new member introduction

[Guest guest]

,

I am in Houston as well! What doc do you see? I currently go to the

University of Texas Rheumatology Clinic and love them. I recently

heard of another doc at St. Luke's that I might try out, Holly .

She's supposed to be amazing.

Glad you found us but hate that you have to be here.

Houston, TX

[Guest guest]

 first welcome sad your here as in why but glad you have joined or family. you

said some thing that shocked me as I never felt that way tell months later and

that was  " you did not want to be a burden on her " fist off seek out concealing

both for you and her and all that live in your home. Stills will change your

life and hers and it is the best way I know of to help all in the home to

understand how it will do that. I say this because of personal experience my ex

a the time was so supportive but that ended some months later and then 2 1/2

years later I was not working any more and could not she then divorced me and it

was over things brought on by stills if you want to know more then send an e

mail and I will fill in blanks . now not all are like that and my wife

would never do any thing like my ex did I know that. but she also grow up with a

disabled father so her understanding is great . some medications can have some

side effects that are

to fun and you will not normally see them but others will out side the home

that do not see you on a day to day bases. I am not saying this to scare but to

let you know how concealing can be a great big benefit .now also understand

before stills I was not a person who would do concealing at all for the most

part but I do believe in a lot of case it can help.

 Living with still dose not mean the end of life it means changes in how we live

some not good and others are real blessings if we look for them. I know i have

been cursed and blesses because of stills.

 being you were dx so fast will be a big help in trying to get what control we

can of it and that is always a good thing. so welcome and glad ya found us and

learn all you can about your meds there side effects and stills in general and

keep your eyes open to changes in your self also keep a log on how you feel day

by day with pail level how you feel in general and use it to help the docs

so ask all you want some one here will post  as they most likely have been there

and done that

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

new member introduction

Dear Stills Members,

feel like this is going to mean major changes

in my lifestyle, and this is sometimes scary. Also, when I first got

sick, went to the hospital, and then came home, there was lots and

lots of support from my family and friends. I imagine that this is a

phase (can anyone tell me if I'm right?) - when someone first gets

sick, it's new, and everyone will express sympathy. But when one has

been dealing with it for months or years, it won't be new anymore, and

people won't think to send their kind thoughts in the same way...this

is another reason I am glad to have found this group.

My wife has been unbelievably supportive, loving and helpful. In most

ways I think this experience has been more stressful for her than for

me.

.. Now that I'm better I'm trying to do things to help her rest and

recover, and of course I'm hoping that I won't continue to be a burden

to her (she would tell me I'm not, but as everyone on the list seems

to understand, it's pretty hard not to feel that one is).

..

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

Dear

Welcome to the Stilligan family sorry it is under these circumstances. I am

so glad that you are receiving good medical help so quickly it makes such a

difference. Everyone seems to get a lot of help from us and I hope you do

to.

Best wishes

Joan U.K.

[Guest guest]

Hi , hi everyone,

I am also seeing the UT Rheumatology physicians - Dr. Tan is head of

the group, I believe, and I see Dr. Singh as my primary contact

there. I love them too!

> ,

>

> I am in Houston as well! What doc do you see? I currently go to the

> University of Texas Rheumatology Clinic and love them. I recently

> heard of another doc at St. Luke's that I might try out, Holly .

> She's supposed to be amazing.

>

> Glad you found us but hate that you have to be here.

>

>

> Houston, TX

>

>

>

[Guest guest]

Hey Marty,

Thanks for your big welcome and your thoughts. I have appreciated

your posts quite a lot, as you let us see all the different feelings

that come up. This is helping me figure out what to expect and

prepare for, I think. I certainly agree with your suggestion about

counseling. I am probably still some in denial, hoping that it's

going to go away or the effect will be so small that I won't have to

change much in my life, but this is where reading others' experiences

is good. I have read posts several times where I thought to myself,

Oh - I feel like that too (some), so I might as well think about how

to deal with it - up until now I have been trying to ignore it...One

other thing you have said in different ways several times that I

appreciate very much is that you don't worry so much about remission

or the future, but focus on getting the most out of each day. I tell

myself that this situation is really no different from what anyone

faces, whether " sick " or " well. " What we have to deal with may be

different, but the part that we can do something about is not so

different...

I wish you and everyone a great day.

>

> first welcome sad your here as in why but glad you have joined or

> family. you said some thing that shocked me as I never felt that way

> tell months later and that was " you did not want to be a burden on

> her " fist off seek out concealing both for you and her and all that

> live in your home. Stills will change your life and hers and it is

> the best way I know of to help all in the home to understand how it

> will do that. I say this because of personal experience my ex a the

> time was so supportive but that ended some months later and then 2

> 1/2 years later I was not working any more and could not she then

> divorced me and it was over things brought on by stills if you want

> to know more then send an e mail and I will fill in blanks . now not

> all are like that and my wife would never do any thing like

> my ex did I know that. but she also grow up with a disabled father

> so her understanding is great . some medications can have some side

> effects that are

> to fun and you will not normally see them but others will out side

> the home that do not see you on a day to day bases. I am not saying

> this to scare but to let you know how concealing can be a great big

> benefit .now also understand before stills I was not a person who

> would do concealing at all for the most part but I do believe in a

> lot of case it can help.

> Living with still dose not mean the end of life it means changes in

> how we live some not good and others are real blessings if we look

> for them. I know i have been cursed and blesses because of stills.

> being you were dx so fast will be a big help in trying to get what

> control we can of it and that is always a good thing. so welcome and

> glad ya found us and learn all you can about your meds there side

> effects and stills in general and keep your eyes open to changes in

> your self also keep a log on how you feel day by day with pail level

> how you feel in general and use it to help the docs

> so ask all you want some one here will post as they most likely

> have been there and done that

>

>

> the rednecks

> Marty & G.

> the redneck's my space http://www.myspace.com/martyg58

>

> Stills ; An illness I know to well!

> To learn about Stills http://www.stillsdisease.org/stills_info

> If you find yourself in a hole, the first thing to do is stop diggin'.

>

> In the old days a man who saved money was a miser; nowadays he's a

> wonder. ~Author Unknown

>

>

> new member introduction

>

> Dear Stills Members,

>

> feel like this is going to mean major changes

> in my lifestyle, and this is sometimes scary. Also, when I first got

> sick, went to the hospital, and then came home, there was lots and

> lots of support from my family and friends. I imagine that this is a

> phase (can anyone tell me if I'm right?) - when someone first gets

> sick, it's new, and everyone will express sympathy. But when one has

> been dealing with it for months or years, it won't be new anymore, and

> people won't think to send their kind thoughts in the same way...this

> is another reason I am glad to have found this group.

>

> My wife has been unbelievably supportive, loving and helpful. In most

> ways I think this experience has been more stressful for her than for

> me.

> . Now that I'm better I'm trying to do things to help her rest and

> recover, and of course I'm hoping that I won't continue to be a burden

> to her (she would tell me I'm not, but as everyone on the list seems

> to understand, it's pretty hard not to feel that one is).

>

> .

>

> " Taking my gun away because I might shoot someone is like cutting my

> tongue out because I might yell `Fire!' in a crowded theater. "

> -- Venetoklis

>

> a government and its agents are under no general duty to provide

> public services, such as police protection, to any particular

> individual citizen...

> -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

>

>

[Guest guest]

That would really be great! How can we work this?

Re: new member introduction

Hi ,

and I are both in Houston. UT is located in The Medical

Center. It would be great if we could all meet up!

Houston, TX

[Guest guest]

Hi

I see from your e-mail that you have taken Humira and as you may have read

from my posts my Rheumy. is trying to get permission for me to try it. I

know everyone is different, but did you have any really bad side effects,

especially urine retention or any bladder problems as I suffer from

recurring bladder infections and I am a bit concerned about this.

Hope that you don't mind me asking you this question.

Take care and hope you are well at the moment.

Joan U.K.

[Guest guest]

Hi Joan, I don't mind you asking at all. No, I had no side effects from the

Humira. It worked for me pretty well for about 4 months, then I caught a cold

and it suddenly quit working. I tried 2 more doses and got absolutely nothing

out of it. The last good month I had was in April. I think my immune system

kicked into high gear again to fight off the cold. You finally got approved

didn't you? When do you get to start taking it? I sure hope it works for you

for a long time!

in TX

PS...One of my very good friends is from Surrey (That is your home right?)

[Guest guest]

Hello .

Thanks for your help in answering my question. Yes I have been given

permission to try Humira, but I now have to ask my Rheumy. if I can take it

with a permanent small dose of antibiotic because I get so many urine

infections. I misunderstood, I thought it was the Humira and antibiotics

which you couldn't take at the same time but our local Pharmacist said that

you couldn't take Humira when you had an infection, so that if you were

permanently on antibiotics you wouldn't have an infection. Anyway I am

going to check with my Rheumy just to be on the safe side, so when I can

track him down and if he says that I can go ahead I can start straight away.

Apparently a nurse comes the first time and shows you how to do the

injection and then you do it after that.

It has been a glorious day here today temperatures up in the 80's. My

husband has been busy in the garden and I have been watching him.

Hope you have had a good day today. Where does your friend live in Surrey.

We live near Epsom sometimes some people know of the racecourse there.

Best wishes

Joan U.K.

[Guest guest]

I take a full time antibiotic (I think that's what it is) also..called Bactrim.

Maybe that's why I don't get sick often. I forgot about that when you asked. I

had no problem with the injections. I think it's easier to do on yourself than

on others.

My friend grew up in Surrey...but I don't know where. She moved across the

pond in the 80s and I met her in Laredo, Tx. Her name is Patsy O'Shea she

would be about 60 now...comes from a big family there (in Surrey)...I've met her

sister Norma. Surrey sounds lovely. I so love English gardens. Do you grow

Lupins? We're seeing the after effects of Hurricane Dolly here in San

today. Really just a lot of rain here...which we desperately needed.

I'll be anxious to hear how you do with the Humira and hope the best for you!

Have a lovely day!

in TX

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

[Guest guest]

I would also be happy to meet sometime. My wife and I are visiting my

parents in St. Louis at the moment - we'll be back in Houston in August.

I suppose we could meet in Houston, meet in San , or meet

halfway between sometime. Any thoughts about what would be best?

Perhaps there are others reading who might like to join us as well?

> That would really be great! How can we work this?

>

> Re: new member introduction

>

> Hi ,

>

> and I are both in Houston. UT is located in The Medical

> Center. It would be great if we could all meet up!

>

>

> Houston, TX

>

>

[Guest guest]

Hi -

Welcome! I, too, was born in 1969, - June 6th. So - a few months

older. I have a 3 year old son and

two labs and an African grey bird. I live in Palm City, Fl.

I, too, was just recently diagnosed, but have been having the rash

since 1998 and found the Still's site

in 2005 and realized for myself that I had Still's even though the docs

couldn't or wouldn't officially diagnose

it.

I've had every symptom, including recent fluid on the heart which ended

in surgery 4 weeks ago. Yuk!

I'm doing better now. I'm on Medrol and weaning off now - I had a

reaction to the Prednisone.

So - it's a slow process for me right now and not sure what i'll be

doing once I'm weaned off.

We'll see. Certainly can't afford anymore fluid on my heart! Scary!

I was initially on Prednisone on and off for a year a few years ago and

it can make you a little

edgy and tempered - so just realize it and stay calm or excuse yourself

when you feel it.

I have found the pain killers are a good balance for me to even me out.

Especially

recently with family in town. aggh!

I've realized - as is mentioned on the site - that traveling for me is

a HUGE stress and

often brings on symptoms of joint pain. I think it's the deadlines

that stress me. So -

pack early if you travel.

Find ways to be joyful and stress-free and hang in there!

This is a wonderful group of loving people - and they're all so

educated - so ask

lots of questions!

Sullivan

> Hello all

>  

> My name is . My birthday is Sept. 7 1969.  If you don't

> want to do the math I am 38.  I live near Houston, TX.  I am married

> with one daughter and a Crazy bull terrier ( a Spud McKenzie dog ).

>  

> I was officially diagnosed with AOSD on August 4, 2008, but have had

> symptoms for about 6 years.  In a way I am lucky.  For the first

> 5years my only symptoms were mainly the rash, sometimes fevers, and an

> occasional sore throat that would go away the next day.  I have only

> been experiencing joint pains for about a year now.  They have just

> recently been getting bad, usually my wrists and ankles.  My first pcp

> kept telling me that I was allergic to something and the fever was

> just a low grade infection.  Take some Advil for the fever and if it

> doesn't go away to come back..  After a little while of this I knew it

> was time to find a doctor that cared.

>  

> I found a doctor that seemed to want to help last year.  He ran some

> blood work and it came back normal except for an elevated wbc and

> lymphocytes.  Thought I might have a UTI and gave me some

> antibiotics.  The fever went away, but we all know that it went away

> on its own not the antibiotics.  Last June I had fever for about 4

> weeks and it really seemed to drain me.  The rash was bad also.  So my

> Dr. put me in the hospital for testing.  Everything came back normal

> except for high WBC and Sed rate.  But as fate would have it I ran

> into a doctor in the elevator while on my way for a chest x-ray.  He

> asked me " You look too healthy to be in the hospital.  Why are you

> here? "   So I told him my symptoms and he told me to look up Still's

> disease and said he was a RD on his way out of the elevator.  After my

> first round of bloodwork came back showing inflammation, I ended up

> with a consult with the same doctor I met in the elevator.  He ordered

> some

> more blood work and told me to see him at his office.  He said it

> looked like AOSD but he wanted to rule out some other things.  After

> the blood work came back he said there was no dought that it was

> Still's.  I don't remember what all the levels were but I think the

> serum ferritin level was 6750.

>  

> So now I am taking 20mg of pred (10 didn't do anything really).  He

> said would be short term.  12.5 mg of Methotrexate and folic acid. 

> The funny thing is, I found out on a Monday and I was scheduled to

> have a wisdom tooth removed on that Friday so I didn't start my pred

> until after a had the tooth removed.  They gave me an I V sedation to

> extract the tooth that morning.  That day I felt better than I had in

> a long time.  I didn't even have the rash.  No brain fog or nothing. 

> Even with the pain from the tooth I felt great that whole day.

>  

> Hope that wasn't too long.

>  

>

>

>

[Guest guest]

I am new to this group. I was raised on raw milk in WI in the days when it was

still legal to fill your jugs from a farmer's tank and leave a few dollar bills

in the milk house. I remember drinking it when it was still warm from the cows.

I am now back to drinking raw milk and can't imagine going back to the old

stuff. A sanctimonious opinion-giver in my town's newspaper wrote an uninformed

diatribe against raw milk last week, and I'm alarmed. Until now I have been just

taking the position of a happy user of raw milk, but I see now that the right to

have access to it does need to be protected. Count me in.

[Guest guest]

how far from ABQ?

Re: New Member introduction

I live up in the lovely Sandia Mtns.

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