RE: personal quiz, hope you respond

[Guest guest]

Dear Kate

I would definitely say " on your bike " to stills given the choice. The main

reason being it stops me becoming totally involved with family life. An

example , my daughter was taken into hospt. Which meant that the two

children had to be looked after and naturally " nanny " was the first option

but still no one understands that just because an emergency comes along I

can't say hang on a minute stills you can't play me up now my daughter's in

hospt. I couldn't bath them I had to get leah to climb onto the toilet and

sit on the side and put her fe

et in the sink to wash them. I am only going into detail because I wanted

so badly to take over as most nan's would do and felt guilty that I couldn't

do it properly.I don't mind so much if I have to cancel an outing with

friends but when I can't help my daughter and grandchildren it really goes

against the grain.

Also being so much older than you I haven't the time or energy to fight so

hard so if someone said they could take stills away I would give them a big

suitcase and say cheerio.

Not sure if this is the response you wanted but I will be interested to hear

what anyone else has to say.

Glad your life is sorting itself out and hope you are keeping well at the

moment.

Love Joan U.K.

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kate Vasquez

Sent: 21 August 2006 07:33

To: Stillsdisease

Subject: personal quiz, hope you respond

I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not. Yes, it is so hard most days, and there is so much pain, and

exhaustion and secondary problems, and dealing with family and friends, but

ultimately I think it has made me a better person, more appreciate of so

many things.

So, you, personally, I am challenging to think about that. If today you had

the choice to get rid of Stills, would you seriously do it? If you could

re-do your life without Stills would you and why or why not?

I would love any and all honest answers, not just to feed my curiosity, but

to hopefully get all of us to see the softer side of Stills

Take care. I love you all!

In His Strength,

, WA

www.freewebs.com/faithfights

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[Guest guest]

Well, , I guess it depends on how I look at it. There are times when it

doesn't seem so bad and others (like when they couldn't dx me) that I would have

rather died. Now that I know what I do, I'd have to say I'd still gladly show

the Dragon the door, lol...

The experience has made me a different person, more tolerant and

understanding, so that's good. But, I also used to be married to a man who

thought it was fun to knock me around every day and when I finally got out of

the situation, it took a couple years, but I matured and grew as a person for

having gone through it. But it doesn't mean that I'd have gone back through it

again. Just one of those things I call valleys that we have to travel

sometimes.

So, if I have to have Still's, then so be it. There are others much worse off

in this world and I can say that I have been able to help a few people along the

way who also have it because of my experience with it. I've said this a lot in

this group but I'll say it one more time... I will not let this disease rule my

life. I used to. And sometimes it's hard not to give in when the pain is going

on, but I have learned to cling to that. My nephew has Type 1 diabetes (he's a

fourth grader) and I refuse to call him a " diabetic " . That would label him as

the disease, not a person with the disease. Same with us.

Yeah, I'd give the dragon the boot, in a heartbeat... but I don't dwell on

" why " I have it because that would give it the power it wants over me.

Have a good day everyone...

Gail

Kate Vasquez wrote:

I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not. Yes, it is so hard most days, and there is so much pain, and

exhaustion and secondary problems, and dealing with family and friends, but

ultimately I think it has made me a better person, more appreciate of so

many things.

So, you, personally, I am challenging to think about that. If today you had

the choice to get rid of Stills, would you seriously do it? If you could

re-do your life without Stills would you and why or why not?

I would love any and all honest answers, not just to feed my curiosity, but

to hopefully get all of us to see the softer side of Stills

Take care. I love you all!

In His Strength,

, WA

www.freewebs.com/faithfights

__________________________________________________________

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donated to the International Still's Disease Foundation)

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[Guest guest]

,

I very truly wish I had never gotten Stills and if it left today, I

wouldn't look back on the last seven years fondly missing Stills,

I'd look back being ticked at the life and time i have lost.

I lost the best part of my 20s and so far all my early 30s. This is

the time where I should have met a husband and started a family.

THis is the time where I should have been able to get ahead in my

career and meet personal goals.

Instead I lost a great love, lost most of my friends and family, and

lost myself. I am a fat, shell of the person I used to be. Stills

hasn't made me more giving and loving, it has done the opposite to

me. I used to be an extremely giving person, someone who would do

anything for anyone. My career aspirations were also to be in a

field that helped others, particularly children - heck from a young

age I wanted to run an orphanage the right way. I have always been

understanding, empathetic, and accomodating towards those who are

ill and having this disease has not changed my attitude about those

who are ill one bit. I'm just one of them.

Now I do nothing for anyone because I am barely able to do it for

myself. I don't get to volunteer, I don't get to enjoy social

activities, I don't get to meet new people who will enrich my life

and me theirs and mostly I don't get the exposure I need to meet

someone who can become a partner in life. I won't be able to have

children and while adopting has always been something I have said I

would do even with natural children, the fact that the choice has

been taken away from me really makes me angry.

Stills has done nothing but given me grief and it hasn't made me

closer to anything - not a person, not a faith, nothing. I liked

who I used to be a lot, I can't stand the person I am now. I don't

think about it most days, heck, I can't remember most days because

my short term memory has gotten so bad, but the truth is, the person

I am merely exists. And why? Because of Stills.

I live my life by a no regrets rule. Re-do's can't happen so I

don't think about it and there's not one action i have ever taken

that I have lived to regret. But if there's on re-do I would take,

it would be for Stills not to have ever been a part of me. I had a

whole lot more to give to society than I am able to give now.

Houston

[Guest guest]

;

I would give it up in a heart beat. Yes it has also in ways made me a

better and more tolerant person and also has not. I would give it up for

many reasons. a life with my kids , a divorce were my stills and the

meds were not used to take my kids from me , to have back a job I loved

, to pull my family back together as this stills and how I am seen and

treated has torn most of us apart. I would love to have my hunting

fishing and rights to own guns again as the ex had them taken from me in

the divorce using my stills as a tool to get every thing from me.

I would keep it as because of it I have a wonderful woman and her kids

in my life now .I get to smell the flowers so many walk by and never

see. I have become in a few ways more sensitive. . I have a life to look

forward to be I am treated like a person not an employee by my other

half. I get to spend time with my grandbaby baby sitting like most would

not get at my age because of working. I have learned what is really

needed and necessary for life because of living on SSDI and its pay

(okay so it is not living but surviving). I would also keep it if it

meant keeping a child from getting this or some one that is not as

strong as I am as it can and dose destroy some people and with my self I

can still function for the most part and enjoy life most days .

This is some thing I think on a lot. Really if it came down to it I do

not know what I would do, so I leave it in my God's hands and let him do

with me as he see's fit. As with Most things left up to me, I seam to

mess up. So I take it one day at a time and hope for the best but live

with what I have to day I give thanks for each new sunrise I get to

enjoy and each sunset I was given to watch with a promise of a new day.

If the sun is setting on a bad day I 'm thankful that this day is done

and look forward to the next as it can not be as bad as the last or at

lest that is my pray and wish .

Hugs all

Marty

[Guest guest]

Eeek...my response sounded so negative. Really it's just the rock

bottom truth of it all and that is a negative for me. I haven't

stopped living my life, I just live a different life within my

abilities. I am who I am - not who I was or who I want to be - so

my life is what it is and I live it to the best of my current

ability. I'm very much a realist, so it's not a pessimistic slant,

it just is.

I agree with Gail, you can't let it take over your life, you just

have to live within your abilities.

Take for instance traveling. i love to travel and see the world,

especially the often not seen parts. And I have a way in which I

like to travel - and it's not the touristy, group tour, all planned

out fashion. But since being sick, I have to travel much less and

in a much more planned out way. so my compromise here is that I

still travel internationally, just every 1 1/2 years to 2 years

instead of once or twice a year because I know I'm going to be in a

flare when I get home. And I do have to plan out my trip, but I try

to plan to see off the beaten path places and if I get a chance to

get off itinerary and I feel it's not going to make me feel worse, I

do it.

Travel is one of those areas I refuse to relinquish control over to

Stills. I've had to give it my brain and memory - so I no longer

read for pleasure (horrible for someone who used to read a book a

night). But I try to keep control over what I can and just keep on

living as well as I can.

Houston

[Guest guest]

I would choose to make it go away in heartbeat! As a teenager it

confused me and changed who I am, not in a good way. Still's has left

me with too much baggage from doctor's who accused me of faking pain,

parents who did not understand my pain and friends who just didn't

get it. It affects my ability to deal with other people's pain and

illness. As an adult with the disease returning from remission

(maybe, as now the doctor's think this time it might " just " be RA) it

has made me angry, resentful and frustrated. It affects how I parent,

and who I am as a wife. My baby girl has never known her mommy

without pain. My six year old thinks he has arthritis when his knee

hurts. There just is not a silver lining in there. So would I live my

life without Still's, you bet I would. Today, that is just not a choice.

Be Well,

Sam

[Guest guest]

I have learned a lot from having Still's. I have always appreciated life and my

family and friends and all that I have in my life. The problem that I have is

that I always over commit myself and try to do way too much and make too many

people happy. I was always rushing around and doing too much. Still's has

taught me to SLOW down and pace myself and take better care of myself. It has

also taught me that I need to take care of myself first and then take care of

other people.

The thing that I miss the most because of the Still's is not being able to

work a great job like I used to. I really miss that and I am tired of living

like a pauper on disability. I had to use all of my 401K and retirement money

while I fought social security for 3 years to get disability. Now I live

disability check to disability check and it scares me to death as I feel that I

am one check away from being homeless. Before I got " sick " I had a dream job,

fantastic credit, 6 months of savings in my regular savings account (just in

case something happened) and my retirement money. I have a hard time getting

all of my medical bills covered because medicare covers only 80% and then I have

medi-cal which gives me a $700.00 per MONTH deduct able because I make $200.00

per month over their cut-off on disability. Medi-Cal expects me to live on

$500.00 per month. My rent alone is that and I am getting a half price deal

from my landlord! If my landlord decides to

sell my place, I don't know what I would do. So if I had the choice....I would

get rid of the Still's disease and go back to work!!! Or at least manage the

Still's Disease to where I could work full time and support myself again.

Kate Vasquez wrote:

I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not. Yes, it is so hard most days, and there is so much pain, and

exhaustion and secondary problems, and dealing with family and friends, but

ultimately I think it has made me a better person, more appreciate of so

many things.

So, you, personally, I am challenging to think about that. If today you had

the choice to get rid of Stills, would you seriously do it? If you could

re-do your life without Stills would you and why or why not?

I would love any and all honest answers, not just to feed my curiosity, but

to hopefully get all of us to see the softer side of Stills

Take care. I love you all!

In His Strength,

, WA

www.freewebs.com/faithfights

__________________________________________________________

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[Guest guest]

First I'll apologize in advance for this this being so long!

I had to think about this because there are allot worse things than Stills but

in all honesty I'd say goodbye in a split second, slam the door & never look

back. When I first got the diagnosis I wondered Why Me? Then I realized I don't

get to make that choice -why not me? Life isn't fair & thank goodness I still

wake up every day. I'm not ready for the alternative!!!!

It has been a tough road to go & it seems some days a lonely one. I rarely see

anyone outside of family. People I thought were friends don't call or come by

anymore. Before Stills I worked full-time & thought I had several " real " friends

at work, boy did I get a big surprise!!! A few people stepped forward in the

beginning to help out but that was short lived. I still have a few REAL friends

but long gone are my illusions that the others were in it for the long haul.

Funny how life throws those little curves in. I just think some people want to

bury their head in the sand & continue on with their perfect little life's

thinking nothing bad can ever happen to them. It's almost like they think

associating with a ill person sets them up to get a disease. I know from first

hand experiences no one can hide forever sooner or later " something " will happen

no matter who you are. I'm glad I found out who my friends are that is a plus!

I was working when I got this disease. The first time April 2004 I ended up

off work for 4 months after several Dr's & tests no one could figure out what

was wrong they finally removed my gallbladder & although I didn't feel great the

symptoms subsided a bit & I went back to work feeling so-so figuring that's how

my life would be. Then March of this year I took a huge turn for the worst lucky

me I even got a room at the hospital for a week. From that point forward it has

been hell off & on. Right now my Dr. is pushing for long term disability, my

drugs get changed on a monthly basis, all the affects of the disease wear me

down ---from night/day drenches to every joint in my body hurting some days

can't even get out of bed, my kids, family & sig. other suffer with me. I'm on

short term disability that ends Sept. 17th what happens if I don't get long

term, I'm only getting about 1/2 of my regular pay now just one of my meds. the

out of pocket expense is $380 to $422 a

month. I haven't even heard from my employer about long term disability but

know right now there is no way I can work- just more added stress.

Has this disease changed me? Yes & I do think it has helped me to see things

from a different perspective. I appreciate the " small things " more but it still

doesn't change the fact that my quality of life is not what I'd hoped for at

this age. My first grandson was born this year & I was to ill to go to FL to be

there for his birth. Going on a 5 day trip completely wiped me out for almost a

week.Crap walking 6 blocks wears me out. My once semi-clean house is now

cluttered most of the time & I don't care, my short-term memory seems to get

worse each day, I can't work, I'm exhausted, I hurt, the list is long &

incomplete- I can't remember it all anyway!

I could go on & on as to why I'd slam the door on Stills if given the

opportunity but what good does that do? I have Sills Disease I can lay down &

give in or stand up & try to fight granted some days are easier than others but

few & far between. When I look back to how sick I was I've made progress. As

much as I hate this disease I'm learning to cope regardless of the dragon

lingering behind me (as well as a teenage daughter) trying to send me to the

looney bin wearing a white jacket. (I will be laughing all the way to the padded

room!

Don't get wrong it isn't all bad! Some days are good & give me a glimmer of

hope for a better tomorrow, a light at the end of a very dark tunnel. I'm

thankful that I've found this place where there are others who understand. I've

learned so much about myself & my ability to cope inspite of the disease which

has made me a better person but I still want my life back with all I've learned

& no dragons knocking at my backside while I'm trying to limp away.

My hope is that one day there will be a cure or a wonderful new med. that

alleviates all the pains & aliments of Stills then we can all slam that door in

the dragons face, that is my dream!

Take Care,

Chris

Kate Vasquez wrote:

I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not. Yes, it is so hard most days, and there is so much pain, and

exhaustion and secondary problems, and dealing with family and friends, but

ultimately I think it has made me a better person, more appreciate of so

many things.

So, you, personally, I am challenging to think about that. If today you had

the choice to get rid of Stills, would you seriously do it? If you could

re-do your life without Stills would you and why or why not?

I would love any and all honest answers, not just to feed my curiosity, but

to hopefully get all of us to see the softer side of Stills

Take care. I love you all!

In His Strength,

, WA

www.freewebs.com/faithfights

__________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

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

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starting at 1¢/min.

[Guest guest]

Joan, I can only attempt to imagine what it is like to not be able to take

care of your kids, to be a mom, a wife, etc. You should not feel any guilt

for wanting to get rid of Stills because of your love for them, and I admire

that a lot. I did not ask this question to cause any teeter-tottery

feelings.I didn't write it to make anyone feel bad or good about their

decision...or anything like that. I love you all so much and only want the

very best for all of you... I am just a thinker and was hoping to uplift a

couple people. Take care.

And, I wouldn't say so much that I am able to fight, maybe not like you

think because I am 20. I haven't left the house but twice in a week and a

half. I don't fall asleep til 5:00 Am and thus can't function til 2:00 in

the afternoon. The CA heat is my kryptonite. But, all I know, is that I got

FIGHT tattood on my wrist, and when I am finally able to open my eyes, some

time in the middle of the day, I am on my side and I see it, and that makes

me get out of bed.

To me, that is the most any of us can fight a lot of the time, by getting

out of bed. That is the first step. And it is a huge one. You don't have to

get up and go for a walk or do all your chores or write all day... (i

usually spend 3 hours tops on a computer a day. I don't know how I will

every get the book done, but I will keep trying, for that day will come when

I am cane-bound, walker-bound, wheel-chair bound, bed-bound more than now,

and I will just hope if I have a family, I can care about them so much more

than myself or my pain and frustrations, like you) you just have to try and

not give up as often as possible. Every battle counts, even the little

ones...though the definition of little is subjective.

Take care everyone.

In His Strength,

, WA

www.freewebs.com/faithfights

Reply-To: Stillsdisease

To: <Stillsdisease >

Subject: RE: personal quiz, hope you respond

Date: Mon, 21 Aug 2006 12:33:55 +0100

Dear Kate

I would definitely say " on your bike " to stills given the choice. The main

reason being it stops me becoming totally involved with family life. An

example , my daughter was taken into hospt. Which meant that the two

children had to be looked after and naturally " nanny " was the first option

but still no one understands that just because an emergency comes along I

can't say hang on a minute stills you can't play me up now my daughter's in

hospt. I couldn't bath them I had to get leah to climb onto the toilet and

sit on the side and put her fe

et in the sink to wash them. I am only going into detail because I wanted

so badly to take over as most nan's would do and felt guilty that I couldn't

do it properly.I don't mind so much if I have to cancel an outing with

friends but when I can't help my daughter and grandchildren it really goes

against the grain.

Also being so much older than you I haven't the time or energy to fight so

hard so if someone said they could take stills away I would give them a big

suitcase and say cheerio.

Not sure if this is the response you wanted but I will be interested to hear

what anyone else has to say.

Glad your life is sorting itself out and hope you are keeping well at the

moment.

Love Joan U.K.

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Kate Vasquez

Sent: 21 August 2006 07:33

To: Stillsdisease

Subject: personal quiz, hope you respond

I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not. Yes, it is so hard most days, and there is so much pain, and

exhaustion and secondary problems, and dealing with family and friends, but

ultimately I think it has made me a better person, more appreciate of so

many things.

So, you, personally, I am challenging to think about that. If today you had

the choice to get rid of Stills, would you seriously do it? If you could

re-do your life without Stills would you and why or why not?

I would love any and all honest answers, not just to feed my curiosity, but

to hopefully get all of us to see the softer side of Stills

Take care. I love you all!

In His Strength,

, WA

www.freewebs.com/faithfights

__________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.

<http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/>

msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hey everyone....I was just cruising the emails and had to respond to this

one...

Would I say good bye to Stills if given the chance? Hell YES!!! and without

a single f#%**#@ regret! I look back to see a hyper-energetic guy who enjoyed

working 50+ hour weeks, lifting 3-4 nights per week, running, fishing every

single chance he had along with being a husband and father.

I look in the mirror now and see a dude that is 40-50 pounds over weight,

can not walk without a severe limp and a cane (that's a good day) who is

constantly exhausted yet still can not sleep more than an hour or so straight

(usually pain awakens him, but even without pain can't sleep well at all) all

while he watches his marriage deteriorate seemingly more as the days progress.

I used to take the odd aspirin or Nuprin for the occasional minor headache,

now I take some wicked narcotics that hardly dent the *%^ & $#! headaches I get

now. I also take more prescription medications than should ever be allowed as if

disease doesn't kill me, the drugs certainly will.

I used to have a nice fat wallet and along with my family was able to enjoy

some of the better things in life (I wasn't rich, but always had a few spare

bucks) and now I am always figuring how to stretch the budget to buy or do a

little something extra. I used my boat once this year as I haven't been able to

save enough to buy the part that said goodnight yet. I shouldn't complain, at

least I haven't had to sell the damn thing, so it isn't that bad......yet.

I haven't lost any friends over this, I guess I chose my friends well and

they are " true " , so I have no complaints on that front.

About the only positive out of the whole situation is that I now have a bit

more time to be with my kids, at least when I am not in the " resort " or slammed

into bed. I can't count that as a huge positive as I always made time for them

before I became sick.

Well, it does feel good to rant a bit after a particularly bad day, and I do

seem to enjoy it now and then.

Hope everyone is doing alright. Have a good one, Kirk

[Guest guest]

I'm trying to think about positives of having stills -----none! Not a one.

Lost so much since having it though. New emotions include bitterness,

cynicism, anger, fear, loss of faith, family and friends. Lost money, jobs,

hobbies, activities, and more. I've become a voyeur instead of actively living

the

life I had.

No, I would be perfectly happy never having this dragon as an unwanted

parasite in my life. In a heartbeat!

Carole from Hollywood FL

[Guest guest]

Carole,

That is the perfect way to explain how I feel. You always seem

to " get " me, lol.

Houston

>

> Lost so much since having it though. New emotions include

bitterness,

> cynicism, anger, fear, loss of faith, family and friends. Lost

money, jobs,

> hobbies, activities, and more. I've become a voyeur instead of

actively living the

> life I had.

>

[Guest guest]

Hi Kate,

This is an interesting question. A quick response without thought is " yes,

I choose to be disease free! " Nearly everyone would choose to be disease free

if given the choice. This disease has taken so much from me, but strangely, in

return, it has given me the joy of friends who would not be traded for the

world.

I live with a great deal of daily pain, requiring several doses of morphine

a day. Still, this disease has taught me much more than a college. I don't

believe I'd say goodbye to Stills Disease.

In Peace,

Barbara Gardner

Ventura, CA

>I have a serious question for the group. I was thinking, too much, the other

day, about whether or not, if given the choice, I would say goodbye to Still

Disease or not.<