Re: the long of the short (emphasis on the long)

[Guest guest]

Thank you very much for your post and for taking the time to do it. I know from

watching my son that everything you do takes energy...and it is something that

needs to be conserved. So thank you very much.

Please pray for me and for him. I'm going to need a lot of wisdom this weekend.

He sometimes is in denial...but then when the pain hits he is overwhelmed. It's

a vicous circle.

I know he misses living and doing " normal " things. He never goes out

anymore...doesn't have the energy. He said he cannot remember what it used to

feel like to not have pain. He misses having a partner. His wife wanted

kids...and he did too...but Stills even took that ability totally away from him.

As a young man I can't imagine how me must feel at times. Thank you for your

compassion.

the long of the short (emphasis on the long)

greetings all,

ok. i said i'd give the long version, so here it is.

for the record, my diagnosis is still's not AOSD as i was diagnosed long, long

ago (age 8) in a land far, far away (detriot) anyway, so i've been battling

this beast for going on 30 years. that also means that for me, some things are

chicken and egg questions. did the pain and other issues lead to depression? or

would i have suffred from depression anyway? and did the depression (aka stress)

make the still's worse at times or did the all the health and pain stuff make

the depression worse? who knows, but they do seem to aften go hand in hand.

so anyway. i was anything but a healthy kid. diagnosed with epilepsy (along

with migraines) at age 6, still's at age 8, allergies for as long as i can

remember, intestinal issues just as long as the allergies (they decided to call

it IBS when i was a teen), heart murmur at 9, and, last but surely not least, a

stroke at age 18. i didn't exactly have the average childhood. I have never

lost a spouse or lover due to my health. the people who have come into my adult

life have always known what they are getting in to. what i lost was a dad.

during the initial onset of the still's, like so many others here, everyting

just raged out of control (104/105 fevers, rash, etc, etc). and of course no one

seemed to know what it was or what to do. my dad couldn't take it i guess and

left. I still saw him and he always made sure the money was there for what i

needed, but it was not the same. even at that age i understood that he left

because i sick

and well, let's just say that it was no an easy thing for me. add to all that

the fact that back then there were far less treatment options and the idea of

giving pain killers to a child considered outragous by most and i guess the

depression makes sense.

besides the depression, i also battled anorexia for years as a teen. so no,

my body never really feels hungry. i have learned over the years that food is a

good and needed thing (even if the idea of eating is a little nauseating in and

of it self). i have learned when, what and how much to eat to stay healthy. i

have also learned what is truly a good, healthy and functional weight. if my

weight goes to high (like right now) my joints hurt more. if it goes too low

everything just starts to fall apart health wise. for me (and only me) a good

weight is around 125-130. go below 120 or over 135 and i'm gonna have problems.

when that happens, i take steps to correct things. more fresh friuts and

veggies and what execises i can; less fats and sweets when my weight is to high.

when my weight drops there are lots of things that help (it is easier to gain

than to lose); add powdered milk to sauces, more eggs, butter, meat, lots of

grains and

then their is always Ensure drinks.

as far as the depression, i have had my ups and downs. i've learned to try

and look at the positive side of things, to remember to be greatful for even the

little things, to try my best to live to the fullest (what ever that may be at

the time) and when all of that fails, to reach out to those i trust when things

get bad. those have not been easy things to learn and i did need help to learn

them. depression is no less serious than still's and, in all honesty, i think

it is more likely to kill. of all of my health issues, the depression was the

one that almost did me in at an early age.

the stroke i had at 18 was kind of the straw that broke the camels back. it

was a few months later that i almost ended my won life. i intentionally

overdosed on my seazure meds. i took over 125 tablets in about a 1/2 hour. lets

just say it wasn't pretty and today i can not even begin to put words to how

thankful i am to have survived.

i read all of the posts from everyone in this group. one of the things i see

often is the wish to get life back to normal, what it was before still's. i

can't really remember 'normal'. i've had health issues and pain for as long as

i can remember. i have had some good years in there and for that i am greatful.

i've recently come out of the longest remission of my life (almost 5 years). i

got to climb trees and run with my daughter. i got to work and have a 'regular'

life. it was great while it lasted and i hope to see it again one day. for

now, i'm learning to live with MY normal again. the key word in that last

sentence is live.

with active still's, i went to college. i had my daughter. i found my faith.

i became a minister. i traveled the country. i fell in love. i lived. i had to

do it in my own time, but i did it. chronic illness may change our lives, but

it does not take away our ablilty to enjoy it. nothing can take away happiness

or joy. but if we are not careful we can throw it away without realizing we are

doing it. luckily, we can always find more and it is always free. joy and

happiness are kind of like smiles (and rabbits) they multiply quickly whan you

let them.

i hope everyone is having the best day they can. and remember, smile, it

gives you something to do when your bored.

love and blessings to all,

elizabeth