Hi, I'm new.

[Guest guest]

Hi all, I signed up a while ago, and thought I should introduce myself

properly.

I'm 30 years old, I live in Australia, am a full time student, have a

husband, 2 kids (2 years old and 6 months old repectively), 3 cats, 2

chickens, and a rabbit.

I spent most of April in hospital with chest pain and breathing

problems, spent my 30th birthday having a lung biopsy, and was told

shortly after they are " 95% sure " I have sarcoidosis (which, admittedly,

is a little bit better than the original guesses of tumour or lymphoma).

I am due for the next round of testing in roughly a fortnight, to find

out how far it has spread/what organs it's affecting, how fast it's

moving, etc. etc.

I don't really have a huge understanding of the disease, mainly I think

because so little is known about it. I haven't really told many people,

I did tell my husband and family, all of whom said " well you look

alright to me " and filed it into the " never to be mentioned again "

category.

I'm going a little bit crazy: my head pounds all the time, all my bones

and joints ache, I itch so badly I am tearing my skin off in my sleep,

every breath I take feels like it has no oxygen in it, I spend a lot of

time doing a gasping goldfish imitation, my heart does all these weird

rhythm and beat strength changes at no notice, and I am exhausted all

the time, if I had any choice in the matter I would happily sleep for 20

hours or so in every 24. But apparently that's all ok, because I look

alright.

My sarcoidosis is being overseen by a thoracic specialist; according to

the local nurse, this is because it is a multi-organ disease, so

whichever organ it is found in gets given authority and everything else

gets outsourced. For some reason, that makes me laugh.

Anyhow, that's me in a nutshell. Nice to know I'm not alone.

Thanks for accepting my membership. :-)