Re: Re: ATTN: Questions for all

[Guest guest]

Good day to you as well Ed,

I don't know that we've met yet as I've been gone a lot lately, but I would like

to suggest that you try to get across to your doctor the extreme hardship the

reduction of the steroid is having on you and ask if he/she could do is slower

or in smaller increments. Often our bodies or the disease does not want to let

us decrease as fast as a doctor may think is " scheduled " . It has to go as your

particular case merrits if you know what I'm saying. There were times that my

disease would only allow me to reduce a half a miligram at a time for a period

of time before the next decrease.

I would also strongly suggest you start speaking to your doctor now! about not

being able to return to work too soon. If you don't or your doctor doesn't

listen to your sympotoms of the disease course it may very well stay chronic or

get worse again because this disease percieves any stressors as an attack to

your system and reacts negativly in my thirty years of experience. These are

only my experiences but I would speak openly and frankly with you doctor about

these issues and not wait until you doctor makes decisions without knowing how

your doing with the changes. Good luck with it.

----- Original Message -----

From: eddlg01

>I don't post much, but I'll tell you I've been out off work for 3

month and was taking 40 mg off predn.and i was felling OK on my

joint pain but the Dr. is taking me off the predn. slowly an at this

moment taking 15 mg of predn. my joint are hurting and have no energy

to do nothing....not even to paid the bills. Walk from my garage to

the mail box an come back inside all wear out...

> I think the Dr. will send me to work next month an i have no IDEA

how i will manage this issue when I'm getting tire even when I'm

relapsing doing nothing.

>

>Thank you

> ED

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[Guest guest]

Mike, thanks for writing. My husband has SD, too. Have you been reading the

last few weeks? I just joined a few weeks ago so you may have already read his

story. Anyway, he is 36 with 3 young kids and we only have about 6 weeks left

of paid time off so he thinks he is going back to work no matter what. He

doesn't feel he has a choice either and, really, we don't have much of one if we

want to keep our home. Anyway, your story sounds a lot like his. It has been 5

months. He went from being extremely healthy and active to this mess.

I've been wanting to write to tell everyone that Mark is really having a hard

time with it all. He is not depressed, but just doesn't feel like he can face

reading your e-mails. He is very glad that I am trying to do all the research I

can and he is happy to have me as his patient advocate as well as his wife, but

he said to me that he just doesn't think he can handle knowing what all could go

wrong yet. I told him that there are a few e-mails that his perspective may

help with and he said he would answer them.

But, reading your e-mail, Mike...well, I think that will help him. So thanks.

Last night, he said that he is ready to try to talk about it and he actually

finished the sentence... " I feel... " for me. He said " confused. " He is confused

as to what he should do about changing from Kineret to Remicade. He is confused

about a lot, but just to have him finish that sentence was a really big deal!

He has always been invincible.. I'm sure you guys out there understand and

relate to that!

I know I get pretty wordy these days...I just needed to let some of that out.

He is planning on e-mailing a bit. Also, we found out over NY that his best

friend (since they were 3 yr old) needs a liver transplant. Long story

short....he started bleeding from his esophagus, has been in ICU and is fighting

infections. Once the infections are under control, they will send him to a

liver transplant center. Mark hasn't been able to go and see him, so this is

also taking its toll. He almost died those first few days.

Hopefully you all will " meet " him soon. Until then, you're stuck with me. LOL

:-) !!!

Bus is here...bye.

Jody

BTW, today is his best day ever since SD-Day August 11th!

Re: ATTN: Questions for all

> > >

> > > I am so sick & tired of everyone (well, almost) in my family

> > telling me

> > > that I shouldn't be as tired as I am all the time and that

Stills

> is

> > not the

> > > cause. IF you are exhausted, will you please reply about how

you

> used to

> > > feel as compared to now? How are you energy wise? How many

hours

> per

> > day do

> > > you realistically need BEFORE you feel well enough to crawl out

> of bed?

> > > I know the answers will vary, just as this disease does to

each

> > of us.

> > > But there was a discussion at my house tonight & my wife &

mother

> were

> > > telling me that I had become LAZY and that NO ONE needs to

sleep

> that

> > > long.....

> > > Please do not post anything derivative towards them, it's

not

> their

> > > fault they have no idea what they're talking about!!!

> > >

> > > Also for those of you who can't stay asleep at night due to

> > pain...add in

> > > your two cents if you would.

> > > Thank You, Kirk.

> > >

> > > --

> > > Everything in life sucks except things that should!

> > >

> > >

> > >

[Guest guest]

Hi Jody.

My name is and I have had SD almost 10 years. I also have several other

'secondary' illnesses that have come to play since I got SD.

In the beginning, I was misdiagnosed and the dr's put me on Prednisone, and I

was able to return to work. Once I was dxd with SD, I was put on Methotrexate

and a combination of other meds to get the disease under control. It took about

3years, but I was eventually able to wein off the steroids.

In the beginning, I too was scared to death. I didn't know if I would become

handicapped. I didn't know if I would be able to continue working. I didn't know

how my life was going to change. But, I had to do what I had to do.

The only medicine I now take for SD is Kineret. I recently stopped MTX because

of drug-induced Hepatitis. I still have joint pain,muscle pain and sometimes

fever in the evenings, but I walk, I play, I work and live a fairly normal life.

And all the Rheumy's I have seen over the years have said they do not think I

will have joint destruction like those with RA. --YIPPEE--

One of the hardest parts for me was accepting the fact I will always have a

chronic illness. Accepting I will always have to take pills, every day of my

life. Accepting I will have to go to the doctor much more than anyone else I

know in my age group. (I have sat in many waiting rooms where I was the youngest

by 30-40 years.I love people, so it never bothered me) But I did it. Mike can do

it too.

Just remind him that everyone is different and although some of the stories he

will hear are frightening, he is Mike. His story will be very similiar but very

different.

Good luck.

Keep on....

KEEPIN ON.

Jody Klein wrote:

Mike, thanks for writing. My husband has SD, too. Have you been

reading the last few weeks? I just joined a few weeks ago so you may have

already read his story. Anyway, he is 36 with 3 young kids and we only have

about 6 weeks left of paid time off so he thinks he is going back to work no

matter what. He doesn't feel he has a choice either and, really, we don't have

much of one if we want to keep our home. Anyway, your story sounds a lot like

his. It has been 5 months. He went from being extremely healthy and active to

this mess.

I've been wanting to write to tell everyone that Mark is really having a hard

time with it all. He is not depressed, but just doesn't feel like he can face

reading your e-mails. He is very glad that I am trying to do all the research I

can and he is happy to have me as his patient advocate as well as his wife, but

he said to me that he just doesn't think he can handle knowing what all could go

wrong yet. I told him that there are a few e-mails that his perspective may help

with and he said he would answer them.

But, reading your e-mail, Mike...well, I think that will help him. So thanks.

Last night, he said that he is ready to try to talk about it and he actually

finished the sentence... " I feel... " for me. He said " confused. " He is confused

as to what he should do about changing from Kineret to Remicade. He is confused

about a lot, but just to have him finish that sentence was a really big deal! He

has always been invincible.. I'm sure you guys out there understand and relate

to that!

I know I get pretty wordy these days...I just needed to let some of that out. He

is planning on e-mailing a bit. Also, we found out over NY that his best friend

(since they were 3 yr old) needs a liver transplant. Long story short....he

started bleeding from his esophagus, has been in ICU and is fighting infections.

Once the infections are under control, they will send him to a liver transplant

center. Mark hasn't been able to go and see him, so this is also taking its

toll. He almost died those first few days.

Hopefully you all will " meet " him soon. Until then, you're stuck with me. LOL

:-) !!!

Bus is here...bye.

Jody

BTW, today is his best day ever since SD-Day August 11th!

Re: ATTN: Questions for all

> > >

> > > I am so sick & tired of everyone (well, almost) in my family

> > telling me

> > > that I shouldn't be as tired as I am all the time and that

Stills

> is

> > not the

> > > cause. IF you are exhausted, will you please reply about how

you

> used to

> > > feel as compared to now? How are you energy wise? How many

hours

> per

> > day do

> > > you realistically need BEFORE you feel well enough to crawl out

> of bed?

> > > I know the answers will vary, just as this disease does to

each

> > of us.

> > > But there was a discussion at my house tonight & my wife &

mother

> were

> > > telling me that I had become LAZY and that NO ONE needs to

sleep

> that

> > > long.....

> > > Please do not post anything derivative towards them, it's

not

> their

> > > fault they have no idea what they're talking about!!!

> > >

> > > Also for those of you who can't stay asleep at night due to

> > pain...add in

> > > your two cents if you would.

> > > Thank You, Kirk.

> > >

> > > --

> > > Everything in life sucks except things that should!

> > >

> > >

> > >

[Guest guest]

Jody,

Thank you for the email and I hope to hear from Mark sometime soon. It was a

very scary thing especially facing the uncertainty on a daily basis is this how

my life is going to be at such a young age. So far I have been really lucky and

just pray that my good luck continues.

I know the finacial uncetainty that this disease can bring and mark is very

lucky to have a very supportive wife like you. My wife has and sometimes still

does struggle with the thought that this could be an ongoing problem throughout

our life but she copes best as she can. My kids are fairly young and I don't

think really understand the scope of it all and I actually thank god for that.

Tell mark to keep up the good fight and I am here for you guys whenever you

need me.

Gotta work,

Mike...

Jody Klein wrote:

Mike, thanks for writing. My husband has SD, too. Have you been

reading the last few weeks? I just joined a few weeks ago so you may have

already read his story. Anyway, he is 36 with 3 young kids and we only have

about 6 weeks left of paid time off so he thinks he is going back to work no

matter what. He doesn't feel he has a choice either and, really, we don't have

much of one if we want to keep our home. Anyway, your story sounds a lot like

his. It has been 5 months. He went from being extremely healthy and active to

this mess.

I've been wanting to write to tell everyone that Mark is really having a hard

time with it all. He is not depressed, but just doesn't feel like he can face

reading your e-mails. He is very glad that I am trying to do all the research I

can and he is happy to have me as his patient advocate as well as his wife, but

he said to me that he just doesn't think he can handle knowing what all could go

wrong yet. I told him that there are a few e-mails that his perspective may help

with and he said he would answer them.

But, reading your e-mail, Mike...well, I think that will help him. So thanks.

Last night, he said that he is ready to try to talk about it and he actually

finished the sentence... " I feel... " for me. He said " confused. " He is confused

as to what he should do about changing from Kineret to Remicade. He is confused

about a lot, but just to have him finish that sentence was a really big deal! He

has always been invincible.. I'm sure you guys out there understand and relate

to that!

I know I get pretty wordy these days...I just needed to let some of that out. He

is planning on e-mailing a bit. Also, we found out over NY that his best friend

(since they were 3 yr old) needs a liver transplant. Long story short....he

started bleeding from his esophagus, has been in ICU and is fighting infections.

Once the infections are under control, they will send him to a liver transplant

center. Mark hasn't been able to go and see him, so this is also taking its

toll. He almost died those first few days.

Hopefully you all will " meet " him soon. Until then, you're stuck with me. LOL

:-) !!!

Bus is here...bye.

Jody

BTW, today is his best day ever since SD-Day August 11th!

Re: ATTN: Questions for all

> > >

> > > I am so sick & tired of everyone (well, almost) in my family

> > telling me

> > > that I shouldn't be as tired as I am all the time and that

Stills

> is

> > not the

> > > cause. IF you are exhausted, will you please reply about how

you

> used to

> > > feel as compared to now? How are you energy wise? How many

hours

> per

> > day do

> > > you realistically need BEFORE you feel well enough to crawl out

> of bed?

> > > I know the answers will vary, just as this disease does to

each

> > of us.

> > > But there was a discussion at my house tonight & my wife &

mother

> were

> > > telling me that I had become LAZY and that NO ONE needs to

sleep

> that

> > > long.....

> > > Please do not post anything derivative towards them, it's

not

> their

> > > fault they have no idea what they're talking about!!!

> > >

> > > Also for those of you who can't stay asleep at night due to

> > pain...add in

> > > your two cents if you would.

> > > Thank You, Kirk.

> > >

> > > --

> > > Everything in life sucks except things that should!

> > >

> > >

> > >

[Guest guest]

Thank you to all the dragon slayers out there, you have given me a renewed sense

of hope, I have only been with you all for 1 day but i feel like I have known a

lot of you forever, because i was only dx six months ago but as most of you know

it feels like a lifetime.

Unlike so may of you I am blessed to be in what I call a reission and am able

to maintain a fairly normal lifestyle with just a regular amount of pain in my

joints, and I probably push too hard and need to take it a little easier but i

am thankful for everyday that is productive and fruitful.

Please everyone keep up the fight and i will here for all as i know someday I

will probably be on the other end.

Lots of love...

Mike

Zovtic wrote:

Carole my dear, only other dragon " slayers " would understand this

stuff.

Like you, I was a go getter from the moment my feet hit floor in the

morning (pre-stills) to the moment my head hit the pillow at night.

Once in a blue moon there was a nap during the day - even after my

son was born.

I worked full time plus in the travel business, booking tours to

Bermuda for groups, going to other agencies in other states (tri-

state area up North), did travel seminars and shows, was a dog

obedience trainer (family business since I was little), kept a

decently clean house and still found time to volunteer for things,

etc, hardly ever took drugs, not even an asprin if I could help it.

You get the idea.

Now, I work so part time it's disgusting, I take drugs on a daily

basis, my energy level is next to nothing, my house is by no means as

clean as I'd like, I find talking on the phone exhausting and sleep

is no longer a comfort to me. There's more of course but why go into

it?

The long and the short, I've discovered half the battle is my

attitude; i.e. it's all how you look at things. It took a long time

to figure that one out, believe it or not. Now if I'm depressed (and

I think we all go through that) I let it ride for a little while and

then find a way to turn it around by doing something simple and

successful. Walking the dogs if the energy is with me helps, doing

one of my craft projects if my fingers are working that day or simply

playing a few rounds of solitair on the computer (go ahead,

laugh)... It's all how you look at things.

Now a days, I'm on drugs, prednisone, hydrocodone and ibuprofen 800

when I need it of course. So my house isn't as clean as I'd like -

so what! My son is cared for, there are dishes to eat off of,

everyone has clothes to wear, the dogs are taken care of and

bathrooms are clean...LIFE IS GOOD!

I had one day after I was dx and was on the phone with my mother. I

was crying, of course, Rubin was 2 years old and quite rambunctious

and I just couldn't continue cleaning the kitchen. My mother

said, " Darling, when you die they'll write on your tombstone, 'Oh she

was so clean' " Mother's always have a way of putting things in

perspective. My mother's other favorite saying? " F**k 'em all! "

Take care and be well.

Ellen

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hi mike,

Welcome to our group - I'm a bit late in introducing myself, but wanted to

join in and let you know that we are all always here for you.

You are right that you probably need to make sure that you don't push

yourself too hard. Life can be hard enough as it is if you are healthy

without Stills, so don't make it harder on yourself. We will hope that you

will stay in remission and not have to be on the other end of the stick. But

regardless, we are always here and you should always feel free to join in on

our discussions - we actually have lots of fun.

(from TN)

-- Re: Re: ATTN: Questions for all

Thank you to all the dragon slayers out there, you have given me a renewed

sense of hope, I have only been with you all for 1 day but i feel like I

have known a lot of you forever, because i was only dx six months ago but as

most of you know it feels like a lifetime.

Unlike so may of you I am blessed to be in what I call a reission and am

able to maintain a fairly normal lifestyle with just a regular amount of

pain in my joints, and I probably push too hard and need to take it a little

easier but i am thankful for everyday that is productive and fruitful.

Please everyone keep up the fight and i will here for all as i know someday

I will probably be on the other end.

Lots of love...

Mike

Zovtic wrote:

Carole my dear, only other dragon " slayers " would understand this

stuff.

Like you, I was a go getter from the moment my feet hit floor in the

morning (pre-stills) to the moment my head hit the pillow at night.

Once in a blue moon there was a nap during the day - even after my

son was born.

I worked full time plus in the travel business, booking tours to

Bermuda for groups, going to other agencies in other states (tri-

state area up North), did travel seminars and shows, was a dog

obedience trainer (family business since I was little), kept a

decently clean house and still found time to volunteer for things,

etc, hardly ever took drugs, not even an asprin if I could help it.

You get the idea.

Now, I work so part time it's disgusting, I take drugs on a daily

basis, my energy level is next to nothing, my house is by no means as

clean as I'd like, I find talking on the phone exhausting and sleep

is no longer a comfort to me. There's more of course but why go into

it?

The long and the short, I've discovered half the battle is my

attitude; i.e. it's all how you look at things. It took a long time

to figure that one out, believe it or not. Now if I'm depressed (and

I think we all go through that) I let it ride for a little while and

then find a way to turn it around by doing something simple and

successful. Walking the dogs if the energy is with me helps, doing

one of my craft projects if my fingers are working that day or simply

playing a few rounds of solitair on the computer (go ahead,

laugh)... It's all how you look at things.

Now a days, I'm on drugs, prednisone, hydrocodone and ibuprofen 800

when I need it of course. So my house isn't as clean as I'd like -

so what! My son is cared for, there are dishes to eat off of,

everyone has clothes to wear, the dogs are taken care of and

bathrooms are clean...LIFE IS GOOD!

I had one day after I was dx and was on the phone with my mother. I

was crying, of course, Rubin was 2 years old and quite rambunctious

and I just couldn't continue cleaning the kitchen. My mother

said, " Darling, when you die they'll write on your tombstone, 'Oh she

was so clean' " Mother's always have a way of putting things in

perspective. My mother's other favorite saying? " F**k 'em all! "

Take care and be well.

Ellen

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

thanx Alison,

If there is one thing i am not it is shy, i look forward to being part of

these discussions.

allison laptop wrote:

Hi mike,

Welcome to our group - I'm a bit late in introducing myself, but wanted to

join in and let you know that we are all always here for you.

You are right that you probably need to make sure that you don't push

yourself too hard. Life can be hard enough as it is if you are healthy

without Stills, so don't make it harder on yourself. We will hope that you

will stay in remission and not have to be on the other end of the stick. But

regardless, we are always here and you should always feel free to join in on

our discussions - we actually have lots of fun.

(from TN)

-- Re: Re: ATTN: Questions for all

Thank you to all the dragon slayers out there, you have given me a renewed

sense of hope, I have only been with you all for 1 day but i feel like I

have known a lot of you forever, because i was only dx six months ago but as

most of you know it feels like a lifetime.

Unlike so may of you I am blessed to be in what I call a reission and am

able to maintain a fairly normal lifestyle with just a regular amount of

pain in my joints, and I probably push too hard and need to take it a little

easier but i am thankful for everyday that is productive and fruitful.

Please everyone keep up the fight and i will here for all as i know someday

I will probably be on the other end.

Lots of love...

Mike

Zovtic wrote:

Carole my dear, only other dragon " slayers " would understand this

stuff.

Like you, I was a go getter from the moment my feet hit floor in the

morning (pre-stills) to the moment my head hit the pillow at night.

Once in a blue moon there was a nap during the day - even after my

son was born.

I worked full time plus in the travel business, booking tours to

Bermuda for groups, going to other agencies in other states (tri-

state area up North), did travel seminars and shows, was a dog

obedience trainer (family business since I was little), kept a

decently clean house and still found time to volunteer for things,

etc, hardly ever took drugs, not even an asprin if I could help it.

You get the idea.

Now, I work so part time it's disgusting, I take drugs on a daily

basis, my energy level is next to nothing, my house is by no means as

clean as I'd like, I find talking on the phone exhausting and sleep

is no longer a comfort to me. There's more of course but why go into

it?

The long and the short, I've discovered half the battle is my

attitude; i.e. it's all how you look at things. It took a long time

to figure that one out, believe it or not. Now if I'm depressed (and

I think we all go through that) I let it ride for a little while and

then find a way to turn it around by doing something simple and

successful. Walking the dogs if the energy is with me helps, doing

one of my craft projects if my fingers are working that day or simply

playing a few rounds of solitair on the computer (go ahead,

laugh)... It's all how you look at things.

Now a days, I'm on drugs, prednisone, hydrocodone and ibuprofen 800

when I need it of course. So my house isn't as clean as I'd like -

so what! My son is cared for, there are dishes to eat off of,

everyone has clothes to wear, the dogs are taken care of and

bathrooms are clean...LIFE IS GOOD!

I had one day after I was dx and was on the phone with my mother. I

was crying, of course, Rubin was 2 years old and quite rambunctious

and I just couldn't continue cleaning the kitchen. My mother

said, " Darling, when you die they'll write on your tombstone, 'Oh she

was so clean' " Mother's always have a way of putting things in

perspective. My mother's other favorite saying? " F**k 'em all! "

Take care and be well.

Ellen

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.