update

May 13, 2005

Dear Kelley;

Congratulations for having the courage to make this tough decision. I had to

make the same one not long ago. I collapsed at work....not fun. I wish you the

best. God bless you and your supportive family. Many Blessings along the way!!

Larry B. from NC

Kelley Knight wrote:

Hi all.. I wanted to touch base with everyone and let you know that the

dragon is fighting his way back. I went to Denver on Tuesday to see the Dr

and between him, mom and myself we decided that it was work. They are

overworking me and not letting me ease back into the schedule, even though I

was only per diem and only guaranteed 18hrs a week (which I was totally fine

with) they was having me scheduled for 35 to 40 hours a week anywhere from 6

to 12hr shifts daily. They wouldn't give me a position that was 4hrs or

less to ease me back into the schedule, but (are ya ready) wouldn't give me

part time or full time position because they wanted to ease me back into the

schedule.. Well anyway's, to make a long story short, I called and quiet

yesterday as soon as I got back from Denver. I am going to work at getting

this flare to go away, before it becomes to bad. I will work with mom and

my oldest brother in the family business, which is roofing, but I will help

mom with the office work.. Which she is happy about, and she said she will

give me a break and not hassle me when I " call out sick " because of the pain

I am in lol.. I am going to be okay and this I know. So right now I am not

going to be lowering any of my meds, thankfully he didn't put me back on the

pred again.. I have to go back in a month and see how I am doing. I am

going to concentrate on me and helping out here when I can, since I have no

insurance we did fill out the application for Humira to give assistance for

that one.. I will keep you all updated and keep in better touch.. Now that I

am not working, I will do better with chats hehehe.. I miss you guys and

love you all lots.. Thank you..

Love and gentle hugs

Kelley in Colorado

June 27, 2005

WELCOME HOME SUPERMAN !!!!!!!

It is good to have you back in the states safe and sound. I can

remember how darn good it used to feel to be to get back from a

deployment, especially if they were shootin at me.

Dan

> Hi everyone,

>

> I am back from the war (again) and doing pretty well. I have some

residual

> pain from running on damaged joints and lifting weights with them

as well,

> but no flares since my initial one. The doc is going to fix my

shoulders

June 27, 2005

Superman,

Hi, Lois Lane here. As a reporter, I feel the need to let you know that we will

NEED your presence at the Vegas Conference this year, if you can make it. LOL It

is October 9 - 11 (Sun - Tues) and we are staying at the Orleans Casino again .

You can find information about the conference at www.stillsdisase.org and click

on the link for Conference. Hope to see you there. I will be there with bells

on, literally. I got my silly hat and mask today for the meet and greet on

Sunday. Last time I went as the Mystery Guest and made everyone guess who I was.

Nobody knew I was coming. This year, I am asking all to join the festivities by

wearing a silly hat so we can have one of our cyber parties for real. We need to

get ole Dan to wear his alien cap made from the metal colunder. LOL Wouldn't

that be a hoot? Wonder if his picture is still online? Anyway, so happy to hear

you are back and safe and sound. My grand daughter is 4 in August and the doc

says my daughter is going to burst with twin

boys any day. She is not due till Sept 7 but he says she could have them any

day since she is now 28 weeks. It would be fun if you can make it to Vegas for

even 1 day. Missed you a lot while you were out saving the rest of the world. I

made it to Empress status while you were away. LOL Recover quickly from those

shoulder repairs. Sort of hard to hold the world at bay with bad shoulders.

Smiles, Lois

(AKA Caroline, Oldtimer Silligans will remember the Lois Lane of yesteryear. LOL

)

Empress of CUS (Chronically Unique Syndrome)

Kent wrote:

Hi everyone,

I am back from the war (again) and doing pretty well. I have some residual

pain from running on damaged joints and lifting weights with them as well,

but no flares since my initial one. The doc is going to fix my shoulders

Right on this month and left one next month. He said once he tightens the

joints up, I should be good as new.

I will be in Jersey for vacation at the end of next month. The twins are

doing well, they will be 3 in august. I missed them terribly while I was

away. I hope you are all doing well and fighting the good fight. There is

light at the end of the tunnel for all of you....I know it!!!

Superman

(Beautiful Southern Oregon, USA)

We may not be able to change the direction of the wind, but we can adjust our

sails.

May you have enough happiness to make you kind, enough trials to make you

strong, enough sorrow to keep you human, enough hope to make you happy.

---------------------------------

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

June 28, 2005

I am going to try and make the conference this year. I'd really like to

meet you in person.

Twins are rough the first 3 months or so. Things start to get easier and

then before you know it, they are 2. I missed half of their life being

away, but the half I've been around for.....I'd do anything for them. Hard

to explain, but you have childern so I am sure you understand how I feel.

The Vegas thing sounds fun. I am going to look into my cycle and see if I

can make it. The shoulders are just worn out, over use and the initial

flare didn't help matters any. I expect to be ready to train and work hard

again by OCT or so.

Well lois, I am going to have to depend on the rest of the super heroes to

save the world while I heal, but I am sure they can handle it..... :-)

Hoep to hear from you again soon

SM

>

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: Re: Update

>Date: Mon, 27 Jun 2005 18:33:13 -0700 (PDT)

>

>Superman,

>

>Hi, Lois Lane here. As a reporter, I feel the need to let you know that we

>will NEED your presence at the Vegas Conference this year, if you can make

>it. LOL It is October 9 - 11 (Sun - Tues) and we are staying at the Orleans

>Casino again . You can find information about the conference at

>www.stillsdisase.org and click on the link for Conference. Hope to see you

>there. I will be there with bells on, literally. I got my silly hat and

>mask today for the meet and greet on Sunday. Last time I went as the

>Mystery Guest and made everyone guess who I was. Nobody knew I was coming.

>This year, I am asking all to join the festivities by wearing a silly hat

>so we can have one of our cyber parties for real. We need to get ole Dan to

>wear his alien cap made from the metal colunder. LOL Wouldn't that be a

>hoot? Wonder if his picture is still online? Anyway, so happy to hear you

>are back and safe and sound. My grand daughter is 4 in August and the doc

>says my daughter is going to burst with twin

> boys any day. She is not due till Sept 7 but he says she could have them

>any day since she is now 28 weeks. It would be fun if you can make it to

>Vegas for even 1 day. Missed you a lot while you were out saving the rest

>of the world. I made it to Empress status while you were away. LOL Recover

>quickly from those shoulder repairs. Sort of hard to hold the world at bay

>with bad shoulders.

>

>Smiles, Lois

>(AKA Caroline, Oldtimer Silligans will remember the Lois Lane of

>yesteryear. LOL )

>Empress of CUS (Chronically Unique Syndrome)

>

> Kent wrote:

>Hi everyone,

>

>I am back from the war (again) and doing pretty well. I have some residual

>pain from running on damaged joints and lifting weights with them as well,

>but no flares since my initial one. The doc is going to fix my shoulders

>Right on this month and left one next month. He said once he tightens the

>joints up, I should be good as new.

>

>I will be in Jersey for vacation at the end of next month. The twins are

>doing well, they will be 3 in august. I missed them terribly while I was

>away. I hope you are all doing well and fighting the good fight. There is

>light at the end of the tunnel for all of you....I know it!!!

>

>Superman

>

>(Beautiful Southern Oregon, USA)

>

>We may not be able to change the direction of the wind, but we can adjust

>our sails.

>

>May you have enough happiness to make you kind, enough trials to make you

>strong, enough sorrow to keep you human, enough hope to make you happy.

>

>---------------------------------

>Yahoo! Sports

> Rekindle the Rivalries. Sign up for Fantasy Football

>

June 28, 2005

Thanks Dan....it is good to be home. The shooting does suck, but you get

use to it....that's the scary part....when it begins to feel normal.....

take care of yourself and keep healthy

SM

>

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: Re: Update

>Date: Mon, 27 Jun 2005 20:00:48 -0000

>

>WELCOME HOME SUPERMAN !!!!!!!

>

>It is good to have you back in the states safe and sound. I can

>remember how darn good it used to feel to be to get back from a

>deployment, especially if they were shootin at me.

>

>Dan

>

> > Hi everyone,

> >

> > I am back from the war (again) and doing pretty well. I have some

>residual

> > pain from running on damaged joints and lifting weights with them

>as well,

> > but no flares since my initial one. The doc is going to fix my

>shoulders

>

_________________________________________________________________

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August 11, 2005

Hey Girl!

I've been wondering about you.....I tell you, being in NC and not even a

call....I see how it is!!

Ha Ha.....I'm glad you are doing OK and your husband is coming home soon...My

son is going to have to go to the dentist at Seymour ....please give me

the names of your relations and i'll have him say hey from us!!

Glad you are back!!

God Bless!!

Larry B. from western NC

Jay wrote:

Hey friends, this is the first I've checked in a few days, but I couldnt send

out any mail for 3 weeks. I was in NC and my laptop server wont let me send

outgoing mail. Im still trying to catch up. I didnt intend to spend 3 weeks in

NC, but the boys stayed with their dad so I just took advantage of the time and

stayed there as long as I could. I saw my rheumy. he put me on Avinza(brand

name) which is morphine slow release, it kept me wide awake for 2 days straight,

then I could only get a few hours sleep, I was also on percocet for

breakthrough pain. Im better now, but he switched me to the duragesic patches,

Im picking them up tomorrow. but my pain is alot better. Of course they are

talking hip replacement soon. I have to see a surgeon first but Im so scared to

have it done. But Im also scared of being on heavy duty pain meds for a long

time.

Well just 3 more weeks until my hubby is home, Im so excited!!!! It's just for

10 days and then he has to go to Alabama for 2 months but after that he's home

for good for at least a year. I just read tonight that they are closing the

base in Germany where they have the chinooks, in 2007 so I hope that they move

them somewhere else in Germany so we can still go. Im gonna be so mad if they

leave Germany all together and I never get to live there. If I had known they

were planning to close it I would have told him to put in for germany now.

But it was a good break for me to be away. I boarded my big bassett hound,

since I thought I was for 4 days originally and I wanted to drive my convertable

and there was no room for her. Well I spent a fortune in boarding fees after 3

weeks. I board with someone that keeps them in her home so they run free and go

outdoors and play and not locked in a cage 24/7. So I didnt feel the need to

rush home cause I knew she was in a good place with other dogs playing and such.

I took my little dachshund with me and the cat. But it was a tight fit in the

car with just them two in the front seat. I had a blast driving on the

interstate glad I didnt get caught speeding. I probably would have went

straight to jail.

Im going to read some of the old mail and try to get caught up. I get about 100

spams a day so I think Im going to change my email address again. Love you

guys Jen

October 12, 2005

Oh and I forgot to mention that my Blood pressure was back to normal at the

visit today. So I was happy about that.

Carey

October 13, 2005

That's too bad, Carey - the fact that you have to pay out so much

over the accident. I can empathise, having been hit on 2 occasions by

drivers with no insurance. It's not fair that we have to pay when

others aren't adequately covered.

I hope you feel better soon.

Love

C2

> Hi All!

>

> Well, I have not been doing so well for the past couple of days. I

> have been

> waking up for 4 straight nights now, soaking wet with sweat and

> running a

> fever. Always around the same time. And during the day it goes

> away. I have

> been trying to ignore this, but its not working. Since last week I

> have had that

> feeling of the " flu " . I'm sure you all know what I'm talking about.

> Anyways.....I had an appointment with my RD today. And he is

> concerned to hear about

> the fevers. I haven't experienced them since I started Remicade.

> He has set

> me up for an appointment next week to run tests on my joints and

> blood in the

> office. Something to do with Remicade. Has any of the Remicade

> users done

> this? Supposed to show how well the Remicade is working in my

> body.??? Says the

> results of the tests given add up to a score. And from that score

> he can tell

> how well the Remicade is really working in my body. My C reactive

> protein

> levels are still high. I'm just getting so frustrated!!!!! Because

> I know that

> if he decides to switch me off of Remicade, I'm not sure if my

> insurance

> will pay for another drug. I went through hell to get on Remicade.

> I am so

> stressed at the moment. I had to got to court today for the

> accident I was in the

> other week. And the other party did not show. The judge put a

> warrant out for

> him. But I am basically screwed because they had a Mexican drivers

> license

> and the insurance card they gave was a fraud. So now We are stuck

> paying for

> the damages done to my car, well our deductible $500.00. And also

> the medical

> part of it, our deductible for that. And our insurance Company

> pays only 80%

> up to $5000.00. Its just not fair! I know this is why I am

> flaring. I'm sorry

> for rambling on. I just needed to vent.

>

> I hope everyone who went to Vegas had a wonderful safe trip.

> Please send

> pics ASAP!!!

>

> Love,

> Carey

>

November 20, 2005

Hello Danni. I saw your post and I know all this is overwhelming. I am

hoping that all turns out well and that you feel better very soon. Let me know

what happens. I had a liver biopsy cause my enzymes were elevated for over a

year. It did not hurt..it feels weird like a punch or nudge...it didn't hurt.

My results showed some inflammation...either from being a chub..or simply from

having Stills disease. Whatever let us know what happens..please....and try

to have a good day Hugs Liz

November 20, 2005

Hello Danni. I saw your post and I know all this is overwhelming. I am

hoping that all turns out well and that you feel better very soon. Let me know

what happens. I had a liver biopsy cause my enzymes were elevated for over a

year. It did not hurt..it feels weird like a punch or nudge...it didn't hurt.

My results showed some inflammation...either from being a chub..or simply from

having Stills disease. Whatever let us know what happens..please....and try

to have a good day Hugs Liz

November 21, 2005

Liz,

Thanks for helping me. I am worried about having the liver biopsy because I

have VonWillebrands disease too. It is a blood cloting problem that causes my

blood not to clot so I bleed easy. The doctor told me that the biopsy can be

dangerous for me because there is a chance I will bleed internally. I am glad to

know you did not have much discomfort when you had it done. How long ago was it

done? how high were your liver functions?? my liver funtions have gone up since

I was hospitalized in August. They are over 100. My doctor told me if I do not

have the biopsy then he would stop my treatment for still's. He told me I will

have to stop MTX ,predisone and remicade. I hope that does not happen. I am not

able to tolerate the pain and swelling on the drugs let alone stopping them. I

am just scared of the results. Thanks again

Love,

Danni

From: lizdaly101@...

To: Stillsdisease

Sent: Sun, 20 Nov 2005 14:06:40 EST

Subject: Re: update

Hello Danni. I saw your post and I know all this is overwhelming. I am

hoping that all turns out well and that you feel better very soon. Let me know

what happens. I had a liver biopsy cause my enzymes were elevated for over a

year. It did not hurt..it feels weird like a punch or nudge...it didn't hurt.

My results showed some inflammation...either from being a chub..or simply from

having Stills disease. Whatever let us know what happens..please....and try

to have a good day Hugs Liz

November 21, 2005

Danni,

Wanted to let you know that I have also had a liver biopsy. They did it

outpatient, was able to go home that afternoon. I was a little sore, but healed

fairly quickly.

I'll be praying for you, Danni... I know you've had a rough time of it, just

know that all of us here completely relate, esp. me. Hang tough and keep

fighting, that's the ticket!

Hugs to you,

Gail

Blondedolphin172@... wrote: