Dawn Re: 1st year with stills DX or not.

[Guest guest]

Greetings Dawn,

 

I agree 110%.  some stuff is nice, but what stuff is the difference.  i hit a

real rough financial period in my life a while back. lost the house. before

that, lost the electricity.  funny as this sounds, it was one of the best

summers of my life. i splurged even though money was nearly nonexsisant and

bought a deck of cards, a package of five dice and a monopoly game.  my

daughter and i spent our afternoons reading books that we had just 'never gotten

around to reading' to each other and our evenings either playing games or

telling stories by candle light. now i'm not saying i ever want to put my

daughter through living without something as basic as electricity again, but

those evenings with her really were great.  every once in a while she still

askes if we can turn off all the lights, light some candles, and me just tell

her old family stories again. i always do when she asks too.  sometimes when

things get tough and we really have to dig deep

to find the strength we need, we also find some pretty amazing suprises.

 

blessings all,

elizabeth

Subject: Re: 1st year with stills DX or not.

To: Stillsdisease

Date: Wednesday, January 27, 2010, 12:23 PM

 

Marty,

I could not agree more!  In a twisted, ironic sort of way Stills has been a

blessing to our family.  I constantly tell my husband that I would gladly live

in a cardboard box if it meant he would be healed.  While it is hard to see him

in pain everyday it has brought our family closer together on so many levels. 

We spend more family time together (since my husband is out on disability) and

we have completely reevaluated our priorities in life.  We are in the process

of giving up most of the " things " that we have spent years accumulating (we

thought STUFF was important - go figure), we are selling the mcmansion and we

are downsizing our entire lives so we can live a more authentic life with our

son. We are afraid we have been teaching him all of the wrong things - work hard

so you can go to college so you can make money so you can buy things and be

" successful " . Gross.

While there are certainly some things we cannot live without (food, health

insurance, some sort of roof over our heads, education) there are also many

things that we will give up gladly - the mortgage, the 60 hour work weeks, my

son's bankrupt public school, the massive yard that needs constant maintenance,

etc. We will simply LIVE. We will volunteer more (because no matter what there

will always be people out there that are worse off than we are), we will

educate our son, spend more time with extended family (as long as they are not

sick and rest our minds and souls for a little while.

Stills will not control our lives BUT we will find a new, better way because of

Stills. 

Marty may I have your permission to pass on the armored truck/uhaul following a

hearse line? I love it!

Sincerely,

Dawn 

1st year with stills DX or not.

 

Hi all

 

Aging I have been reading a lot from people who are some what new to stills and

all the changes to there lives because of it. Well I thought I would touch bases

on a few of them just not on any medications just on how life can and dose

change.

 

 1st you most likely feel scared confused and alone. No one seams to understand

you not even your family. This is normal and so is you going threw stages of

anger hate and acceptance. This is why I have always pushed for the one with

stills along with every one in that house hold to get some concealing as it

changes life for all some more then others but not a one is left untouched by

it. I remember my self going threw denial of how sick I was and forcing my self

to believe a shot or pill would have me back to normal in no time at all. Well

it is now ten years later I am still waiting and it is a good thing I did not

hold my breath.

 

Yes it is not easy at first with stills as it tends to be the hardest part of it

all the start that is and with that I mean the first 6 months to a year. Yet you

are not just fighting stills you’re fighting your self your dreams and what

you have always believed life was going to be. I know I did to a point it almost

coasted me my life after all if I was not going to get better then all I was

doing was wasting good air someone other could use. no one wanted me any more

heck even my wife I had been with for 26 years 19 of them married did not want

me any more because of stills and how it changed our life yes our life’s and

my self personally. Stills helped me drop into a dark hole of depression that I

have never seen before and I pray I never see again yet I still refused to get

concealing as that’s for the weak. well I am here to say I am weak and I

needed it then more then any time in my life before or after as stills changed

all of us down to

even family that was not living in our house. So get counseling it’s a first

step to healing and living with stills. Yes some can do it with out it but are

they really or are they sweeping it under the rug? Are they taking longer or are

they doing more damage like I did to them self have and to loved ones? I know I

climbed in to a shell and would not come out but I did not know it my son

pointed it out to me many years later and he was right I had done that I

mentally left my family in my sadness, worry, fear, and depression! I also now

know it harmed him as he lost his father during that time and yet he needed me

so badly then as he also lost to stills his father as he knew him. He had his

own fears and a mother who would not listen to him as she was buried in her own

fears also.

 

Now I can say there are many things I do miss from life pre stills but there are

many things after stills that I would not give up. Se because of stills I also

learned what is really important in life and who I can trust! I am not what I do

but I am a person and I know who I am for the most part now days. and to be

honest I have a better life now after stills then I had before it in every way

almost but money and goods but then again I have never seen a brinks armed truck

nor a Uhaul ever fallowing a hearse at the end of a person life so that alone

tells you what is important is not what you have it is in who and how you touch

others and what you leave them with as in a part of your self in did you let

them into your life for real or did you only let them act as if they were a part

of your life.

Hugs all

 The Redneck

Marty G.

To learn about Stills Disease http://www.stillsdi sease.org/ stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.