RE: Debbie-I am new!

[Guest guest]

Welcome Debbie,

I think you've said what quite a few have gone through in many respects as far

as the uncertainty of where our lives may lead once diagnosed with Still's and

the many twists and turns it can and often does take. But, I'd like to say that

it isn't always bad and often can surprise us and one thing is certain. It is

similar to life in that it changes. Sometimes minute to minute. We, here at the

group change and understand too. There are many with different stories, forms,

stages, but we understand and all try and support one another.

So, we are happy to welcome new people to the family we share and hope we help

you in some way.

Please feel free to write any one of us and share here whenever it helps.

To go to chat just go to www.stillsdisease.org and click the chat link of the

first page. Once on the chat page on the left should be a place to make an

account. It's simple. Just add your name and create a password and what it asks

and then it will let you check in. Cat is usually hosting and can take it from

there. If your having problems just post here and someone is usually around to

help lead you through the steps.

Good luck and good evening.

Smiles to you,

From: supermommy76@...

Subject: Debbie-I am new!

Well Hi Everyone!

Writing you all has taken me six months....I have chosen to be the annoying

person who " lurks " I suppose. More scared than anything because of how this

illness came to a head. I am a mommy of well it was 4 boys but I have one

biological son who is ten. I can say I have been through a lot as I know most

of you have as well. I came from an abusive relationship and used to think that

if my husband was the worst of my issues I could handle it. I learned quickly

that when it would come to fighting for my life, my son and my life were more

important to me than anything.

[Guest guest]

Dear Debbie; I just read you post in my e-mail. I to had a few tears for you as

I read . You are now going down a road that you did not choose to go down. You

do not need that Man ,well I would not call him a man he is a child. I to got a

divorce 5 years ago and got Stills 3 years ago. It has been hell for me but we

all have differant systoms with it. It is your time to reast , take care of the

kids (don't know how many ) and look at life in a differant prospective. I was

very outgoing and always having fun. All of a sudden BAM the Monster got me. It

was bad and been in hosp. 4 times in 3 years. I had to convince myself that I

was sick and could not do the things I loved to do.  Age 58 Male. Retired

,single, have a nice home and truck. I have no finacial worries. I am Sick and

if I am haveing a good day I want to do something and I tell myself , you can't

do that. I guess we just have to accept the road we are on and live life Hour by

Hour and Day by Day. That is all we can do. This is not a quick fix illness it

keeps us down.

Sooo  many systoms with Stills we never know how the next day will be. Today I

am doing better than yesterday. You keep your head up and look to God for his

help. It is hard to accept, but once you accept that you are not the same person

and you are going down a road that you never wanted to, you accept your life,

and when you can do that your attitude will change. I hope you will have a good

hour or day and this is the place to tell all that is on your mind. If Stills is

keeping you from doing something and you need help finding out the answer or how

to do a task with Stills just ask here and someone will help you along the way.

The people on this site have been there and done that. We are a rear breed and

need support .

So just write down your questions and you will get answers here ......OK 

Proangler

GARY

 

________________________________

To: stillsdisease

Sent: Thu, February 24, 2011 9:06:44 PM

Subject: Debbie-I am new!

 

Well Hi Everyone!

 

Writing you all has taken me six months....I have chosen to be the annoying

person who " lurks " I suppose.  More scared than anything because of how this

illness came to a head.  I am a mommy of well it was 4 boys but I have one

biological son who is ten.  I can say I have been through a lot as I know most

of you have as well.  I came from an abusive relationship and used to think

that

if my husband was the worst of my issues I could handle it.  I learned quickly

that when it would come to fighting for my life, my son and my life were more

important to me than anything.

 

Started with a diagnosis of fibromyalgia and little to no help!  Year later it

would be Lupus with again little to no help!  I am sure most of you get this. 

Then the fever caught the attention of an emergency room physician whom noticed

high inflamitory levels, something in the heart lining, lung imflamation among a

few other issues.  Long story short, an awesome rhematologist in Seattle, Wa

hit

me with AOSD!  I am learning as I go but still afraid of whatever it is!  With

that I mean that it is truly hard to accept a diagnosis when in a ten year

period its gone all over the map!  At 34 I am on disability which I am greatful

for an income...and, I try to stay as posiitive as possible.  I am going

through

divorce now and have been away from the abuse for over a year now.  If

anything,

the disease saved me really!  It's presence and pain pushed me to fight for

myself in a way I truly never thought I could yet lately I am trying but I

realized I

could really benefit from the company of others whom understand.

 

I am the one whom is always " fine " ....don't have to go to the Dr.s yet, I will

go if it gets worse, I just need to rest...so on so fourth.  I focus on being a

mom but put way to much pressure on myself to be like " everyone else " .  I don't

know if any of you can agree with this but I feel like through this process I

gain strength but also I lose bits and pieces of the " me " I am so used to.  I

would compare it to " shedding " almost lol, it's like a dog...the shedding is a

pain to clean up and can drive you insain but everytime whether it is a lighter

or darker fur that comes in, you find an appreciation for it.  I try not to go

there with the " who I was " or " what I could do " , I try to find something that

still keeps me going no matter what it is.  Lately it is getting harder, the

pain is at an ultimate high and the " new " med is making me feel just plain

nasty.

 

My leaving the previous relationship has not been easy.  My ex has broken the

restraining order on more than 30 documented and called in occasions but there

were some " clerical errors " that kept the police from prosecuting.  He has now

filed for full custody and though I know he will never obtain it, the things he

has put in his statement hurt so badly.  It is almost as if I accept that I

have

AOSD than it means I am all of those things.  At the point I was diagnosed, my

ex went out to the waiting area to inform my family of my condition...I was not

fully aware yet as I was truly so close to death it is scary.  He literally

said

what was wrong and then stated " I didn't ask for a sick wife, I don't even need

one " , and within the two days time that I was in the hospital he had already

found a new love and had moved on.  For some reason, I have been afraid to even

discuss the disorder with anyone.  The court papers state that I " take a lot of

meds " ,

that " it is unclear I will be around for my son " and that " though the father has

anger issues he can still offer stability health wise " . 

 

It is sick to me that my disability can be used against me, it makes me want to

scream sometime.  I do have to admit that though I have passed tears while

writing this, I do feel a sense of relief from sharing.  I hope I didn't dump

to

much on anyone-yet, I thank you for reading and taking the time to listen.

 

I also apologize for " lurking " but, everyone is different and I am glad I took

the time tonight to jump in.  I pray for you all nightly and thank you for

letting me vent.  I am here in Washington and would love to help or chat with

anyone when they need someone as well.  I am still trying to understand exactly

how this works and would love to do the live chat but really haven't figured out

how to.

 

Thanks and God Bless you all,

Debbie

[Guest guest]

Debbie

 first off Hi and welcome . you most likely know me and some of my own story by

now but lets just say I have a good idea how your feeling. I went threw the

divorce deal I had my stills used against me . my ex wife was the abuser and

even stole all rights i had to my kids away from me and then truned one even

against me. I to even as a man have shed tears more then once over the years and

am now just knowing another person has had to face the hard evil I have faced

many years ago. now I can also tell you with a smile and great Joy it also was

one of the greatest gifts my ex could have given me the divorce that is. see  I

would never have left her because of my faith and beliefs but she set me free

and later down the line I meet the woman I am now married to and I have never

felt the love I do now from her and it keeps growing day by day year by year. my

family also grow as she had 3 of her own and now we also have a wonderfully

grandchild. my son and I are as close to day as we ever have been and let me

tell you he had to fight his mom to call see me or even spend time with me . see

she punished him for wanting that and rewarded my daughter for doing as she

wanted. 

any way I will also tell you I would not want to give up stills if it meant I

had to also give up all of them in my life or this wonderful family here that

you are now opening up to your self. so it may be sad in how it all comes about

but it dose not have to stay that way at all o stills can make it not easy that

I know but down inside of you that is were the real person and fight to live is

that is were how I am going to look at it is and how I am going to live with it

and learn from it and carry on my life is all to come from. so just as you have

taken some very big steps already it has only shown you how strong you really

are and how big of steps you can take so supermommy76 you go for that golden

ring on the marry go round of life grab it and hold on as no one ever knows what

coming around the next corner as life is full of great surprises some not so

good but almost all even the bad ones cam be found hiding good part is you learn

to look for them

hugs and welcome 

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

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