UP date on Martys sis!

[Guest guest]

Hi all

 well I am home for how long I do not know at this point.

 low down as of now

still working list to have them look at so ideas if any will be added and sent

to mom each day and given to the doctors .

 sis not responding well at all to any lowering of O2 or medacations. all her

blood work and any other things being tested are being done at the Kisar

hospital were she is at and also now UC medacal center calif. so far no

one has a clue as to what brought on the distres she is having. there is no idea

if she will pull threw this at all and if she dose if she will ever be off a

resporator the rest of her life.

 we have started talks with the social worker at the hospittla and looking into

temp for now gardenanship or power of atterny so that we can start ssi paperwork

and or make leagle health care call in her behalf.

 mom is stressed out bad and I had to leave as I was becoming her target of

attackes. I did not take it personal but i also know staying longer would only

upset her more so my aunt is taking over my spot in trying to get mom to look at

the reality of what is going on and what we need to do . my sisters two kids are

well not mentaly able to make the decitions that need to be made yet there the

ones leagley that are the one that it falls to . both are to put it nicly

mentaly chanlanged and that is a clinical dignoses not a personal opionon. fact

the yougest on (28) has been yelling that were all lieing to her called the cops

to keep us from the ICU room and then tried to keep a nurse out saying only she

could make her mom well and the rest were out to kill her. yes she is to be

taking medacation for it but will not and the other one is a uncontroled bipoler

and drug abuser who has some other leagle and personal problems over welming her

life.

 so mom makes the calls or I should say I have to make her feel like she makes

the calls and it is her decitions . normaly she would be a very good person at

this but this time she is stressing realy bad . I think with my aunt that her

age and the memorys of helpping her mother and my father die at home are in ways

hounting her in this because she blams there dieing when the did on her self

beliveing that they would have been alive a bit longer ( as in days maybe weeks

) if she had acted faster or help back from useing as much pain killers. this is

some thing we are not letting her make calls on at this time for that very

reson.

 any hoot my sister could make it threw this but the mostly chance is she will

not and or if she dose not in a very good way as in life style and so we are

taking things day by day hour by hour but the doctors wanted me to thank all of

you for your ideas as I gave you credit for them . some they had done and a few

it was hmmm thats not a bad Idea at all I had not thought of that so thank you

and with that I am closing for now to compile tonights list and do some more

reserch for a list to send so mom will have it in the morning when she talks to

the doctors again

 thanks for the suport and care and yes I am glad I have all of you because

right now I need ya all as my sister and I are like twins were that close in

feelings and some say looks  but were not were 18 month apart but have always

been able to feel each other even with hnderds of miles seperating us so this is

hurting me and it is hard to see her in a ICU bed like this as she is normaly

the one so full of life and such so again thank you all for helping me make it

threw this with your love and care you are and have shown your family but a

chousen family not a forced on ya kind LOl

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 To learn about Stills Disease  http://www.stillsdisease.org/stills_info

For conservitive minded people  http://www.americac2c.org " If  we ever forget

that we're one nation under God, then we will be a nation gone  under. " ~

Reagan

 

 In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.~Cicero

                                                   

________________________________

To: Stillsdisease

Sent: Thursday, January 8, 2009 2:06:40 PM

Subject: Re: Freinds I need Your HELP! not for me but my sister

if you can please help me!

have they already tested her ferritin level?

what about checking for infectious disease specialist? They should have a

Rheumy and Infectious Disease guy along with Pulm guy working together (and

their best) if they don't then they aren't trying their hardest.

Also, has she ever had asthma in her life, that can trigger all kind of

breathing problems and is something that needs to be considered.

The other thing that needs to be considered is enviromental. Basically,

modular homes, lock-key homes, etc all have chemicals in them that can cause

extreme breathing problems in one problem (because of auto-immune issues and

not impact anyone else in the home, so the house should be checked for

chemicals and molds, etc. I know it sounds really crazy, but there are

proven cases that really cause problems for auto-immune patients.

I hope she gets better soon.

alli

On Thu, Jan 8, 2009 at 11:47 AM, Marty <stills_stinks@ yahoo.com> wrote:

> Hi every one

> okay not going into much fluff here at all

> my sis has some kind of auto amuni thing going on . she is in ICU and has

> been for over a week now. She is on a respirator and feeding tube. here is

> the fast run down

> she has had trouble breathing for over a year no one knows why some thing

> work other no idea last year hospital same time but the predasion problem.

> the littlest exertion she runs out of breath and can not get it back . it

> takes a few days of resting for her to feel like she gets her air fully

> back. right now

> in icu they have tested or are testing her for Vally fever, have done ANA,

> RA blood test and a few other what I do not know. O2 has been running at

> less then 88% and that is on respirator and with an o2 pump. they of course

> have her knocked out because of the breathing tube so she can not talk and

> or answer things

> this is were I need your help. we all have dealt with wear things because

> of stills or people we know. this seams to be a breathing or lung problem.

> they have talked about intertesual (spell) lung disease. main causes organic

> or non-organic and also Lupus and RA . now if any of you can think of test

> or some thing that they should look at let me know we are doing list to give

> her doc they cross out what they have look at what they may. I do not care

> how off the wall as they are admitting they have no idea what is going on.

> we all know how that is . Her docs are talking with UC medical center Calif

> ( a teaching university center i believe out of SF) and they are also

> stumped this is also why I am reaching out to you my family . they are as

> we not knowing what to do next but they are saying at this point she is to

> weak for a lung biopsy even by needle so worse case lung transplant is not

> even a thought. she is on high predasion right now and is a

> diabetic from it as many of us know how that go's but she is tolerating it

> well so far. they are thinking some kind of auto amui of some kind but what

> and are willing to listen and try at this point. so please if you can help

> us save her and no matter how crazy. i will be on line checking a few times

> a day just not posting much as I am at moms trying to research and taking

> care on mom an some of my sisters things such as her car getting and making

> sure bills are paid finding out about her financial; things from her boy

> friend who knows more then we do but he knows she is sick but the ass hole

> thinks it is from her being depressed and going threw the change of life (

> him and I will have a talk after this is over ) any hoot if you can please

> help and tell I can get things some what settled down here or tell I get

> home in a few day I will not post much sorry but know this your help prayers

> and thoughts mean the world right now as we all are fighting to

> help her out

> Marty and my Mom

>

> the rednecks

> Marty & G.

> the redneck's my space http://www.myspace. com/martyg58

> To learn about Stills Disease http://www.stillsdi sease.org/ stills_info

> For conservitive minded people http://www.americac 2c.org " If we ever

> forget that we're one nation under God, then we will be a nation gone

> under. " ~ Reagan

>

> In the old days a man who saved money was a miser; nowadays he's a

> wonder. ~Author Unknown

>

>

> A nation can survive its fools and even the ambitious. But it cannot

> survive treason from within.~Cicero

> " The most terrifying

> words in the English language are: I'm from the government and I'm here to

> help. " ~ Reagan

>

>