Hi Jody!

[Guest guest]

I’m your girl!

Living with it- dealing with it every day- and have been for 4 ½ years. I

could talk to you for DAYS! I hear you loud and clear and I can understand

everything you are saying. It is NOT fine- it is NOT the same and it is

HORRIBLE! It gets better… and worse… and better and worse… and you will

constantly be reminded of “for better or for worse!”. My husband was 30 when

he was diagnosed and we had a 1 ½ year old- we both work at the University

of Penn so we were lucky enough to have access to great Dr’s and after a

week in a local hospital we signed out AMA and went to HUP where he was

diagnosed. He later got onto a clinical trial at the NIH which has helped

him tremendously- but the ups and downs are never far away. The good days do

happen more often than not now- but he has 2 new hips from AVN…I’m sure they

taught you about that- and he has had his bursa removed…. He used all of

his time and had to go out on disability… after a year was able to go back

and THAT was such a nice surprise….

The depression and the sleeping is what makes things hard for me. We did

have a huge blessing and get pregnant with another son who will turn 2 Jan.

5th… but wow-

It’s nice to see another loving spouse here! I joined to try to learn more-

I had no idea and my wonderful husband is a man of VERY FEW words. Throw a

disease and depression and pain on that and you can imagine that I was

instructed to speak to family and friends- by HIM…. Because he just had

nothing to say.

Is your husband still working?

Bob is always happy to share info about the trial if you are interested. It

saved him! It is working for Stills patients…..

Feel free to email me any time- tcolligon@... for any OT things that

I may be able to help you with.

Hang in there- I am excited for 08’. I see so many positive changes in Bob

that I know it will be better for us. Even our personal life in our marriage

is better now than it has been in a long time- and all of these things

matter…. They really do.

Have a Happy New Year!!!!!

Hugs!

Theresa

[Guest guest]

Theresa,

Of course,I am on the other side of the fence. I am the not so

talkative male AOSD " victim " in this family. Luckily I am a little

more able to communicate with my family about my condition. My Mom

and Dad have passed on so I think discussing with my Dad would have

been more difficult than Mom. Two of my sisters are nurses and I am

a Clincal Lab Scientist by training, although work in IT now. That

gives me the opening of discussing the clinical aspects with them

while skirting the " emotional " items. I do jump in to those areas

when I am " down " when talking to them or sending emails. Cheryl

keeps her family aware. So far we have not had any " only arthritis "

comments. Although, there are always the friends with the, " I know

what you are going through, I have real bad arthritis in the knuckle

of my index finger on my left hand (or knee or big toe, or

whatever) " . I just kind of chuckle over those because I know they

are clueless at that point.

Some times I may keep things from my wife, Cheryl. Like when the

pain is really bad. But, I think she sees more than I think. We

have a 34 year old handicapped son living at home and dealing with

the emotions of that have been hard on her over the years. To this

day, even though she says otherwise, she blames herself for that.

Matt is pretty independent, but will never be on his own. He would

like to move into a group home, like some of his friends, but

openings are rare. We had so many plans that will never come to pass

and Stlls has just put another crimper into that. So, I try to keep

up a happy face and continue to be the optimist and give her as

little to worry about as I can. So, maybe I don't talk enough about

the emotional side of Stills to her. I do think she senses and

knows. After 36 years of marriage we are both pretty intuitive.

The first traumatic event that struck me hard (from a Manly man

perspective) was when I had to ask her to cut my steak for me. I

almost broke into tears. I mean, only little kids, and Matt,need

their food cut up for them.

By the way, we live over in the western end of Montgomery County.

What hospital did you go AMA from? My PCP and RD are both great out

here. My RD had her fellowship over at Jefferson and had seen a

number of AOSD patients while there.

If Bob can fill me in on any of his NIH studies, I would appreciate

it. He can use the address tied to my name here (

uncle_fuzz@... )

Take care and stay strong. We males do really need you in this fight.

Tom from PA

>

> I'm your girl!

>

> Living with it- dealing with it every day- and have been for 4 ½

years. I

> could talk to you for DAYS! I hear you loud and clear and I can

understand

> everything you are saying. It is NOT fine- it is NOT the same and

it is

> HORRIBLE! It gets better… and worse… and better and worse… and you

will

> constantly be reminded of " for better or for worse! " .