Thanks for the welcome

[Guest guest]

Sorry to be replying to my own message, I have not been in an email

group or used this forum layout before, it will take a while to find my

way around.

Thanks to all for the welcome, and for the biographies and advice. I

guess you all know the difference it makes not feeling like the only

person in the world with this!

No, I'm not on any treatments or medications or anything. The disease

was diagnosed back in May; the thoracic guy reckons that a quarterly

review is adequate, and is unwilling to treat the sarcoidosis, he says

that the treatment can be as bad as the disease, so we don't treat it

until the treatment is the lesser of the two evils, hence the quarterly

review to monitor the situation.

Anyhow, thanks again everyone, am off to do even more research.

> 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. :-)

>