Stacie xoxo

I saw my very good friend Stacie on Sunday, she was mentioned in my very first blog for being one of my inspirations. Like myself she has PH but unfortunately as well as that she has 3 holes in her heart. One of the reasons me and Stacie get on so well is that we can relate with so many things other people can't and she lives 5 minutes away which is a bonus! Especially when we both have such a rare disease. Like myself, Stacie suffers all the symptoms I do and on Sunday we found an effect that made our rashes' look absolutely horrendous, way more than usual, and we sat and laughed at it because it amused us so much that it could look a lot worse.

When we see one another we tend to sit and rant about every single little thing in life and very rarely do we actually have a normal conversation (I think it's because we don't see each other much and when we do we have so much to rant about that other people wouldn't understand). There are many reasons I love seeing Stacie and one is that I actually feel normal around her and that everyone else is not normal. Weird but it works for me. 

This blog post is very short and sweet compared to my others.

Enjoy.

Erika X

☀Wow..

I am absolutely shocked at the response I've had. I do not know what to say except thank you for taking the time to read it and to some of you for sending me messages.  

When I decided to write a blog I was absolutely terrified of not getting any views and no one wanting to know but that's not been the case and I'm so confident with it now so thank you.

Since my first blog post I've had a few people ask me questions and it occurred to me some of you may be wondering too so I thought I'd mention it.

• Is it a life long thing?
  Yes it is a life long disease and it is terminal. Terminal means that it is predicted to lead to death slowly and it is incurable.
• Is it scary?
  Yes the whole situation can be very scary but there is nothing I can do about it so I just have to keep going. 
• What's scary about it?
  The unknown side of it, you never know what is going to happen like with most things in life but when it is something to do with your health and life it seems to me that the unknown is 10x scarier. One day I could be fine, able to get up the stairs and go out and enjoy myself and the next day I might not be able to get out of bed, or my legs are painful and I can't breath very well. Plus, the not knowing when the end is, is the one thing that gets to me badly, I'm not exactly doing everything I want to right now as I'm not able to and I do not want to die anytime soon but you never know and I try so hard to say to myself "Every one dies at some point" or "At least you've made it to 15" but I know that even thought I'm still lucky to be alive I will never get to experience life like everyone else but 'you never know' and that gets on my nerves because I want to know.

I hope I've answered your questions and if you have any please feel free to ask, I'd rather you ask than assume and read a bunch of crap on the internet. 

 Erika X