer from due to PH are: breathlessness (mainly), dizziness, feeling faint, chest pain (particularly during exercise), migraines (mainly) and tiredness (mainly). We have to avoid lifting heavy things, bending and over stretching. We may need to use extra pillows to raise our head to make it easier to breathe. We may need to wear lighter, baggier clothes as sometimes just putting them on is a task. Towel drying yourself and washing your hair can sometimes be a killer with all the movement so others may need to do it for us or we made need to just sit for a while so that we can 'air dry'.  Sometimes we may need to use a wheelchair when out and about as well as carrying spare medication in the car with us. 

All of the above applies to me, and it's pretty poopy at times but you learn to get on with it, as it's life now or for some people it's always been that way and no one can change it. But there are many different treatments available for pulmonary hypertension (PH). These treatments can improve the symptoms of PH and therefore improve quality of life. Some can slow the progression of PH and can also help reverse damage to the heart and lungs. Here you can read about the types of treatment there are available to us PH sufferers - http://www.phassociation.uk.com/treatment_for_ph/

Now, last but not least fundraising, the fun bit. Fundraising for PH goes towards improving the lives of people with PH and raising awareness of the condition. Through the pha UK website you can fundraise and you are also able to choose how you would like them to spend the funds you have raised. This includes:

• Helping to raise awareness of PH
• Research into improving treatment and finding a cure for PH
• Educational literature and DVDs for PHA UK members and medical professionals
• Financial grants for people with PH to help them purchase medical equipment
• Family weekends
• PHA UK conference.

You can learn more about fundraising for PH through the pha UK website (pulmonary hypertension association UK) here - http://www.phassociation.uk.com/get_involved/fund_raising.php.

PH is a horrible disease and I wish I didn't have it, but I seemed to have pulled the short straw in life and there's nothing I can do about it. I hope for a cure to be found one day, or for a better treatment option that can make me live forever (or at least to a decent age, maybe 60s/70s maybe even 80s or is that too cheeky?) But for now, it's me, my epo and my tablets. 

Thank-you for reading and I hope I've made all you lovely readers aware of this horrible, stinking, stupid disease that myself and so many others suffer from. 

Love, Erika

Stacies blog - http://stacie-lifeisworththefight.blogspot.co.uk/

Katrina's website - http://www.katrinasfuture.org/

pha UK website - http://www.phassociation.uk.com/

I want to live so badly so why is life not letting me?

Life has changed so much and it's nights like these I lay down and actually realise all the things that I miss. Life for most of us changes through the years and sometimes even months and weeks but I can't help but notice sometimes that I may have drawn the short straw at life.

I miss having nothing to worry about. I feel like within the past 3 years I've become an adult that I shouldn't have to be right now. For example, I barely stay at friends houses because its so much drama to sort out. And another is that I rarely ever am well enough or have the energy to go out, and when I get invited out most pals usually forget I can't actually do all the walking and the long days. 

I miss the days when I'd go round my best friend Chloe's house and stay for like 4/5 days straight in half term, when I was only supposed to be staying a day. Being stupid with her, running around, eating a months supply of candy in one night, waking up to scrambled egg on toast or cheese on toast, playing just dance like we hadn't a care in the world (and in one aspect we didn't, I didn't, not like I do now), having food fights, and doing one another's makeup. It's not like that no more, and however much I want it to be like that again, it won't be, ever again. Those days seem to have gone as quick as they came. 

In summer I went out with a bunch of friends and what I thought we went out to do, didn't happen and plans changed which meant I had to go home because I couldn't do the walking. This isn't a "Oh I wish my friends weren't so careless to forget" because they really aren't at all and I'm so glad they invited me out because even though I'm sick and not 'normal' they still included me. It's more of a, "I wish I didn't have to go home and could carry on like them all, I wish I was normal and not sick". Before, I could of easily stayed out with them, walked to Lydiard, got pizza and all the other stuff but now I can't do that, for a number of reasons and it's absolutely gutting some days. 

I just want to some days be able to get up and go, not plan things, go out and stay out for as long as possible and just be a teenager. But it's pretty much impossible and now I spend most of my days in bed, sleeping, and rolling about with achy bones. 

I didn't ask for this sickness in my life, and I don't want it in my life but I have to put up with it. It's never going to leave me, it's always going to be there and there's nothing I can do about it. I have such a desperation to live, to get better, and to live my life just how I want it and to do all these amazing things. I want this so bad, just to one day to be better, for a cure to be found, to know I'm not going to die at a young age. I want to live so badly and life just doesn't want to let me do that.

Love, Erika

2nd November means one thing...

ITS ONLY 53 SLEEPS AND 52 DAYS TILL CHRISTMAS.

I've been feeling rather groggy and un-motivated lately. I have no energy and I would loveeeeee to be a hedgehog so I could go and hibernate. I hope I've got that right, that hedgehog's hibernate? Ahhhhh the joys of getting an E in Science. Anyway, I've been feeling rather poopy this week and everything seems to be getting on top of me and rather too much.

Daniel's birthday was great and we had a few lovely meals with his family, he enjoyed all of his present's and I'm so glad I could be a part of his 18th. Some people will probably question why I'm so grateful of being able to be part of it, but I am, so so so grateful. I love birthdays, I love giving other people presents and watching them opening them. I love seeing people so happy and excited on their birthday. And particularly with Dan's birthday, was the fact that I could share such a special moment in most people's life, turning 18, with him. Also the fact that I may not make it to my 18th but I've still been there for his, and that fills me with so much joy. (Not that I might be dead for mine, that I was there for Dan's 18th, just in case anyone thinks otherwise.) I hope that makes sense. 

I've had a boring half term, and I haven't exactly done anything amazing. We did some baking on Monday, making gingerbread men and lemon drizzle fairy cakes. On Tuesday me and my brother spent the whole day in bed playing Mario Kart Wii. We had a laugh and just slobbed about all day. My Grandma has been down from Brighton since Wednesday and I always love seeing her and spending time with her when she's down. I don't get to see her often which is rubbish so when I do see her we always manage to have a laugh and do loads of things! When I say loads of things, I mainly mean shopping. 

I've spent this half term getting myself ready for the next few weeks that lay ahead of me. For once it's not actually anything to do with the hospital as I usual use that line for something major with the hospital. I have a few more things to sort out and then at some point next week there WILL be a blog post about 'My First Day'. But, my first day doing what? Hehe.

As always, thank you for taking the time to read my blog

Erika X