introduction

[Guest guest]

> Does Dr. K attend any of the support groups in CA or anywhere else?

I would love to meet him and get to hear him speak.

>

> Lynn

==============================

Lynn

Dr. K is " usually " at the support meetings in Delano. (second tuesday

of each month).

Hugs

Jo

[Guest guest]

Maybe we can get DR K to fly up here sometime. He has a handful of

patients in the Seattle area. Alica who used to attend the South

meetings is a DR. Keshishian patient. anne who lives in Kingston

is a revision from a Dr. Devanney debaucle. There's me. Marla and

are both in the Pacific NW. There used to be a few others,

but they have moved.

No referral bonus. I'd be a rich woman if he did though! LOL I

just believe in the man's talent, the surgery, and the quality of life

it gives. I'll pretty much talk to anyone about it who will

listen.

Hope it all works out for you Lynn. I'll be praying that it does!

--Kym

[Guest guest]

well, I am thinking of flying down to the Delano meeting so I can meet him, if

not this month, then maybe next. I just have to call ahead and be sure he is

planning on attending. I am told he often times attends that local one. It

would be wonderful to have him up here.

That seems like a long shot though.

Lynn

Re: Introduction

Maybe we can get DR K to fly up here sometime. He has a handful of

patients in the Seattle area. Alica who used to attend the South

meetings is a DR. Keshishian patient. anne who lives in Kingston

is a revision from a Dr. Devanney debaucle. There's me. Marla and

are both in the Pacific NW. There used to be a few others,

but they have moved.

No referral bonus. I'd be a rich woman if he did though! LOL I

just believe in the man's talent, the surgery, and the quality of life

it gives. I'll pretty much talk to anyone about it who will

listen.

Hope it all works out for you Lynn. I'll be praying that it does!

--Kym

________________________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security

tools, free access to millions of high-quality videos from across the web, free

AOL Mail and more.

[Guest guest]

,

Don't worry about the lurking, I think a lot of us do that at first. Kind of

like standing on the sidelines and making sure things are " safe " for you to join

in, lol...

Oh, gracious, you sound soooo much like me!!! I went 8 years without a

diagnosis! And I have also had Pleurisy and Pericarditis. They had to remove

the fluid from around my heart, there was so much of it (380 ccs). I have also

moved around and had to deal with new doctors from state to state.

You might not want to hear this, , but stress is the worst thing for

people with Still's. It always, always triggers a flare in me, others, too.

You're description of this being a " silent monster " is right on target.

I have had docs who feel as if it's not a " true " flare sometimes, but in the

end, they've gotten used to me being right (after all, who better than we to

know our own bodies?).

Welcome to this awsome group of understanding people! If you ever want to

talk, email me privately and I will give you my # at glmrphy@... .

I am praying for better days ahead for you, dear...

Gail KY

noahs_mom_96 wrote:

Hi everyone. I'm ashamed to admit I've been lurking, which is not my

style. I should have jumped in and introduced myself long ago. My

name is and I've been diagnosed for about 4 years. I'm going

through a rough time right now and, for the first time, I'm afraid I'm

loosing the battle. More on that later.

I have relocated to Atlanta, GA from a very small town in New Mexico.

That was part of my challenge from the beginning in getting my dx - I

lived in the boonies. I had to drive 100+ miles one way just to get

to see any type of specialist. I went through a huge number of

doctors over the years, hearing everything from " I have no idea what's

wrong with you " to " You've tested negative for everything. You must

be imagining this. " Ok, the first answer was discouraging; the second

answer ticked me off. My SED rate was high, I have an UNDENIABLE rash

with no itching or scaling, I have swollen joints, intermittent fevers

up to 103.6 at its highest, pain (should I list it all or just spare

you, the few who understand?), I seem to get sick easily - catching

whatever goes around, etc. It's been a nightmare. I finally found a

rheumy who ran me through a series of tests and mumbled under his

breath that he'd only seen one other case like this in his career ...

but surely this wasn't the same thing. I pressed him and asked him

what he was referring to - he said Still's. I started researching the

disease and knew I had hope. This beast had a name. I pressed my

doctor (whom I absolutely loved) and he began calling colleagues,

comparing notes, even calling the Mayo Clinic who accepted me as a

patient. He put me on methotrexate and Enbrel and, for all intents

and purposes, I had my life back for the first time in 6 years.

I took a new job in Atlanta, Georgia (I'm an HR Director for a German

company and have a very, very, very high stress job). I found a

wonderful PCP and began my search for a rheumy. I ended up at Emory

with the head of the department. I *think* he's a good doctor, but

he's so different from my beloved rheumy it's taking time for me to

trust him. The last year has been a rough one. While my labs are

weird (high SED, elevated liver enzymes and CRP), my physical symptoms

are wearing me down. I am just positive it's the stress. I had a

full-blown flare in late July and was out of work a week. My labs

weren't as severe as my symptoms but my rheumy gave me a medrol dose

pack " just in case it's a true flare " (argh!) and I was on the mend.

Then I ended up (Sunday night) in the ER with pleurisy and

pericarditis, both of which are very new for me. My rheumy put me on

a new NSAID (Naproxen 1000mg/day) with the " hope " it works. He wants

to keep me off steroids as long as possible. He discourages me when

he says it's hard for him to know where to begin because he came

in " in the middle of things " - referring to my last dr seeing me at

my " worst " . I don't want to start all over again. It's depressing.

Has anyone else had pleurisy or pericarditis related to Still's? I'm

always so tired, and this has made it seem 100 times worse than

normal. I guess a general feeling of lack of air can do that to a

girl. )

Anyway, it's so great to find a group who understands what it's like

to fight (mostly) invisible monsters. I look forward to getting to

know you.

Visit me, your Kay Independent Beauty Consultant (10% of your order will be

donated to the International Still's Disease Foundation)

http://www.marykay.com/glmurphy

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

,

I'm glad you spoke up and wrote. My number one thing is having a

doctor I trust is being an activist in my health. If it's going to

take time but I trust his/her course of action I'm fine. But if I

don't trust they are helping, I drop them and keep searching for

another. I personally must feel the doctor is good for me in the

long run.

At teh same time, stress can definitely make us flare and I think

that sometimes no matter the drugs we take, the flare is giong to

continue if we don't take the time to slow down. Even then the

flare may continue. I nkow that my fever spikes greatly when I work

long hours (like I am doing right now). Unfortunately this has

resulted in career issues with many of us - myself included.

I'm sure others will have better advice and ideas. I just wanted to

let you know that we're listening.

Houston

[Guest guest]

Hi and welcome. Most of us tend to stay on the side lines for a

time I know I did.

I to had to go out of state to be dx but I did not live in the boonies

although I want to. I lived in Boise Idaho and biggest city in the state

and still had to go to calif Stanford med center to be dx. Now I live

out here because of other things and in a few years plan to move to

Missouri and hope to buy some land then also.

To answer your question about pleurisy or pericarditis related to

Still's? Yes I have had both the later a few times and all docs have

said it was because of stills .I was even on a program to check my

weight every day for a time also because of it. They hoped to see a bad

change before I felt it. In the end they ended it because I never really

changed and I hope that stays that way now that it is flaring again

after a three year time of having little if any stills trouble. O well

it was fun and I got to met my wife because of it and that is one of the

greatest things in my life out side my kid being born

Hugs all

Marty the redneck dragon fighter

[Guest guest]

Welcome ;

We hope to get to know you better in times to come.

[Guest guest]

Welcome again Jayne;

Seems everyone is a bit abscent as of late but you will find lots of good people

here. There are free Stills brochures for the asking if you mail

oldgoat378@... and give Bob your snail mail address. We also have

chat's on Thursday nights if you look for the posts throughout the days there

will be a link.

Good day,

[Guest guest]

Jayne,

welcome aboard. things can be shakey and fun to find out your not alone with the

problems...

alan.

introduction

hi everyone im jayne and im 40yrs old. ive had stills disease since age 2 but

wasnt diagnosed until about age 14. had my first hip replacement at age 18 and

have had seven more since then, the latest in march this year. very let down by

the medical profession over the years, saw an rd for the first time when i was

25 didnt know they existed and have seen her once since then, this october. had

my shoulders injected for the first time in october but right shoulder bad

again. ive never had good pain relief, started mtx for first time in october and

taking rheumalgan and paracetamol, my pains are actually getting worse and at

times unbearable. im divorced with 2 children age 11 and 9 and at times its

really hard going. i do try to keep on top of things and love meeting with

friends and having a good laugh but after all these years of having stills, i

still know very little about the disease and would love some answers if possible

and why im starting to have so much pain

when i was told a few years ago that my arthritis wasnt active any more.......

[Guest guest]

hi jayne, my name is elly and i am 60 years old,i was one of the fortunate ones

(?) who didn't actually get stills untill i was 42,though i think i was having

symtoms many years before that.i joined this group about 1999 and have never

been sorry about it. people in this group have a wealth of information and

compassion,i personally couldn't have made it sometimes without them.i live in

michigan in the northern part of the lower penninsula.where do you live? any

time you have questions or just need to vent this is the place to be. i wish you

less pain and a happy new year.

elly

JAYNE MCCLOY wrote:

hi everyone im jayne and im 40yrs old. ive had stills disease since age 2 but

wasnt diagnosed until about age 14. had my first hip replacement at age 18 and

have had seven more since then, the latest in march this year. very let down by

the medical profession over the years, saw an rd for the first time when i was

25 didnt know they existed and have seen her once since then, this october. had

my shoulders injected for the first time in october but right shoulder bad

again. ive never had good pain relief, started mtx for first time in october and

taking rheumalgan and paracetamol, my pains are actually getting worse and at

times unbearable. im divorced with 2 children age 11 and 9 and at times its

really hard going. i do try to keep on top of things and love meeting with

friends and having a good laugh but after all these years of having stills, i

still know very little about the disease and would love some answers if possible

and why im starting to have so much

pain

when i was told a few years ago that my arthritis wasnt active any more.......

[Guest guest]

When i was hospitalised, the docs thought i had a serious infection,

they put me under the supervision of an infectologist. She tried

antibiotics but they almost killed me. So probably you do not have any

infection, the still's make white cells go up sky high but it is a

symptom.

Take care.

[Guest guest]

Hi ,

I'm new here too. I'm a 34 year old nursing student from western NC diagnosed

with Stills in 1996. Sounds like you have had a tough time since you were

born. Love your cats name, that is so cute! As of this morning I have 4 new

kittens. Also have a husband, 2 year old son, 2 dogs, and the mommy cat! Life is

full at the moment. I have been in a flare lately and been really depressed,

too. I go back to the doctor on Monday. Anyway, great to meet you!

</HTML>

[Guest guest]

Hello

Just wanted to say hello. You were a long time being diagnosed but they got

there in the end. I hope you are feeling better and your flare is well and

truly over.

Everyone has been a big help to me and you are very welcome to join us and

hope we can help if need be.

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of junipurr8

Sent: 04 May 2007 15:56

To: Stillsdisease

Subject: Introduction

Hi,

My name is . I live in central NY with my husband of ten

years () and our cat (Junipurr). My birthday is 4/20/73. I was

diagnosed with Still's in February 2007.

I'm not sure if it's relevant to the disease, but I was born two

months early and weighed just two pounds. I believe I've had Still's

since I was a toddler. Between the ages of 2 and 3, I suffered from

high fevers that caused convulsions. (My parents were told more than

once that I wouldn't live.) When I was 5, I was diagnosed with JRA.

I took Ascriptin - a high dose of aspirin every day. I was also on

Phenobarbitol and Dilantin. I don't recall much about my JRA, just

not being able to lift my head during flares and not being able to

play in gym class.

I went into remission when I was 10. When I was 12, I had the flu

and took aspirin. When the flu resolved, I contracted hepatitis and

was in the hospital due to dehydration. The doctors weren't sure it

was hepatitis and I was diagnosed with a bleeding ulcer. I also had

the flu when I was 17 and then had hepatitis. It was diagnosed

correctly and I haven't taken aspirin since.

At the age of 25 I started having back and arm pain. The cause

seemed to be a poorly designed work station. (I was working as a

medical transcriptionist.) Not much was done to help resolve the

pain. I moved the next year and did okay (just taking ibuprofen and

using ice and heat) for a while. In 2000, I had a raw spot on my

scalp. The hair fell out. I saw a dermatologist who peformed a

biopsy. He was concerned it might be lupus erythematosis. The biopsy

came back negative.

That same year, I started having a lot of neck and arm pain. I saw

chiropractors and physical therapists and ended up working part-

time. My employer (a law firm) decided they needed someone full-time

and terminated my employment.

I went to a pain clinic, received epidural injections in my

neck/spine (they didn't help at all), was on bed-rest for a month,

and eventually improved. I started working part-time in late 2000,

and was again employed full-time in spring of 2001. (My rheumy says

the arthritic changes and degeneration in my neck are from something

other than a bad work station.)

I was diagnosed with depression and anxiety in 2002 and started

taking medication.

I don't believe I had a rash (other than the spot on my scalp) until

around 2004. I saw my PCP for that and was given steroids and a

topical ointment.

In October 2005 I had a lot of pain in my legs. I went to my PCP and

said I was concerned about RA. Bloodwork was done and my RA factor

came back negative. It was suggested that I might be stressed and

should just relax. I had pain off and on and started getting regular

rashes. As long as the rash wasn't too bad, I simply applied the

topical ointment. I had pain frequently, but figured it was in my

head.

In December 2006 I started having significant pain in my left hip. I

went to the doctor thinking it was a pulled muscle. I just took

ibuprofen and applied ice and heat. When the pain got worse, I

noticed a nodule where the pain originated. I went back to the

doctor and bloodwork was done. Again, the RA factor was negative.

The doctor, at my urging, contacted the local rheumatologist. I was

in quite a bit of pain and had missed some work. I saw the

rheumatologist in early February and he immediately diagnosed me

with Still's. (I was even able to take him a photo of my most recent

rash.)

My father was diagnosed with RA about a year ago. (It's not Still's,

but doesn't present like " regular " RA.) While I hate what we are

both going through, it's very helpful to have someone to talk with.

I think I am just ending a flare. For the first time that I've

noticed in years, I had a fever. The flare started with a rash - one

of the worst I've had. Then the pain started and I had the fever -

but just for one day. I hurt through my entire body. All of my

joints were effected and I found it difficult to chew, breathe

deeply, and I had a massive headache.

I have a bit more energy today and much less pain.

I am currently taking: Welbutrin, Klonopin (as needed),

Methotrexate, Folic Acid, Hydrocodone (as needed), Fluocinonide

(topical treatment for scalp), Triamcinolone (ointment for skin),

and I just ended a Medrol dose pack for the rash.

Like many of you, I apologize for such a lengthy intro. I'm not sure

what part of my history might help other people - or what you might

be able to suggest based on what I've been through.

I'm grateful to have found this site and have already learned a lot.

Thank you,

[Guest guest]

Welcome to the group Kathy. I'm sorry to hear you are having such

problems with your doctors and managing your pain. It truly is horrible

when doctor's won't do what we need them to do. I don't know if this

is an idea for you or not. My sister-in-law suffers from Reflex

Sympathetic Dystrophy which is considered to be the worst pain disorder

in the world. She takes bunches of pain meds and they barely touch the

pain. In any case, her pain doctor is an anesthesiologist. I don't

know why but she says that they are pain specialists. I don't know if

it would be worth a try seeing if anyone like that is available in your

area. My psychiatrist does not prescribe pain meds, I get them from my

internist but don't currently take any really serious ones. My

rheumatologist will also prescribe them. I think you need a new

rheumatologist for sure. Also, trying finding out where they offer

pain clinics. They may be able to recommend someone for you to see or

go to them or whatever. Good luck. Your job sounds terrific. Helping

folks and working from home and all. Glad you are able to still work.

Sandrea

[Guest guest]

Welcome to the group. I am sure you will learn a lot here. I think

that sometimes we really do have to treat the symptoms because no one

knows how to fix the problem.. No one is even sure what the cause of

fibro is. I think good nutrition does make a difference and my

rheumatologist suggested water exercises run by the arthritis

foundation. These are offered lots of places. I couldn't do the class

because I have CFS as well and had too many consequences. Also I have a

lot of trouble with my hands and the temperature of the water caused me

severe pain. I'm sure others will be able to add more.

Sandrea

[Guest guest]

Hi Kellianne,

I just wanted to welcome you and give you my two cents

worth.This is an amazing group for info and compassion. I have been a

part of many support groups, both online and live,and I've found

this one the most useful and helpful.I've run two groups for people

in chronic pain/CFS/fibromyalgia. I've done countless hours of

research,tried every treatment/therapy/supplement going-at least it

feels like that!

After all my efforts and trials, I had to give in to the system,

for lack of funds. For the most part,our medical system treats the

symptoms and alot of medications are specifically for particular

symptoms. Don't get me wrong. I'm thankful there are such medications

to help or I wouldn't have a life-I'd be all bedridden with fatigue

and pain!

I am even more thankful that there is so much research and

interest in our diseases, so hopefully,one day, they will find

something to cure us.

In the meantime, everyone seems to go through the trial and

error gambit hoping to be the one that finds something to reverse

their illness.That search is called hope, which we all need to keep

us going.

Though I don't take alot of supplements and do take alot of

drugs ,now, every once in a while, I'll try something new on the

market. For the mostpart, they might help briefly but cannot sustain

their effect. They often average between $100-$150,or more, for a

monthly supply and you may need 2 or more of these to have any effect.

When I was diagnosed I was told exercise and sleep were the

only things that really helped, and I've found that is quite true-

when I'm able to exercise!

So,after all that, I guess I'm just saying, we each have

our own journeys and it doesn't much matter what have helped others

because you just have to try things for yourself!

>

> hello, I'm a new member and an very excited that there is this

group

> out there for those of us who suffer from this wide range of

> conditions. at this time, i am under the care of a rhumatoidologist

and

> my pcp. what bothers me is the amount of medications i am to take

to

> deal with the symptoms of FM. to me this feels like i am not

dealing

> with the main issue but just covering it up by caring for the by

> product. what i am looking for is a more whole body/ mind care for

my

> condition. if there are any ideas or information that anyone is

willing

> to share about this concept, i would really like to hear from them.

so

> far i have found that cutting out sugar, chocolate and caffine are

the

> basis of a theraputic diet for FM. (this caffine based life form is

> really sad she has to give that up)....oh well we do what we need

to do

> to gain control of our lives don't we?

>

[Guest guest]

Hi New , Welcome! Sure sounds like you have your hands full! I can’t

help with the disability benefits as I am a Canuck, but I will say that the

thing with family and friends is a hard and common dilemma. I think that

sometimes they just don’t WANT to understand, especially if you are the

caregiver, the one everyone turns to. It can be very threatening to upset

the balance of who helps who. You can print off a page of explanation to

hand out from any good website, but if they are in denial, they will not

even read it.

Bottom line is that you respect yourself and not take crap on from other’s

attitudes. And let them know it! If you had MS or Cancer they would have to

get it, even though those diseases mostly are not visible either. There has

been a lot of bad press for people with this disease, and the general public

still does not see it as something serious. Why do they think you are

getting all those care hours and disability supports??? Inevitably some

friends who refuse to understand will fall away. The ones left are your TRUE

friends.

A group like this is a big help I have found, in that we really DO

understand! And struggle with the same things, more or less, that you do.!

Take Care, Aylwin

[Guest guest]

Thanks for the greeting Aylwin! I appreciate your comments too :-)

and know you are right about the family and friends being used to me

being the strong one/caregiver/problem solver, etc and they are angry

with me....my son sat and told a CF researcher Sat that I am faking

it and just lazy and crazy :-) Thanks again for your response :-)

>

> Hi New , Welcome! Sure sounds like you have your hands full!

I can't

> help with the disability benefits as I am a Canuck, but I will say

that the

> thing with family and friends is a hard and common dilemma. I think

that

> sometimes they just don't WANT to understand, especially if you are

the

> caregiver, the one everyone turns to.

[Guest guest]

AMEN!

STL Jane

" Di ) " wrote:

I have given up trying to explain or defend myself. Those that care

enough to really want to learn are worth the energy. The rest I tell I

am disabled and chronically ill. They are a drain to what precious

energy I have.

Take care of you. Big gentle huggles.

Love ya,

Di

[Guest guest]

I don't know why the new has not responded to my question but

I'll take the change. Which does group prefer, or Dutchie?

I'll go by either but dutchie is my nick for so many things so I am

comfortable with that too. Just let me know.

If there is a new dutchie in the future, will let her change lol!

Huggz!

Dutchie/cynthia

> I agree, , we have two s, two s, and two

Janes, maybe

> more. I put S. on my posts now, because it gets too confusing

as to

> who is saying what. As long as our last names don't start with the

same

> letter, it should work ok.

>

[Guest guest]

Hello everybody,

I write to introduce myself to the list. I appreciate a lot the work

that everybody is doing, and I hope to contribute in the future.

It's less than 1 year that I have been exposed to the work of Rife,

and also other people who enriched my knowledge of how " waves " work.

They folgorated me, literally.

I'll have soon my first plasma machine, and start testing. It will

require time, but I have in mind some algorithms for controlling the

device from a computer, computerized scanning, resonance tracing (I'm

a software developer), etc.

I don't anticipate nothing now, and I won't be very active in the very

near future. But I will try to be very active in the development in

the next future.

Thanks,

Fabrizio

[Guest guest]

what is " folgorated " ??

>

>

>

>

>

>

> Hello everybody,

> I write to introduce myself to the list. I appreciate a lot the work

> that everybody is doing, and I hope to contribute in the future.

>

> It's less than 1 year that I have been exposed to the work of Rife,

> and also other people who enriched my knowledge of how " waves " work.

> They folgorated me, literally.

>

> I'll have soon my first plasma machine, and start testing. It will

> require time, but I have in mind some algorithms for controlling the

> device from a computer, computerized scanning, resonance tracing (I'm

> a software developer), etc.

>

> I don't anticipate nothing now, and I won't be very active in the very

> near future. But I will try to be very active in the development in

> the next future.

>

> Thanks,

> Fabrizio

>

>

--

Dr. Jutkowitz www.ADVBIOSTRUCTURALCORR.com

Advanced BioStructural Correction™

618 Stratfield Rd, Fairfield, CT 06825

Have an opinion about ABC™ or something else but have not investigated

to get all the data? I enjoy this statement from JFK:

" Too often we. . . enjoy the comfort of opinion without the discomfort

of thought. "