Re: Still's or not Still's?

[Guest guest]

Hey ,

How are you doing today?

  The stomach pain is the nausea from the Mehotrexate...I feel like vomiting

and sometimes I do   but I have a prescription for that and will take a pill

if it gets too bad..I just hate to see it go from ''17 Sunday to 18

Sunday''...otherwise I can handle it...I think.    

Each day is different...so when people ask when I am going back to work I say

 ''I dont know! Believe me, this is no vacation!! "

Diane..42

Re: Still's or not Still's?

Darv,

Right now I am on 15mg. of methotrexate once a week and 15 mg of prednisone

every day plus other pills for other problems...At first I lost 28 lbs with

this disease but it is slowly coming back thanks to the prednisone...i am

starting to watch my salt intake so i dont keep gaining it...we will see.

How much metho and pred. were u on?

Diane 42

[Guest guest]

My boss too 

  I have been out since Sept. and she said   " no matter what Human? Resources

says to you I will always hold your job for you''

....now if I can only get the enthusiasim to get back there...I used to call it

''hell''  

  It still (I hate that word) is..lol

me..42

Re: Still's or not Still's?

All- Amazing the differences in people (who happen to be bosses).

I have been flaring and was in real pain yesterday by the late

afternoon. After a meeting my boss took me aside and said, " you need

to go home while you can still drive. It is important that you take

care of yourself first. " It helps that she had colon cancer 2 years

ago and still suffers from some after effects. Of course, I have had

creeps for bosses before, pre Stills. Good to have an understanding

one at this time in my life. Also good to be able to have the ability

to telecommute at times.

To hell with the creeps, they will always be among us, I am afraid.

Tom from PA

>

> Darv - does your employer have Long Term Disability Insurance?

Because if

> they do, now is the time to do exactly what Elly is saying..

> Having been and Executive in the company I was in, the painting is on

the

> wall... This guy is a creep.. You need to take care of yourself and

get Dr

> s behind you and say you can't work If you have Long Term

Disability, you

> might be able to have some income you aren't aware of.

>

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[Guest guest]

I have that to.. My doc put me on shots of Methotrexate -that made it

somewhat better.

He also put me on leucovorin which I take the morning after I take

Methotrexate. It seems to help settle my stomach some.

Have you tried that one yet. I still wake up feeling sick in the morning,

but it goes away after an hour or so.

My mom taught me a trick that helps too.. Take jello powder(just a teaspoon)

add hot water, dissolve and drink it hot.. It coats your stomach and helps

reduce that stomach pain a bit. I didn't think it would help, but it does.

I lost a lot of wait because of MTX, so now everyone is forcing food down my

throat - but the jello helps, and gingerale helps - sometimes even just a

boost in the morning helps...

Just little tricks I've tried. Maybe they will help you too.

Does your company have LTD? If they do, maybe it's time to think about

fighting for SSDI and using that and LTD.

-- Re: Still's or not Still's?

Darv,

Right now I am on 15mg. of methotrexate once a week and 15 mg of prednisone

every day plus other pills for other problems...At first I lost 28 lbs with

this disease but it is slowly coming back thanks to the prednisone...i am

starting to watch my salt intake so i dont keep gaining it...we will see.

How much metho and pred. were u on?

Diane 42

[Guest guest]

One of the problems I face is that none of my Dr's are keen on giving out

ANY narcotics. When I was a mess (with what turned out be due to Enbrel)

with the slurred speech, falling, violence (among many other problems) they

have thought Enbrel & half thought too many narcotics. Well, long after

(most) of the effects of Enbrel left it is plain to see what was causing the

problem(s).

Another thing that drives me nuts is that once you ask for narcotics

you're watched like a hawk. I don't mind it and readily comply...but I see

no reason for it in my case.

So far I've asked my RD (Doesn't issue narcotics, period) and my PCP who

gave me more refills on the Roxi & Oxy codone along with Valuim.

I still have my pain Dr, and He'll be getting a phone call this week as I

have to call him anyway.

, if you can do me a favor write everything down about this ACTIQ

if you can. I'll be happy if I can get Fentanyl off of him though, as he

isn't keen on narcotics either.

What steams me the most about this situation regarding prescribing

Narcotics is that someone has to be doing a LOT of it ILLEGALLY, as any

idiot can buy them on the street (I know, someone very close to me threw

away an exceptionally good life (over $100k/year + 15k bonus and mandatory 6

weeks vacation..all for monitoring a computer network of the local power

grid) and blew over 500k on drugs & booze in under 2 years. He actuallt

stole from me and is still in hiding from that part....but mostly bought

right off of the street in amounts (ha claims) that I can't comprehend!!!!!

I have been having lower back problems and hip/knee problems (mainly at

night with the hips) and told my pain Dr about that the last time, and due

to the osteoporosis he can no longer do injections. We're supposed to talk

at my next appointment, but I was shooting for 75 MCG Fentanyl. If these

others are better, let me know.

Thanks, Kirk.

Everything in life sucks except things that should!