: Goodbye- or a learning experance (by the red neck so its long)

[Guest guest]

I would like to add to Angelia's post  a bit here and yes I say a lot at times

and get wordy but this is my laying my self open to may be help us learn a leson

..

 Angelia said  "  I didn't know what it was for months and months. After I

found

out that's when I found this group. I have to say that reading about other

people that have the same type of pains, problems and of course bazaar rashes

and crazy stuff that goes on with us.. ( I hear ya o man do I hear ya Angelia) 

That's what helped me. I never want anyone to hurt or feel pain but knowing what

I was experiencing wasn't all in my head and I really wasn't crazy. I have

always been a strong person and have led my life to help and inspire others and

didn't really view myself as someone that would normally seek this support. ( I

can relate as after all I am a real man and men do not ask for help like this 

well thats what I used to belive any way)

 

Okay at first I could not talk to any one not my wife and defiantly not my kids

at first. Down the line I still could not talk to my wife the fact is she let me

know directly I was an anchor around her neck and had screwed up her whole life

and plans for life. Like it was my fault I got stills. Hell she even complained

to my mother about my medical cost like I was doing this to hurt her, and to let

you know my mom cared for my dad to his very last day never leavening his side.

Mom was so sick over this she never told me about it tell years after my

divorce. Yes my divorce, she later set me up and divorced me because of stills.

I still had no one to talk to at all not even my so called pastor! He had even

told my wife to go for it because hey if it’s not working what the heck do it

and ask for forgiveness later. I could not talk to my kids shit they were torn

up already dad was sick and now dad was forced to leave and they worried if I

would even live much longer because how sick I was at the time not my words

threes.

So I had family my family sisters and brothers right? Nope no one there to help

or talk too really. They were split half thought I must have done some thing

after all we had been together for almost 26 years with 19 of them married. The

other half well they were okay with he divorce or stills but not both almost

like they were afraid they could catch it or some thing. Then when I almost did

loss my life that ended any family support for a few years and to this day some

are still stand offish. Heck if I see them once a year that’s pushing it. So

for

11 years my main support has been here and that’s about it.

 

 do I have an active life well yes and no I do not work so making friends is

not

easy as I live way out in the sticks and its 30 miles to town so not a lot of

people contact but threw the internet.

 

Am I depressed over it all? Not any more but yes I was. I do feel I have a dam

good life now O I can piss and bitch like any one and some times I do but for

the most part I think I am some what up beat about living with stills notice

liveing with not fighting not giving into but living with and try this on even

enjoying the gifts of stills to me from here in my life! Now that is and has

been a gift that with out stills I would not have know or gotten to meet so many

here and yes thank God for stills so that I did get that gift of friend ship!

 

now I still stay active mentally I also keep my self so busy some days I forget

what time it is and next thing I know its already 2 or 3 in the morning.

The point is I have gone threw a lot of steps in this stills path not all of

them have been good ones and I made some very bad chooses also in it. Now

 

if I can use that experance to help some one not fallow in my foot steps then

let them come here and talk freely because being safe here may be the only place

they have I know it was for me and its because of here that I am were I am

today.

 

Now I will say when I hit my darkest time with stills I really felt here was all

I had left and thank God some were willing to read and answear back because in

that darkness I needed the light of a friend really bad!. between the meds and

there side effects hitting me, the loss of my job, my life as I saw it, then my

marriage and my kids as I was forced away from them, . then add to it two deeply

loved people in my life( my grandma and my father inlaw) dieing with in a month

of each other I lost it big time. All this came down in less then a year. this

place and people were the only ones that seamed to see it and were willing to

say a dam thing to me heck one person was even in my face hard and ruff but

thank God they were. see now to day I am here and I will do the same I will

laugh and joke but let that one person come here that needs that shoulder or the

ear and you dam will better know it I will be here for them as others were for

me.

want makes me sad is that you would even think of leavening instead of looking

past most that you may not care for and I say that because you have got to have

a head full of knowledge in how to's of life . over the years its been hard to

here young kids come here and fighting this with no way to know what to do or a

parent who’s child has it and there lost and scared to death yet someone like

you can stand up and say hold on here look at me I am proof its not going to

stop you from living its only going to make you adjust some things and that’s

it. See the kids and the parents need people like you yet there post at first

will be nothing but fear and or about pain and how do you make it  That is

about

all any one talks about when they first come here and that’s for the first

year

or so then it slowly changes . Unless you’re a parent I do not expect you to

understand a parent’s love and fear when the child has this and as a parent

you

feel helpless but I would expect you to understand how they could use your voice

and experience. but this is that last I am saying on it as in the end its your

call always has been and as I said will miss your words but you have to do whets

best for you just like each of us do in the end

 

The  Redneck  

Marty G     

 

In life there are few greater joys then the freedom of free will given to us By

God, the ability to love, the freedom to chose our friends, and the freedoms we

have been given and guaranteed by our founding fathers. Now if congress and the

President would just let us enjoy them instead of trying to interfere because of

there fear of them.

Marty G

5/11/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

 

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Thu, May 12, 2011 8:39:03 PM

Subject: Re: Goodbye- Bari

 

Bari-

I have to fully agree with Marty, April and . All different points but also

very much the same. I would like to say this, I am not the most active person in

this group. The great thing is everyone is always here when I need them and if I

can occasionally help someone else then I absolutely try my best to do so. There

is no way that I would have even gotten to the point of knowing as much as I do

about this disease. Fortunately there are so many that have experienced so much

before me and have been willing to share what did and didn't work. I have not

always had Still's. Mine came to a head in the hospital after a Hysterectomy at

the age of 31. Of course I didn't know what it was for months and months. After

I found out that's when I found this group. I have to say that reading about

other people that have the same type of pains, problems and of course bazaar

rashes and crazy stuff that goes on with us... That's what helped me. I never

want anyone to hurt or feel pain but knowing what I was experiencing wasn't all

in my head and I really wasn't crazy. I have always been a strong person and

have led my life to help and inspire others and didn't really view myself as

someone that would normally seek this support. As the others have said, everyone

has a choice and we don't want to see anyone go but please also know that if you

have had this disease for this long you have a great wealth of knowledge that

could really help others. Oh.. One more thing..... This group is here for the

good the bad and he ugly.....cheering you on in the good times and praying and

supporting and encouraging in the bad times. Sometimes when someone expresses

the pain they are feeling or just how hard things may be, it just may be the

thing that helps to hold their family, relationship or own sanity intact. There

are so many of us that don't discuss our aches, pains and sorrows with our

friends, family and lived ones for several reasons.... Maybe it's because we

don't want them to worry, maybe it's because unless you've experienced it

there's just no way they would understand, or maybe it's because we don't want

to be a source of complaints to them and this is the only outlet. Just about

every time you can see a post starting out bad if you follow it you will see

that it ends up with so many living words and encouragement for that person.

Just wanted to express my opinion and personal experience. Whatever you decide

to do, I wish the best for you. Take care....

Angelia

ville, AR

[Guest guest]

I think that you have every right to leave this group, when it feels that way to

you, but I just wouldn't be able to right about others complaining! I don't have

still's, but my 9 year old does, having to watch him in pain everyday, and see

what other issues he has to deal with I would want him to be able to let that

kinda stuff out! Even if it's complaining, although I would try to curb some of

that so he doesn't dwell on it! He doesn't really complain even though I ask him

about it, and that concerns me! I don't want him to keep it all in, so he starts

to become bitter! But on here, I think some people don't have anyone to let

their frustrations, hurts, or anything else out to. That would be so hard for

me, it sometimes just helps to vent and get on with the day. That is what this

group is for! I have found so much information, and encouragement on here, and

I'm just a caregiver! This is a wonderful group, and I commend everyone on here,

you all deal with so much, and so much of it is what I see my son deal with

everyday. It just helps knowing that he isn't alone, and I have been able to

rest in that! Thank you all!

>

> I would like to add to Angelia's post  a bit here and yes I say a lot at

times

> and get wordy but this is my laying my self open to may be help us learn a

leson

> .

>  Angelia said  "  I didn't know what it was for months and months. After I

found

> out that's when I found this group. I have to say that reading about other

> people that have the same type of pains, problems and of course bazaar rashes

> and crazy stuff that goes on with us.. ( I hear ya o man do I hear ya

Angelia) 

> That's what helped me. I never want anyone to hurt or feel pain but knowing

what

> I was experiencing wasn't all in my head and I really wasn't crazy. I have

> always been a strong person and have led my life to help and inspire others

and

> didn't really view myself as someone that would normally seek this support. (

I

> can relate as after all I am a real man and men do not ask for help like

this 

> well thats what I used to belive any way)

>  

> Okay at first I could not talk to any one not my wife and defiantly not my

kids

> at first. Down the line I still could not talk to my wife the fact is she let

me

> know directly I was an anchor around her neck and had screwed up her whole

life

> and plans for life. Like it was my fault I got stills. Hell she even

complained

> to my mother about my medical cost like I was doing this to hurt her, and to

let

> you know my mom cared for my dad to his very last day never leavening his

side.

> Mom was so sick over this she never told me about it tell years after my

> divorce. Yes my divorce, she later set me up and divorced me because of

stills.

> I still had no one to talk to at all not even my so called pastor! He had even

> told my wife to go for it because hey if it’s not working what the heck do

it

> and ask for forgiveness later. I could not talk to my kids shit they were torn

> up already dad was sick and now dad was forced to leave and they worried if I

> would even live much longer because how sick I was at the time not my words

> threes.

> So I had family my family sisters and brothers right? Nope no one there to

help

> or talk too really. They were split half thought I must have done some thing

> after all we had been together for almost 26 years with 19 of them married.

The

> other half well they were okay with he divorce or stills but not both almost

> like they were afraid they could catch it or some thing. Then when I almost

did

> loss my life that ended any family support for a few years and to this day

some

> are still stand offish. Heck if I see them once a year that’s pushing it. So

for

> 11 years my main support has been here and that’s about it.

>  

>  do I have an active life well yes and no I do not work so making friends is

not

> easy as I live way out in the sticks and its 30 miles to town so not a lot of

> people contact but threw the internet.

>

>  

> Am I depressed over it all? Not any more but yes I was. I do feel I have a dam

> good life now O I can piss and bitch like any one and some times I do but for

> the most part I think I am some what up beat about living with stills notice

> liveing with not fighting not giving into but living with and try this on even

> enjoying the gifts of stills to me from here in my life! Now that is and has

> been a gift that with out stills I would not have know or gotten to meet so

many

> here and yes thank God for stills so that I did get that gift of friend ship!

>  

> now I still stay active mentally I also keep my self so busy some days I

forget

> what time it is and next thing I know its already 2 or 3 in the morning.

>

> The point is I have gone threw a lot of steps in this stills path not all of

> them have been good ones and I made some very bad chooses also in it. Now

>

>  

> if I can use that experance to help some one not fallow in my foot steps then

> let them come here and talk freely because being safe here may be the only

place

> they have I know it was for me and its because of here that I am were I am

> today.

>  

> Now I will say when I hit my darkest time with stills I really felt here was

all

> I had left and thank God some were willing to read and answear back because in

> that darkness I needed the light of a friend really bad!. between the meds and

> there side effects hitting me, the loss of my job, my life as I saw it, then

my

> marriage and my kids as I was forced away from them, . then add to it two

deeply

> loved people in my life( my grandma and my father inlaw) dieing with in a

month

> of each other I lost it big time. All this came down in less then a year. this

> place and people were the only ones that seamed to see it and were willing to

> say a dam thing to me heck one person was even in my face hard and ruff but

> thank God they were. see now to day I am here and I will do the same I will

> laugh and joke but let that one person come here that needs that shoulder or

the

> ear and you dam will better know it I will be here for them as others were for

> me.

>

> want makes me sad is that you would even think of leavening instead of looking

> past most that you may not care for and I say that because you have got to

have

> a head full of knowledge in how to's of life . over the years its been hard to

> here young kids come here and fighting this with no way to know what to do or

a

> parent who’s child has it and there lost and scared to death yet someone

like

> you can stand up and say hold on here look at me I am proof its not going to

> stop you from living its only going to make you adjust some things and

that’s

> it. See the kids and the parents need people like you yet there post at first

> will be nothing but fear and or about pain and how do you make it  That is

about

> all any one talks about when they first come here and that’s for the first

year

> or so then it slowly changes . Unless you’re a parent I do not expect you to

> understand a parent’s love and fear when the child has this and as a parent

you

> feel helpless but I would expect you to understand how they could use your

voice

> and experience. but this is that last I am saying on it as in the end its your

> call always has been and as I said will miss your words but you have to do

whets

> best for you just like each of us do in the end

>

>  

>

> The  Redneck  

> Marty G     

>  

> In life there are few greater joys then the freedom of free will given to us

By

> God, the ability to love, the freedom to chose our friends, and the freedoms

we

> have been given and guaranteed by our founding fathers. Now if congress and

the

> President would just let us enjoy them instead of trying to interfere because

of

> there fear of them.

> Marty G

> 5/11/2011 

> To learn more about Stills Disease or to make a tax deductible donation:

>  http://www.stillsdisease.org/stills_info

>  

>

>

>

>

>

> ________________________________

>

> To: " Stillsdisease " <Stillsdisease >

> Sent: Thu, May 12, 2011 8:39:03 PM

> Subject: Re: Goodbye- Bari

>

>  

> Bari-

> I have to fully agree with Marty, April and . All different points but

also

> very much the same. I would like to say this, I am not the most active person

in

> this group. The great thing is everyone is always here when I need them and if

I

> can occasionally help someone else then I absolutely try my best to do so.

There

> is no way that I would have even gotten to the point of knowing as much as I

do

> about this disease. Fortunately there are so many that have experienced so

much

> before me and have been willing to share what did and didn't work. I have not

> always had Still's. Mine came to a head in the hospital after a Hysterectomy

at

> the age of 31. Of course I didn't know what it was for months and months.

After

> I found out that's when I found this group. I have to say that reading about

> other people that have the same type of pains, problems and of course bazaar

> rashes and crazy stuff that goes on with us... That's what helped me. I never

> want anyone to hurt or feel pain but knowing what I was experiencing wasn't

all

> in my head and I really wasn't crazy. I have always been a strong person and

> have led my life to help and inspire others and didn't really view myself as

> someone that would normally seek this support. As the others have said,

everyone

> has a choice and we don't want to see anyone go but please also know that if

you

> have had this disease for this long you have a great wealth of knowledge that

> could really help others. Oh.. One more thing..... This group is here for the

> good the bad and he ugly.....cheering you on in the good times and praying and

> supporting and encouraging in the bad times. Sometimes when someone expresses

> the pain they are feeling or just how hard things may be, it just may be the

> thing that helps to hold their family, relationship or own sanity intact.

There

> are so many of us that don't discuss our aches, pains and sorrows with our

> friends, family and lived ones for several reasons.... Maybe it's because we

> don't want them to worry, maybe it's because unless you've experienced it

> there's just no way they would understand, or maybe it's because we don't want

> to be a source of complaints to them and this is the only outlet. Just about

> every time you can see a post starting out bad if you follow it you will see

> that it ends up with so many living words and encouragement for that person.

> Just wanted to express my opinion and personal experience. Whatever you decide

> to do, I wish the best for you. Take care....

>

> Angelia

> ville, AR

>

>

>