Re: I am a complete mess.

[Guest guest]

Hi;

All I can say is been there done that. Had a wife and two kids to take

care of when I became ill. Tried to still work full time driving the

city bus but that did not work out. Went on med leave for 6 months still

could not go back and gave up working at that time. I did try about

three years ago to go back and it did me more badly then good with the

stills that are as it did help the bank account some. I know with out

ssi I would be lost and also because of getting ssi I know for my self

it was almost a three year fight to get . With that I would say at lest

start the app now you can call it off later if you need to. If I was in

your shoes I would also cut back on hour's bout school and work trying

to find a balance that may work for me. I know I try to think I am

normal and call still do every thing like before but when I do it lets

me know ya right I will teach you a thing or two. Having stills also I

believe means a reevaluation of our lives. Some can work and many can

not. Some go into a remission and some never do .I did but have also

left it and back with full blown stills for me again. I have had still

for over 5 years now and still have to keep adjusting my life because

stills keep changing on me. what I tell every one is get into concealing

to help with the adjustment and how it can and dose change your life .I

also would say any one you live with should also go as it also affects

them too no dought about that . Then slow down some and do not demand

what you could do one time now .I hat having stills as my life changed

for the most part for the worse but I have also gotten to like stills

and for this one reason. With out stills I would not have met my wife

as my 1st wife divorced me from stills as it scared her. So in a

way stills gave me a gift of a loving caring person. Some thing my ex

was not as she was very self centered and at that time I was to young

and dumb top see it but after 20 years I knew deferent but because of my

vows and kids I would not leave. Now I have some one that cares and

loves and believes like I do a full and equaled partnership and in the

last two years it has only gotten better never worse and in that I am

blessed with stills and that gift. It is all how you look at it. No

matter how bad some thing is most of the time you can fond at lest one

good thing from or because of the bad or it's out come

Hugs all

Marty the redneck dragon fighter

[Guest guest]

Hi Jessie,

Thought I would chime in as another voice of hope... because this is

such a whacked disease, finding the right treatment for you is going

to take some time. It's all trial and error. I would definitely

consider a medical leave from school for at least this semester, then

see how you do on Kineret before you decide about next semester. If

you don't do well on Kineret by week 8 or so, ask your Rheumy about

trying something else--some people do well on Enbrel, others on

Remicade, others of Humira. Since each new drug needs a while to kick

in, you can plan on 6-8 weeks of " test " time before you decide what to

do next. If you didn't do well on Methotrexate, you might try it again

in the injectible form. A lot of people have a terrible time with the

pills but do really well on injections, and from what my Rheumy has

said, a combo of DMARDs and Biologics seems to work best in Still's.

Oh--I'm not sure if you can take MTX and Kineret at the same

time--would need to check that. I do know you can take MTX and Enbrel

together.

I did what you're trying to do--worked full time through all of the

sorting out my drugs while suffering the worse of the pain and

flares--and that was a HUGE mistake. In retrospect, I would

have/should have taken 3-6 months off, given my body its best chance

to start to feel better. Even if you feel like a " burden " to your

family, you have to think about short term sacrifice for long term gain.

I'm now 1 1/2 years into this dragon fight and most days are pretty

darn bearable and some days are quite excellent. I'm able to work

full time (flexible schedule) at a job I absolutely love and sometimes

can participate in the activities (like gardening, boogie boarding,

sailing) I used to do. Last fall I was just like you--hobbling around

on a cane and crying and thinking that I would never have any relief.

So yes, there's hope.

in Maine

[Guest guest]

karen --

wait...did you say that it can sometimes take up to 8 weeks before seeing

results with some of these drugs? is enbrel included in that list, as well?

thanks!

xoxo

muffy

>

> Hi Jessie,

> Thought I would chime in as another voice of hope... because this is

> such a whacked disease, finding the right treatment for you is going

> to take some time. It's all trial and error. I would definitely

> consider a medical leave from school for at least this semester, then

> see how you do on Kineret before you decide about next semester. If

> you don't do well on Kineret by week 8 or so, ask your Rheumy about

> trying something else--some people do well on Enbrel, others on

> Remicade, others of Humira. Since each new drug needs a while to kick

> in, you can plan on 6-8 weeks of " test " time before you decide what to

> do next. If you didn't do well on Methotrexate, you might try it again

> in the injectible form. A lot of people have a terrible time with the

> pills but do really well on injections, and from what my Rheumy has

> said, a combo of DMARDs and Biologics seems to work best in Still's.

> Oh--I'm not sure if you can take MTX and Kineret at the same

> time--would need to check that. I do know you can take MTX and Enbrel

> together.

>

> I did what you're trying to do--worked full time through all of the

> sorting out my drugs while suffering the worse of the pain and

> flares--and that was a HUGE mistake. In retrospect, I would

> have/should have taken 3-6 months off, given my body its best chance

> to start to feel better. Even if you feel like a " burden " to your

> family, you have to think about short term sacrifice for long term gain.

>

> I'm now 1 1/2 years into this dragon fight and most days are pretty

> darn bearable and some days are quite excellent. I'm able to work

> full time (flexible schedule) at a job I absolutely love and sometimes

> can participate in the activities (like gardening, boogie boarding,

> sailing) I used to do. Last fall I was just like you--hobbling around

> on a cane and crying and thinking that I would never have any relief.

> So yes, there's hope.

>

> in Maine

>

>

>

[Guest guest]

Hi Jessie,

I am so sorry you are flaring and not doing well. It seems like there

is never just a comfort zone really where we can be without some kinda

pain or something going on.

There's only one absolute with this dragon: We never can tell what the

next moment brings let alone what tomorrow will bring. This is the

reality of this dragon--sad but true.

There will never be any solid answers as to when this will end or if

it will end. I have learned the hard way to never plan for anything. I

just live moment to moment--especially since the dragon has been so

active with me.

I hope you can find an even ground with this and your school. Some may

be able to while other's do not because this dragon is WAY out of

control. Always remember to take care of yourself first of all. I

know, I know--easier said than done. But try.

Hugs,

, Oregon

>

> I am thinking about reducing my course

> load or even taking a medical leave of absence from school to

> concentrate on getting better. I am also thinking of applying for

> social security. But I don't want to do any of this if I'm going to

> be better in a month. Has anyone else gone through this. It's just

> right now, I am a finacial drain on my family. I really don't know

> what to do. Am I just being a baby? How do you guys deal? I

> really need as much help as I can get. Like I said, I'm a mess.

>

[Guest guest]

I totally understand your frustration. I was were you are a year ago. I am 35

now and have been a nurse since I was 17. I worked full time in a Jail and went

to school for my forensics degree. I love crime scenes and working. Last August

2005 , I had gotten very sick and was in the ICU unit. I had to stop my

forensics and work. I was so depressed. It is hard when you have an illness that

takes over your life. I lost a Fiance' and many friends. My close friends are

still there for me and I have alot of support. It is still difficult to not have

the social life I did. It takes time to understand this disease. I have people

in the group who without there help I more than likely would not be here today.

If there is ever a time you need to vent feel free to contact me at

blondedolphin172@... I will help if you need it. All I can tell you is at

first this disease feels as if you are dying but slowly with people's help it

will get better. keep your chin up.. and remember you are not alone.

Danni

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[Guest guest]

Hi Muffy--I've been wondering what happened to you! How are you doing?

All the literature says " up to 3 months " to feel the full effects of

Enbrel. My rheumy said 6-8 weeks is more common. He also said some

people start feeling better within a week or two and with each

progressive dose get even better until leveling off around the 3 month

mark. When I started Enbrel (in combo with prednisone and MTX), I

really noticed a difference around week 6 in terms of fevers and

rashes. For now, MTX seems to be better at keeping away the joint

pain for me.

in Maine

>

> karen --

>

> wait...did you say that it can sometimes take up to 8 weeks before

seeing

> results with some of these drugs? is enbrel included in that list,

as well?

>

> thanks!

>

> xoxo

> muffy

>

[Guest guest]

All I can tell you is at first this disease feels as if you are dying

but slowly with people's help it will get better. keep your chin up..

and remember you are not alone.

>

> Danni

>

Danni--WOW. You said it perfectly.

[Guest guest]

hi, karen! thanks for the timely and helpful response!

i have been feeling just okay, but was so busy working on a job for the

disney channel that i quite literally had no time to embrace the horror.

well, the job is over.

=:-)

at any rate, earlier this summer i tried enbrel but only got two shots (1

week apart) before i was told that if it hadn't started working in that time

period, that it wouldn't. so, next we were going to try the kineret. should

i go back and give the weekly dose of enbrel another shot (so to speak!) and

give it some more time to take affect before moving on to the daily

pain-in-the-keester dose of kineret?

what say the stilligans jury? please advise.

thanks, everyone!

xoxo

muffy

>

> Hi Muffy--I've been wondering what happened to you! How are you doing?

>

> All the literature says " up to 3 months " to feel the full effects of

> Enbrel. My rheumy said 6-8 weeks is more common. He also said some

> people start feeling better within a week or two and with each

> progressive dose get even better until leveling off around the 3 month

> mark. When I started Enbrel (in combo with prednisone and MTX), I

> really noticed a difference around week 6 in terms of fevers and

> rashes. For now, MTX seems to be better at keeping away the joint

> pain for me.

> in Maine

>

>

> >

> > karen --

> >

> > wait...did you say that it can sometimes take up to 8 weeks before

> seeing

> > results with some of these drugs? is enbrel included in that list,

> as well?

> >

> > thanks!

> >

> > xoxo

> > muffy

> >

>

>

>

[Guest guest]

Muffy,

Obviously I can't predict--everyone is different--but two weeks

doesn't seem like enough time. This is what I'm getting from

Enbrel--reduced rashes, fevers, nightsweats, and fatigue. It does a

little bit in terms of reducing joint pain, but really I've been

relying on MTX to handle that part. I know a lot of people have good

luck with Kineret, but I'm trying to stay away from the daily

injections, keeping it refrigerated and handy, and the site reactions.

It's still on the " just in case " list.

Yesterday I just got two changed prescriptions--the first for

injectible MTX so I can up my dose without too many nasty side effects

(worse for me are the headaches and, um, intestinal distress). The

other is for the self-mixing version of Enbrel so I can split the dose

in half--25 mgs. on Saturday, 25 mgs. on Wednesday. My rheumy says

that for Still's patients, this seems to make a difference (oddly

enough, not for other related diseases that use Enbrel). Will let you

know how it works out once I start.

Good to know you're still working--I am too. Sometimes I feel it's

better to just work through the pain. Keeps my mind occupied and the

depression at a distance. Then again, other days I wish I could just

stay in my pj's and nap all day! I suppose the ideal job would be one

where I can wear my nightgown and unroll my nap mat when needed. At

least right now I can wear my flipflops and no socks! Will have to

come up with a " shoe plan " when the snow starts flying.

in Maine

>

> hi, karen! thanks for the timely and helpful response!

>

> i have been feeling just okay, but was so busy working on a job for the

> disney channel that i quite literally had no time to embrace the horror.

> well, the job is over.

>

> =:-)

>

> at any rate, earlier this summer i tried enbrel but only got two

shots (1

> week apart) before i was told that if it hadn't started working in

that time

> period, that it wouldn't. so, next we were going to try the kineret.

should

> i go back and give the weekly dose of enbrel another shot (so to

speak!) and

> give it some more time to take affect before moving on to the daily

> pain-in-the-keester dose of kineret?

>

> what say the stilligans jury? please advise.

>

> thanks, everyone!

>

> xoxo

> muffy

>

>