Reiterate

[Guest guest]

Greetings Dragon Slayers

I'd like to reiterate what Bob wrote about today, and my earlier (last week's)

e-mail about giving out information to the group, as though it were gospel.

We are each and every one of us different Physiologically, physically

emotionally...everyway. What works for one person may not work for you! However,

there are many drugs that can be prescribed, the one that works for YOU is the

right drug!

We have many new members, just now getting their " sea-legs " with Stills Disease,

I don't want any one of us responsible for frightening them about perceived GOOD

or BAD drugs. Would anyone?

So, please take it easy oldtimers, be sensitive to others concerns! Keep " YOUR

EXPERIENCES " just that...your experiences.

Be the informative, uplifting and caring souls that you all are, and stop drug

bashing please.

I thank you in advance for thinking before you jump the gun.

Smiles and regards

Cat

[Guest guest]

Cat

When you said "  So, please take it easy oldtimers, be sensitive to others

concerns! Keep " YOUR EXPERIENCES " just that...your experiences.

Be the informative, uplifting and caring souls that you all are, and stop drug

bashing please.

I thank you in advance for thinking before you jump the gun. "

I have to agree so fully here it is unreal and as an example I will use some

thing that happened to my self with a med that many here were helped with some

for a short time and others for a long time . the Drug is remacaid ( spelling )

any hoot I did okay on it for a short time then ended up in the hospital and

then it almost killed me because of a reaction to it that was then and still is

very rare It made my blood pressure go out of control first screaming high then

dropping like a boulder in a swimming pool all the time keeping the ICU people

running like chickens with there heads cut off because just as they thought

they got it controlled from one thing it took off in the other direction. now

based on that no one would touch that stuff if they all were like me but I am me

and every one other is them self and thankfully for that many have been helped

with it. now this also happened just after it was FDA approved and it has sense

then been tweaked a

bit and things like that are even moire rare today.

 Now another drug that many have trouble with one way or another is MTX well

for me never really did except for a bit of feeling sick to my gut some times

and for a day or two later being out of any get up and go. and yes it did

after  some years on it the second time around also help kick in my depression

some . now when changed to the shoots no more feeling sick to the gut a little

less feeling tied and just a bit of the depression stuff. so for me it is a

wonder drug were as for others it dose not seam to help them all that much but

for me it is like that wonder drug or magic pill almost not perfect but darn

close to it. so just with the two you can see how I was with them is very

different then most here . one almost got me and yet others do very well with it

and then one most say it dose not help them much is like the wonder drug for me

.. this is why I do not say much about any drug because what works for me may not

for you and the same with it

the other way around. kind of Like Doctors there may be one you do not like but

others my as we all have a deference in likes wants and what or how we deal with

things and people. just like some want a young fresh out of school doc as they

feel they will be more up on the newest and greatest things and others want an

older more experienced one who has a lot of time under there belt so that they

have seen or heard almost all of it . then others want one in the middle.

With stills the new are normally scared and confused and have no idea whats what

how to feel or what to expect . the middle of the road people are normally

wanting there life back as it was and there willing to try almost any thing to

have that and have gone threw the ssdi deal and all of its hoops and games. the

old hands have learned to accept it not like it but accept it and live there

lives the best they can under the limits placed on them from stills. they have

the SSDI thing down and have gone threw a review or two and are some what in a

grove as to a med cocktail and such may have had a remission  or two but also

know that even if given a remission there could or will be that tie it comes

back and you start almost over again but only this time your more skilled at it

all so you take it more in stride. its almost like going threw a 12 step program

for any thing and the last step is the 12th step same with the advice and given

you can almost tell

what and were some are by how they respond to others be it the new confused to

the angry I want my life back to the ya I do not like it but that life get over

it and move on thing. I just hope for my self I come off more in the last part

then any of the other ones or at lest most of the time

 so thanks Cat and Bob because like every thing my results may not be the same

ones you get .

hugs all 

the redneck

Marty G.

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

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

 

________________________________

To: aosd stilligans <stillsdisease >

Sent: Thu, June 3, 2010 7:33:19 PM

Subject: Reiterate

 

Greetings Dragon Slayers

I'd like to reiterate what Bob wrote about today, and my earlier (last week's)

e-mail about giving out information to the group, as though it were gospel.

We are each and every one of us different Physiologically, physically

emotionally...everyway. What works for one person may not work for you! However,

there are many drugs that can be prescribed, the one that works for YOU is the

right drug!

We have many new members, just now getting their " sea-legs " with Stills Disease,

I don't want any one of us responsible for frightening them about perceived GOOD

or BAD drugs. Would anyone?

So, please take it easy oldtimers, be sensitive to others concerns! Keep " YOUR

EXPERIENCES " just that...your experiences.

Be the informative, uplifting and caring souls that you all are, and stop drug

bashing please.

I thank you in advance for thinking before you jump the gun.

Smiles and regards

Cat

[Guest guest]

My thought is that we are all so desperate to have some semblance of our old

lives back, we are willing to anything to get there. That includes helping

others with the best intentions but subliminally selfish too. Hey what works

minimally for me might work better for you kind of thing. Like you can at least

suggest it to your rheumy then they can consider the benefits vs the risks. This

was the case when I too was having the barf fest the day after taking MTX via

pill form. I saw that others here were doing the shot and asked my rheumy if he

thought it would help me and now I too am doing the weekly injection. No more

barf fest (knock on wood). I personally realize my medical limitations and trust

in my team of specialists. This has been really difficult as I really had a

battle getting a diagnosis - like close to 20 years of going from dr to dr. But

when I share what meds I am on, it is with the hopes that maybe just maybe, it

will be someone else's wonder drug, and then magically perhaps it will do the

same for me. I am getting closer to the whole acceptance part but a girl can

dream can't she? Thanks for the reminder that we should be here for each other

and keep all of the diversity of this group in mind while replying to posts.

Whether it be meds, symptoms, lifestyles, countries, whatever!

Beth