Re: Choices, email and painfully long whinge...

[Guest guest]

hi everyone....... and welcome . Sorry i haven't been writing for a

few days. i've been unwell again (another damn chest infection). i haven't

read all the mail yet because there's too much to read it all at once.

> Aisha,

> Everyone has to make these choices for themselves. It's the families

> job, to see that they are carried out, as the patient wants.

i am on NFR......called DNR in america. and i wish my parents saw it as my

decision. my mother contacted a solicitor to try and prove me too mentally

unstable to make that decision. she is in total denial about my illness. and

completely ignorant as well. i mean, it's her genes (and my father's) which

made me sick in the first place. cystic fibrosis is hereditary. i was only

diagnosed correctly this year as i was not very sick until then. but i am

angry at my parents for being so irresponsible not to get me tested earlier.

my best friend/flatmate knew long before me or my doctors. she said

it was obvious from my symptoms and it was her who made me ask to be tested.

> My computer is on 24 hours a day, 7 days a week. It automatically

dials

> in, and gets my email every 45 minutes

i can beat that. we are connected 24 hours a day every day unless we get

kicked because of ISP problems. and we download email every 2 minutes. most

times at least one of us has an email. i get an average of 300 - 400 emails

a day from friends and mailing lists and gets about 500. and believe

it or not we read almost all of them. we both use the same computer so this

is quite a lot to get through.

i have been put on Doloxene because it hurts like hell every time i

cough......especially during physio (twice a day) and i can't take aspirin

as it is an anticoagulant, and paracetamol throws off my liver function

which is bad enough already. i'm sick of taking so many pills. i'll start

rattling soon. at the moment i take 45 tablets a day. and my bedside table

looks like a pharmacy......or an ER anyway what with the oximeter (yeah i

got one of those through insurance.....yay!!!!!) and nebuliser and

glucometer and probably soon i'll have an o2 cylinder as well. my sats have

been dropping into the high 80's at night so that's pretty likely at this

rate.

and my goddamn doctor has gone on holiday for 5 weeks and i don't like the

bitch who is replacing him for that time. i call her Dr Evil.

anyway thanks for listening (if you made it this far)

stay well guys...... i love you all

hugs from Sonja

[Guest guest]

>i am on NFR......called DNR in america. and i wish my parents saw it as my

>decision. my mother contacted a solicitor to try and prove me too mentally

>unstable to make that decision. she is in total denial about my illness. and

>completely ignorant as well.

Hi Sonja,

Thanks for the hello. I completely understand why a person makes a DNR

decision. I don't know how old you are, but if you're a minor, then I'd

bet there is little you can do, to go against your parents wishes. If

you're an adult, though, you should be able to make that decision. If you

think they will act against your wishes, you should do what you can now, to

take that choice away from them. I don't know if your country and city

honor living wills, but that is the first step. Get it in writing, what

you want, and don't want. Also remove your parents names from emergency

contact records, and put in their place, somebody who you trust will act on

your behalf, even if you have to put the name of a lawyer on the forms. It

would take a court order, for a minor to be allowed to make these decisions.

>i can beat that. we are connected 24 hours a day every day unless we get

>kicked because of ISP problems. and we download email every 2 minutes. most

>times at least one of us has an email. i get an average of 300 - 400 emails

>a day from friends and mailing lists and gets about 500. and believe

>it or not we read almost all of them. we both use the same computer so this

>is quite a lot to get through.

You win......<grin> I mess with the computer, instead of watching TV

at night. Much more enjoyable than TV, too. Occasionally the computer is

online all day, if I have some files I'm DLing. I usually DL large files

overnight, or while I'm at work.

>i have been put on Doloxene because it hurts like hell every time i

>cough......especially during physio (twice a day) and i can't take aspirin

>as it is an anticoagulant, and paracetamol throws off my liver function

>which is bad enough already. i'm sick of taking so many pills. i'll start

>rattling soon. at the moment i take 45 tablets a day. and my bedside table

>looks like a pharmacy.

I used to take a lot too. Now I'm down to 7 (not counting pain pills

since I don't take them on a schedule, just when needed). I wish I didn't

have to take any, but that's not possible. Funny you mention the

rattling. I am told to drink 4-5 quarts of water a day. That's a lot, and

occasionally, I can hear the liquids sloshing inside my stomach, as I move

around.

>and my goddamn doctor has gone on holiday for 5 weeks and i don't like the

>bitch who is replacing him for that time. i call her Dr Evil.

Can't you select a different alternate? Five weeks is a long time, to

have to deal with a doctor, you're uncomfortable with.

>anyway thanks for listening (if you made it this far)

Yes, I made it........<g> I've always been a good listener.

Take care,

[Guest guest]

*HUG* to that Sonja babe!

Sorry to hear you had another chest infection. Yuck. Are you better from it hon?

I hate paracetamol. Makes me really ill. 45 tablets a day! Darling you need to get a new hobby! Collect something a little more exciting like spoons?

"my sats have been dropping into the high 80's at night so that's pretty likely at this rate."

Oh the 80's were not a good era to drop into at all. So much blue eyeshadow and big hair!! Sorry to hear that this is happening to you. *HUG* How is the shitty kitty??

"and my goddamn doctor has gone on holiday for 5 weeks and i don't like thebitch who is replacing him for that time. i call her Dr Evil."

LOL So in Western Australia we have Dr Evil and Super Shoulder Pads LMAO you guys get all the good ones! I hate it when your Dr goes away. Often their replacement is horrid. At least there is someone there though if you need her (I hope you don't need her!)."anyway thanks for listening (if you made it this far)"

You knew I would *hug*"stay well guys...... i love you all"

Love you too dear one. Take good care of yourself or I'll boss ya around.

*BIG HUG*

Lots a love, A.

[Guest guest]

>

> LOL So in Western Australia we have Dr Evil and Super Shoulder Pads

LMAO you guys get all the good ones! I hate it when your Dr goes

away. Often their replacement is horrid. At least there is someone

there though if you need her (I hope you don't need her!).

>

LOL....

well, I have a Professor-hairy-nostrils (dwyer-immunologist)

and a Professor-holier-than-thou (ziegler-paediatric immunologist)

Then there is always Dr-daggy-dresses(Dr Tymms-rhuematologist)

why is it that so many Dr's and Professors have such bad personal

grooming and fashion sense?

How, may I ask you - can I trust someone who wears dresses with lace

collars and white court shoes with a pink cardigan (I kid you not!)

Well, actually I have learnt not to trust that particular Dr, so

first impressions do count after all!

From now on, I refuse to see any Dr who is not dressed in black from

head to toe with at least one facial piercing! (since I have never

actually encountered a Dr with such style, guess I will just have to

refrain from consulting the medical fraternity at all should've made

that decision years ago, methinks!)

Ta Ta!

:-)