[Debate] Two Types of Posting Groups: Active Disease and Those in Remission

[Guest guest]

Or, The Perils of Remission

The Still's website indicates that only around one-third of those having gravely

suffered

the early stages of active Still's Disease go into remission. While those who

are 'fortunate'

enough to go into remission [as I have] nonetheless have gone through the

classic early

years of AOSD, we do remain for the rest of our lives with the shattered bodies,

ruined

careers, financial breakdowns and broken families that those continuing to have

reoccurring flares will apparently never stop ending. If you think that somehow

you're

going to escape from this dismal future; think again, you may be sadly mistaken.

Those

with Still's do themselves no favor by living in denial of their very bleak

future, unless they

get involved in getting society to more for them to help them survive.

So those in remission have a very different experience to share in many ways,

yet we all

have the same pre-history. You and I can never lead a normal life again as

cannot most of

those with active Still's as well. Virtually every organ in my body (and

eventually yours) has

had to deal in one way or another with the aftermath of this sadistic disease.

Sure I

haven't had a major flare since 1978, but what I have been trying to share with

so many of

you, who start out with something like: " I've just been diagnosed with JRA or

Still's " is what

you can be looking forward to for the rest of your lives!

Maybe some of you will have a different experience--hopefully so. But I think

you would

be wise to listen better to the few of us 'Still's Veterans' who are simply

trying to tell you

what you're going to be up against instead of using your own lack of experience

as an

excuse for launching personal attacks on those that are simply trying to give

you the

warning where there was no one available to be able to have helped us in the

same

manner.

[Personal aside]

My first home was at the Quonset Point, Rhode Island, U.S. Naval Station in

World War II,

where my CPO father was stationed as a soldier who had volunteered to fight

Hitler and

Tojo. Although my father passed away many years ago, I still proudly wear his

'dog tags'

from WWII. Although having suffered early attacks of JRA symptoms, I nonetheless

was an

Eagle Scout, nominated to the National Honors Society in Michigan and attended

and

graduated from very fine universities, both in the United States, Germany,

Sweden, and

Switzerland. As an MBA/CPA I worked for Price Waterhouse ( & s), (Daimler-)

Chrysler, Pfizer (Parke-), et al. before being forced out of work on

disability by AOSD.

I used my time on disability to become the oldest doctoral graduate and the

first American

to graduate from one of Switzerland's top universities at the age of 48. I went

on to

become a professor of international business in the Netherlands until the

earlier damage

done to my body forced me back on to disability for the rest of my natural

career (65).

For those who think that everyone who lives overseas and in not in the U.S.

Military is a

'draft-dodger', then they do not understand the important support role that we

Americans

living outside the 50 States offer our country. Ask any Marine who has been on

LRP's, if

the lines of battle can be so easily demarcated as base camp only.

Perhaps many of you are also not aware that all U.S. Citizens living abroad are

required to

file annual tax returns with the IRS; this I have consistently done since I

first moved

overses in 1987 and will continue to do so for the rest of my life. For those of

you who

have studied the history of the American Revolution you might recall the early

Colonial

protests of " No Taxation without Representation " , well it seems now that the

case is now

still the same for us living overseas; we have no one in Congress to represent

us. There

have been bills in Congress for years urging that U.S. Expatriates be allowed to

have their

own Congressional Representative. We still have none, but we still must report

each and

every year to the IRS and there are millions of us falling into this category,

paying U.S.

taxes only to be insulted by those who have little idea of this fact.

U.S. Expats are indeed private 'ambassadors' for our country. We are business

executives,

consultants, teachers, students, and more. We are not tourists. But our task of

selling the

positive side of the U.S. has been made extremely difficult mainly due to the

Administration's policies of the past 7 plus years.

When I first came to study in Europe in 1965, I was welcomed by virtually every

student at

the University of Munich, where I attended classes along with other Americans,

some

whose parents were working for American forces both above and below ground. We

had it

easy then. The image of F. Kennedy's assassination was fresh on our host's

minds.

We were seen as a culture that promoted what was best in mankind.

Things have changed radically for the worst since then; I have never experienced

so much

negative American sentiment at anytime before over the past 40 years over here.

Oh yes,

there are still those who are pro-American, but not exactly the types I would

want my

daughter to bring home, if you know what I mean. It's not a pleasant situation,

but

something that most of you, who are well insolated from and don't care to hear

anything

about. American news is now so dominantly under the control of the ex-Australian

Ruppert Murdoch (Fox News, et al.) that you are spared from what's actually

taking place

on the ground over here. There's a big difference between someone who hates the

U.S.

and another who is simply trying to deliver a message from afar. I love my

country, but it's

changed, not for the better, since I left there at age 40.

But this is only a bit of background information in rebuttal to those who have

chosen the

route of personal attack instead of an informed exchange of opinions. However, I

would

like to think that most reading these attacks, see them as coming from posters

who really

have nothing constructive to add to this or any other debate. Suffice it to say

that I know

that I have served my country's interest in ways that have put my life on the

line and in

jeopardy; I have a very clear conscious on that point and don't need any advice

on what it

means to make that kind of sacrifice!

[End of Personal Aside]

The main message that I have been trying to get across here is that the majority

of you,

who will survive the first most difficult years of Still's attacks, have only

endured a small

fraction of the pain and suffering that is yet to come. I'm sorry to have to be

so blunt, but I

can see no other way for getting the underlying message across. Like it or not

Still's

Disease, unless medical science comes up with some miraculous cure, is a life

sentence of

pain and misery. But that doesn't mean that any of us should give up, it simply

means that

we must get involved and be heard in advocating that society not sit on its

hands, but give

us a helping hand. It's impossible for us to take on this challenge by

ourselves.

Most posters new to Still's are spending much of their time writing about

exchanging

information about which drugs (MTX, Enbrel, etc.) are best for treating active

Still's. Well, I

have been doing basically the same, but on a different level. I've been trying

to point out

by comparison which societies offer the best environment for us to survive in.

As very few

others posting here, I have lived for dozens of years under more than one

system. Hello,

but we no longer have to accept for Still's what Henry Ford had to say for Model

T's: " You

can have any color you want, so long as its black " .

There are other choices available and the only way Still's patients are going to

know what

their choices are, is to look either to other countries or new leaders who will

offer a health

system that genuinely acts in our best interests and not the interests of

pharmaceutical

companies, health insurers, medical school, the AMA, or professionals trying to

maximize

their personal wealth. If you don't try to do something about your future, who

will?

Those of you who survive the first 'attacks' still have a long 'battle' ahead of

you and need

to understand that unless you get involved in protecting your own interests in

this 'war'

against social indifference and suffering of people like ourselves you will

continue to loose

not just today and tomorrow, but for the rest of your lives. Sorry, but you'll

be suffering

long after I'm dead. Who are you going to blame then?

Basically, if you don't see yourselves as being on the loosing side of the

healthcare system,

and not willing to do whatever you now can do to 'fight' for its improvement,

then be ready

to sacrifice absolutely everything you now or ever will have. That's what's at

stake, like it

or not.

Cort