understanding

[Guest guest]

To all that may be concerned,

My name is Patty and I am the wife of Larry Brown from western NC. He was

diagnosed 2 and 1/2 years ago with Stills. It has been very difficult being

the (for lack of a better term) Head of House for me. Larry always took care of

the out side and always was willing to help inside too. We always tried to work

together to keep the house up and both worked. Any way when Larry got sick

I had to take over most of the care of home and hearth. My kids helped a great

deal but they were kids, and now all flew from the nest. And continue to help

when they can. but for the most part I have had to deal with most every thing.

Ican tell you now that it is very hard to hear someone talk about how bad they

feel and yes it is on a daily basis. And yes it is difficult to understand how

someone who " looks healthy " can feel so bad all the time. I have worked in the

health field for 15+ years and I believe that that has helped me understand

Larry alot more then those who don't

work in health. Any way there are days I feel like throwing my hands up and

screeming IQUIT! This disease takes so much away from the person who has it.

Larry does good If he can make it through a work day. He comes home and

crashes. On his days off he sleeps. We dont go out because he doesnt have

enough spoones to carry him through. We do not go on vacations because he

cant do all the riding and walking that vacations require. We are only in our

mid 40's and now with no children, this should be our time to do what ever we

want (even running around naked) at home. But because of stills we dont have

that.So you see Stills takes alot from the person who has it, but it also takes

away from the entire family. but we have learned that we are best of friends

and can talk about anything. We do spend a lot of time together because he

works with me so I can keep an eye on him. As I have read many of your emails I

have noticed that most men(not all) do not

understand when it comes to an illness that you really cant see or fight. They

need to read as much as you can get them to about Stills and the complications

of the drugs that you have to take. the more informed , as you know, the

better to understand. but remember most men cant handle seeing the woman they

love sick. Most men want to fight and get rid of the problem, with Stills that

cannot happen. The more you fight the harder it fights back. So I say to the

husbands, and wives of people who have stills, Enjoy their good days, take real

good care of them on their bad days, embrace the blessing in-between . Believe

it or not there are many blessing to be found if you just take a long look. And

really pray for one another. God will meet you there.

I pray that God Will help you through this.

With Love and Respect,

Patty Brown

________________________________________________________________________________\

____

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[Guest guest]

Patty:

Beautifully written and incredibly true. Being this is not one of

those " popular " illness (thank G-d) few people but for us, really

know how it can effect our lives. I was speaking with my store

manager, telling him how wonderful my immediate supervisor has been

to me and I thought she should be recognized for it when he looked at

me and said, " but you don't look sick " . I've directed him to the

Stills web site that we know so well. After a while explaining what

I have just gets old and is obviously NOT sinking in.

I understand your wanting " to quit " . There are times, I'm pretty

sure everyone will agree to this, that I've had enough and cry

because I just want to be " normal " again. A day without limits,

without pains, without pills...but it's wishful thinking and it gets

you only frustration. I'm one of the lucky ones, I'm still

functional for the most part and I do have good days/weeks and I

enjoy them to the utmost. So much so, I forget, if only for a little

while, that there is this thing inside me.

So I trudge along, sometimes with glares of disbelief from my husband

and son when I ask them to reach something for me. I have no doubt

your husband doesn't take you for granted (most of the time) and he

appreciates all you do and will do for both of you.

Take care and be well.

Elle

>

> To all that may be concerned,

>

> My name is Patty and I am the wife of Larry Brown from western

NC. He was diagnosed 2 and 1/2 years ago with Stills. It has been

very difficult being the (for lack of a better term) Head of House

for me. Larry always took care of the out side and always was

willing to help inside too. We always tried to work together to

keep the house up and both worked. Any way when Larry got sick I

had to take over most of the care of home and hearth. My kids helped

a great deal but they were kids, and now all flew from the nest. And

continue to help when they can. but for the most part I have had to

deal with most every thing. Ican tell you now that it is very hard

to hear someone talk about how bad they feel and yes it is on a daily

basis. And yes it is difficult to understand how someone who " looks

healthy " can feel so bad all the time. I have worked in the health

field for 15+ years and I believe that that has helped me understand

Larry alot more then those who don't

> work in health. Any way there are days I feel like throwing my

hands up and screeming IQUIT! This disease takes so much away from

the person who has it. Larry does good If he can make it through a

work day. He comes home and crashes. On his days off he sleeps. We

dont go out because he doesnt have enough spoones to carry him

through. We do not go on vacations because he cant do all the

riding and walking that vacations require. We are only in our mid

40's and now with no children, this should be our time to do what

ever we want (even running around naked) at home. But because of

stills we dont have that.So you see Stills takes alot from the person

who has it, but it also takes away from the entire family. but we

have learned that we are best of friends and can talk about

anything. We do spend a lot of time together because he works with

me so I can keep an eye on him. As I have read many of your emails I

have noticed that most men(not all) do not

> understand when it comes to an illness that you really cant see or

fight. They need to read as much as you can get them to about Stills

and the complications of the drugs that you have to take. the more

informed , as you know, the better to understand. but remember

most men cant handle seeing the woman they love sick. Most men want

to fight and get rid of the problem, with Stills that cannot

happen. The more you fight the harder it fights back. So I say to

the husbands, and wives of people who have stills, Enjoy their good

days, take real good care of them on their bad days, embrace the

blessing in-between . Believe it or not there are many blessing to be

found if you just take a long look. And really pray for one

another. God will meet you there.

> I pray that God Will help you through this.

> With Love and Respect,

> Patty Brown

>

>

>

>

______________________________________________________________________

______________

> Yahoo! oneSearch: Finally, mobile search

> that gives answers, not web links.

> http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

>

>