update and help

October 1, 2008

hi everyone, well it's been a long time since I've written anything on the

stills board. I've tried to keep up with everyone by reading the post, but

I haven't been feeling week and posting a msg just wasn't in me. My

Rhuematologist in Nashville (to rename nameless) has done nothing to change

or help me since moving to TN since last year. At that point my old RD said

that I needed to get off Kineret and on something else because he could tell

my back was starting to deteriarte. He also wanted a Liver Biopsy done,

another Bone Densisyt Done and a few biopsy of some lyphm nodes that are

getting bigger in amy arms and legs. This RD in Nashville hasn't changed

anything but a few NSAIDS and I've continued to get sicker and sicker as

time has gone on. Now I am besides myself in how to communicate with him

and how to get him to understand how sick I am every day and night by 2-3

pm. I tend to be so restless at night from fevers that I can't even sleep.

My GP has decided to send me to Mayo Clinic and I have an apt at the end of

Oct. I plan on going to a new RD when I get back. this doctor doesn't

listen and doesn't want to listen.

I'm searching to find out if anyone has recommendations for Doctors in the

nashivll in that the love, Doctors that listen and actually do thinks for

you instead of ones that don't do anything because they don't want to lift a

hand to write a letter on your behalf to get you on the write meds.

Anyone? Because when I come back from Mayo, I won't be going to him any

longer. He has to many strikes against him and I refuse to let my doctor be

the one that actually causes depression.

Sorry I haven't posted, I just haven't been able to keep my head above

water... I will, in addition to the normail stills stuff, most likely need

a second surgery in my right ear to cut out a cholestatom. I had one taken

out in Jan of 2007 - now it looks like I have it again, so it's frustrating

for me to deal with the vertigo that goes alone with that also.

I know everyon has there ups and downs, and I hope all of you are doing at

least a little better than I am

Thanks to anyone that can give me a good referall to a doctors (RD) in

Nasvhille

Hugs to all.

October 1, 2008

I went threw some thing like you with docs. not the other problems but with

docs not listening . I can only change docs every so offten with my medical

covrage and so it is a crap shot when you do . but i have done it as I figured

nothing could be worse then what I had . well this last time it has paid ff . I

have a great internal doc who will not do any thing when it comes to my sitlls .

says it is above him and not his field so he found my rummy and set me up with

her . well I am happy with her also she has delt with stills before and is also

a SSI advacut and works two days a week for SSI. she also because of that knows

what my medical covrage will and will not do and has talked with me over were i

am in life with money and she works very hard to stay with in what i can aford

and what they will covewr . it is a wonderfull working relationship and I can

say in over 8 years with stills it is the best doc set up I have ever had for

long term care. so

look into what you need to do with you medical covrage to change as some are

funny about it and fallow there rules . then go out and make phone calls and

interveiw them also . I also did that . and even if i had to make a office viset

to do it I did that because i needed a dooc that would work with me and that had

at lest heard of stills and if they had not delt with it was willing to learn

about it as my last doc was not at all. the one before it and the rummy well

lets say they only delt with my fibo and nothing more

I have found if we do not fight for your selfs no on other will eather and so

we have to sick or not . also at the Mayo ask for there recamdadations for a doc

in your area . I have a frienbd that traviels over 400 miles to see a caner doc

4 times a year because he is happy with them and it is the same one that found

it operated on him and is now about to call him cured so it can pay off but my

friend is also a fighter and would not take any B.S. and went threw a half dozen

docs tell he got this one so good luck and my best

the rednecks

Marty & G.

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

Stills ; An illness I know to well!

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

If you find yourself in a hole, the first thing to do is stop diggin'.

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

~Author Unknown

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

October 1, 2008