RE: Help for Wife of Still's Sufferer

[Guest guest]

Hello ,

It is so good to have you with us. I hope and pray that we can help you and

your husband to come to terms with this dragon disease.

First off, we need for you to ask for the Still's Brochure. This will help

you as a spouse to understand more fully about Still's and how it not only

hits us physically but also emotionally and mentally in some ways.

To answer you first concern:

Are we capable of remaining happy inside when our body is under such attack?

I can only answer this on a personal level. I'm sure each one of us will

have a little different side to this story.

I was diagnosed when I was 12 and after a year of the diagnosing I was able

to achieve a 15 + yr remission. I am the same age as your husband. After the

births of my children, I began the spiral descent in the land of slaying the

dragon we call Still's. And not everyone has the same symptoms yet we know

and can understand the pain that each of us feels.

I have always been a happy person but I can truly say that when I began to

become sick once more, I lost that happiness for a time until a dear friend

came to me and told me a few things I needed to hear. It hasn't been easy.

I have been blessed with a very loving and caring spouse , who tries so hard

to understand. It's been hard on him I know. Before I became sick, we were

joined at the hip. We did everything together--even auto repair. Then BAM it

hit me.

I was so scared. I stopped talking to my best friend. I tried to shut him

out. I was afraid what this would do to " us " so I was short. I was moody. I

didn't mean to be but it was the defense part of my brain kicking in.

After my friend and I had our talk, I began to pray again (I do not mean to

offend. I respect other's and their beliefs. I know each one of us view the

higher power differently) and study my bible and attend our Christian

services. I prayed for the strength to live by moments rather than days. I

prayed that if I couldn't be the wife that I use to be to help us to come

together and learn how to adjust and build on a new foundation. 4 yrs ago

this began again, and 4 yrs ago, my husband and I began a new marriage.

In a lot of ways, it's better than it ever was. We decided together that GOD

was going to be one of the biggest forces in our lives to keep us together.

So far, it is truly helping.

I would suggest counseling for you and your husband separately then as you

both grow, together--if you both are open to this. It just may save your

relationship.

I commend you for taking steps to seek support yourself and understanding

about this disease, and it's effects on your husband. Not many spouses are

willing to do this.

When a person is faced with a chronic disease such as Still's, they go

through the grieving process just as a terminal patient does who is facing

death. It is called the Death Mask. It sounds like this is what your husband

is going through. We are do--and we revisit different stages of the mask.

Anger, denial--ignoring the illness and our loved ones seem to be strong in

some people and then in the end--or when we see there is no end to this

pain, we accept that we have a disease that makes us sick and we may never

see a remission the rest of our lives. There are many in-between stages I

can't seem to recall due to brain fog. Grief counseling is a big help if one

is open to it.

I must bring this to an end. I am flaring at the moment and I can't stand to

be in front of this computer too long. I hope that you have gained some hope

from my ramblings. I can only give the view point of a female. I'm sure some

of our guys here can help you understand by giving a guy's view on this.

Good luck and be determined as we are--Never give up the fight. You too are

fighting for your husband. He may not realize that now but don't worry one

day he will. It's a battle of a lifetime. Hang in there. You are doing a

fine job.

And you are not alone now. We are here for you. Please feel free to post

when you need encouragement. This disease is hard on all of us.

Gentle Hugs,

, Oregon

>

> I am humbly asking for advice. My husband is 40 and has Still's. He

> got the disease when he was 20 and I was 19, which was 20 years

> ago. He went into remission after 9 years, but has been in a flare

>

I think my main question can be this: Would someone in

> such pain still be able to be somewhat happy if they were happy deep

> down? (I am a happy person to the core and would like to think that

> I would at least attempt to still be my cheerful self as much as

> possible. But these days, I am just a silent roommate.) He once

> said that he worried that his flare and his father's death (about

> the same time) would cause him to go back to being the angry young

> man he used to be, even before Still's. He had changed so much over

> the years before the flare...I want to give him the benefit of the

> doubt. Can anyone shed some light or offer advice? Wishing improved

> health to you all, in California

>

> __._

>

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

in California:

Wow your words are some of the same ones my ex used to say but only

after she divorced me.

I can say this but only from my own life. Being a man over 40 with

stills and not being able to work any more is hard for me I would think

this is true of most men as we were raised to take care and provide for

our families.

I know when I was still working it did take every thing from me .I also

know with all the drugs I was taking at the time .11 every day and two

once a week plus Remicade. I had nothing left to give to any one not

even her or my kids emotionally or physically. The kids seamed to be

more understanding then there mother as she wanted the magic pill to

take it all away as I was no longer the husband she wanted .she was more

in to the pay check then me as a person.

I Know this now looking back we should have gone to concealing all of

us, her, me, and the kid as stills affects each one deferent. No one

escapes this weather they have it or live and love some one that dose. I

also know that some of the meds made me well less then the husband I

would like to think I am and was. I know I the end stills scared her so

bad that it was easier to get ride of me then learn to live with the

limitations it placed on us like having to cancel plans so looked

forward to.

When I had to stop work I was so upset as now what do I do to take care

of them? Again men are normally raised not to complain or talk about our

fears but to hide them, shelter the ones we love .any thing other and

most believe they are seen as wimps or babies not a big strong take

charge and care person.

What I think we should have done and may be would help others

Get counseling for every one and if any one refuses get it for the rest

no matter what.

Read about others with it and how it affects them. It is deferent in us

all but also very much the same to.

Read and ask what all side effects of the drugs are and what the mix

can also do to some one. This I should have done and did not in the end

it almost killed me for the problems that the mix caused.

Get the one with stills to talk to a counselor. Again by not doing this

I tried to take my own life. This was not me and thanks God today is not

again but the drugs made me like that and the divorce sent me over the

edge when she toke my kids form me also in that dirty deed of hers. It

was they think the prednisone that turned me from a happy go lucky man

to a depressed man.

There is so much more but this are the things I believe would have

helped us the most. The last one. Question the doctors every time a new

drug is added. Ask how it will mix with the others I take. What side

effects can there be. What should I look out for or what should some one

other look for. Yes some times others in our life's see thing before we

do or we will admit .if the doctor can not take the tie to let you know

then ask the pharmest and do your own research. Do this before you take

them do not blindly trust the doctors again as I did. Then show your

love for the one ill. Do not baby then or show pity but compassion and

care. Be understanding. When you do not understand ask so that you can

have the info to understand to the best you can. Yes if you do not have

stills it is almost imposable to know what we deal with but the more

info you have the better you will be at doing just that

Hugs to you and all here

Marty

Help for Wife of Still's Sufferer

I am humbly asking for advice. My husband is 40 and has Still's. He

got the disease when he was 20 and I was 19, which was 20 years

ago. He went into remission after 9 years, but has been in a flare

for almost 3-1/2 years

[Guest guest]

Dear ,

Hi my name is and i've only had stills for 4 years and I can

say for myself. That a person with stills never wants to be alone

but sometimes due to the pain and the stress you are very depressed.

Sometimes you feel so lonely and isolated that you really don't say

much. Try to be stay strong and stay by your husband. Let him know

that you can't sympathize with him but you can be there to support

him in all that he goes through.

Blessed and be blessed,

Nikkie

>

> I am humbly asking for advice. My husband is 40 and has Still's.

He

> got the disease when he was 20 and I was 19, which was 20 years

> ago. He went into remission after 9 years, but has been in a

flare

> for almost 3-1/2 years due to his doctor's nurse calling in the

> wrong rx, and with my husband taking it for 5 weeks before it hit

> him. His ankle is causing him great pain every minute of the day

due

> to RA (ankle bone crushing, foot bone dying), and this flare

> requires him to take 7 different medications per day - medrol,

> prednisone, fosamax, a high blood pressure med, and 3 others (he's

> traveling, so I can't check the cabinet, maybe methotrexate, too),

> plus Remicade every couple of months, and his bottle of Aleve

every

> week or so, and sometimes some wine in the evening. The longest I

> have been in pain is 7 weeks with strep symptoms, so I cannot

> understand his chronic pain. However, he does not talk about

> it.....nor does he talk to me. It is near-silence in our home,

> except for with our two little girls, whom he only sees when he

gets

> home from work for a couple of hours. When he does speak to me, I

am

> actually startled. I try to give him space - perhaps he uses all

of

> his energy at work - but I find my spirit is being broken by being

> so neglected. I'm trying to ignore my needs, but I feel very

alone.

> I swear, I'm trying not to be selfish, which is why I don't ask

him

> to talk to me about it, or anything else. Of course I ask

> sometimes, but the answers are short. There are a lot more

details,

> but I know that sitting up reading can be very taxing for those of

> you with Still's, so I'm trying to be brief while providing some

> history. I think my main question can be this: Would someone in

> such pain still be able to be somewhat happy if they were happy

deep

> down? (I am a happy person to the core and would like to think

that

> I would at least attempt to still be my cheerful self as much as

> possible. But these days, I am just a silent roommate.) He once

> said that he worried that his flare and his father's death (about

> the same time) would cause him to go back to being the angry young

> man he used to be, even before Still's. He had changed so much

over

> the years before the flare...I want to give him the benefit of the

> doubt. Can anyone shed some light or offer advice? Wishing

improved

> health to you all, in California

>

[Guest guest]

There is a book I reccomend for your husband, and for you....its called

chronically happy....it has exercises in it and philosophy and quotes

and ways to work through the process of accepting a chronic illness and

how to cope better. I think its a fabulous book!

[Guest guest]

I am Diane in No. Calif. My daughter was diagnosed 11/2004 w/ Stills. She

was in her 1st semester at her dream college in NE Washington, 1000 miles

from home. She has since had to give up college, and all dreams of her

chosen carrer, thanks to wonderful Stills, and now Fibromyalgia. My husband

has been in a terrible fibromyalgia flare since 11/2004, and for the past 1

1/2 yrs has not worked. My husband just turned 50, and did not feel well

enough for any celebration. He and I have been " just roomates " for way too

long. We have both been very angry, from all the losses our family has been

through. He had been w/ his company for 26 yrs, and has been unable to work

since 01/2005. Our daughter is unable to work. Mine is the only income, with

no benefits. We get our med ins thru Cobra. Trying to get SSi dis for him.

Also trying to figure out disability for our daughter. I care for my ill and

aged parents 5 days a week. I have been a nurse for about 29 yrs. I have

been depressed since I cannot heal any of the 4 people I love the most. Very

tough for a " healer " . My husband and I reached rock bottom a few weeks ago,

and actually mentioned the " D " word. We were able to talk and cry and pray

together, and our relationship is starting to mend. YOU ARE NOT ALONE !!!!!

I am understanding how depressing it is to live in constant pain. Both my

daughter and husband see psychologists,and are on antidepressants. I urge

your husband to seek help, and find someone to talk to. You both need to

talk to each other--starting is the hardest. I know it has been very hard

for my husband---losing his health and very active self, losing his job, and

all the friends he had there, losing his ability to garden, to go on long

drives in the car, to travel, to go to church, and other losses, not to

mention dealing w/ our daughter who has Stills and all of her losses. Plus

dealing w/ friends and family who constantly doubt that he is ill: " BUT YOU

DON'T LOOK SICK " ...... We still are discussing going to a Christian

marriage counselor, but money is very tight, and we are communicating much

better. I find that I have isolated myself from my friends---I have felt

that since I didn't have anything nice to say, I wouldn't say anything....

and they don't call anymore cuz I can't talk to them without sobbing out my

problems.....so, sorry to go on, but YOU ARE NOT ALONE!!!!! I am here for

you, to talk to. Main thing is, you can't do this alone. Can someone watch

the girls so you and your husband can talk????? Please email me any time @

stills19smommy@... I am here for you---we all are. The

Stills group are a special bunch. Guess this is my introduction to the

group, also. Big hugs to you, and I am so glad you reached out for help.

Hope it doesn't offend you, but you will be in my prayers. Diane

>

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: Help for Wife of Still's Sufferer

>Date: Fri, 21 Jul 2006 04:17:17 -0000

>

>I am humbly asking for advice. My husband is 40 and has Still's. He

>got the disease when he was 20 and I was 19, which was 20 years

>ago. He went into remission after 9 years, but has been in a flare

>for almost 3-1/2 years due to his doctor's nurse calling in the

>wrong rx, and with my husband taking it for 5 weeks before it hit

>him. His ankle is causing him great pain every minute of the day due

>to RA (ankle bone crushing, foot bone dying), and this flare

>requires him to take 7 different medications per day - medrol,

>prednisone, fosamax, a high blood pressure med, and 3 others (he's

>traveling, so I can't check the cabinet, maybe methotrexate, too),

>plus Remicade every couple of months, and his bottle of Aleve every

>week or so, and sometimes some wine in the evening. The longest I

>have been in pain is 7 weeks with strep symptoms, so I cannot

>understand his chronic pain. However, he does not talk about

>it.....nor does he talk to me. It is near-silence in our home,

>except for with our two little girls, whom he only sees when he gets

>home from work for a couple of hours. When he does speak to me, I am

>actually startled. I try to give him space - perhaps he uses all of

>his energy at work - but I find my spirit is being broken by being

>so neglected. I'm trying to ignore my needs, but I feel very alone.

>I swear, I'm trying not to be selfish, which is why I don't ask him

>to talk to me about it, or anything else. Of course I ask

>sometimes, but the answers are short. There are a lot more details,

>but I know that sitting up reading can be very taxing for those of

>you with Still's, so I'm trying to be brief while providing some

>history. I think my main question can be this: Would someone in

>such pain still be able to be somewhat happy if they were happy deep

>down? (I am a happy person to the core and would like to think that

>I would at least attempt to still be my cheerful self as much as

>possible. But these days, I am just a silent roommate.) He once

>said that he worried that his flare and his father's death (about

>the same time) would cause him to go back to being the angry young

>man he used to be, even before Still's. He had changed so much over

>the years before the flare...I want to give him the benefit of the

>doubt. Can anyone shed some light or offer advice? Wishing improved

>health to you all, in California

>

>

>

>

_________________________________________________________________

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[Guest guest]

Wow, will you marry me? Even though I'm married and I'm the woman? You made

me think of some of the stuff I must put Al through (my hubby). I thought I

knew it all cuz he has fibromyalgia along with other related problems, so I

figured he goes thru what I go thru. But sometimes I just forget that men and

women ARE different and handle things differently.

Thank you for your post. It helped.

[Guest guest]

In a message dated 7/21/2006 12:17:52 A.M. Eastern Daylight Time,

special_delivery_quartet@... writes:

Would someone in

such pain still be able to be somewhat happy if they were happy deep

down?

I used to be happy all the time it seemed - at least in my memory. Today,

after having stills and all the mental, physical, emotional and financial side

effects, " happy " is rare and today I yearn for OK. I believe when you are

happy inside deep, you always have hope/light/purpose in your psyche. After

being with this Dragon all this years, I can no longer find the hope or light

or

purpose so much. Every once in a while I find a tiny bit, but I sure do miss

it.

Just one stilligans take on your post. Good luck to you.

[Guest guest]

Hi ,

I am the wife of a 32 year old who has systemic Stills and who has not had

the opportunity to go into remission as of July 2003 when he was first

diagnosed. We have 2 young boys- one 4 and a half and 1, 6 months old. If I

think about it- our 6 month old was our message to stick at this!!!! GOOD

can come from it- WE ARE not going to go down from this horrible disease- WE

are bigger and better and stronger than that dragon on it's worst days- AND

HE does show his worst days here in our house ALL too much! I am 35.and I am

a very affectionate person who really does NEED affection as a symbol of the

love that my husband has for me. so to be neglected when he doesn't feel

well KILLS me- 2 ways- 1, because he feels so bad I can't fix it with MY

hug. and 2- that is can affect his emotions and his actions towards me. I

BEG him to still show me in so many ways that he loves me - but I am SLOWLY

learning that he just can't. I do feel that he has to learn how to find

other ways- maybe just saying I love you a little more than he usually

would. that would go very far- But it's a learning experience for both of

us. I am lucky to work in science so I understand all of his tests and his

meds- and I have a good grip on the disease but no one can teach the

psychological damage that a chronic illness can do to EVERYONE who loves the

person who is sick and to the people that they love. It's just sad-

Right this minute Bob is upstairs because we had to argue over a HUG! But,

in his defense, he is passing kidney stones (a few every so many days) and

his hip has been killing him. He already had one replacement and can not get

this other one done right now because he had the luck of getting an infected

bursa that they had to remove from his elbow and so no one will operate

until that myco bacterium that infected him is all cleared out- so he is

stuck having hip pain- and it kills him. He walks different and he acts

different. and then there is his overbearing wife saying Hi, I'm here.. Did

you know I love you.? Did you see me here today- Did you want to talk to me

today- Do you want to do something with me today- and I guess maybe if he

would JUST say YES.. I DO- to all of those things- even if he can't it would

be better. but he is quiet- and I am realizing that he might actually truly

feel bad that he can't do those things and maybe that is why he is quiet-

I can try not to pester him- but one thing I will NOT do is stop telling him

I love him and that I am here for him and that I WILL NOT get a divorce

because of this disease- NO FREAKING WAY! I didn't come this far and deal

with this for 3 out of our very new 6 year marriage to give up or to give in

to something as mean as that dragon. If he were to fall in love with someone

else- or tell me he just didn't love me anymore- I'd MAYBE consider letting

him go ( :-) ) but to let it all go because of this stinkin' disease- NO

WAY!

Even now, in the face of Long term disability from work and applying for

Social Security and having a brand new home that we just built and 2

children that we have to provide for- I refuse to fight over the illness. I

do fight- probably too much over the love that I do not want to go away. but

I am in this with him. He didn't pick the disease but I sure did pick HIM!

:-)

Are you going to the conference???

Maybe we can chat there-

Hang in there- that is what Bob tells me!

Maybe he is happy! Even if he doesn't show it! I am going upstairs right

this second to ask Bob that question!!!

Have a great night!

Love,

theresa

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of wifeofsufferer

Sent: Friday, July 21, 2006 12:17 AM

To: Stillsdisease

Subject: Help for Wife of Still's Sufferer

I am humbly asking for advice. My husband is 40 and has Still's. He

got the disease when he was 20 and I was 19, which was 20 years

ago. He went into remission after 9 years, but has been in a flare

for almost 3-1/2 years due to his doctor's nurse calling in the

wrong rx, and with my husband taking it for 5 weeks before it hit

him. His ankle is causing him great pain every minute of the day due

to RA (ankle bone crushing, foot bone dying), and this flare

requires him to take 7 different medications per day - medrol,

prednisone, fosamax, a high blood pressure med, and 3 others (he's

traveling, so I can't check the cabinet, maybe methotrexate, too),

plus Remicade every couple of months, and his bottle of Aleve every

week or so, and sometimes some wine in the evening. The longest I

have been in pain is 7 weeks with strep symptoms, so I cannot

understand his chronic pain. However, he does not talk about

it.....nor does he talk to me. It is near-silence in our home,

except for with our two little girls, whom he only sees when he gets

home from work for a couple of hours. When he does speak to me, I am

actually startled. I try to give him space - perhaps he uses all of

his energy at work - but I find my spirit is being broken by being

so neglected. I'm trying to ignore my needs, but I feel very alone.

I swear, I'm trying not to be selfish, which is why I don't ask him

to talk to me about it, or anything else. Of course I ask

sometimes, but the answers are short. There are a lot more details,

but I know that sitting up reading can be very taxing for those of

you with Still's, so I'm trying to be brief while providing some

history. I think my main question can be this: Would someone in

such pain still be able to be somewhat happy if they were happy deep

down? (I am a happy person to the core and would like to think that

I would at least attempt to still be my cheerful self as much as

possible. But these days, I am just a silent roommate.) He once

said that he worried that his flare and his father's death (about

the same time) would cause him to go back to being the angry young

man he used to be, even before Still's. He had changed so much over

the years before the flare...I want to give him the benefit of the

doubt. Can anyone shed some light or offer advice? Wishing improved

health to you all, in California

[Guest guest]

This is EXACTLY how I have been feeling lately. I was afraid to

post that on the board because I didn't want a lecture on how we are

all special beings, etc, but it is exactly the thoughts I've been

having and my non-ill friends don't seem to understand that it

doesn't mean i don't want to be here, but being chronically ill

really shuts the door on a lot of things and the person you used to

be and some days going to work adn coming home and sleeping just

isn't enough. And sure doesn't seem to give me purpose!

After

> being with this Dragon all this years, I can no longer find the

hope or light or

> purpose so much. Every once in a while I find a tiny bit, but I

sure do miss

> it.

> Just one stilligans take on your post. Good luck to you.

>