Re: Just cause you all understand/never give up or in

[Guest guest]

>Hi ,

Keep being pushy, learn all that you can about this dreadful

disease ...arm yourself with information...so that when you go with

your husband you will know if the doctors that he is seeing actually

know what they are talking about....one thing i have learned through

my experiences with different doctors..is that most of them dont kow

what they speak of....its rare you find a doctor that does...but dont

give up searching cause they are out there.....being armed with

information when u see them will help you to weed out the ones that

know and dont know....the doctors dont like me cause i know more

about my situation than they do......and thats why they dont see me

more than one or two times...once i find that they want to use me as

a guinea pig......so keep up the faith and keep on being pushy....

I too have uveitis...thats how my sarc started....

its flared up now...the drops that they had me on caused me to get

cataracts in both eyes....had the surgery a few years ago...now they

find that i have developed cataracts in the back of my eyes....and

that the lens that they put in has shifted so they have to go back in

and do the surgery again.....problems of the world today huh......

tell your husband to rage against the dying of the light...dont go

gentle.......and you keep fighting for him.....thats what marraige is

all about......he is lucky

> Hello all

>

> I don't post - usually just read to see everyones experience, but I

am

> hopping mad and you all understand. My husband is having a " flare "

I

> guess, still on eyedrops for uveitis, but not breathing well - so I

> take him to primary Dr. (can't get in to pulmonary til March 12!!!)

> Ask Dr to take some blood test - His ACE is 254, along w/ 3 other

> liver related high #'s. He is not currently on any meds so I call

> back and push my way through to Pulm's secretary and she says she

can

> squeeze him in Feb 22. Still not good enough so I am hoing for a

call

> from him after faxing over lab results. I hate to be so pushy - not

> my nature - but they leave you no choice. My husband is content to

> curl up and let the sarc take over, but we have 2 little girls and

it

> is not okay with me. Wish he would read here and see he is not

alone,

> but the Dr. says every case of sarc is different so he is convinced

no

> one else suffers like he does. I know my story is nothing new, but

> helps to vent - thanks

>