I'm new :)

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I'm new :)

Postby LauraKelland » Wed Aug 14, 2013 11:06 pm

Hello I'm Laura,

I was born with aortic stenosis, VSD, pulmonary atresia, polycythemia, severe cyanosis (sats at best 70), had a pulmonary valve replacement in '09 and most recently had angioplasty and balloon dilation to RPA and stenting to RPA in December '12.

Started having mini-strokes when I was 13 (or TIA's) and was put on warfarin, was in intensive care with suspected endocarditis at the age of 18, and due to the anti-biotics I was given I ended up having peripheral neurogenic pain (arthritis).

I work 25 hours a week in an office, but I have been off since the end of May due to chest pains and over-doing things. I've now decided to medically retire - I'm only 24! I already feel better in myself knowing that I'm not going back as it was a highly stressful job without rewards. As soon as I told myself I wasn't going back to work it felt like a huge weight had lifted off my shoulders. I'm now focusing on doing something for myself and I'm going back to college. I'm already doing an online beginners makeup course which I already love!

Was just wandering if people are in my situation? What benefits do you get? What are we even entitled to? I get DLA mobility at the minute but that's it.

I struggle to find hobbies for myself. I can't really exercise as it just knackers me out, waking is my only exercise and I can only walk about 300m. What are other people's interests/hobbies?

I live with my partner and we are to be married in six weeks. My life expectancy is that I won't reach the age of 30. I got told just before my 18th birthday that I would be unable to have children, not the best time as someone like had their life pretty much mapped out since she was a little kid. To be told I couldn't have children crushed me, I was distraught, I just thought I wouldn't be able to carry full-term or would need a c-section. I ended up needed counselling for it as I just couldn't get to grips with it. Was made even worse by the fact that I was working in a crèche at the time.

My 19 year old sister is pregnant and due in two weeks. I was devastated when she told me and it just bought it all back to me. I'm obviously really excited for her now she's having a girl and calling her Olivia-Laura. She's doing it for me, she's kept it because I don't know whether I'll be around to see any of my other nieces or nephews grow up or even be born.

I have so many battles with my self, I get good days and bad days but I have a great support system in my family and fiancé. It would be great to talk to people my own age about things as I sometimes feel really alone especially when I have my down days and find it difficult talking to my fiancé about things. I mean I tell him everything but I just wish I sometimes had someone that knew how I was feeling.
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