This is a test to see if this is working properly? Now what do we think about it? The quick brown fox jumped over the lazy dog's back 1234567890 etc.
It appears to be working but the spelling still isn't working right as I had to correct quite a few words after I got done and before I sent it.
This is a test and I see that it is working!
Hope this works for others, do type something if you are sucessful checking in.
My daughter has just been diagnosed with Stills at 19 months old. I am looking to find some answers or other peoples experiences with this disease.
looking to get some info. My baby just got diagnosed...
what the hell is this chatroom....awful
My father was diagnosed about 14 years ago with Stills disease. In the last 2 weeks he has been having diarrhea off and on. is this one of the symptoms of having stills disease progressing?
Hope someone joins me soon.....
hope someone joins me soon!
Hi, have you come to chat?
What time is it there? I get so confused with 6pm PT and what it is here in ET
i am skipping the shift key if you do not mind
I wuz putting on nailpolish so I'd be purty
one hand of course...it's purty tricky
what does jake thing of the smell
I thought those hands were only good for mashing tomatoes
and nope no one else showed up
How is your liver. Last I heard they saw a spot
I use clear nailpolish so it doesn't show when I go over the edges
or til I fall on my face whichever comes first
spot on liver could be from the gall bladder
hmmmm? missing some of my sentences
might be if I wasn't wiped all the time, gallstones don't make you so wobbly
no flags, no funny faces..this chatroom sucks LOl
not enough and the other you could look a the profile and see who was whom
I know, apparently this is only temporary
Keeping you in my thoghts and prayers.
WHEN we get the site up to date
worry about you off and on
my EMG is to see if my finger numbness and pain is Carpel Funnel (he he heee) or never pain
Then what do you do? suffer thru it or drug it
we're SO lucky we get to bombard our body's with more drugs
I kind of think that it might be my kidleys
we had been talking about the emg for about a year, but she was worried about having needles stuck in me and bleeding all over the place
Yeah, nothing you need to go through if you can aviod it
last labs showed improvement in function.
I know, and if you had 2 you'd give me one
I do not bleed as long as I used to.
Of course, for them to take it out i would need approval from 5 or doctors
I worry about jinxing things, but you are on the up side..infinitey perhaps but hanging in
BRB.....have to put the kid to bed. BTW - cheryl is back home safe and sound.
cheryl step mom not doing well,mentally. Mornings fine then lunch confused and actaully violent at times. Cheryls dad really will not be able to handle her at home. Not safe for either. She wanders at all hours when home and she is pretty strong when fiesty
good grief..my gf hubby has periods they call sundowning..and of course he gets pretty bad at that time of night
bad when she does not even recognize him. part of day she thinks she is in one of the resaurants sh worked in for years
so will they make arrangements for a care facility
I do know that once they got Ben's meds figured out he was better
must be very difficult for Cheryl
right now 30 day "rehab" but looks like most likely permanent. cheryl says very nice place
very and all the while dealing with it there, worried about me.
Howdy all you fine people
took pity on me you both did..LOL
Yea I didn't have to race tonight so I decided to come say hello
I think maybe we should move it to Thursday
it might make a difference
Might be a good idea. Do you have a reading on who could show on Thursdays?
how come YOUR name is in Red sir robert?
there have been a few that have said they might be able to make it. Melly and I have "talked" about it
I think I'm listed as admin or something. I'm not sure
I wwas in the Docs office from 3pm today until 515pm
what did he tell you when you got to see him?
Now I have to call the Cardiologist tomorrow and make appointment so I can have another Cardiac Cath
he said, gotta go my wife has dinner ready lol
I keep losing stuff and discovered i can get it back by just clicking the chat button again
ok who can see stuff now?
hit the Stills chat link again when that happens
Ms Kitty are still with usins
yup I had to click on chat again
or is it who is Stills there
so another cardiac catheter
Yeppers and I aint happy at all about it. As a matter of fact im scared as hell about it
well, i gotta go. cheryl is heading to bed now after her lonely 6 hour drive in the pouring rain
That's a freakin' bummer, what are they hoping to figure out?
nighters sweetie give my best to Cheryl, and a hi five for Matty and a pet for pooch
well, at least my heart seems in good shape. you old timers are just falling apart, aren't you?
They know there are some more blockages and they are hoping to open them with stents
so it would seem smartass
take care bob and good l\uck with the cath
how have you been managing with the blockages dearheart? Haning in?
Really having a lot of problems with angina pain in the chest and the Pulmonary Fibrosis doesn't help at all
really having trouble breathing
Trying to tough it out but you know how that is
you've been having a tough time of it. My mom had angina and it was hard to see her struggling with it, so I know how difficult it must be for you. Then I'm sure mom is worried sick about you
Yea she tries her best to help but not much she can do.
but you can only tough it out so much...where's your 02 at?
Got it at 3liters now trying to keep from going any higher for now but will if i have to
you have to do what you need to, to be comfortable
When I get out of the shower and take my O2 level it's down in the low 70s until I get the oxygen back on and sit for a while
It was happening when I would walk down the hall to go to bed and then get in bed I would use my pulse oximiter and the O2 level would be down in the 80s. I finally had to buy a wedge type pillow and sleep flat on my back with the wedge under my head
Mom had one of those, they work well, but it's just so difficult to get through every day
Yeppers it sure is but that's the way it is I guess? Got to make the best of it?
no ****** choice...the doc tells me as well as the gall stones and the liver, my kidneys may be part of my being exhausted all the time
Sorry didn't mean to rain on the parade! Just feeling a little bit down, lol.
I can't believe I got zapped..the word I used was b l o o d y
I know what he means and that is a good possibility. That's enough to cause anyone to be exhausted. That takes a lot out of you.
listen to me my dear man, I know how tough it is when you need to have a stiff upper lip for mom
you can tell it like it is to me
sometimes we need to tell it like it is
You got zapped for bloody
We have a strict chat room, lol?
See you made me laugh anyway.
well we'd be in big trouble with the Brits that's one of their favourite words
Yes I know and one of mine also
good, I love to see you laugh
well, Jakers needs to pee, so I better get him out before he springs a leak. I love you, you know! Always have, always will!
Well Dearest me thinks I will get off of here and curl up with my book for another half hour and then hit the bed. I loved talking to you. I will try to get on more often. Maybe Thursday would be better maybe you can try it
Love You also and give jakers that extra pat and little pat for me. Take care
Hi from Shelly in Philadelphia
I have never joined in a Chat before - is anyone there? Shelly
@Guest_373: hi from Shelly - I have never been in a Chat before? can you see my entry?
if you take too long to reply you have to hit stills chat again
He's going to put me to sleep, you think that will be better and less painful Gail?
Hey Cat, good to see you are you home tonight?
Sure... I take a low dose of Valium about an hour before, helps calm me so I dont get nervous. have you r tried PT?
yes I am just got sprung around noon
Thank you Cat, good to know
oh yes, many times over the years
Urggghh... now I am not seeing my posts...
it worked to hit stills chat on the left column came right up
yes you have to re up the chat
hit stills chat on the left Gail
I was hitting delete to refresh it
Ladies, have to sign off, love to all, and Cat take care... Melly you too, and I will send you a private email about my lower back treatments...
Cat, I'll let you go for the night, call tomorrow night if you can ok?
Till soon with love and hgus
Hi there, who am I visiting with tonight?
besides scared...aww baby
oh yea, been a most busy week
Hi from Shelly in Philadelphia
Hi Shelly how are you tonight?
WOW it works - this is the first time I've been in a chat room.
I worked today, but I was tired, was good to get home
Shelly if we get cut off remember to click the still's chat on the left again K?
we have several members who live in your area
I work 4 days a week and am off every Friday. My day begins at 4:30am and ends at 3pm.....long hours.
yes philly is very popular, lol
I bet work was hard the first being back Cat
I tried to get us together but it did not work out.
I'm going to try again in the spring.
it was, and I may have to take another week off
so shelly how long have you had still's?
You should dear, You really need the rest. Did you get my message about the yogurt?
Officially since April 2009.....at age 60
I know that I am one of the lucky ones - it only took 3 weeks for the doctors to determine what I had -
Late onset, how are you doing now?
I think it's harder as we are older personally
I've been on predisone - started at 40mg and lower doseages every few months - currently on 3mg.
Yea for you Shelly! That is wonderful news
I work for the Navy - 4 long days and only major problem is that it affected my right hip. I live in a rance house so life is easy - I can still drive and thanks to QVC shopping is no problem.
Girls, excuse me for a minute, I need some meds and to get up a minute
Based on what I've seen in other posts - air travel does not seem to be a problem but my doctor has forbidden it telling me that it can bring on an attack? He also does not allow me to travel by train. I am allowed bus or car travel but only 2 hours per day ....
The times I flew it was after mine was in remission but I did get inflammation when traveling too far without breaks
Since I am one of the older gals and no idea how long I really had this - wondering if anyone in the group who had a child - does that child have health issues? I have a 36 year old daughter who has M.S.
I have not had an attack in over a year and my labs are perfect but doctor will not use term remission....implies that with Stills you have it always...
One of my granddaughters has a partial chromasoam deletion which is now possibly linked the research says
remission for me means abcense of active fevers, inflammation and labs are good for an extended period of time without DMards, just anti-inflammatory meds.
so I guess as long as he keeps me on Predisone I cannot consider myself in remission.
Before I forget - the shirt that I ordered is wonderful - very soft and comfortable.
That doesnt mean there won't be a day, Oh good I'm so glad
Guess it is just the two of us on this evening.
We love ours too! did you get a pin Shelly? can't remember. They are so nice
Did I put it on the shirt?
You sent it with the shirt. I wear them separatly
ok, lol sometimes the memory just isn't there this year.
I really miss spell check -
well we don't ever worry about it on the group
Guess that is not a feature in Chat
If I remember you live in Calif?
yes, in the mountains above palm springs if you know that area
it's beautiful here a very small town
I only know San Diego - worked there in the 80s at the Naval base
oh I grew up in Oceanside
I've always lived in Philly - very large city
I love the city of San Diego my favorite but never been to the north eastern cities
I have friends in Mountain View CA who want us to visit but I explained out of the question
yes, with the travel restrictions, you will have a time though I just know it when you can
Going to sign off - my husband just came home from work.
lol, mine came in too, great to talk
In Mountain view - friends
Is it too late to join the party
Hi From Shelly in Philadelphia
First it came on as Guest 989 - then I deleted it and put in my name....is that correct?
InPhilly it is cold - around 40 so I'm sitting in front of PC is a flannel robe - very comfortable.
we have snow here....but after all, it's BC Canada...land of the Rockies
I've been to Canada- but not that far west ... only to Niagara Falls CN. Enjoyed the falls - rode the Maid of the Mist
ahh something I've always wanted to do..exciting and beautiful I imagine
It was in the spring - flowers were lovely and enjoyed touring that area.
I've seen numerous emails from you .... last week was first time I tried to do chat....my children brought me a PC so that I can do email and stuff from home ....not just from work
I know that Holidays are different here than Canada...next Thursday 24th is Thanksgiving....so will not be on chat
Have you ever tried to coordinate a chat on a Sunday during a time that those in England can participate too?
I'd like to see more people use chat, it's wonderful when you get to chat in real time
when we had a different chat set up, we were very busy, lots of people, from all over, it was uplifting and informative
I know that I am one of the lucky ones. I've had Stills since 4/2009. I still function with the exception of needing to walk with a cane..working 4 days a week .... I feel bad when I read the illnesses of others.
Still's can really run the gamut of levels of disease activity
Looks like it is just 2 of us.
mine is in semi remsission, but I've been left with alot of joint destruction
You've had it for a while - correct?
had it since '89..diagnosed in '94
I was diagnosed 3 weeks after being in hospital 6 days - fevers/sweats.... was out of work 3 months till predisone kicked in.....
ahh the drug we love to hate...prednisone has saved my life a couple of times
I've been on it steady - original dosage 40mg...down to 3mg.
SD is being diagnosed much sooner than some of us oldtimers
I never heard of it....before.
when I was dx there was nothing on SD but a small website
that was started by our Founder Tom Kufahl. If it hadn't been for him and the other 25 people in the group I would have blown my brains out
I have copies of the Brochure and give them out to every doctor/dentist as they know little about it. I'm told in med school it is covered all of 15 minutes for those not going into ruhmy.
That's one of the reasons we have the brochures
to make our members lives a little bit easier
I carry one on me at all times/next to my living will.
signing off for the night....it is 9:28PM and I start my day at 4:30AM Monday through thursday/work 6AM to 2:30PM.
even now, after all these years, you get blank looks when you say Stills Disease....
thanks for chat and info...bye
though when I was in the hospital a couple of weeks ago, one of the docs knew what it was
the rest of the nurses and docs went to the compter and found our website
Kitty having fun with the faces or fell asleep at the buttons, lol?
I think that was from last week?
oh, lol his shelly how are u tonight?
I almost lost track of the time....was watching On Demand and knitting a baby sweater
i used to hold conversations with myself while waiting for others in chat years ago, lol
for a special baby not that all aren't?
I used to amuse myself with the emoticons
My next door neighbor is expecting girl in Feb and I'm an avid knitter...been knitting over 50 years.
Question - today email stated that you updated Cat data. Where would I find that?
I wont be here for long, my Bp is very low. I see the Internist in the am
Here on this site under profiles and Cat's name
Melly- I did find yours from 2008
Cat's should be there too or under the his/herstory section. You see I should have explained there are two sections.
Silly that andd we want to combine them I think
Cat - hope you are feeling better
thank you so much cat, I'm lame
that would be a good idea Melly
very confusing now don't you think?
Did I mis understand or didn't you indicate that Profiles and Histories were going to be merged?
No and I did submit info about 6 months ago.
Then if that is the info you would like used I have it and will use that if you want.
Some write up their stories as well as to diagnoses and since. etc.
It has been so long I forgot what I said. Could you send it back to me to see if I need to update data?
gotta run U 2.....be well, warm hugs to you both!
Yes, will you send me an email asking for it again? lol. Im in pain tonight and guarantee I won't remember.
Signing off - have to be up early tomorrow.... I too have DR appt Rhym.
good luck and have a good night
hi all there are a load of us on the facebook support group 'adult onset stills disease support' if any of you'd like to join us
k mifsud x
hello... my first time on chat
I guess I'll check back....
Greetings, you have to keep refreshing your page by clicking on the chat link on the left
not as good as the old one we had, this is just an interim chatroom
I see... that's cool... I like it. So how are you?
you have to keep refreshing the page by clicking on the stills chat
ahhhh... I see what your saying..
Glad to hear that... I'm doing ok I guess..
wow.. cold up there I bet
Can I ask you how long you have Still's?
but I believe I had it since the 80's
wow.. God Bless you.. is it juv. stills?
I've had it since spring of 2010
so how many years have you been dealing with the Dragon?
hah you beat me to it LOL
at least I can still type fast
how log before your diagnosis?
10 days in one hosp.. then transferred to Johns Hopkins for another 8 days.. with no diagnosis
Went to a Rheumy who diagnosed me with adult Still's
the diagnosis is being made faster these days
and happily so. I thu old days...it took years
Lot's of tests... over 100 tests.. wow years? That's crazy
I was in the ER's so often it was ridiculous..first it was a wry neck, then my back..of course we realize now that it was systemic
wow... I bet that was tough... God Bless you
have you joined the mailing list?
supportive, uplifting, and informative
yeah.. I get them bunched into a bundle..
Yeah I made it in whoopee!
Howdy and evening Ms Kitty
Yeppers made by the skin of my chinny chin chin
been reading about interleukin-1 receptor antagonist
Sounds like the detective novel ive been reaeding
It's the stuff of ledgend
well as I was telling Lance no snow...maybe tonight..but right now no snow
I was hoping there would be a lot more people here tonight
Now Kitty you know we don't allow four letter words in our chat room, lol
can't even say b.l.o.o.d.y.
We had thsat rain about three days ago and sent it up to Ya'll
yeah you did... 2-3inches in 24hrs.. lol
bob are you east or west side of Fla
I'm up in the panhandle in Panama City way out west side
ohhh... I drove across Rt. 10 once.. across that long bridge.. I liked it
We are about 100 east of the big long bridge
Jacksonville is near there right?
No, Jacksonville is on the east coast
ohhhh.. I see.. I bet you see the Blue Angles
we are between Tallahassee and Pensacola
How about the Flora-Bama?
We are closer to the Aiur Force base
I see... sounds cold for Fla...
It is but it is only for short periods
it just started getting cold here... sucks
I know I used to live up there. Was born and raised near Valley Forge
I know Valley Forge.. I used to shoot in their pool torni.. ok.. happy Jakers...
Left there when I was 17. I figured that?
Probably uncrossed his legs now
exactly..and he gets treats for coming in faster
business is business.. lol
Hey Kitty would you believe that I have had more requests for Brochures since we put that notice to the left of this chat room than I have almost all year??
Ahhhh your that Bob... Thank you for sending me mine...
He should get a saucer of scotch for that. OH your quite welcome
I just sent some to Bangladesh
That is amazing! you guys are both awesome.. I'm so glad I found
well we ARE International after all
how many members are there?
Yea my postal bill today was $28.90, lol. Had a bunch for overseas, England Scotland Bangladesh and New Zealand plus staeside
what do you think Bob, about 800 or so, but people come and go. They get better and they stop posting, and we tell them we need to hear they're doing well. It gives those that aren't doing too well
If I get better I promise to stick around...
ccibabe do you have a question or comment just jump on in here. Type down below in the box and hit enter
and you have to refresh by clicking on the "stills" chat
She might be having trouble with the chat box?
Bob thanks again for the brochures... they have helped me a bunch explaining my situation to friends and family
anyhoo, jump right in whenever you have a mind to!
Lance where do you live in MD
Arbutus - just outside of Baltimore City near UMBC
I had to refresh. Guess I was getting stale
listen guys I'm pooped. Still trying to get stronger..so if you will excuse me...I'll say good night...Lnce it was a pleasure to "meet" you
you to Cat! Get some rest.. talk again soon
I hope so Lance..nite Hunny
OK Kitty take care Love Ya
I'm surprised... more people are not on here?
Me also. I used to into Baltimore a bit. I love Oysters and that's the place to get them
Do you like crabs... I'm a crabber
Now here in FL I live about 30 miles from one of the Oyster capitals of the world and I love it also
I love Crabs also. My brother is the Crab man though.
Before I got sick... I was a mad crabber...
ccibabe did you fihgure it out yet?
still got my boat and all the gear
I used to do all kinds of sports but I can't do anything anymore.
I"m sorry to hear that.. I'm also wondering if my past has also played a part in my condition
That is really hard to say but I personally don't think so. Hi ccibabe. how are you tonight
Not one of my better nights, but I'm ok
ccibabe if you happen to think you are not getting the conversations or don't think you are sending go back to the link and click on the stills chat and it will refresh it
It's ok. I'm just achy. The nights haven't been that great for about a week now. Winter is not my favorite season
Thanks Bob. Good to know!
I hear ya.. cold weather stinks I agree...
I just had to do that. It was hung up. I'm doing as good as can be expected for an old man, lol
I'm no spring chicken! LOL
But I don't think your as old as I am, lol
Dinner is on the table. See you guys later!
Take care talk to ya later
Thanks. If you guys are still here after I eat, I'll talk to you then
are there usually more people on here??
I don't know why I said that? I am going to have to get off of here shortly. Yes there are usually about 5 or 6 at least and we get some good conversations going. I haven't been on for a while as I have been in a Nascar Racing league that we just finished on line
I see... that's cool.. I"m also going to log off and watch some football. It was nice "meeting" you..
Yeppers you take care lance talk later
I am waiting for my doctor to call with the test results for Stills. Been treated for Lyme Desease for the past several years. IV antibiotics, etc. Has anyone else been treated for Lyme when they really had Stills?
Good evening folks. Guess we are a bit early?
think that the others are no longer on
don't know why my name showed on that post?
ok maybe now it's working
sometimes you have to go back and hit chat again
I hit Chat twice - so far seems that I see your Post Melly but the others are not there
gotta, go Kathleen just called
will chat again next year - bye
Was just doing some editing of music problem and wrote it lomg hand. the http code is messed up I think
kathleen just called for a short minute
oh you'll hav to fill me in
That was short. Shorter than me
lol, her dinner was ready she will call later, first we've talked since the hospital
Thats what I was doing when my computer shut down on me while I was still in chat, lol
oh, good you mean the memorial page music?
I think it was another song I wanted to use but not sure
That http code is a pain in the as CAT says Arse
I'll leave it though since you are fixing it
i don't quite know how to do that yet and will probably need your help with the needy meds link together one day soon
I got the application for our meds card today opened so will send that to you, it's easy
When we first got that I printed it out but it came out real small and I didn't make the font bigger so now I have to use my micro glasses
I think the needy meds would be good in a box on the first page like the brochures? what you think
When ur trying to read something and do it and its in code and you cant read it it really is a mess for want of nice words
yes need nice words here, lol
oh, I thought a counter would be nice for our page too
Yes that would be the best place for it. I don't know how to put that link in but Rad used one of our other boxes and dragged it over and then entered it
We will eventually get it right
ok I could see if I could do it or maybe will ask him so I don't mess it up
i cannot wait to change the colors of that page, I can't stand them but am trying to learn
Hey who cares if we mess it up? whose gonna know, lol
I know, not many seem to notice it seems
We do though and I like that
They sure noticed the brochure page Im sending out 50 to 75 a week now
Oh wonderful, I think the public is noticing
They are even posting it on the other facebook page now
Wonder wherre wonder Kitty is tonight
who knows, since we said we were coming maybe something came up?
Do you mind if I put a counter on the site? A simple one? They have many with our server
I can hear the guys in the background hollering at me, lol
On my gaming computer. No I am happy here. I'll go if no one show after while
so what you think of a counter?
Its ok but I think we have a lot of other things we need first but it is something we do need
it just takes a minute but I can do other things first if you want
We really should have one so we can get a reading on the hits on the site
That is just as important as anything else I guess?
i put one up but then thought I should ask first, lol so took it off
Hey dont worry about asking. I told you that before. We, you and I are working this web site
I'll put one back on then
who catches hell if something is wrong
even when we weren't in charge of it we got the hell some pee upon them
Not sure can't see that far up
Just Matt, Neci and I home this week
How is it up in Gilbertsville, PA
Cheryl's Dad, Archie in the hospital with pneumonia
He is in Strong Memorial in Rochester
oh sorry for that, hope it doesn't get worse
Whol 9 yards coughing blood etc
Had to be air lifted from their local general hospital
so many are doing so poorly these days
My prayers will be said for him
We were going up to see him on the 26th. But since out of town we decided best for us to stay here and she drove the 6 hour trip by herself
Ouch and I thought I was bad with the crackles on the left side
Sorry I lost ya'll there for a few. I went back to the main page for some reason
Thanks and his wife (cheryl step mom) had passed the Sunday before.
yes, a hard year for you all then
he is improving and spirits are good, he wants to go home!
Thats a good sign sometimes
the latrest plans are for her to stay with him when 1st discharged and then when improved enuff will bring here for a bit.
Our best is that it's soon
Have a cold right now.....not yet hit the lungs, but may call the pulmodude in the am enyway since it is an upcoming weekend
kathleen is staying with Keri right now too Dad
Thats good. She needs that
Matt and I doing fine....we managed to do the christmas eve stuff that matt loves before the 1st phone call
good plan, it can run more serious very fast
Darn, I keep losing my thread
then archie was stable and in good spirits so she stayed her for christmas morning stockings presents etc. So matt was happy
Better than losing your mind bob! lol
quite trying to sew while your talking, lol
i may not bother with capitals as my fingers do not like the shift key tonite
yes, hard not to multi task,
was doing a lundry when i realized it was thrusday
I usually forget so am good tonight
Cheryl called a bit ago. very tired with lot of driving, but her 3 brothers are in town
Glad you told me because I am so screwed up I dont know what day it is
good maybe she can get some rest
I keep forgetting appointments too dad, at least todays was in town
I will not get into it, but the outlaws, children of mary (step mom)are a bunch of self centered assholes pardon my french) Not making it easy on Archie
Oh Dad, I'll be out of town for the weekend on Saturday through Sunday
He doesn't need that while in hospital
oh you mean rectal orifices
you'll have to approve valries posts, lol
Welcome to the nut house, oops I mean the Stills House
I have a wound on my shin that is not healing (5 weeks) so Rheumy sent me to the wound care center.. Not infected, but have to hold the MTX and humira til it heals. hope the rest of the body does not decide to go on a rampage
perhaps they don't know to click chat again?
lol yes I know you can, just being smart
well gentlement, I'm off to eat cake
Love you both and take care
Lets hope not Fuzz Sure dont need that going on
just the adema is leaking out and keeping the wound damp.....special pad to absorb fliuids to keep it dry. andd elevate legs as much as possible
Hwey wait a minute nobody said anything about cake?
I am off to make my bed and start another load......house husbanding is not fun
me have double white and dark choc
mat has not complained about my cooking yet
no cake until midnight Pacific
Maybe he's scared to complain Fyzz
knows which side his bread is buttered on....bye, finally
Are u still with us guest?
tired, I was late getting home, then Fuzzy called me, so here I are!
Puddy tat welcome. I have something I want you to do fer me. Click on the memorial page and let it run for about a half a minute
Yeppers and it will keep playing as long as your on the page
I just fixed it. The html coe was wrong so I had to decipher it
it really is...makes me all misty
Thought you would like it
We are getting stuff done finally huh?
We have to do some more write ups for each peson on the page also
I know how hard you've been working on things
The name of the song is ice castles
Patty has been doing a lot
I have been doing bits an dpieces
It just feels good when stuff comes together
I'm glad she can help, and I know she loves to be hands on!
I have to tell you since we put that brochure request on there I have been sending at least 50 to 75 out a week
so word is really getting out there, that to is remarkable
I even had a Doctor call me the other day and ask me for someone in New York and luckily I had a name to give her.
Another Doctor I should have said, lol Duh!
well, the kudoes go to you and Melly.
No it goes to every one. We are a team on this Board
we are blessed to have you
how are you doing?..remember put the BS in the BS Locker
I was telling Melly earlier that I checked the PayPal yesterday and I almost peed my pants! There was a donation on there of $400.00 yes I said $400.00. What a nice Christmas present to the Foundation
I wonder if many of our members shopped through giveback
I'm doing day to day like always. I have a little crackling on my left side right now but it's not bad. I'm taking it a lot easier than I was amd Carole is making me take it easier believe me.
you have to look after yourself, and you know better. So, good for Carole to give you a kick in the pants
The donation was from Carl and Marjory Rossler from Ohio
Well I finally got it through my thick skull that if I want to stay alive I have to help myself?
yes you do, and putting your head down and bulling through stuff aint gonna cut it... I know, I tried it, and have come to an understanding...do better
yeppers have to. I was hoping Melly would come back on because I fixed ther music after she left and I wanted her to hear it, lol. She tried so hard to get it working and all it was was a little bit of code that was wrong
That bloody code will drive ya nuts. With me that's a short drive
She'll be as thrilled as I am....it makes that page and prose mean so much more
Yes it does. It really means a lot and I have a bunch more names to add to it also. But I do want to get some write up for the rest of them especially my Daughter of all people?
I think that will be good. You'll do her proud I know I knew Kate Frost, so will help with hers.
That sounds good. I think Patty is still on line because she just added a counter to this page
I saw that a few minutes ago, and wondered where it came from duh me
well hunny, I need to get something to eat, and take Jakers out. The phone was ringing as I got in the door and it was Dah Fuzz man, so we talked for a few minutes, then I popped in here, now I need to take Jakers out for a whizz, he hasn't been out yet!
ok hunny tak care love you.
I love you and that wonderful woman you were smart enough to marry, always have, always will. Remember, you and I are supposed to be smarter with out health..I will if you will!
This is my first time on this chat
hello are you still here?
what time zone does this chat begin at 6:00? that just occured to me.
Okee dokee, waited for some company until 6:45, no one showed, so 'til next week. Bye for now. Hope you have a pain free week!
I just got diagnose with Still disease, and I'm wondering if it is a lot of cases that ended up without pain one day
Hi I was diagnosed with AOSD about 4 weeks ago after spending weeks feeling awful and a week in hospital..To lots of you I know thats a quick diagnosis.On pred at the mo and trying to come to terms with the constant aches and pains along with the spikes at night . I was looking forward to going back to work but it seems it won't be just yet.....
Ok so after being diagnosed about a year and a half ago i find myself finally feeling a whole lot better. im only on 5mg of prednisone and 20mg of methotrexate (once a week) i must say, things are looking up for me. The first year was such a pain though
@Guest_378: i dont think there's a gurantee that one would go without pain for an entire day, the pain is just supressed somewhat by the medz
Im quite new to this chat
and having a tough time of it lately
ok guessing no one wants to chat take care all
Ok, I am on line and I would like to chat but when I hit enter nothing happens, please say hello so i can tell if this is working, I'm Gina.
Hi, I'm here how are you tonight?
I guess you just press on the person's name if you want to send a message back to them. I notice there are 3 of us here, so would anyone like to post anything??? I just posted a message to the group about my daughter being in terrible pain from her jaw. No idea how to help her. She is at her house and I am home, but until the doctor is il tomorrow will be waiting for that or the ER. She has had it a couple of months now and when it feels better she does not go get it checked out, and then it gets a bit better and she doen't do anything about it. Oh, I'm such a frustrated mom right now. I feel so helpless.
Does anyone else suffer from jaw pain?
Ok, now it says there are 4 people on line in chat, but so far I do not see any one that has posted but me. I don't bite really! Is it that you are posting and I am just not seeing it, or you just joined the chat????
Hi Gina. Click on the chat button again and hopefully it will reset your chat
@bob: Are you still on-line? I ran out for a sandwhich.
I am back from my sandwhich run, it says there are 7 people on line now. How is everyone doing?
I notice that each time I post a message, I must hit Still's Chat to get it to post. And then after I post a message, I have to click on Still's post for it to get posted. So I am the only one posting. If other's could do the same thing, we might be able to have a conversation???
Hi all, I'm giving the still's chat a go...
Hello, I am on chat is anyont else?
I am still here, if you tried to chat I think you must press the Still's chat for your message to be seen.
Back to see if anyoe is here to chat?
hello 4 people that chat says are on!
What can I do as a friend of someone with stills?
Well, that sundd strange but I don't want to get him tired, he hurts so much and he is really getting down. He used to play lax every evening w his son and I know he can't now. This is all new and just starting his first round of steroids, I'm gu
essing today. He has had to cancel a few get togethers.... He is my euchre partner. (C: hid wife, is my best friend, (she is my husbands euchre partner, we taught them to play, and it has stayed as perminant partners... For euchre only ) I guess just be available.
@grammakathy: are you still on line?
screen shows 3 on line - HELLO
Looks like no one else is on line.....bye
I am the mother of a 32 year old that has had stills disease for about 13 months and there is a struggle to manage the disease. She lives in San Diego and also has pericarditis attacks. He doctors just tell her that this is just part of her disease and we feel helpless. Are there any suggestions?
steriods dont seem to be helping much either now
well no one chatting bye all
hi I'm new anyone taking Actemera along with Methotrexate?
Hi, I am also new. I was just diagnosed but my doctor thinks that the disease has gone undiagnosed since July 2010, will this compromise my chance of going into remission? My joint pain is severe, I am taking skelaxin 3X daily and oxycodone 1-2X daily as needed to control my pain. I will be starting treatment this month and can decide between methotrexate and imuran. I have decreasing vision, seizures, abdominal pain, subnormal temperature, rash on my thighs, and weight loss. I read that MTX can cause more nausea and potential weight loss than Imuran, is that true? I can not afford to get any skinnier (5ft 5" and 102#) and I eat constantly and am also excessively thirsty. I also have kidney stones. Can anyone offer me any suggestions as to what drug may be better suited to me based on personal experience. I am a 27 y.o female.
My sister has what is believed to be Still's, however she has had very little joint pain. Wondering if anyone has had similar diagnosis. She has had fluid build up which caused chest pain and recently TTP (kidney failure). She is on predisone now, while doing plasma exchange and dialysis for her kidney.
ther is never anybody in here on thursday when i am here
Hi I am early for the 6 p.m. chat unless it was East Coast time?
I don't see my post so I wonder if chat is working
@grammakathy: are you still here?
I see that for the post to actually go onto the board, you must type your message, then hit send/enter and then go back to where it says Still's chat and hit that button to refresh the screen. The glitch still seems to be a problem. I check and I am on Pacific time ane my log on is 6 p.m. East Coast is 9 p.m.
I'm so late but thought I'd just see if anyone was around?
Hey Gina, you still around?
Cat is usually the moderator but has been doing so poorly that is why she may not be here tonight
She also works and why late at times
Oh well gonna go, hope your evening is well. Sorry I missed you.
I just got back from taking the dog out for a potty.
@Melly: are you still here?
Oh well, I waited and will leave my footprint and say that if you log in and I missed you, maybe next week!
does any one want to chat?
i have had stills now for 5 years
and been on all sorts of medication and still nothing works
ok well amybe chat to some one another time
Hi anyone here for me to talk to
I'm new I'm the one who is taking actemera and methotrexate and prednisone
It says five people online
Hi anyone know a hospital that specializes in stills disease
So anxious to find a hospital that specializes in this
Hi Pamela, sorry you were missed. Remember that on Thursday, at 6 p.m. Pacific Standard Time, there is a chat scheduled here and you will mor than likely find someone here then. I myself do not know of a Hospital setting where you would be admitted and all that specializes in Still's Disease except possibly the Mayo Clinci, but the location could be anywhere in the country. Hope to chat with you on Thursday evening. Gina
hello.my name is morgan and im an 18 year old female that was diagnosed with stills disease,a very serious case of it in september of 2011.i was just hoping to hear from anyone and maybe get a chance to relate to any other younger people struck with this illness.thanks alot <3
HI - my name is Shelly and I've had Stills almost 3 years - got it at the age of 60.
wow! your the first person that i can relate too.how bad was your onset? and what meds are you on if any?
I blacked out in my bathroom and was rushed by ambulance to local hospital where I stayed for 6 days with fevers of 104 and chills. I was not diagnosed until 2 weeks later. I am on predisone...started at 40mg and last week down to 2mg. It has affected my right side - hip and knee.
its hard for me to lower my predisone too.it took u 3 years to get from 40 to 2?
yes - I have a very good doctor and he is very strict about dosage.
does labs every other month - and lowers dosage around 4-6 months
i guess he is.i was barely able to move for about a week or so b 4 i went in.i had pericarditus and my left lung collapsed.i was on 80 mg of predisone and was in the hospital for about a month n i lost 30 lbs
Morgan - what city do you live in?
i live in saratoga springs in upstate NY
FYI - if Chat stops click the wording Still's chat on the left - I just had to do that.
so you're an east coast gal too.
yes I am
a proud one.what about you?
From Philly home of the Eagles and Flyers - of course 76ers to.
yes i am.i just went back this january.its difficult.Today was a bad day so i missed classes
If you have not asked for the brochures (link on side) do so. The information is wonderful. I get 20 copies at a time and give them out to all that I come in contact with. You'd be surprised the medical personnel - dentists/pharmists that have no idea what Stills is.
I am employed and had to cut back from 5 to 4 days. I have an office job and car pool 18 miles each way. This week played hookey and went to Atlantic City Monday and Tuesday...great to just relax.
i know! its shocking.ive had to go to so many doctors until it landed me 3 1/2 hours away at boston womens hospital where they have an expert on the disease
hookey - old term for not going to work.....
i played ice hockey,it as my life..and its the worst part about having this disease is coping with the fact i may never be able to be back on my team again
oh haha i no hookey,hahaha
We are both early - past couple of times that I logged in no one else was there....hopefully others will be joining in.
i hope so.its just nice to talk to someone
there are a few younger women who have posted .... mostly concerned about having children. in my case I had a baby when I was 24. The doctors believe that I had Stills when I was a teenager and kept blaming the fevers/chills on food poisoning.
wow,so have you talked to anyone my age yet?
via chat no....but reading emails that were posted - yes
if you have not read the member profiles and member histories link on side they are interesting..... Stills affects all regardless of gender/age.
the on-line just jumped to 5 so maybe others will be on line
Shelly, I am from just outside Philly
lot of people got here early, eh?
I was on line about 8:50 with a young lady - morgan from upstate NY and they she dropped off. I was about to sign off when I saw you were on.
previously you emailed me when I was trying to get a lunch together for those in this area since Las Vegas is out of the question for me but times did not work out .... some Sat some Sun ...
I have a brother in law north of where she is
I just started back to work this week after a hospital stay
Glad to hear that you are doing better
I told you to stay out of those Jorsepistols!
much, my wife made me admit to myself that I am not Superman
My wifes been telling me that for 53 years and I still can't hear her
My doc said this one took a lot out of me. He was concerned...
I had been doing well and got off track with the meds
A wound would not heal on my shin and the rheumy concerned about osteomyelitis
Sound like me now. I grab a hand full 4x a day and hope I got the right ones
so had to drop MTX and Humira and everything went south
just started back on Humira Tues. then after 2 weeks, half doses of MTX
bob - you're married 53 years? we've been married 39 years and poor Kim K could not last 72 days
Cheryl and I are are at 40 this year (May)
morgan was on line earlier and dropped off from cha.
someone came on for a brief time and disappeared
I'm putting Carole in for Sainthood
guess we are the Older generation....
count is up to 7? on line
I can believe that she would desearve that, having to live with you so long....lol
I guess. They just make it to easy to get out of it now a days. Yes she sure does beileve me! lol
I see 4 but only 3 names.
Must be Bob's programming skills
the counter traffic shows 7.... 3 names under welcome.
by the way I like the new website - very stylish.
Like today we left the house at 845am and didn't get home until 3pm. Physical therapy and doctor appointmets for me
me too. clssier and more up to date
Patty and I have been doing a lot of work on it but there is still a lot more to go
Biggest update has been in the memorial page with the music addition and more people added
I'm still employed (lucky in many ways) but it means getting up at 4:30am/start work at 6am and this is past my bedtime. I'll have to check the memorial page out tomorrow.
signing off/good night Shelly
I got an email from a Polish fellow in the UK. Thought I might speak polish as he has a friend who does not speak english and lives in Poland. I will see what I can do, except I am 3rd generation American and do not speak it.
I was just given the diagnosis of Stills ( two days ago) from a doc at Massachusetts General. I was seeing her to help me with a Lyme Disease diagnosis. The path report of my hives gave some clues to arrive at a Stills diagnosis. Does anyone know how the uticarial hive is differentiated in Stills disease?
I thought for sure CAT and Patty would be on tonight
hisfriend was just diagnosed and has the expected fears and little support in that country
The Stills rash is usually flat, salmon colored and frequently does not itch.
I xcan't help you at all with the rash
Some have experienced itches within the group
No I'm from the Chicago area
Wow, long way to travel to get diagnosed.
2 days ago diagnosed. How long since symptoms before that?
Have you had the dreaded fevers?
yeah I have been battleing with Lyme like symptoms and have been on antibiotics for three years. The doc is the head of infectious disease and sees many Lyme patients. Apparently she is not familiar with the rash which is non itchy.
I think that our site here has some pictures of common rash
Yes, usually does not itch. Mine are just there. when I get them
yes there is a link in the first page that takes you right to it
Was in the hospital with a bad infection and got the rashes all over my arms and torso. Had not had them show up for years
Sometimes they coinside with fevers.
They were the "ah ha!" item for my rheumatologist.
Lyme first noted in Lyme Connecticut so I would imagine Mass General sees lots of them.
I have had fevers,however Babasiosis causes wringing night sweats also so I was treated for that . The Mepron that I was on did actually help. I notice that I will only have sweats when I take an NSAID for the bone and muscle pain.
I just checked the first page and that link to the rash is not there. I'll have to find it
My fevers were 2 times a day at the same time to about 103.5 and then gone in about 2 hours. Like clockwork
Yes and Lyme was discovered around the same time AOSD was discovered. In the early 70s . Interesting Huh
Fuzz am I still on the chat page?
around 6pm and then again at 3AM. Sweats were bad
yes, I believe AOSD was around 1972.
Thanks. I have been bouncing around trying to find the rash page
I am trying to figure how to answer a question from Dave Moler on the Face book site.
Sweats were bad... Do you no longer have symptoms? and if so why?
I stll have the arthritis, enlarged spleen, and when I had to discontinue my regimen due to infection after removal of a skin cancer, it attacked my lungs. Immune related pulmonary fibrosis. But not on O2 like the old man, Bob here
i hope you never go on it either Fuzzy
Am on 20mg prednisone. Have restarted Humira. this week
You know the TV ads for those drugs where they very rapidly infer, "if you take these while you have an infection, you might die."
How many years does it take for the disease to attack your internal organs?
Sometimes right away and sometimes not all of them. common ones are heart and lungs and liver. Lymphatics too.
I'm not sure there is a set time is there?
And can you explain the characteristics of the arthritis that you have. Is it disfiguring?
I was going to say it didn't take long at all for it to attack my daughters organs
I like to say that I have a stainless steel liver. It never acts up and my heart is cool.
The arthritis can be disfiguring. same as RA.
I joints hurt but xrays have been stable. Some others end up with joint replacements.
Where is the pain? In the joint? and is there noticable swelling?
I consider myself lucky. Some days.
Does anyone have bone pain over the shin or on the scapula? Muscle aches particularly in the legs?
I always consider myself lucky when I see some of the other guys?
Heart issues common are inflammation of the sav arond the heart, pericarditis. Commmon for lungs is pleutis (pleurasy SP>
Is it common to have arthritis in the hands and fingers?
My finger joints and wrists have lot of soft tissue swelling.
I use sign language with my son so my fingers do not "speak" well, some days
yes hands and fingers is common. Also, my ankles and toes
of course I now have gout too so some days not sure who is bthering me Sir Stills or Dr.Gout
Speaking of my son, I have to drop and get him moving to bed. My address is
uncle_fuzzy@live.com if you have anything else to ask.
Also check out the Yahoo group. There is a link on our page here.
Bob, talk atcha later. Nice to meet you 789.
I found the pictures of the rash. When you go to the web site if you click on the list under still's info it's down a little ways in red and you just click on the link. Quite a few pictures.
Well Guest 789 I am going to have to get off of here for a while. I don't know when I'll be back but I'
Take care and join us on the forums if you would like? Sorry I have to leave.
Bye all Nice to meet you too. Sorry had to get the phone and talk to my bereaving mother in law for a while.
Hi, I am on line chat, sorry to be late, but I've had a migraine today. If you come one line, I'm just lurking ready to conversate with you.
i have been diagnosed with stills for about a year now tryen to meet others
how long has everyone been dealin with this stupid disease?
Hi, I am on line if anyone needs to talk.
After you put a post on line you need to go back on the left where it says Still's chat and hit it again to refresh the page.
Hello.I need some answers please
I have just joined the site seems very help full
any one around to have a chat with
Never done this before. I'm having Rituximab treatment for my Stills and was wondering if anyone has had it?
