Re: My goodbye to the group

February 7, 2003

Dear Lauri,

I really understand the pain you are going through and hope that you will

decide not to cut yourself us from the group forever. When I tell you I

really understand, I mean it. I first starting having problems with this

stuff when I was 17. For months, I was told I was a hypochondriac (despite

fevers, swollen joints,etc.). I was subjected to " teams " of psychiatrists in

a hospital who decided I had " school phobia " and was pretending to be sick.

I was then sent to a psychologist who told my parents after 1 visit, " I'm

happy to meet with your daughter as often as you want, but she has a physical

NOT psychological problem. " Finally, I found a doctor who diagnosed me

(OK...she diagnosed me with Lyme Disease which was WRONG, but it was the

first time that a doctor took the time to do more tests and follow through on

the obvious physical symptoms).

I could continue the litany of doctors who made mistakes, but we are here to

talk about you -- not me. When doctors don't know what is wrong with a

patient, they often decide the patient must be faking since they think they

have all the answers! Doctors are often wrong! They may think they are G-d,

but they are not.

As you may have read today, I was just told I don't have Stills. Oops -- the

doctor made a mistake.

Please hang in there and when you are ready, fight for yourself! Find a

doctor that will listen.

More importantly, feel free to come to this group for support. You are so

important and you need to be well.

Please feel free to email me personally if I can help you in any way.

Please also know that you have been a source of strength for so many of us

here.

Love,

February 7, 2003

Lauri,

Please don't leave our great group. I'm very sorry to hear that you are

leaving and I'm so, so, sorry to read your letter to us. I felt so many

tears in reading your letter. Please reconsider your decision. Thei is a

Doctor out their for you. I'm so sorry your in so much pain!! Again please

don't leave. if you want to please e-mail me at wave678@... and we will

talk. I'm really sooo sorry. Take care and try to think of good thoughts but

I know if so difucult at this time. Sincerely

Dave,

February 7, 2003

Lauri,

Please don't leave our great group. I'm very sorry to hear that you are

leaving and I'm so, so, sorry to read your letter to us. I felt so many

tears in reading your letter. Please reconsider your decision. Thei is a

Doctor out their for you. I'm so sorry your in so much pain!! Again please

don't leave. if you want to please e-mail me at wave678@... and we will

talk. I'm really sooo sorry. Take care and try to think of good thoughts but

I know if so difucult at this time. Sincerely

Dave,

February 7, 2003

Lauri can I call you? My email is newme@.... I won't badger you I

just feel heartsick for you and do understand. With love, Melt

My goodbye to the group

> Everyone

>

> It's time for me to say goodbye to the group. Needless to say, my doctors

> visit did not go well.

>

> I've basically been told that my pain and problems are in my head. The

rest

> of it is due to Fibromyalgia.

>

> I tried, I really tried to hold my ground. I told him that since I

started

> the 150mgs of Efexxor with the 30mg remeron " boost " that my fibro symptoms

> had disappeared. I'm sleeping well, my tenderness on touch is gone.

>

> What I do have, and what I do have very badly is joint pain. Depending on

> whatever joint I might have depended on that day, the pain is

excruciating.

> The pain in my shoulders lately has been beyond belief lately. I've had

> swelling in my fingers, my wrist and my ankles but he told me that I must

> have imagined it. He told me that it was all in my mind, even though I

asked

> my husband whether it was swollen and he said yes.

>

> I told him the pain I am going through is the same pain that I was coping

> with almost 3 yrs ago when I was first diagnosed. I told him I developed

the

> fibro about 18 months into getting sick and there was a distinct

difference

> in the types of pain. The fibro type is gone, the stills type is still

there

> with a vengence.

>

> He told me the following reasons why I can't possibly be suffering from

> stills - He put me on Prednisone for a week and it didn't help. Everyone

> that has Stills gets instant relief from prednisone. The one time he took

my

> blood my SED rate wasn't through the roof. Everyone with stills has a SED

> rate through the roof. He said he looked at my joints and they look fine.

> He only " looked " at my knuckles and that was about 30 seconds and all he

did

> was bend them back and forth. He told me I can't possibly have stills

since

> I didn't scream in pain. I couldn't have stills because I didn't have a

> fever the first trip. He took my temp. again and it was 99.3 but that

wasn't

> enough. People with stills are sick, sick people.

>

> He will not renew my handicap permit because even though there is times

when

> I can barely walk on my own.. I NEED to walk. Besides, it's all in my

head,

> right?

>

> So basically I guess he thinks I am a hypocondriac, even though I have had

> two AOSD diagnosises.

>

> I really really can't deal with this right now. It's not worth the fight

to

> me anymore. I've lost the will to fight this. I'm giving up on doctors.

No

> more Rhuematologists. I'll live with it as long as I can, and if the time

> comes that I can't bear it any longer... I will cross that bridge when I

come

> to it.

>

> Thanks for the friendship and the encouragement and advice. I wish all of

> you the best in life

>

> Lauri

>

February 7, 2003

Dearest Lauri,

I am truly sorry. I am " speechless " and I am feeling badly and read your

letter with tears. Just know that you are very cared about here Lauri and

we really do understand, and like Melt said, " we don't want to badger you " ,

but just want to help and talk. I would never want to lose you here as a

much valued member of this support group Laurie. With much love.

Love,Sue #2

-- Re: My goodbye to the group

Lauri can I call you? My email is newme@.... I won't badger you I

just feel heartsick for you and do understand. With love, Melt

My goodbye to the group

> Everyone

>

> It's time for me to say goodbye to the group. Needless to say, my doctors

> visit did not go well.

>

> I've basically been told that my pain and problems are in my head. The

rest

> of it is due to Fibromyalgia.

>

> I tried, I really tried to hold my ground. I told him that since I

started

> the 150mgs of Efexxor with the 30mg remeron " boost " that my fibro symptoms

> had disappeared. I'm sleeping well, my tenderness on touch is gone.

>

> What I do have, and what I do have very badly is joint pain. Depending on

> whatever joint I might have depended on that day, the pain is

excruciating.

> The pain in my shoulders lately has been beyond belief lately. I've had

> swelling in my fingers, my wrist and my ankles but he told me that I must

> have imagined it. He told me that it was all in my mind, even though I

asked

> my husband whether it was swollen and he said yes.

>

> I told him the pain I am going through is the same pain that I was coping

> with almost 3 yrs ago when I was first diagnosed. I told him I developed

the

> fibro about 18 months into getting sick and there was a distinct

difference

> in the types of pain. The fibro type is gone, the stills type is still

there

> with a vengence.

>

> He told me the following reasons why I can't possibly be suffering from

> stills - He put me on Prednisone for a week and it didn't help. Everyone

> that has Stills gets instant relief from prednisone. The one time he took

my

> blood my SED rate wasn't through the roof. Everyone with stills has a SED

> rate through the roof. He said he looked at my joints and they look fine.

> He only " looked " at my knuckles and that was about 30 seconds and all he

did

> was bend them back and forth. He told me I can't possibly have stills

since

> I didn't scream in pain. I couldn't have stills because I didn't have a

> fever the first trip. He took my temp. again and it was 99.3 but that

wasn't

> enough. People with stills are sick, sick people.

>

> He will not renew my handicap permit because even though there is times

when

> I can barely walk on my own.. I NEED to walk. Besides, it's all in my

head,

> right?

>

> So basically I guess he thinks I am a hypocondriac, even though I have had

> two AOSD diagnosises.

>

> I really really can't deal with this right now. It's not worth the fight

to

> me anymore. I've lost the will to fight this. I'm giving up on doctors.

No

> more Rhuematologists. I'll live with it as long as I can, and if the time

> comes that I can't bear it any longer... I will cross that bridge when I

come

> to it.

>

> Thanks for the friendship and the encouragement and advice. I wish all of

> you the best in life

>

> Lauri

>

February 7, 2003

Dearest Lauri,

I am truly sorry. I am " speechless " and I am feeling badly and read your

letter with tears. Just know that you are very cared about here Lauri and

we really do understand, and like Melt said, " we don't want to badger you " ,

but just want to help and talk. I would never want to lose you here as a

much valued member of this support group Laurie. With much love.

Love,Sue #2

-- Re: My goodbye to the group

Lauri can I call you? My email is newme@.... I won't badger you I

just feel heartsick for you and do understand. With love, Melt

My goodbye to the group

> Everyone

>

> It's time for me to say goodbye to the group. Needless to say, my doctors

> visit did not go well.

>

> I've basically been told that my pain and problems are in my head. The

rest

> of it is due to Fibromyalgia.

>

> I tried, I really tried to hold my ground. I told him that since I

started

> the 150mgs of Efexxor with the 30mg remeron " boost " that my fibro symptoms

> had disappeared. I'm sleeping well, my tenderness on touch is gone.

>

> What I do have, and what I do have very badly is joint pain. Depending on

> whatever joint I might have depended on that day, the pain is

excruciating.

> The pain in my shoulders lately has been beyond belief lately. I've had

> swelling in my fingers, my wrist and my ankles but he told me that I must

> have imagined it. He told me that it was all in my mind, even though I

asked

> my husband whether it was swollen and he said yes.

>

> I told him the pain I am going through is the same pain that I was coping

> with almost 3 yrs ago when I was first diagnosed. I told him I developed

the

> fibro about 18 months into getting sick and there was a distinct

difference

> in the types of pain. The fibro type is gone, the stills type is still

there

> with a vengence.

>

> He told me the following reasons why I can't possibly be suffering from

> stills - He put me on Prednisone for a week and it didn't help. Everyone

> that has Stills gets instant relief from prednisone. The one time he took

my

> blood my SED rate wasn't through the roof. Everyone with stills has a SED

> rate through the roof. He said he looked at my joints and they look fine.

> He only " looked " at my knuckles and that was about 30 seconds and all he

did

> was bend them back and forth. He told me I can't possibly have stills

since

> I didn't scream in pain. I couldn't have stills because I didn't have a

> fever the first trip. He took my temp. again and it was 99.3 but that

wasn't

> enough. People with stills are sick, sick people.

>

> He will not renew my handicap permit because even though there is times

when

> I can barely walk on my own.. I NEED to walk. Besides, it's all in my

head,

> right?

>

> So basically I guess he thinks I am a hypocondriac, even though I have had

> two AOSD diagnosises.

>

> I really really can't deal with this right now. It's not worth the fight

to

> me anymore. I've lost the will to fight this. I'm giving up on doctors.

No

> more Rhuematologists. I'll live with it as long as I can, and if the time

> comes that I can't bear it any longer... I will cross that bridge when I

come

> to it.

>

> Thanks for the friendship and the encouragement and advice. I wish all of

> you the best in life

>

> Lauri

>

February 7, 2003

Dear Lauri,

I know that you need to do what ever you feel is best for you, but, as so many

others have told you, Stills is a very individual illness. My husband Don is

the one dx'd and it scares him to read these posts from everyone because it

seems that everyone who has had this disease is soooo much sicker than he is.

Since his initial onset he has been doing great, even has been working his job

in heavy construction and helping me run our karaoke business on the weekends.

So maybe he isn't sick enough to have Still's either??!! I think that a Dr.

telling you that you couldn't have this " dragon " simply because you are " not

sick enough " is ridiculous! I read the emails from everyone everyday for him

and pass along or save the ones I think are relevent to him. I know that I for

one enjoy your participation in this group, if for no other reason than you are

a great person to listen to. Since there is no accurate test for Still's, how

can anyone be absolutley certain they have it or not??!! Please don't give up

on the group or yourself. If we all quit, where would we be? You are cared

about!

Sincerly,

Don and Kary Loveall

Wenatchee, Wa

>

--

Don and Kary

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February 7, 2003

Dear Laurie,

Please dont give up on yourself..this dr dosnt know anything...who

is he to tell you that its all in your head..Im sorry Im just so

angry at him..How much predisone did he put you on to see if it

worked....every one responds differently..when I was first dx I had

to be increased to 85 mg. a day before I had ANY relief...so he

dosnt know what he talking about.. My heart goes out to you, but

please go to another dr. dont give up because then things will get

worse..I know it seems so bad right now but please reach out to

anyone of us and we will be there for you..You already had 2 dx of

stills can you go back to one of those drs.? or find another one..I

know its so hard and frustrating but please everyones symptoms vary

thats why its so hard to truly dx this " dragon " . You have to weed

everything else out first..again he dosnt know what hes talking

about and dont let him get to you. I know you feel very defeated and

tired right now, but please take all our support and know that we

care very much about you.

Please know that my prayers are with you

take care

love Pat from Ma.

He told me that it was all in my mind, even though I asked

> my husband whether it was swollen and he said yes.

> - He put me on Prednisone for a week and it didn't help.

Everyone

> that has Stills gets instant relief from prednisone.

>

February 8, 2003

Dearest Laurie< Though I do not know you and am new to the group, I just want to

say that you are the only one that knows your body! No doctor should be telling

you how you feel or that its in your head! Everyone responds differently to

treatment and medication. Everyone's symptoms are a somewhat different. Don't

give up. Right now you are very emotional having met with this person. It is not

a good time to make desicions. Give it a few days, listen to the support and

encouragement from your friends. When you feeling more level, then make plans

and desicions. I hope for two for you-that you stay a member of this group and

that you do find a caring doctor! Hugs, from MA.

My goodbye to the group

Everyone

It's time for me to say goodbye to the group. Needless to say, my doctors

visit did not go well.

I've basically been told that my pain and problems are in my head. The rest

of it is due to Fibromyalgia.

I tried, I really tried to hold my ground. I told him that since I started

the 150mgs of Efexxor with the 30mg remeron " boost " that my fibro symptoms

had disappeared. I'm sleeping well, my tenderness on touch is gone.

What I do have, and what I do have very badly is joint pain. Depending on

whatever joint I might have depended on that day, the pain is excruciating.

The pain in my shoulders lately has been beyond belief lately. I've had

swelling in my fingers, my wrist and my ankles but he told me that I must

have imagined it. He told me that it was all in my mind, even though I asked

my husband whether it was swollen and he said yes.

I told him the pain I am going through is the same pain that I was coping

with almost 3 yrs ago when I was first diagnosed. I told him I developed the

fibro about 18 months into getting sick and there was a distinct difference

in the types of pain. The fibro type is gone, the stills type is still there

with a vengence.

He told me the following reasons why I can't possibly be suffering from

stills - He put me on Prednisone for a week and it didn't help. Everyone

that has Stills gets instant relief from prednisone. The one time he took my

blood my SED rate wasn't through the roof. Everyone with stills has a SED

rate through the roof. He said he looked at my joints and they look fine.

He only " looked " at my knuckles and that was about 30 seconds and all he did

was bend them back and forth. He told me I can't possibly have stills since

I didn't scream in pain. I couldn't have stills because I didn't have a

fever the first trip. He took my temp. again and it was 99.3 but that wasn't

enough. People with stills are sick, sick people.

He will not renew my handicap permit because even though there is times when

I can barely walk on my own.. I NEED to walk. Besides, it's all in my head,

right?

So basically I guess he thinks I am a hypocondriac, even though I have had

two AOSD diagnosises.

I really really can't deal with this right now. It's not worth the fight to

me anymore. I've lost the will to fight this. I'm giving up on doctors. No

more Rhuematologists. I'll live with it as long as I can, and if the time

comes that I can't bear it any longer... I will cross that bridge when I come

to it.

Thanks for the friendship and the encouragement and advice. I wish all of

you the best in life

Lauri

February 9, 2003

Dear Laurie;

Do not give up I spent two pluss years tryig to find out what was up with me

I also had a doc that told my ex wife not me it was all in my head then one

that could find nothing but knew some thing was wrong then one who tried but

then ended up sending me to Stanford univesity hospital and that is were I

was finaly given a name for what I had it was stills yes it is hard to stay

with it but youknow what you fel and what your body is doing and like every

thing in the medical field a second opion is never a bad idaea as most

doctors do not know much if any thing about stills and what it is or dose so

please do not give up as if it is still you can never give up ask any of us

out here they will say the same I am sure and when I did give up I got

e-mails full telling me not to and to move on and some were very helpfull

others just made me feel loved with the lose of my wife over this no never

give up you are worth fighting for and you have to fight for yorur self as

if you do not know one other will so take theis to heart you go girl give m

hell make them listen and make them earn the dollar from you

Marty

February 9, 2003