Re: Remission on methotrexate-- Kind of long

[Guest guest]

KUDOS to you Marty, for how you worded your answer! You said exactly what I'd

wanted to say, but couldn't find the proper wording -- I didn't want to sound

like a b*tch in my response; however, when I tried 3 different times to politely

yet accurately word my response & didn't manage to do it, I just left it simple

& kind of 'generic'. It seemed each time I'd read what I'd written, even *I*

got offended with my words, lol.....

Adam, if you are reading this (or, anyone else who is a relatively newly dx'd

person), I can't tell you how many times I'd prayed that there would be

something that I could find that would put me into remission; something that

would allow me to even partially get some of my " old life " back....however,

nothing has done that for me. I was 27 when I was dx'd. A divorced single mom

of 2 little boys who had so much life ahead of her...so many things to show &

teach her kids. This 'demon-spawn' of an illness almost took my life during

that initial hospitalization, but I managed to get through it. I fought very,

very hard to get back to a somewhat 'normal' life to support myself & my boys.

I was working again & we were doing ok; however, within 3 yrs of onset, my

rheumy finally told me that was it--he could not give me the ok to go back to

work. By this point, I'd gotten to where I couldn't even get in 20 hrs per week

at work; I was borrowing sick time from the following year & I was in the

rheumy's office at least twice a week for injections of cortisone and solumedrol

& torridol. That final day in January 2001 when he looked at me & said, "

I know you've fought so hard to avoid this, but the time has come when you need

to make a choice -- it's either your job or your life. I can't allow you to go

back to work. " I'd known this day was coming & I fought like the hounds of hell

to avoid it, but it was finally here. Physically, my body was MORE than ready

to stop -- but mentally I crumbled at the thought. Here I was, 30 yrs old &

being forced into retirement all because of some stupid illness! I can't tell

you what that did to my emotional well being. It's now been 8 yrs since I've

worked and I STILL feel guilty about it! I was raised to be independent -- you

don't get anything without working hard for it & you take care of yourself and

your family, yet I can no longer do that. I still beat myself up sometimes when

I think about how I wouldn't be in the financial crap-hole I'm in now if I could

just go back to work. I was making really good $$ before I was forced to stop

working, & if I'd been able to stay, I'd have no problem paying the bills. It

wouldn't take me months to save up for a pair of sneakers for my kids if I could

still work, etc, etc, etc. But, in the same token, had I ignored the Dr & gone

back to work, I doubt I'd be here today.

Marty is correct when he said that expecting a medicine to make you " normal "

again is a set up for disappointment. Sadly, there will *never* be normality

for us again. It boils down to the fact that we each need to learn how to

re-manage our lives around this dragon. We need to learn to listen to our

bodies & learn our limitations because if we don't, our bodies WILL shut down on

us. I hope there really is a combo of meds that allow you to keep working, but

please keep in the back of your mind that there is the possibility that it may

never happen.

Chris

snickrdoodls@...

Re: Remission on methotrexate

Adam

I may sound like a negative person with this post but I have to say it. I

was Dx with stills Dec. 2000 I did after a time get what I call a remission

around 2003 but it was only a lessing of problems and yes I did end up drug free

some of that time. I have never been able to go back to work and yes I have

tried. I was only 41 when DX and am 50 now. I was on MTX and the steroids at

first and am still on MTX tried remacaid but it almost killed me so back the MTX

again. I also consider myself lucky in that I have no joint damage to speak of

just some organ trouble now and then. You must remember there is no cure and

there is no deferent medication that can or will stop stills and induce a

remission. Stills is an illness of control and the best is to control the damage

it can do and dose do to some people. yes some are lucky and receive a remission

for what reasons it is not known be it the medications they take a change in

life styles and the

lowering of stress mental and physical but what ever it is, is not know at

all. Some do not eve get a remission but learn to live with a leasing of stills

problems. If a person is in a must have a remission or leasing of problems then

it is almost a set up for a disappointment as that will only induce stress to

you own self mentally in trying to work for a almost magical cure or medication.

Again there is no cue or magic pill to make stills go away. stills is a life

long chronic illness that once diagnosed you will always have some will be at

deferent leaves then other at deferent points in there life’s but even with a

remission there is no guarantee or doctor warrantee that it will not come back

and that the dragon will not bite you again either harder or maybe a bit softer

then the first go around. The best is to understand the limits and work with in

them and lead as much of a normal life as possible in that fact

okay I will get off my soap box but when I hear or read that some one needs

to have a medication or what ever to get back to living as before stills it

tells me that it is not a acceptance of the fact stills is a none curable

illness

sorry if I offended any one but I lost a big part of my life because of a

search for a cure or magic pill and when I started to learn to live with stills

thing did get better not great mind you but better

Hugs all

the redneck

Marty G.

.