From one long time dx member, Melt

[Guest guest]

Jan you have my attention now. Since I'm going into the 26th year of

diagnoses and just found this group in the past year plus I would like to

explain a bit of what I have found from some of the longer diagnosed members

of this group. Let me say that everyone I have ever talked with has been

supportive, some like Tricia and others always here to love and support. I

have zero experience with the newer drugs so am not much help with side

effects of those. We always wish to support others, that is why I joined

this group. Many many years I've lived with this disease wishing I in any

small way could help others. But sometimes after many years living with

Still's we are a bit sad, tired, and spirit sore. Especially for those that

have ongoing sometimes worsening problems. We share among ourselves

privately but don't want to scare or have it intimidate newer members. We

are the warriors of this disease, and we continue to win! finding the ways

to have a good life and still be grateful. And we do continue to support

every member in any way we can. Please understand we have limped many

miles. Spoken out of love, Pattymelt

----- Original Message -----

From: <jannee@...>

> I have been sitting back reading and listening. Everyone just tells

> it like it is. But the ones who have been diagnosed the longest here

> seem to have the least to say. Kinda like a " Been there-Done that "

> attitude.

[Guest guest]

See now I went and changed the whole plate around by

" venting " the other day....but, I know that's okay.

Please remember, I am married to one of the most wonderful

men on this planet, *but,* he has PTSD (100%) so, there are

times when we have trouble encouraging each other. He has

his support group at the local VA medical center where he

talks (or not) about the war (usually Viet Nam) and why the

average person doesn't understand them. They meet in person

once a week.

So sometimes I just " feel the need " to vent, and although I

never stay depressed for more than a couple of days, there

are times this " dragon " *still* frustrates the living heck out

of me.

This is such a wonderful, special, loving, caring, sharing group!!!

Love to all of you!

~~tricia~~

-- From one long time dx member, Melt

Jan you have my attention now. Since I'm going into the 26th year of

diagnoses and just found this group in the past year plus I would like to

explain a bit of what I have found from some of the longer diagnosed members

of this group. Let me say that everyone I have ever talked with has been

supportive, some like Tricia and others always here to love and support. I

have zero experience with the newer drugs so am not much help with side

effects of those. We always wish to support others, that is why I joined

this group. Many many years I've lived with this disease wishing I in any

small way could help others. But sometimes after many years living with

Still's we are a bit sad, tired, and spirit sore. Especially for those that

have ongoing sometimes worsening problems. We share among ourselves

privately but don't want to scare or have it intimidate newer members. We

are the warriors of this disease, and we continue to win! finding the ways

to have a good life and still be grateful. And we do continue to support

every member in any way we can. Please understand we have limped many

miles. Spoken out of love, Pattymelt

----- Original Message -----

From: <jannee@...>

> I have been sitting back reading and listening. Everyone just tells

> it like it is. But the ones who have been diagnosed the longest here

> seem to have the least to say. Kinda like a " Been there-Done that "

> attitude.

[Guest guest]

Melt and ,

Time Out! I am not putting anyone down. I have seen for myself that

this is a very caring group. I, too, would have loved to have had

just one person to share what I was going through before I was dx.

All I am saying that some of the longer DX'd let the newer dx'd talk

out what is bothering them first and then advise or whatever is

needed, whether that is a shoulder or facts about meds.

The same way that the brochure about Still's is great! Trying to

explain this disease to a layman and what damage the " CURE " can

cause sounds almost like a cop out. I know! I am getting ready to

have the 2nd revision on my right hip implant (damage caused from

Pred). People asks what's wrong with your hip...NOW? As if I am

sitting here at home with my right leg straight up in the air and

curling my toes around to my left ear (this is not a pretty picture).

I do not want sympathy from anyone-just someone to understand that I

would do anything for strong, healthy bones. I am in total agreement

with you, I am glad that I found this site. I am glad that everyone

is supportive from newly DX'd to Old Pros.

I guess I will have to work on my communication skills. Big joke, I

worked for GTE for over 20 years.

[Guest guest]

Hi Jan,

I know this was sort of to Melt....but, as I have had

this disease " steady " since 1979..I figure I'm one of

the " old pros. " 1971 then remission. 1973, remission,

But, no more remissions since 1979.

Do you have a date set for the second rivison of your

right hip?? Please keep us posted when it is, etc.

When did you have the first and second ones done??

I also know what you mean about people. After all

of these years, many friends *Still* ask why I didn't

make it to this gathering or that etc. Thanks to this

organization (and Bob!) I now can hand them an

informative brochure, and let them read for themselves

what I have been *trying* to tell them for years! I'm

wondering sometimes if they listen or not. Also, many

of these same people I know, seem surprised if my

having a knee replacement, and both shoulders replaced

comes into the conversation for one reason or another.

It's like Hellllloooooo! Remember the cane I used

for years??? Remember the shoulder slings??? It's not

just our friends either...it's our relatives. I'm not sure

who is in their own little world...them..or us.

Your friend,

~~tricia~~

-- Re: From one long time dx member, Melt

Melt and ,

Time Out! I am not putting anyone down. I have seen for myself that

this is a very caring group. I, too, would have loved to have had

just one person to share what I was going through before I was dx.

All I am saying that some of the longer DX'd let the newer dx'd talk

out what is bothering them first and then advise or whatever is

needed, whether that is a shoulder or facts about meds.

The same way that the brochure about Still's is great! Trying to

explain this disease to a layman and what damage the " CURE " can

cause sounds almost like a cop out. I know! I am getting ready to

have the 2nd revision on my right hip implant (damage caused from

Pred). People asks what's wrong with your hip...NOW? As if I am

sitting here at home with my right leg straight up in the air and

curling my toes around to my left ear (this is not a pretty picture).

I do not want sympathy from anyone-just someone to understand that I

would do anything for strong, healthy bones. I am in total agreement

with you, I am glad that I found this site. I am glad that everyone

is supportive from newly DX'd to Old Pros.

I guess I will have to work on my communication skills. Big joke, I

worked for GTE for over 20 years.

[Guest guest]

Tricia,

I was DX'd with Still's in Nov. 1987. My first hip replacement was

Dec. 1988. My first revision was Dec. 1996. My second and hopefully

last one is scheduled for Jan 9, 2003. I changed the month this time

thinking maybe Dec. wasn't a good month for having THR.

My Rheumy says that I am in remission from Still's and have been for

some time but the Pred did big time damage to the joints.

My surgeon says that my thigh bone on the inside of my thigh

(where the implant goes)is right around 1/32 of an inch thick. So I

came home and got out my ruler to see how wide that was, not very.

I hope his hand is very steady and his drill doesn't jump and cut it

into. He wants to do shoulder replacement but I want to get the hip

working A-OK before I start on anything else.

[Guest guest]

Oh Jan,

So this *will* be the third time you have surgery on

that hip. I was diagnosed in 1987 also. Until then I

only saw our family doc who kept telling me I had

severe RA. I was (as you probably were) only on

steroids and NSAIDS and all the while damage was

being done to the joints. Who knew??

Good idea to wait until after the holidays. Hopefully

the surgeon won't be in a big hurry then. Also, let's

hope this revision lasts much longer than the last one!

I am thrilled to to read you are in remission from the

Stills Disease!!!

I had my first shoulder replacement done in 1989, and

the surgeon took updated xrays October of this year,

and it is still looking good.

I am not a medical expert, but from personal experience,

I would agree to get the hip done and *then* the shoulder.

No, I don't have a hip replacement, but I had my choice

to get the right knee or left shoulder done in 1989. I had

the knee done first, then in 2000 the left shoulder. It was

the right choice.

The people being diagnosed with Stills nowadays have

a better chance of saving their joints than some of us.

There are the newer meds, and just the fact that most

are being diagnosed quite soon and the disease is being

treated agressivly is also in their favor.

Please keep in touch, we'd like to know how this hip

revison goes. January 9th isn't far off.

Welcome to the world of " bionics! "

Your friend,

~~tricia~~

-- Re: From one long time dx member, Melt

Tricia,

I was DX'd with Still's in Nov. 1987. My first hip replacement was

Dec. 1988. My first revision was Dec. 1996. My second and hopefully

last one is scheduled for Jan 9, 2003. I changed the month this time

thinking maybe Dec. wasn't a good month for having THR.

My Rheumy says that I am in remission from Still's and have been for

some time but the Pred did big time damage to the joints.

My surgeon says that my thigh bone on the inside of my thigh

(where the implant goes)is right around 1/32 of an inch thick. So I

came home and got out my ruler to see how wide that was, not very.

I hope his hand is very steady and his drill doesn't jump and cut it

into. He wants to do shoulder replacement but I want to get the hip

working A-OK before I start on anything else.

[Guest guest]

Jan, I apologise for being sensative today. I have not been feeling

well and must surely have read your intentions wrong. Forgive me

please. I do wish you a final and successful surgery on your hip and

know it must be very disapointing to have to do it again. I have

both THR's and my right knee. Once again, I hope I didn't upset

you. Be well, Pattymelt

> Melt and ,

>

> Time Out! I am not putting anyone down.

[Guest guest]

Melt,

No Prob. I had just got back from donating my last pint of blood for

my surgery. Well, it wasn't actually my LAST pint of blood just the

last pint I needed to donate. So I was kinda BLAH!

So, Thanks for being the " Pit Bull " of the group. No offense meant!

Just mean that you were the group's protector yesterday.

Here's part of an old Irish Blessing for you...

May you have warm words on a cold evening,

A full moon on a dark night,

And the road downhill all the way to your door.

Your Friend,

Jan

[Guest guest]

Tricia, honey! You can vent right here any day! (no matter how loving your

husband is!)

Love,

[Guest guest]

Tricia, honey! You can vent right here any day! (no matter how loving your

husband is!)

Love,