/frustration/depression~/LONG

[Guest guest]

Greetings Fellow Stilligans

First of all, please all join me in welcoming back from her

" sabbatical " . She was very much the brains behind our original web site, and

much of her energies can still be seen on the new site. and have

made it easier to get around in, and are implementing new things..but 's

hand print is there and may always well be. Remember our new fellas trained to

do this stuff, and are so good, but Jenn did it all by herself learning as she

went..so we owe a debt of gratitude to her!

Living with any chronic illness is frustrating, and disease that causes us to

have to alter our lives in big ways is more than the sum of its parts. We get

sick, we look for diagnoses, sometimes we get them quickly, sometimes very

slowly, but ultimately we get 'em.

Then what? Well, we look for everything we can get our hands on about SD, and

we find the AOSD site, we read the histories, the info, and we feel a bit

better, knowing we aren't alone in the universe...we then get involved with the

mailing list and find friendship, information and endless support. That's a good

thing.

However, as we wrestle with the Dragon, we become quickly sick and tired of

being sick and tired. We simply get worn to a frazzle dealing with the illness,

the effect it has on relationships,family and friends. That's a bad thing. All

one can do is refer them to the website and get a brochure and help them

understand.That's a good thing

Then you find that you can no longer work for a living, and have few options

available to you. SSDI ( in the US)

DBI and II in Canada. I paid into a govt pension plan all the time I worked,

so I had some money coming in, but not much..today I live on 802. a month, but

my meds are paid for as are my doctors! That's a bad thing

We tend to get dicked around alot, because we " DON'T LOOK SICK " . Now if we

were all in wheelchairs drooling it would be so much easier. However, we may be

sick but we have some pride to contend with. We don't wish to appear helpless,

even when we are! All discussions and paperwork that you must fill out for the

disability MUST be filled in as your absolutely worst days...and NEVER your okay

days!

What I'm saying is it's survival of the smartest, and honesty doesn't always

pay..trust me. I have filled out, and have helped fill out hundreds of the many

paged reports. I see who gets then and who doesn't. Carole from Fla is always

willing to help with queries about SSDI. Just ask her!

Finally it's the depression that takes us to our knees. It seems that

overnight we have gone from normal working or going to school, starting a new

career..to the dragon, and the frustrations of dealing with AOSD. Your lives

torn up beyond belief.

I have been on a " mood altering " medication for several years now.....I don't

have the natural highs anymore, but I don't have the lows that I used to have.

I'm somewhere in the unfeeling centre..which will change once I get out of my

present situation! My drugs will be lowered and I will again be the nut that I

was.LOL

Thanks to those of you who read to the end....I was kinda vocal about alot of

stuff....hmmm do you suppose them thar drugs are etching my thought panels? NAH!

smiles and regards

Cat

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[Guest guest]

I am looking for any publications I can get my hands on about Still's . I was

just recently diagnosed and am looking really hard. Can anyone help tell me

anything about this. All info would be helpful. ie,...book, article, etc.....

THANKS ! Angelia

Zovtic wrote: Cat:

I'm one of the lucky ones with ssdi but it did take the better part

of 2 years or so to get. It wasn't until I acquired a lawyer that it

was decided in my favor. Now here's the part you're going to love...

Because I get ssdi, so does my son. He gets half of what I get. I

believe the reasoning behind this is that I'm the primary caregiver,

or at least I am on the good days and I make the decisions as far his

school supplies, clothing, etc. The monies he receives is supposed

to be used toward such items.

He's a teenager, I spend a good portion of the money he gets on his

things and put the rest away in his college savings plan. He hasn't

mounted much but I have three different college savings for him (two

of which my husband doesn't know about). At the moment I can tell

you my son will be attending a state college for his undergrad and

will be running far away from us for his graduate work. I know this

because he's all ready told us. Of course this is the same child

that wanted to either be an astronaut or a baseball player for the

Marlins. Damn, they grow up too fast! Rubin has decided (again, can

change at any moment) that he would like to be a Jet Propulsion

Engineer. The child is extremely bright (he get it from my side of t

he family) and will succeed at anything he puts his mind to.

Please excuse the deviation, it was unintended. Pride made me do it

(yesh, we'll go with that). SSD/I is difficult to get but it is

achievable. You may have to get a lawyer, however, since we're not

considered as having one foot in the grave (thank G-d). And one of

the greatest things is you can still work part time but you have to

let them know about it.

Think positive, remember the sun shines within you and only you can

light up your part of the world.

Take care and be well.

Ellen

Angelia

Aloette of Central Arkansas

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