Re: ATTN: Questions for all

[Guest guest]

Kirk;

well for me I was a go getter working full time elk , deer hunting and duck and

upland bird hunting and fishing every chance i got with a bit of boating and

such thrown in for fun . I was sleeping in if i slept for 5 to 6 hours.

now i fish a few times a year no longer hunt any thing because i do not have

the endurance or strength to. I sleep 9 to 12 hours a day . normally up late at

night most of the time . I was all about lets go lets do now its do we have to ?

my big outing is now grocery shopping one time a week and if i have a doc

appointment that same week it is a lot now if mom or my sis need me i do push to

help them same with the kids . I will say i pay for it later and for almost

every day I push i need to at rest to get back to stills normal. I hate not

being able to do things because i am to tied or just worn out or hurting and man

after my MTX the next two days just well suck

hugs all

the redneck

Marty

Calling an illegal alien an " undocumented immigrant " is like calling a drug

dealer an " unlicensed pharmacist. "

" Those who hammer their guns into plows will plow for those who do not. "

~ Jefferson

Stills ; An illness I know to well!

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

To donate http://www.stillsdisease.org/donations

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Dear Kirk,

Energy levels will vary, not only by individuals, but your OWN levels

will fluctuate, depending on how active the Stills becomes - The more active

the dragon, the less active we are. Kinda the bottom line.

I no longer work - because energy level is so low - not to mention the

ratcheting up of pain involved with activity. Sure, I can get up at 5:30 to

see my husband off to work - but I'll be in bed before he returns home at 3:30.

If I stay in bed when he leaves, I MAY still be up when he returns home, but

no guarantee. He eats a LOT of sandwiches.

When I DID work, I installed scientific instruments on board

ships...world-wide. I would have to go on " sea trials " for weeks at a time. The

last

trip I went on (before throwing in the towel) was to the Philippines - three

week sea trial. There was only one other woman on board - for privacy, we

commandeered the ships's clinic - very appropriate! I stayed in bed & slept 24

hours a day. Staggered up occasionally to check on the instrument, which, thank

the Dear Lord, worked flawlessly.

But even before then, everyone knew, family & boss, that I would be in

bed for a week after I returned from a trip.

I have been extremely fortunate. My husband " gets it. " My children have

grown up around it. My boss, probably saw the writing on the wall sooner

than I. (He is very brilliant & compassionate.) He bought short AND long term

illness insurance for his small (25 employees) company. So, because of him,

although the disease wrecks my body, I am not in financial straits.

How to get through to YOUR family? It is MUCH harder, I think to have

this disease as a man - simply because men are supposed to be " invincible. " If

your wife & Mom admit to themselves that you ARE sick, VERY sick, then it is

extremely frightening for them. (Yeah, I know, having it scares the piss out

of me too sometimes!)

But YOU are their rock, their strength, their anchor to their world as

they know it. If your strength wanes, if you stumble, they are rocked off

their axis.

So how to get through to them? IF your Rheumatologist understands this

disease, I would suggest taking them with you to your next appointment. Have

them go with you into the examining room. Bring up any issues that you are

experiencing. Let THEM ask questions.

I think education is the key.... Have them sign up for this web-site so

that they can understand the scope of the disease and also see how others,

Stilligans and their families, cope.

Have them read the " Spoon Theory. "

I hope this helps...

Kindest Regards,

Pat

Austin, TX

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Kirk, my dear, you sound almost desperate. I understand though, I

face too often myself with my husband and his mother. My son, thank

goodness, is far more understanding.

I wake up during the night in such horrific pain that I'm often

crying when I wake. I can't scream, though I'd like to, because I

don't want to wake anyone up so I suppose that's why I cry instead.

This will happen at least two times on a good night. There are those

when sleep doesn't happen at all because of pain, too many meds,

actual physical excrusiating exhaustion, etc.

I also have those days when I can't get enough sleep. I'm a walking,

talking zombie and my energy level is incredibly low. On one hand I

can fake it for a little while and pretend (it makes eveyone else

happy) that I'm full of life, of course there's the other side of

that, the crash. The one where there's nothing left inside my body

and there's no other choice but to sleep.

We pick and choose our battles, Kirk. You're right, by the way, it's

not their fault and I'd never wish this on anyone but once in a

while, just for a few hours, everyone should experience this kind of

anguish. Perhaps then the perspective would be a bit kinder.

Take care and be well.

Ellen

[Guest guest]

Kirk, you know it's hard for me to realize how tired I get and to

explain it is even harder. I work for a local Ace Hardware, I used to

help manage the store do laps around the place, and lifting was no

problem.

Now I do office work for them, there are days just opening a couple

boxes wears me out , I go back to my desk and rest.

Over the weekend my father in law, brother and my father all helped

put laminate flooring in our livingroom.I was the gopher and it wore

me out bad enough to have to stay home today.

>

> 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]

Hey Kirk,

Energ? What energy? I am relatively well and I have no energy.

Nowadays I don't necessarily need to sleep a lot (boy in the old days

I did) but I do have to have a lot of downtime, sitting on the couch

in front of the tube, etc. Used to, I had something to do every night

after work, partied on the weekends. Now I am home almost every

night, shy away from doing anything after work, and maybe go to a

movie on the weekends. Very different.

Houston

[Guest guest]

What a can of worms... I was up for hours Last night.. The freakin' blankets

are even an issue... Who even thought that I wouldn't be able to pull up my

own blankets when I was cold or that the weight of a down comforter or the

sheets themselves would drive me nuts because they kill my toes one night

and my knees the next. It's horrible.

Before that, the Nerve pain in my eye was so bad, that I was seeing triple

out of my left eye and my head was going to explode, but if I went to the ER

for help, they wouldn't understand. So I wrap a pillow around my head a

moan. It's nuts.

Then Even if I happen to sleep all night, I'm tired and fatigued. If I get

a good two to three hours out of bed a day, that's a really, really good day

And if I happen to do that, by the end of the afternoon, every bone hurts

so deep that it throbs - just throbs - I never knew I could ache so deep in

my bones.

I want to do stuff, but I know what happens if I try to do more, I feel like

every limb is going to fall off, every joint is going to swell up and every

gland is going to get swollen. It isn't worth it to me to do more than an

hour to two a day. Even that causes my body to rebel big time. It's such a

hard balance.

I sure hope this helps you figure out how to explain that it helps to others

because it does. It's so real to me that even when we go on trips, that I

have the same routine on vacation, regardless of the place. We go to condos

I stay inside in the afternoon, in bed. In bed at night. Everyone else

cooks, etc. I can't. It's what my life has become. I can't do the tours,

etc. It makes me so sick so fast it isn't even funny.

I can be writing an email one minute and fall asleep the next - for a half

an hour, with no warning - just because of how fatigued I am... Athetic,

just pathetic... Oh well

The pain - that is what is the worse though - I hate the pain more than

anything - but at least its getting managed now - must of the time that is..

allison

-- 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]

Well, Kirk, honestly, I feel like I am in my eighties and I am only 39. That is

from the pain AND fatigue. I think a lot of the problem is not just the disease

itself, but the meds, too. Add into the mix the tiredness that comes into play

just from plain hurting all the time. It takes a toll.

My husband has never considered me lazy (at least not out loud), but he has

told me before that it would be nice sometimes if he came home and I wasn't

lying on the couch. I just told him that I thought that'd be nice, too, but it

doesn't always happen. My ex-husband used to call me lazy and a hypochondriac.

Part of the reason he is now my " ex " , lol...

My days are full of fatigue. I do have a bit more energy in the morning, but

by 11 am, I am ready for a nap. I swear, I can FEEL it coming over me, almost

as if there's a certain time of day when my body cycles into this mode.

Occasionally, I wll get a spurt of energy in the evening. But, mostly, I am

just tired all the time.

Hope that helps. It's hard for others to understand. Sometimes, my family

will say something like, " What's wrong? " I usually have patience with them, but

sometimes I just look at them and say, " Duh! "

Gail

Kirk Bonanny wrote:

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]

Hey Kirk,

I don't post much, but I'll tell you since coming down with this my

energy level has gone way down. Before Still's I was borderline ADHD

with the emphasis on the HD. I worked between 60 and 70 hours a week,

between two jobs, walked about 4 miles a day when I could fit in the

time to do it. Went out with friends to eat, shop, party at least 2 to

3 nights a week and could never be found at home. My mom sometimes

wondered if I actually still lived at home, because they never saw me.

Since being diagnosed it takes everything out of me to go into either

job and I am now down to 40 hours or less a week. When I come home I

sit and stare at the walls for awhile before starting to do anything

that needs done. Tasks like cleaning a single room take hours and I am

so drained afterwards I spend the rest of the time laying around. I

have little to no focus, but still can't sleep. I am lucky to fall

asleep by midnight and I wake up at least once during the night

because the painkillers have worn off. I then sleep until about 8 if I

am able to sleep in at all. It usually takes a good 30 to 40 minutes

to force myself out of bed and another half hour to take what used to

be a 10 minute or less routine.

In all the worst part for me is the inability to focus I used to be

able to focus on and keep track of 6 things at a time and now it is

hard to do 1 thing at a time. My family so far has been supportive,

but I don't know how much longer I can keep forcing my moods on them

(prednisone mood swings).

Jennie

>

> 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]

> Hy jennei,

>

>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 was like you, used to work 65 to 70 Hrs a week an now i can even

get up from bed. It takes me two to three weeks to figure out how I'm

going or when to mow my lawn...( have a lawn tractor an <Stills> get

me exhausted )

>

> 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

> >

> > 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]

> > >

> > > 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]

Pre-stills Carole: I was definitely an A-personality. I worked about 50

hours per week, went to graduate school part time, active in several

organizations and my synagogue. I exercised regularly - walked 10 miles per day,

danced

until the bars closed (loved to dance), and had a very active social life with

friends. When I met my hubby, I told him that I was really really interested

but I was kind of busy and couldn't fit in a date for 10 days! I slept about

4 - 5 hours per day except slept in on weekends about once per month and

felt great. Oh, and I golfed on a weekly league during the summer.

After-stills Carole: I don't sleep at night much but that's only because

sleep is so hard for me - too much pain and I don't like how groggy I feel when

I take stuff. I do take naps about 5 days a week which don't seem to help at

all. I virtually get zero exercise these days, even shopping totally

exhausts me. I used to do tons of comparison shopping, but I don't have the

energy

to do so. I sometimes think a wheelchair would be good for shopping but my ego

won't let me do that. Fortunately, the grocery store I go to the most is

very small so it's not too bad but my monthly trips to the warehouse store

exhausts me totally and I cannot do the checkout lane - I have to go to the food

court to rest while Al does that part. I used to have lots of friends, but

sadly that seems like too much work these days, don't have the energy to

maintain

friendships, not even the ones online generally. When family came to visit

last year, I could only spend about 3 hours per day with them and I had not

seen some of them for 10 years. I used to read constantly and can't concentrate

on books at all anymore.

Lazy....no, battle fatigue...definitely. We fight this dragon every moment

of every day in any number of ways, whether we're having a good or bad

day...and we get NO recess, leave,vacation, or respite from it. I feel so

totally

exhausted, so completely drained, utterly void of the energy or ambition I had

pre-stills.

The best thing I ever read about this is the spoon theory - I recommend it

to just about everyone I write to on this loop but it has helped so much in

explaining the " lazy " outward appearances of my actions and abilities.

Kirk, good luck in your search for the right words to explain our lives. I

pray that those who question our motives or abilities never feel what we go

thru for even one single moment. As Tiny Tim would say, " G-d bless us

everyone! "

Carole from Hollywood FL

In a message dated 1/8/2008 10:40:41 A.M. Eastern Standard Time,

allison@... writes:

From: Kirk Bonanny

Date: 1/8/2008 3:19:04 AM

To: _Stillsdisease@StillsdiseasSti_ (mailto:Stillsdisease )

Subject: 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.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi Kirk,

When I am having a flare, I have virtually no energy. I am lucky if I feel

like combing my hair and brushing my teeth in the same day. Even when I am

feeling pretty well, my energy level is greatly decreased. I feel okay when I

begin

something, but I get very tired very quickly. I can't sleep at night either.

Leaves me exhausted during the day. It kinda feels like my body is struggling

so hard to deal with this disease, it just doesn't have anything left for

normal activities. Hope your family realizes how much this disease just beats

you

down.

</HTML>

[Guest guest]

HOW MANY TIMES DO U TAKE THE METHOTREXATE ? HE ONLY EAKES IT ONCE A WEEK

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hello Kirk,

Sorry to hear about your situation. My name is Mark and I was reading through

some of the emails my wife (Jody) has received and thought I would introduce

myself by responding to your email. As most of you probably know from my wife's

emails I came down with Stills in Aug 2007 and have not been back to work yet.

After a month of being in the hospital I came home on 60mg of Prednisone a

day... so I am sure I do not need to tell you that 4 hours of sleep was more

than enough. Once they began lowering my Prednisone and I began taking

Methotrexate I was exhausted all the time especially the couple of days

following taking the Methotrexate and especially any time I was flaring. I am

sure Jody would agree that I was sleeping anywhere from 12-18hrs a day. One

specific flare that stands out was in November. I watched the Mich-Ohio State

football game, in between naps, and went to bed around 3pm Saturday and got up

around 9am Sunday. For me it varys but I

understand what you are going through. IT SUCKS!!! I used to be the person that

could stay up for days without sleep but now I need at least 10hrs or I am

exhausted. For me the fatigue has seemed to have gotten better. The last week I

have only taken a few naps. I think that has to do with the fact that I was not

doing so well over Christmas so my RD upped my Prednisone from 12 1/2mg to 30mg

on New Years Eve. I have been decreasing by 2 1/2mg every third day so I am down

to 22 1/2mg but I still seem to need the 10hrs. This of course does not include

the couple of days following the Methotrexate which just seems to wipe me out

completely and gives me headaches that come and go. The days following the

Methotrexate I just try and get as much sleep as possible all day long.

Thats about all the help I can give you. I do not have the problems with the

pain while I sleep so I feel fortunate there, although I am on 40mg of extended

release Oxy twice a day so I take one before bedtime. I also have 5mg tabs of

fast-acting Oxy that I can take up to 20mg every 4 hours as needed. I try not to

take these because they seem to work too well and I will over-do it and end up

in worse condition. I hope this helps.

Mark

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]

Hello Kirk and family.

My experience although different from yours I'm sure is once I do arise out of

bed (usually after 12 in the afternoon) I am up long enough to take my pills and

then feel like I need to go right back to bed. Whether I just lay on the sofa

all day or actually get back in the bed I usually have felt like I just ran a

marathon. It is hard for me to believe that just getting up long enough to take

meds can put me down as quick as I got up.

As for pain at night, I have lots and find it hard to sleep. I am the type of

person that loves to sleep on my side in the fetal position and just curl up

tucking the blankets under me. Now I have so much pain in my upper arms that

everytime I roll over I literally scream in pain. On the days I don't feel like

I have to be in bed I still have the pain, so I never fully get to enjoy a day.

For me I have just passed the 2 year anniversary of my dx, and have yet to see a

remission. I hope this helps.

Take care and I hope the headache is better,

Sherry Toledo, OH

-------------- Original message from " Kirk Bonanny " :

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

NO ONE needs to sleep that

long.....

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]

I take MTX once a week... but that is enough!

Re: ATTN: Questions for all

HOW MANY TIMES DO U TAKE THE METHOTREXATE ? HE ONLY EAKES IT ONCE A WEEK

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

[Guest guest]

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

[Guest guest]

Hi Kirk

My fatigue is at its worst it has been and has been like it since October.

Absolutely exhausted all day and everything is such a big issue for example

if I leave my glasses in another room and then realize I need them I am near

to tears that the effort to retrace my steps to get them is so great, I have

to sit down and then go back for them. I am in a flare at the moment but I

just can't believe I will ever get back to at least the time when I did have

a little energy. I literally get through each day no quality of life

whatsoever at the moment. Ah well the only way must be up.

Hope your headaches have improved.

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kirk Bonanny

Sent: 08 January 2008 08:22

To: Stillsdisease

Subject: 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]

Mark and Kirk,

I have always taken something for SD but for many years, the worst symptom I

had was the fatigue. So bad that some days, I couldn't get out of bed to fix

something to eat. Or I would get in the shower and have to sit down immediatly

on the side of the tub. My house is rarely clean. Vacuuming wears me out!

Fatigue and depression has been awful for me.

I seem to have a handle on things right now though!

YIPPEE!!

Keep on....

KEEPIN' ON.

in Houston

Jody Klein wrote:

Hello Kirk,

Sorry to hear about your situation. My name is Mark and I was reading through

some of the emails my wife (Jody) has received and thought I would introduce

myself by responding to your email. As most of you probably know from my wife's

emails I came down with Stills in Aug 2007 and have not been back to work yet.

After a month of being in the hospital I came home on 60mg of Prednisone a

day... so I am sure I do not need to tell you that 4 hours of sleep was more

than enough. Once they began lowering my Prednisone and I began taking

Methotrexate I was exhausted all the time especially the couple of days

following taking the Methotrexate and especially any time I was flaring. I am

sure Jody would agree that I was sleeping anywhere from 12-18hrs a day. One

specific flare that stands out was in November. I watched the Mich-Ohio State

football game, in between naps, and went to bed around 3pm Saturday and got up

around 9am Sunday. For me it varys but I

understand what you are going through. IT SUCKS!!! I used to be the person that

could stay up for days without sleep but now I need at least 10hrs or I am

exhausted. For me the fatigue has seemed to have gotten better. The last week I

have only taken a few naps. I think that has to do with the fact that I was not

doing so well over Christmas so my RD upped my Prednisone from 12 1/2mg to 30mg

on New Years Eve. I have been decreasing by 2 1/2mg every third day so I am down

to 22 1/2mg but I still seem to need the 10hrs. This of course does not include

the couple of days following the Methotrexate which just seems to wipe me out

completely and gives me headaches that come and go. The days following the

Methotrexate I just try and get as much sleep as possible all day long.

Thats about all the help I can give you. I do not have the problems with the

pain while I sleep so I feel fortunate there, although I am on 40mg of extended

release Oxy twice a day so I take one before bedtime. I also have 5mg tabs of

fast-acting Oxy that I can take up to 20mg every 4 hours as needed. I try not to

take these because they seem to work too well and I will over-do it and end up

in worse condition. I hope this helps.

Mark

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]

Kirk,

  I have been ''resting'' for the longest time. Before I was 'diagnosed' with

Stills, I remember telling my sister and a co-worker that I was just not feeling

'right.'

I was sooooooo tired all the time and no matter how much sleep I got, I was

still

tired. I was very worried because there is A LOT of cancer in my immediate

family and they all said how tired they were too. I remember telling my husband

to go on a bike ride and I will stay home to 'do things'. I would lay down

practically

till he got home 3-4 hours later. I would get up before he got home because I

felt bad

that I didn't feel good enough to get out and do things too.  All I wanted to

do was

sleep or at least lay down. I am still (I hate that word) tired a lot but at

least I  know 

why and can deal with it better. I do get headaches also but not as bad as yours

are, but

each case is different too. Today, my knee joints were hurting soooo bad I

couldn't walk

far, so I took 2 tylenol #3's and it eased it up a little. You have to rest I

have read, and also

 try to eliminate as much stress as possible in your life (try telling that to

the e.r. room hospital

where I work ''sorry guys, you will have to take that gun shot victim to another

hospital...Diane here

has to meditate for the next 30 minutes and practice her yoga''..I don't think

that will go over big here. lol

You know how you feel and you are the only one to take care of yourself...

Diane  42

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]

,

  I was just telling someone about the blankets the other day...I said that

the comforter was

soooo heavy I could not lift it off of my legs to get out of bed! My husband

would wake up and 

pull them off of me and help me up just to go to the bathroom in the middle of

the night...so I know that feeling you have now!  My hands and legs just don't

work right anymore...

I have a real hard time trying to get up steps...what I used to run up and down

so quickly is now reduced to crawling up the stairs     or I just don't go up

anymore...

I also fall asleep at the computer that I bring into bed after Chuck goes to

 work....yes, it is a laptop   lol

It is now 2:09a.m....where are the rest of the 1-4a.m. club members????

Diane   42

What a can of worms... I was up for hours Last night.. The freakin' blankets

are even an issue... Who even thought that I wouldn't be able to pull up my

own blankets when I was cold or that the weight of a down comforter or the

sheets themselves would drive me nuts because they kill my toes one night

and my knees the next. It's horrible.

Before that, the Nerve pain in my eye was so bad, that I was seeing triple

out of my left eye and my head was going to explode, but if I went to the ER

for help, they wouldn't understand. So I wrap a pillow around my head a

moan. It's nuts.

Then Even if I happen to sleep all night, I'm tired and fatigued. If I get

a good two to three hours out of bed a day, that's a really, really good day

And if I happen to do that, by the end of the afternoon, every bone hurts

so deep that it throbs - just throbs - I never knew I could ache so deep in

my bones.

I want to do stuff, but I know what happens if I try to do more, I feel like

every limb is going to fall off, every joint is going to swell up and every

gland is going to get swollen. It isn't worth it to me to do more than an

hour to two a day. Even that causes my body to rebel big time. It's such a

hard balance.

I sure hope this helps you figure out how to explain that it helps to others

because it does. It's so real to me that even when we go on trips, that I

have the same routine on vacation, regardless of the place. We go to condos

I stay inside in the afternoon, in bed. In bed at night. Everyone else

cooks, etc. I can't. It's what my life has become. I can't do the tours,

etc. It makes me so sick so fast it isn't even funny.

I can be writing an email one minute and fall asleep the next - for a half

an hour, with no warning - just because of how fatigued I am... Athetic,

just pathetic... Oh well

The pain - that is what is the worse though - I hate the pain more than

anything - but at least its getting managed now - must of the time that is..

allison

-- 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]

Hello

As your fatigue and depression have been so bad with ADS and you seem to

have a handle on things right now - any tips on how you did it? As I am

really suffering at the moment.

Hope you are having a good day today

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of in Houston

Sent: 10 January 2008 03:16

To: Stillsdisease

Subject: Re: ATTN: Questions for all

Mark and Kirk,

I have always taken something for SD but for many years, the worst symptom I

had was the fatigue. So bad that some days, I couldn't get out of bed to fix

something to eat. Or I would get in the shower and have to sit down

immediatly on the side of the tub. My house is rarely clean. Vacuuming wears

me out!

Fatigue and depression has been awful for me.

I seem to have a handle on things right now though!

YIPPEE!!

Keep on....

KEEPIN' ON.

in Houston

Jody Klein <jodyscoutyahoo (DOT) <mailto:jodyscout%40yahoo.com> com> wrote:

Hello Kirk,

Sorry to hear about your situation. My name is Mark and I was reading

through some of the emails my wife (Jody) has received and thought I would

introduce myself by responding to your email. As most of you probably know

from my wife's emails I came down with Stills in Aug 2007 and have not been

back to work yet. After a month of being in the hospital I came home on 60mg

of Prednisone a day... so I am sure I do not need to tell you that 4 hours

of sleep was more than enough. Once they began lowering my Prednisone and I

began taking Methotrexate I was exhausted all the time especially the couple

of days following taking the Methotrexate and especially any time I was

flaring. I am sure Jody would agree that I was sleeping anywhere from

12-18hrs a day. One specific flare that stands out was in November. I

watched the Mich-Ohio State football game, in between naps, and went to bed

around 3pm Saturday and got up around 9am Sunday. For me it varys but I

understand what you are going through. IT SUCKS!!! I used to be the person

that could stay up for days without sleep but now I need at least 10hrs or I

am exhausted. For me the fatigue has seemed to have gotten better. The last

week I have only taken a few naps. I think that has to do with the fact that

I was not doing so well over Christmas so my RD upped my Prednisone from 12

1/2mg to 30mg on New Years Eve. I have been decreasing by 2 1/2mg every

third day so I am down to 22 1/2mg but I still seem to need the 10hrs. This

of course does not include the couple of days following the Methotrexate

which just seems to wipe me out completely and gives me headaches that come

and go. The days following the Methotrexate I just try and get as much sleep

as possible all day long.

Thats about all the help I can give you. I do not have the problems with the

pain while I sleep so I feel fortunate there, although I am on 40mg of

extended release Oxy twice a day so I take one before bedtime. I also have

5mg tabs of fast-acting Oxy that I can take up to 20mg every 4 hours as

needed. I try not to take these because they seem to work too well and I

will over-do it and end up in worse condition. I hope this helps.

Mark

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]

Kirk:

Even on large doses of Prednisone in the beginning (just a year ago),

I experienced severe fatigue. I attributed it to the disease itself,

then had more physical inability because the drugs caused loss of

muscle tone. I am 44 years old, slightly overweight and

non-athletic, but had always been able to work a full day, work in the

yard, cook a meal, do the laundry, look after the boys & play with

them (all at the same time) until stricken with Stills. The energy

has never come back. I force myself to work, and do okay with an

eight hour day, but do nothing but rest in the evening. I imagine

sometimes my 14 & 18 year old sons must wonder why I seem like a

permanent fixture at one end of the couch, but they have never said

anything about being lazy. One time in the past year, one of them

joked about mom not doing much, and I replied I would gladly give up

the disease at any moment----never said anything again. My husband

travels for work almost every week, so they do all the housework, 5

acres of lawn work, run errands, do the laundry and just do it without

complaint. I think they were afraid (and I was to for a few days)

a year ago before diagnosis that I was dying, so they are pretty

sensitive. Their dad and I taught them how to do things and help out

as a family team before I became ill. Thank God!!!! I only wish

the fatigue would go away, but I am afraid not, so we adjust. One of

our recent dilemmas is scheduling a vacation I can enjoy. We usually

do cabin in the woods and ATV riding or lying on the beach---both

things that I can't physically do anymore, or medications don't allow

sun exposure. I would just as well like the guys to do their own

vacation (they have done short trips without me), but my husband wants

one together. Any ideas? Venting seems to help!!!!!

Blessings to all<

IL

On Behalf Of Kirk Bonanny

> Sent: 08 January 2008 08:22

> 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?

[Guest guest]

Hi Joan.

I really don't know. For me, it is a roller coaster constantly. I have been on

medical leave since Sept because the depression & fatique had gotten so bad.

Around November, I finally had my blood work done, which showed I was severly

anemic and almost completely out of red blood cells. The iron and blood

transfusions help. First, obviously being anemic and getting what you need makes

you feel better. Second, I had to leave my house to get the transfusions, which

being around people helps. And I've had some new health issues develop recently

and keep having to get out of my house to have different test run, which is a

good thing for me. I always isolate myself when the depression hits. I have let

so many people down because of this darn illness, I feel if I just pull away, I

won't disappoint any one else. It seriously has been vicious. I too have lost

friends because of this illness. We haven't changed any of my depression meds

this time.

How I'm doing better now? maybe it's because I am getting my blood back to

where it should be. Maybe it's because I have been getting out of the house

more. Maybe my body chemistry is getting back to where it should be?

I'm still very tired. I woke up at 2:30 this afternoon. But I do have a

handle on the depression right now.

I hope this helps.

Keep on...

KEEPIN' ON.

Joan UK wrote:

Hello

As your fatigue and depression have been so bad with ADS and you seem to

have a handle on things right now - any tips on how you did it? As I am

really suffering at the moment.

Hope you are having a good day today

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of in Houston

Sent: 10 January 2008 03:16

To: Stillsdisease

Subject: Re: ATTN: Questions for all

Mark and Kirk,

I have always taken something for SD but for many years, the worst symptom I

had was the fatigue. So bad that some days, I couldn't get out of bed to fix

something to eat. Or I would get in the shower and have to sit down

immediatly on the side of the tub. My house is rarely clean. Vacuuming wears

me out!

Fatigue and depression has been awful for me.

I seem to have a handle on things right now though!

YIPPEE!!

Keep on....

KEEPIN' ON.

in Houston

Jody Klein <jodyscoutyahoo (DOT) <mailto:jodyscout%40yahoo.com> com> wrote:

Hello Kirk,

Sorry to hear about your situation. My name is Mark and I was reading

through some of the emails my wife (Jody) has received and thought I would

introduce myself by responding to your email. As most of you probably know

from my wife's emails I came down with Stills in Aug 2007 and have not been

back to work yet. After a month of being in the hospital I came home on 60mg

of Prednisone a day... so I am sure I do not need to tell you that 4 hours

of sleep was more than enough. Once they began lowering my Prednisone and I

began taking Methotrexate I was exhausted all the time especially the couple

of days following taking the Methotrexate and especially any time I was

flaring. I am sure Jody would agree that I was sleeping anywhere from

12-18hrs a day. One specific flare that stands out was in November. I

watched the Mich-Ohio State football game, in between naps, and went to bed

around 3pm Saturday and got up around 9am Sunday. For me it varys but I

understand what you are going through. IT SUCKS!!! I used to be the person

that could stay up for days without sleep but now I need at least 10hrs or I

am exhausted. For me the fatigue has seemed to have gotten better. The last

week I have only taken a few naps. I think that has to do with the fact that

I was not doing so well over Christmas so my RD upped my Prednisone from 12

1/2mg to 30mg on New Years Eve. I have been decreasing by 2 1/2mg every

third day so I am down to 22 1/2mg but I still seem to need the 10hrs. This

of course does not include the couple of days following the Methotrexate

which just seems to wipe me out completely and gives me headaches that come

and go. The days following the Methotrexate I just try and get as much sleep

as possible all day long.

Thats about all the help I can give you. I do not have the problems with the

pain while I sleep so I feel fortunate there, although I am on 40mg of

extended release Oxy twice a day so I take one before bedtime. I also have

5mg tabs of fast-acting Oxy that I can take up to 20mg every 4 hours as

needed. I try not to take these because they seem to work too well and I

will over-do it and end up in worse condition. I hope this helps.

Mark

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]

Kirk,

First off, don't blame your family. There is NO way they can know your

pain or fatigue levels and you can tell them WE all said so!!! It has

NOTHING to do with being lazy and you can tell them I said their ignorant to

what Still's is if they think otherwise.

I have only the fevers under control at this time. My pain is still

present and seemingly at full level. Norco no longer provides any

significant relief. I see a chronic pain management doctor on the 14th.

Fatigue is always a factor and concentrating at work takes major effort and

even sometimes that's not enough. It's a good thing I could do my job in

my sleep which isn't far from the truth.

My pain often prevents me from going to sleep at all. But when I do sleep

and I first wake up in the morning, I do not notice any significant pain

till I move. Walking to the bathroom my muscles and joints feel like they

are made of clay and it is very difficult to walk. Then I really start to

feel the pain. I do not know why I do not feel it at first. My wife

microwaves hot towels and puts them on my legs along with the electric

blanket that has been on all night. She also rubs my leg muscles. I take

two Norco and it takes between 20minutes and as much as 3 hours on really

bad days before I can start getting ready for work. I currently have to

wake up at 4AM to be at work between 7 and 8. If it wasn't for my wife I

don't think I could manage to even get up. Once I get going with the

pain meds I can function pretty well but the pain is ever present. Rarely,

my pain will wake me up but I can usually get it under control with pain

meds and the electric blanket turned up to the max.

Now with that said, we should ALL make a concerted effort to get up get

moving. It is a well documented fact that people with RA do much better if

they exercise than if they do not in the long term. I am not saying we need

to run marathons. Just walk if you can. If you cannot, try a pool. I

find my pain really diminishes after a swim but it take a major effort for

me to get there and get in to that cold 80 degree water. Afterwards I feel

much better for longer periods.

Oddly enough, I also find that eating really small meals seems to help.

Large meals seem to make the pain worse and diminish the effectiveness of

the pain killers.

Next time they tell you how you SHOULD feel or that you are LAZY, tell them

(politely) that you're sorry they are ignorant on the subject of Still's and

RA and need to go to their computer and do some research. If they still

feel they are right, encourage them to join the group and ask all of us.

They will get educated real fast but still won't fully understand it. The

only way they will ever fully understand it is if they become ill with

Still's or similar disease and of course we'd not wish that on our enemies.

Well, okay, maybe a few of them we would. ;-)

Cheers,

Darv

Darvin Atkeson

Personal Portfolio

http://www.liquidmoonlight.com

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!