Re: Hello - new member, my Still's story

[Guest guest]

In a message dated 5/7/2006 9:25:16 P.M. Eastern Daylight Time,

linus6652@... writes:

Welcome to the group Tammy,

Sorry to hear about you encounter with the dragon. I am sure you will find a

solution that you are OK with.

Hope you have a nice day.

Sunil

Thank you. :-)

Tammy

[Guest guest]

i totally understand, i am 32, and have dealt with this disease on and off my

whole life, i too have thrown away all my meds,before, but now have to admit it

wasnt smart.you really need to find a good rheumatologist, and dont settle until

your comfortable with them, good luck and you can email me personally anytime at

gigs1019@...,

ladiebutterfly77@... wrote: I was a member of the Support Group a long,

long time ago. My name is Tammy

and I'm 29 years old. I was diagnosed with Still's when I was 19 years old, 2

weeks before my 20th birthday.

[Guest guest]

I have a really good rheumatologist - he's only one of 3 in my county

and he's by far the best out of all of them. I really like him,

although I'm sure he'll bawl me out for not coming in to see him like I

should or taking my meds. Thanks for the understanding. I get so sick

of taking pills I can't stand it. When I was taking all those pills a

day I felt so ... ICK, ya know, like a walking pharmacy.

Tammy

ladiebutterfly77@...

>

> i totally understand, i am 32, and have dealt with this disease on

and off my whole life, i too have thrown away all my meds,before, but

now have to admit it wasnt smart.you really need to find a good

rheumatologist, and dont settle until your comfortable with them, good

luck and you can email me personally anytime at gigs1019@...,

>

[Guest guest]

Welcome to the group Tammy,

Sorry to hear about you encounter with the dragon. I am sure you will find a

solution that you are OK with.

Hope you have a nice day.

Sunil

ladiebutterfly77@... wrote:

I was a member of the Support Group a long, long time ago. My name is Tammy

and I'm 29 years old. I was diagnosed with Still's when I was 19 years old, 2

weeks before my 20th birthday.

_ladiebutterfly77@..._ (mailto:ladiebutterfly77@...)

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ion by any person following the information offered or provided within this

support form.

[Guest guest]

Hi Tammy,

Your story sounds very familiar. I have been battling this dragon since I

was a small kid--DXed at 12. I am now 39. I can truthfully say I share your

anger at times but where does it get us? Really? Just adding more stress to

the situation which we do not need.

I have struggled with the thought of toxic drugs and the side effects from

them but after a dear friend pointed out that I was given life from our

creator, I should do whatever it takes to be able to live.--I don't mean to

seem like I'm preaching or anything of that sort. I know each of us view God

and worship differently and I always try to be respectful of this fact.--And

if this meant taking the pills I hate to take so much, then so be it. I was

given two special gifts and those gifts are my two sons. I must do my part

to feel better so I can help my husband raise them.

I too have had weak legs. I have experienced paralysis on several occasions.

It was very scary. And the Dr's could not find the cause since they knew

nothing about Still's. And like you, if they couldn't find a cause easily, I

was sent off with drugs.

I have been on a low dose of Prednisone for over a year now with very little

side effects. The lower the dose the better off a person is. I am at 5 mg

and hoping to wean down to 2.5 mg very soon. I am also taking 15 mg of

Methotrexate weekly. I am not doing well so my Dr. may have to add another

drug to the mix. We must take it as it comes, and deal with it the best way

we can.

Have you sought counseling at any time since you were diagnosed? Grief

counseling is one thing that seems to help. Do you know that we grieve for

our loss just like we grieve for a loved one we have said good bye to in

death? Maybe counseling of some kind would be a benefit to you--to help you

with this monster dragon and the drugs we have to take. Just a thought.

Feel free to use private E-mail if you need a listening ear and

understanding.

It really does help to know that others know exactly how we feel at that

moment.

Hang in there. I am glad you are back with the group--with us. You aren't

alone anymore in this fight. And it's a battle of a lifetime.

I read where you stated your husband isn't taking this very well. Sometimes

when there is a lack of knowledge, there is fear. Maybe he is as scared as

you are but his pride and his make-up as a male is standing in his way to

ask questions. Do you think he would be open to go with you to see your RD?

Maybe he would feel better if he could ask your Dr. questions. I know my

husband benefited from seeing my Dr. He asked questions, and now he is one

of the most understanding and kind people in my life. He says we're both

battling this together.

Welcome back to the group. You are where you belong now.

, Beautiful state of Oregon USA

>

> I was a member of the Support Group a long, long time ago. My name is

> Tammy

> and I'm 29 years old. I was diagnosed with Still's when I was 19 years

> old, 2

> weeks before my 20th birthday.

>

>

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

In a message dated 5/7/2006 11:49:30 P.M. Eastern Daylight Time,

ladyspeed@... writes:

Hi Tammy,

Your story sounds very familiar. I have been battling this dragon since I

was a small kid--DXed at 12. I am now 39. I can truthfully say I share your

anger at times but where does it get us? Really? Just adding more stress to

the situation which we do not need.

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

That's true. The worst part of not having any meds are the stiffness, the

weakness, the sleep deprivation, and no one to blame it on but myself. I'm

going to fix that, though.

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

I have struggled with the thought of toxic drugs and the side effects from

them but after a dear friend pointed out that I was given life from our

creator, I should do whatever it takes to be able to live.--I don't mean to

seem like I'm preaching or anything of that sort. I know each of us view God

and worship differently and I always try to be respectful of this fact.--And

if this meant taking the pills I hate to take so much, then so be it. I was

given two special gifts and those gifts are my two sons. I must do my part

to feel better so I can help my husband raise them.

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

I don't even want to think about having children. The thought terrifies me.

I don't even know if I can have children. One of my ovaries is dead. My gyn

thinks the cause is either the pred or the extremely high fever that came over

me suddenly with my onset - either way, the Still's is the root of it. He

says I still can, but my chances of conceiving are very limited. I don't even

know if I want kids, honestly.

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

I too have had weak legs. I have experienced paralysis on several occasions.

It was very scary. And the Dr's could not find the cause since they knew

nothing about Still's. And like you, if they couldn't find a cause easily, I

was sent off with drugs.

---------

I've been paralyzed before, it is very, very scary. I've been blind before

from the steroid-induced diabetes, as well. I was blind for about 2 weeks

before the doctor found out what the problem was. Thank goodness too - I think

I

could deal better being unable to walk than unable to see. I'm a writer and

an artist, even if I was unable to walk I could still do everything I loved,

but if I'm unable to see, I'd go insane. I think I'd rather be dead than blind.

What's with these doctors that just want to dope you up and send you on your

way? I've come across more damn doctors with that mentality I just wanted to

scream. I felt like they just wanted to get me out of their office because

they didn't want to admit they couldn't help me.

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

I have been on a low dose of Prednisone for over a year now with very little

side effects. The lower the dose the better off a person is. I am at 5 mg

and hoping to wean down to 2.5 mg very soon. I am also taking 15 mg of

Methotrexate weekly. I am not doing well so my Dr. may have to add another

drug to the mix. We must take it as it comes, and deal with it the best way

we can.

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

I thnk that's all anybody can do. Deal with things as they come. I've never

been put on Methotrexate. I don't even really know what it is. Is it a

steroid?

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

Have you sought counseling at any time since you were diagnosed? Grief

counseling is one thing that seems to help. Do you know that we grieve for

our loss just like we grieve for a loved one we have said good bye to in

death? Maybe counseling of some kind would be a benefit to you--to help you

with this monster dragon and the drugs we have to take. Just a thought.

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

I was actually forced into group counseling after a suicide attempt. I was

in there with about 10 other women with different mental illnesses. It wasn't

helping me worth a darn. I finally just quit going. The counselor didn't know

what to say to me when I started ranting and raving and the other women in

there just stared at me like I was a 2-headed alien or something. I've had

this for 10 years, if I hadn't learned to cope with it by now, I don't think

there's anything a therapist or counselor could do to help me cope.

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

Feel free to use private E-mail if you need a listening ear and

understanding.

It really does help to know that others know exactly how we feel at that

moment.

Hang in there. I am glad you are back with the group--with us. You aren't

alone anymore in this fight. And it's a battle of a lifetime.

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

Thank you. :-) The last time I was in this support group, Tom was the head

of it. I don't think it was a Yahoo Group, though. Is he still around?

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

I read where you stated your husband isn't taking this very well. Sometimes

when there is a lack of knowledge, there is fear. Maybe he is as scared as

you are but his pride and his make-up as a male is standing in his way to

ask questions. Do you think he would be open to go with you to see your RD?

Maybe he would feel better if he could ask your Dr. questions. I know my

husband benefited from seeing my Dr. He asked questions, and now he is one

of the most understanding and kind people in my life. He says we're both

battling this together.

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

He's never even gone to the doctor with me. I can't drive and he refuses to

take me. My sister takes me. Every time I even bring up my illness, he calls

it 'bullshit' - excuse my language, but that's what he says. He thinks I'm

just being lazy. I don't think he even wants to understand or even know

anything about it. I've tried to insist he go with me - I'm going today as a

matter

of fact, and at first he said he'd take me, but last night he asked me what

dr I had to go see and I told him and he flat out refused to take me. I don't

know what to do. It's gotten to the point I'm contemplating the D word.

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

Welcome back to the group. You are where you belong now.

-----------

Thank you. :-) I hope I can make some good friends here.

Tammy

[Guest guest]

Tammy,

Sorry, I got a little confused with this email... was it you that said your

hubby wouldn't take you to the doc? Just wondering, b/c my ex used to call me a

hypochondriac. Say things like, there's nothing wrong with you, get UP! Or,

you don't look sick and the doctor doesn't even know what it is!

Okay... this was even after I was hospitalized for fluid around my heart

(Still's related) and was in CCU for 8 days. Sounds like your hubby is in some

serious denial and you need his support more than you know. You need to be able

to share your frustrations w/him and know he's there for you. Do you have one

of the brochures from the foundation to show him? Help him understand even a

little?

Wow, what a source of strength you two could be for each other! Makes the

battle that much easier....unfortunately, for me, it didn't work out (notice I

used the term " ex " earlier), but my prayer for you is that he'll come around.

Gail

He's never even gone to the doctor with me. I can't drive and he refuses to

take me. My sister takes me. Every time I even bring up my illness, he calls

it 'bullshit' - excuse my language, but that's what he says. He thinks I'm

just being lazy. I don't think he even wants to understand or even know

anything about it. I've tried to insist he go with me - I'm going today as a

matter

of fact, and at first he said he'd take me, but last night he asked me what

dr I had to go see and I told him and he flat out refused to take me. I don't

know what to do. It's gotten to the point I'm contemplating the D word.

ladiebutterfly77@... wrote:

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

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

Get amazing travel prices for air and hotel in one click on Yahoo! FareChase

[Guest guest]

Tammy:

I to am sorry you have to go threw this .I also did only my ex acted

supportive tell I could not work any more then when I could not give her

an paycheck I was no longer any good to her so she divorced me and left

me with nothing 9 she has a good lawyer and I got what I could afford it

seams you do get what you pay for in that case LOL)

What Gail said I will back together you are a force to deal with! it

really dose make the fight easier when they stand with you not just at

first but the whole way threw it all a life long loving partner who

cares about you the person period.

Again this is why I always push counseling for every one in the home of

the person with this dam dragon it can never hurt but with out it that

is just what happens it hurts from no understanding or compassion

Hugs all

Marty

Re: Hello - new member, my Still's story

Tammy,

Sorry, I got a little confused with this email... was it you that said

your hubby wouldn't take you to the doc? Just wondering, b/c my ex used

to call me a hypochondriac. Say things like, there's nothing wrong with

you, get UP! Or, you don't look sick and the doctor doesn't even know

what it is!

Okay... this was even after I was hospitalized for fluid around my

heart (Still's related) and was in CCU for 8 days. Sounds like your

hubby is in some serious denial and you need his support more than you

know. You need to be able to share your frustrations w/him and know

he's there for you. Do you have one of the brochures from the

foundation to show him? Help him understand even a little?

Wow, what a source of strength you two could be for each other! Makes

the battle that much easier....unfortunately, for me, it didn't work out

(notice I used the term " ex " earlier), but my prayer for you is that

he'll come around.

Gail

He's never even gone to the doctor with me. I can't drive and he

refuses to

take me. My sister takes me. Every time I even bring up my illness, he

calls

it 'bullshit' - excuse my language, but that's what he says. He thinks

I'm

just being lazy. I don't think he even wants to understand or even know

anything about it. I've tried to insist he go with me - I'm going today

as a matter

of fact, and at first he said he'd take me, but last night he asked me

what

dr I had to go see and I told him and he flat out refused to take me. I

don't

know what to do. It's gotten to the point I'm contemplating the D word.

ladiebutterfly77@... wrote:

_____

[Guest guest]

Hi Tammy,

Just wanted to chime in on your question about Methotrexate (MTX).

It's a DMARD (disease modifying anti-rheumatic drug), considered a

" steroid sparing " drug because it can help you eliminate or at least

greatly reduce the amount of prednisone/other steroids you need to

take to get the inflammation in control. MTX is used in really,

really high doses for chemotherapy; it's used in really low doses for

Rheumatoid Arthritis, Lyme Disease, Still's, and other

inflammatory-related/auto-immune problems. I THINK it's considered an

immunosuppressant, but I'm not positive about this. I take it in pill

form once per week, then take folic acid for 5 days to help get the

MTX out of my system until the next dose. Unfortunately, for me,

although it works really well on my Still's joint pain, once I go over

10 or 15 mg/week, I get really bad side effects (headache, diarrhea,

hair loss, horrible mind-numbing fatigue, mouth sores). If I can't

get off prednisone without a higher dose of MTX, I'm going to try the

injectible type--apparently it has no or at least much fewer side effects.

I'm totally with you on the " this sucks " page. I saw a counselor last

fall, about 6 months after I first got this, and told her that if I

wound up immobilized and in chronic pain, I would put a bullet in my

head. That said, I'm not going to give up yet--I'll keep trying the

mix and match and wait drug game and hope that 5 or 10 years from now

some mad scientist will be able to inject me with a super-stem-cell

that will not only kill the dragon but will lypo my thighs and make my

wrinkles disappear.

in Maine

> I thnk that's all anybody can do. Deal with things as they come.

I've never

> been put on Methotrexate. I don't even really know what it is. Is it a

> steroid?

>

[Guest guest]

Sorry about the confusion. Yeah, he wouldn't take me, but he's agreed to take me

on my next visit. :-) I'm happy about that. I guess when I came home with 300

bucks worth of meds, he decided to started taking my Still's seriously...lol (I

had a really good day at the RD, I'm going to post my day in another post.)

That sucks about your ex. My 2nd husband was completely understanding, he bought

my meds, made sure I took them and I didn't do anything to make myself feel

worse. It was my fault that marriage failed. It's one of those things that you

really don't know what you've got until it's gone.

Anyway, I'm glad you got away from him.

Laterz!

~Tammy~

Re: Hello - new member, my Still's story

Tammy,

Sorry, I got a little confused with this email... was it you that said your

hubby wouldn't take you to the doc? Just wondering, b/c my ex used to call me a

hypochondriac. Say things like, there's nothing wrong with you, get UP! Or,

you don't look sick and the doctor doesn't even know what it is!

Okay... this was even after I was hospitalized for fluid around my heart

(Still's related) and was in CCU for 8 days. Sounds like your hubby is in some

serious denial and you need his support more than you know. You need to be able

to share your frustrations w/him and know he's there for you. Do you have one

of the brochures from the foundation to show him? Help him understand even a

little?

Wow, what a source of strength you two could be for each other! Makes the

battle that much easier....unfortunately, for me, it didn't work out (notice I

used the term " ex " earlier), but my prayer for you is that he'll come around.

Gail

He's never even gone to the doctor with me. I can't drive and he refuses to

take me. My sister takes me. Every time I even bring up my illness, he calls

it 'bullshit' - excuse my language, but that's what he says. He thinks I'm

just being lazy. I don't think he even wants to understand or even know

anything about it. I've tried to insist he go with me - I'm going today as a

matter

of fact, and at first he said he'd take me, but last night he asked me what

dr I had to go see and I told him and he flat out refused to take me. I don't

know what to do. It's gotten to the point I'm contemplating the D word.

ladiebutterfly77@... wrote:

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

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

Get amazing travel prices for air and hotel in one click on Yahoo! FareChase

[Guest guest]

I really think he's starting to. I hope so. He's sick himself and you'd think if

anyone would be understand it would be another person that's suffering with

their own disease. That sucks about your ex. My grandmother had a really bad

form of RA and when it onset in her, my grandfather left her with 3 kids, ages 2

to 10. I know what she went through. Some people just shouldn't get married at

all if they don't plan on sticking by their vows.

Laterz!

~Tammy~

Re: Hello - new member, my Still's story

Tammy,

Sorry, I got a little confused with this email... was it you that said

your hubby wouldn't take you to the doc? Just wondering, b/c my ex used

to call me a hypochondriac. Say things like, there's nothing wrong with

you, get UP! Or, you don't look sick and the doctor doesn't even know

what it is!

Okay... this was even after I was hospitalized for fluid around my

heart (Still's related) and was in CCU for 8 days. Sounds like your

hubby is in some serious denial and you need his support more than you

know. You need to be able to share your frustrations w/him and know

he's there for you. Do you have one of the brochures from the

foundation to show him? Help him understand even a little?

Wow, what a source of strength you two could be for each other! Makes

the battle that much easier....unfortunately, for me, it didn't work out

(notice I used the term " ex " earlier), but my prayer for you is that

he'll come around.

Gail

He's never even gone to the doctor with me. I can't drive and he

refuses to

take me. My sister takes me. Every time I even bring up my illness, he

calls

it 'bullshit' - excuse my language, but that's what he says. He thinks

I'm

just being lazy. I don't think he even wants to understand or even know

anything about it. I've tried to insist he go with me - I'm going today

as a matter

of fact, and at first he said he'd take me, but last night he asked me

what

dr I had to go see and I told him and he flat out refused to take me. I

don't

know what to do. It's gotten to the point I'm contemplating the D word.

ladiebutterfly77@... wrote:

_____

[Guest guest]

Tammy;

I really hope that he is coming around .I do agree with you some should

never marry if they do not plan to also take for real the worse,

sickness and poor part as life dose not just give you the better part

only or tell it no longer feels good for me deal, my ex when she was

really sick I stood by her side no matter what and for that I sleep well

at night and I am glad I did as I would be less of a man if I had not

Hugs all

Marty

Re: Hello - new member, my Still's story

I really think he's starting to. I hope so. He's sick himself and you'd

think if anyone would be understand it would be another person that's

suffering with their own disease. That sucks about your ex. My

grandmother had a really bad form of RA and when it onset in her, my

grandfather left her with 3 kids, ages 2 to 10. I know what she went

through. Some people just shouldn't get married at all if they don't

plan on sticking by their vows.

Laterz!

~Tammy~

_____

[Guest guest]

Hi Tammy,

Maybe your husband is finally seeing for a fact that you are sick! YES!

Sometimes it is so hard for the other to " see " what the other is going

through. I will be keeping you and your husband in my prayers.

You are right when you said some people should never marry. They miss the

part about marriage mates becoming one flesh--meaning that you stop living

for just yourself. You live as one in the sense that if you love yourself

to the point of taking care of your body, you are willing to do the same for

your mate. And they miss the mark in the compassion, empathy and love

department when they fail to look after and help their mate. We, as humans,

we are gifted with the ability to love and care for each other yet it seems

in the world today that natural affection is cooling off. A lot of people

fall short of this. Why? Maybe the forefathers were right when they said

this would happen. Maybe since they were tuned into God more than the

world is today, they understood more than we do today. I am so thankful to

have such a caring and understanding husband. He

looks past the illness and sees the person I am. I am so blessed and I try

not to forget that there are two of us and I return the support and love as

much as I can while living in this sad world.

Sometimes we don't realize what a good thing we have until it's gone. Sad

but true. All we can do, is learn from the experience and correct the path

we took, and try not to repeat it in the future.

Sounds like you had a good appointment with your Dr? Humira has proven to

help. I know of one person, who has RA and she is out of the wheel chair now

and walking. It has really helped her.

I hope you can benefit from it also.---Looking forward to reading your post

about your Dr's visit:-)

, Oregon

>

> Sorry about the confusion. Yeah, he wouldn't take me, but he's agreed to

> take me on my next visit. :-) I'm happy about that. I guess when I came home

> with 300 bucks worth of meds, he decided to started taking my Still's

> seriously...lol (I had a really good day at the RD, I'm going to post my day

> in another post.)

>

> Laterz!

>

> ~Tammy~

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

;

Today most only think about them self's. The sad part is for years now

that is what there taught in school about how it feels to them only. Not

how to be a good citizen a family member or to be a part of some thing

with others but only about how it feels to them self's. A break down in

the world and yes in the founding values of the United States God and

the Ten Commandments

Re: Hello - new member, my Still's story

You are right when you said some people should never marry. They miss

the

part about marriage mates becoming one flesh

_____

[Guest guest]

I think he is finally seeing the light - so to speak...lol He's sick himself, so

sometimes I think he's so wrapped up in his own misery he fails to see mine.

He's been so sweet to me since I came home yesterday. Wonder how long it's going

to last...

Laterz!

~Tammy~

Re: Hello - new member, my Still's story

Hi Tammy,

Maybe your husband is finally seeing for a fact that you are sick! YES!

Sometimes it is so hard for the other to " see " what the other is going

through. I will be keeping you and your husband in my prayers.

You are right when you said some people should never marry. They miss the

part about marriage mates becoming one flesh--meaning that you stop living

for just yourself. You live as one in the sense that if you love yourself

to the point of taking care of your body, you are willing to do the same for

your mate. And they miss the mark in the compassion, empathy and love

department when they fail to look after and help their mate. We, as humans,

we are gifted with the ability to love and care for each other yet it seems

in the world today that natural affection is cooling off. A lot of people

fall short of this. Why? Maybe the forefathers were right when they said

this would happen. Maybe since they were tuned into God more than the

world is today, they understood more than we do today. I am so thankful to

have such a caring and understanding husband. He

looks past the illness and sees the person I am. I am so blessed and I try

not to forget that there are two of us and I return the support and love as

much as I can while living in this sad world.

Sometimes we don't realize what a good thing we have until it's gone. Sad

but true. All we can do, is learn from the experience and correct the path

we took, and try not to repeat it in the future.

Sounds like you had a good appointment with your Dr? Humira has proven to

help. I know of one person, who has RA and she is out of the wheel chair now

and walking. It has really helped her.

I hope you can benefit from it also.---Looking forward to reading your post

about your Dr's visit:-)

, Oregon

>

> Sorry about the confusion. Yeah, he wouldn't take me, but he's agreed to

> take me on my next visit. :-) I'm happy about that. I guess when I came home

> with 300 bucks worth of meds, he decided to started taking my Still's

> seriously...lol (I had a really good day at the RD, I'm going to post my day

> in another post.)

>

> Laterz!

>

> ~Tammy~

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

In a message dated 5/10/2006 10:37:13 P.M. Eastern Daylight Time,

sharon@... writes:

Tammy, my heart goes out to you. It is really hard to confront this

disease and deal with it. I also try to ignore it with constant pain.

I am 33 and have had stills since I was 11. I had a few remissions in

between but still had the RA part of the disease. This is a great

group. We are here to work thru things together so sound off whenever

you need too. It really sounds like you have had a really hard time ,

sometimes we need a mental break just to get thru all we have to deal

with. I read a lot of the posts when I can and answer when I can. I

have a terrible time at the computer due to my back and my hands.

Today I could barely lift my arm to brush my teeth. I will be taking

humira as soon as it is sent to my house. I completely know where you

are coming from. If you ever need to talk you can always email me

directly at sharon@.... Feel better Sweety,

Sharon xxoo

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

Thanks, :-) I hope it helps.

I was waiting on my insurance to preapprove the Humira and it approved it! I

get my first shot Sunday.

Tammy

[Guest guest]

Tammy, my heart goes out to you. It is really hard to confront this

disease and deal with it. I also try to ignore it with constant pain.

I am 33 and have had stills since I was 11. I had a few remissions in

between but still had the RA part of the disease. This is a great

group. We are here to work thru things together so sound off whenever

you need too. It really sounds like you have had a really hard time ,

sometimes we need a mental break just to get thru all we have to deal

with. I read a lot of the posts when I can and answer when I can. I

have a terrible time at the computer due to my back and my hands.

Today I could barely lift my arm to brush my teeth. I will be taking

humira as soon as it is sent to my house. I completely know where you

are coming from. If you ever need to talk you can always email me

directly at sharon@.... Feel better Sweety,

Sharon xxoo

> I was a member of the Support Group a long, long time ago. My name

> is Tammy

> and I'm 29 years old. I was diagnosed with Still's when I was 19

> years old, 2

> weeks before my 20th birthday.

>

> How it started was I had an explained pain and numbness in my

> right leg that

> come on very suddenly. I was walking down the sidewalk with my

> mother and

> all of a sudden, bam, there it was and I couldn't walk. The next

> day, it was

> still there and I fell down in my living room floor, unable to

> move. My

> boyfriend put me in bed and the next morning I woke up and woke

> him up, complaining

> I didn't feel well. He said he felt the heat off me all the way

> over on his

> side of the bed and he checked my temp. It was 106. He called his

> doctor. (I

> didn't have a regular doctor, so he did the only thing he could

> think to do.)

> The doctor advised that he give me 3 Tylenol and in 4 hours, give

> me 2 Advil,

> going back and forth like that every 4 hours until the fever was

> down. After

> a few days of this, my fever still wasn't broken and I was very

> very weak

> and in a lot of pain. He took me to the ER, where they didn't know

> what to do

> for me. They gave me some pain pills and sent me home. A few more

> days later,

> I still wasn't any better, so he started taking me from doctor to

> doctor,

> clinic to clinic to try to get me well. I wasn't able to do

> anything - all I

> could do was lay in bed. I couldn't eat without it coming back

> up... I couldn't

> even hold water down.

>

> Finally we find a doctor that admitted he couldn't help me - this

> was after

> about 5 or 6 just gave me pills and sent me home and about a month

> or so

> after I got the pain in my leg. He put me in the hospital. I stayed

> in there for

> 14 days while I was turned into a human science project. The

> doctors there

> that were trying to treat me said they had never seen anything

> like it. I had

> ever test imaginable done on me. The main doctor, the head of the

> team of docs

> working on me, had a friend that was a pediatrician, that happened

> to be my

> old pediatrician that treated me when I was a baby and child. The

> pediatrician

> came across my file on his desk, recognized my name and asked my

> permission

> to read it and try to help me. I remembered him and gave him

> permission to

> look in my file. After he read it and talked to me for a really

> long time - he

> must have spent hours in my hospital room talking to me, he told

> me and the

> team that I had AOSD and prescribed treatment.

>

> My treatment was 60 MG of pred twice a day. After a few days on

> it, my fever

> finally broke, I was able to eat and slowly got better. I was

> released a

> week later, able to finally walk again.

>

> After a couple of months, I was still on the same amount of pred. I

> also was

> dealing with the side effects - stomach problems, steroid-induced

> diabetes,

> the swelling...they put me on meds to counteract the side effects.

> Those meds

> had side effects and so on and so on....I was taking around 30

> pills a day

> and was feeling really horribly. I told my doctor that this was

> enough and that

> I couldn't handle all the medications and the side effects. He

> said he

> didn't feel comfortable taking me off the pred - which was the

> root of all the

> other problems. I said ok and never went back to see him.

>

> I weaned myself off the pred and found another doctor. He took me

> off all

> the other meds and gave me an NSAID, a pain pill and a muscle

> relaxer. I

> started on those and about a year or so ago, I quit taking them. I

> quit taking

> everything. I was so sick of pills I couldn't even stand looking

> at them. I

> haven't even been to my doctor in that long.

>

> I haven't taken any meds now regularly in well over a year,

> possibly two. I

> guess I've been trying to ignore that I have this disease. I'm

> constantly in

> pain and I'm tired all the time. I guess I wanted to pretend to be

> normal,

> but it's just not working. I start going back to the dr tomorrow.

> I wanna try

> to get put on a med like Humira or Embrel - something I don't have

> to take

> everyday....I just can't handle taking a whole bunch of pills.

>

> Anyway, that was it. The last 10 years of me dealing with this

> disease, or

> ignoring it.

>

> Tammy

> _ladiebutterfly77@..._ (mailto:ladiebutterfly77@...)

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not

> intended to replace the services of a trained health professional

> or to be a substitute for medical advice of physicians and/or other

> health care professionals. The International Still's Disease

> Foundation is not engaged in rendering medical or professional

> medical services. You should consult your physician on specific

> medical questions, particularly in matters requiring diagnosis or

> medical attention. The International Still's Disease Foundation

> makes no representations or warranties with respect to any

> treatment, action, application, medication or preparation by any

> person following the information offered or provided within this

> support form.

>

> ion by any person following the information offered or provided

> within this support form.

>

>

>

>

>

>

[Guest guest]

In a message dated 5/11/2006 4:46:08 A.M. Eastern Daylight Time,

sharon@... writes:

That is great! let me know how you do on it!

Sharon xxxooo

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

I will. :-)

Tammy

[Guest guest]

That is great! let me know how you do on it!

Sharon xxxooo

>

> In a message dated 5/10/2006 10:37:13 P.M. Eastern Daylight Time,

> sharon@... writes:

>

> Tammy, my heart goes out to you. It is really hard to confront this

> disease and deal with it. I also try to ignore it with constant pain.

> I am 33 and have had stills since I was 11. I had a few remissions in

> between but still had the RA part of the disease. This is a great

> group. We are here to work thru things together so sound off whenever

> you need too. It really sounds like you have had a really hard time ,

> sometimes we need a mental break just to get thru all we have to deal

> with. I read a lot of the posts when I can and answer when I can. I

> have a terrible time at the computer due to my back and my hands.

> Today I could barely lift my arm to brush my teeth. I will be taking

> humira as soon as it is sent to my house. I completely know where you

> are coming from. If you ever need to talk you can always email me

> directly at sharon@.... Feel better Sweety,

> Sharon xxoo

>

>

>

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

>

>

> Thanks, :-) I hope it helps.

>

> I was waiting on my insurance to preapprove the Humira and it

> approved it! I

> get my first shot Sunday.

>

> Tammy

>

>

>

[Guest guest]

This is great news, Tammy. Please let us know how it makes you feel.

Do you know much about this drug? I have been thinking about asking my Dr.

about this or one of the others to add.

, Oregon

>

>

>

> Thanks, :-) I hope it helps.

>

> I was waiting on my insurance to preapprove the Humira and it approved

> it! I

> get my first shot Sunday.

>

> Tammy

>

>

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

In a message dated 5/11/2006 4:56:25 P.M. Eastern Daylight Time,

ladyspeed@... writes:

This is great news, Tammy. Please let us know how it makes you feel.

Do you know much about this drug? I have been thinking about asking my Dr.

about this or one of the others to add.

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

I went ahead and took my first shot yesterday. So far, I don't feel much

different, aside from my hands have quit hurting. It's also very expensive,

thank God for insurance. Without it, the medicine would have cost over $1200 for

a monthly supply, which is 2 syringes.

Tammy