RE: Re: New poll for - Rick

[Guest guest]

Oh, you really think 1000 options would do it? ;-)

Sorry, just feeling cantankerous lately. But...

I do feel this poll has raised some interesting

discussion. Otherwise, I can't shake the feeling

of what is the meaning of a poll if many people are

like me and arbitrarily pick some number because they

don't really relate to the options given? Note, this

is not true of all the polls, it's just this particular

one that 'gets' to me. Is it better to just not

respond?

Rick Hahn wrote:

> Hi . You're right it's very difficult to express your condition

> in any poll (with less then 1000 options).

--

kjg@...

Canberra, ACT Australia

[Guest guest]

Rick and all,

I feel like I'm getting stuck in the tar-baby (Brer Rabbit?).

I don't mean to be critical, I'm not questioning intent.

In fact, the more I ponder this, the more confused I am

getting.

I started this question because I wanted to know if others

felt the same kind of confusion that I felt. I got some

interesting information from Granny (thanks). But, the

question that I think I am asking is not being addressed.

So, obviously I'm not asking it properly.

I want to stress totally and completely that I hugely

appreciate the work you guys put into running this forum.

It has been so meaningful to me. Again, I wasn't trying

to be critical, but to say this confuses me. I want to

know if others feel confused by this also or is my

confusion totally out of the ordinary. I recognize that

everyone has good days/bad days, variable days etc.

But, I think my problem is that I really don't know

how to evaluate my own self.

The more I ponder this, in fact, the more I do realize that

this is a real issue for me. The real truth is that I really

cannot remember being pain free in my entire life. When

I was about 4-5 years old, my aunt gave me 1/2 an aspirin.

Her daughter was sick (fever??) and my aunt gave her aspirin.

Being a typical small child, I wanted attention and cried.

So, she gave me some. Well, it was like going from night to

day, I felt so totally different - better, able to run around,

go outside and play instead of sitting inside being quiet.

From then on I was an aspirin addict, begging it off anyone

that was around. I hoarded aspirin and by the time I was

9, I was carrying around my secret cache, stealing aspirin

from everywhere I could find it until I was old enough to

have my own money and could buy my own. By the time I was 13,

I was taking 3 aspirin every 3 hours around the clock. I would

wake up around 2am because of pain, take some aspirin before

I could go back to sleep. Telling my mom, my aunt, other

relatives and later doctors was a useless exercise. No one

believed I could be in that much pain. So, I came to think

that everyone had the same kind of pain that I did and that

I was the wimp for not being able to do without the aspirin

or be as active as everyone else even with it. Until my MRI

came back 2 years ago showing proof that I had a 'real' problem,

I guess I didn't believe it myself. So, my question about the

poll is really a question about myself.

I'm sorry for being so aggro about this, but I guess this

is something I really need to deal with.

Rick Hahn wrote:

> Hi ,

> We decided very early on that RISG would be a non-profit org and not

> a foundation. ...

G

--

kjg@...

Canberra, ACT Australia

[Guest guest]

In a message dated 1/7/03 8:01:09 AM, kjg@... writes:

<< But, the

question that I think I am asking is not being addressed.

So, obviously I'm not asking it properly. >>

What is the question?

Pris

[Guest guest]

In a message dated 1/7/2003 8:01:35 AM Pacific Standard Time,

kjg@... writes:

> So, I came to think

> that everyone had the same kind of pain that I did and that

> I was the wimp for not being able to do without the aspirin

> or be as active as everyone else even with it

At one point, Adrienne asked me, 'does everyone have headaches every day? "

She was probably about 12 or 13 at that time. Way before any diagnosis. I

recall taking her to the Doctors several times a month for pain, and being

told... ( which infuriated me) that she could not Possibly be in this much

pain and obviously she is just trying to get attention and is making a big

deal out of little bits of discomfort. I didn't buy what the doctors in the

HMO said... I was so disgusted, I began the search for answers outside the

HMO and did it backwards... called the doctors I wanted her to see, and asked

them, How do we get in to see you and have the HMO pay for it. It took lots

of time, energy and battles. But finally we got the answers and the

diagnosis...that she wasn't making this all up. And finally we left the HMO

and now she has real doctors who treat her.

My heart goes out to you, that you had to deal with t his for so long without

the acknoledgement and support.

K

Adrienne's Mom

Adrienne age 19

[Guest guest]

, after reading about your childhood and use of NSAID, I wondered how

many youngsters have arthritis and aren't being treated because they just

grow up with pain which they think is *normal.* Actually, the aspirin all

those years (if it didn't cause you to have ulcers) probably prevented you

from being even worse off than you are today...which probably doesn't help

you very much. You really do have more problems then most of us, unless there

are others " in the background " that haven't come forward. (Please do...and

tell us your stories.) Just curious, because you took so much aspirin all

those years, did you have any kidney problems?

Best regards, Connie (granny)

[Guest guest]

Adrienne's Mom,

God bless you for being such a good Mom. It upsets me to read about the

doctors' attitudes. I have had Reactive Arthritis since I was 10 yrs. old.

I'm now 39, and I went through the same thing but my parents weren't as

savvy as you are. I had severe Achilles Tendonitis that wouldn't heal. The

pediatrician told my Dad that I was probably faking. It's quite an

imaginative child to fake something as obscure as Achilles Tendonitis! Who

would even think of that? I never got proper care or even a diagnosis until

age 34 when I started seeing a faculty member at UCSF, Dr. Sack.

He's been my doctor ever since. The first time I saw him after going

undiagnosed and treated for 24 years, he said " Well, this isn't rocket

science. It's perfectly obvious what you have. " I'm so sorry children with

spondyloarthropathys are still being abused by incompetent members of the

medical profession. There is a lingering tendency to disbelieve women and

children. It's so easy to beat up on kids because they can't fight back.

Again, God bless you for being an advocate for your child.

Janet in San Francisco

Re: Re: New poll for - Rick

In a message dated 1/7/2003 8:01:35 AM Pacific Standard Time,

kjg@... writes:

> So, I came to think

> that everyone had the same kind of pain that I did and that

> I was the wimp for not being able to do without the aspirin

> or be as active as everyone else even with it

At one point, Adrienne asked me, 'does everyone have headaches every day? "

She was probably about 12 or 13 at that time. Way before any diagnosis. I

recall taking her to the Doctors several times a month for pain, and being

told... ( which infuriated me) that she could not Possibly be in this much

pain and obviously she is just trying to get attention and is making a big

deal out of little bits of discomfort. I didn't buy what the doctors in the

HMO said... I was so disgusted, I began the search for answers outside the

HMO and did it backwards... called the doctors I wanted her to see, and

asked

them, How do we get in to see you and have the HMO pay for it. It took lots

of time, energy and battles. But finally we got the answers and the

diagnosis...that she wasn't making this all up. And finally we left the HMO

and now she has real doctors who treat her.

My heart goes out to you, that you had to deal with t his for so long

without

the acknoledgement and support.

K

Adrienne's Mom

Adrienne age 19

[Guest guest]

K,

Thank you for your thoughts. I am so glad that Adrienne has

such a strong advocate. What a wonderful mother you are!!

G

Firstwifek@... wrote:

>

> At one point, Adrienne asked me, 'does everyone have headaches every day? "

> She was probably about 12 or 13 at that time. Way before any diagnosis. I

>

> My heart goes out to you, that you had to deal with t his for so long without

> the acknoledgement and support.

> K

> Adrienne's Mom

> Adrienne age 19

>

--

kjg@...

Canberra, ACT Australia

[Guest guest]

I'd be interested in hearing about that too. I've had ReA since I was 10.

The doctors told me to take 10 aspirin a day. I refused on the theory that

I wanted to have an intact stomach when I grew up. I now have a very severe

treatment resistant form of the disease. I wonder if I am better off not

having taken any medication until adulthood since there weren't good meds.

when I was a kid, or if I wouldn't have gotten as bad if I'd listened to the

doctors. I would be interested to hear the outcome of someone who took the

massive doses of aspirin as a child and what happened.

Janet in San Francisco