RE: I'm scared!

[Guest guest]

Hello Tracey and welcome here

I know how you fell. When I got this I was not alone but had been

married for 19 years. She divorced me over this and because I was and

could not work any more. So I was by my self and found out I could take

care of me just fine.

What I did have was a mom I checked in with every few days. She lived

about 100 miles from me but if I did not call her she was calling me to

find out if I was okay. She also let me know if she could not get a hold

of me she would send some one out to check on me. I also was doing the

same for her. I know it is scary and one thing I tell every one to do

and so I will to you is get into some counseling for your self. See

stills changes things like way we believe things should be but now as I

said there changed. Living with this is not easy but it can be done and

done some what well be it alone or with some one. I am now with a

wonderful lady who I meet after I had stills .She also is there in more

ways then any one ever was before. Yes I still am fighting stills in

fact it has been very hard and seams to be getting harder with all the

pain I am having again. The one thing I have found out that works for me

is rest when I should and need to, make sure I eat right and go to the

doctors when I should and when I need to. You after all are the best for

knowing what you need.

Stills changes life some but nothing that can not be worked with around

or adjusted for it is all in how you set your mind to handle it and

that's were counseling can come in to the scope of things and help out

with new tools to use and ways to change things

Good luck and do not be afraid we are here for you and each other

Hugs all

Marty

I'm scared!

Hello Everyone,

My name is Tracey. I have been " Lurking by the way " for the past few

days or so and I feel very good about joining the group. I was just

recently diagnosed with Stills aka The Dragon.

[Guest guest]

Hello and welcome.I do remember blackouts and dizzy spells alot,some

unexpained and some were because of weakness from anemia.I Still live in the

same cummunity as my favorite alltime teacher taught me grades 1-5 im 34.I

hope your able to pursue your career.I was precribed a drug called Serc supposed

be for vertigo i think,but it never did work for my symtoms at the time,take

care. d.Canada

I'm scared!

Hello Everyone,

My name is Tracey. I have been " Lurking by the way " for the past few

days or so and I feel very good about joining the group. I was just

recently diagnosed with Stills aka The Dragon. I battled with the

pain

and fever for approximately 2 mos. before a proper diagnosis was

given.

I'm scared because I don't know what to expect in the future. I am a

single 43 year old school teacher and student living in Houston. I

want to become an Elementary School Principal. At the rate I'm going

(with the Dragon) I don't know if I will even be able to begin and

complete

this school year. For the past three weeks I've been on a very low

dosage of methylprednisolone (4mg)and sulfasalazine(2000mg) daily and

there

are days when I feel like I am a prisoner to my bed. My greatest fear

is that one day I will have to depend on someone to take care of me.

I am

very independent and am used to taking care of others. I hope and

pray

that this disease doesn't " overtake me " . Has anyone

experienced " blackouts " ? Before I was PROPERLY diagnosed and even

one

time after that I experienced blackouts. It usually warns me about

60sec. before it happens. I get so dizzy and black spots appear

before

my face. I know what's about to happen and fortunately I have been

able to make it to a place where I can lie down. This is a very

frightening experience!!! There so much more I want to share with

you

guys but I'll end for now.

I'm glad to be a part of this family!!!!

Sincerely,

Scared in Houston

[Guest guest]

Dear Tracey,

hello.I'm Peixin (PX for short) living in singapore.

I have the same fears as you.

I was walking around fine and the next morning i woke up only to

find myself unable to even stand on my own...

for 4 days straight, hospital doctors werent sure wat i got and

couldnt tell me when i could go home, just said " we are running all

the tests to make sure " ... i was very afraid tat i wouldnt walk

again or be free from the pain...

my mom who took care of me from since i was down at home was

similarly scared out of her wits. i was worried that she would tire

herself out over me. so whenever she or anyone was with me, i would

pretend to be strong and keep myself busy eating, or watching TV or

cracking jokes over my rashes. At night when i was alone in the

ward, the tears just came and they wouldnt stop until i was so tired

i dozed off.

i lost my bf of 2.5yrs for a while , though we are back together

now, i dun know if anything else will happen. he's seen a side of me

that he never expected and probably doesnt like... but we are going

on hoping we will last.

i lost my red belt at martial arts too, among other stuff. was

supposed to be preparing for the grading but missed the whole

grading all together.. now due to lack of practice i'll be training

from scratch again.

The dragon has taught me lots, even though it breathes fire and

pain. we cant just count the things we lost, we need to count the

real valuable things we have too.

We'll get stronger, Tracey, no doubt about tat.

Any worries/grumbles/stuff you need to get off your chest, we are

here.there are always my supportive frens and family too...

Things will get better,

cheers

PX

>

> Hello Everyone,

>

> My name is Tracey. I have been " Lurking by the way " for the past

few

> days or so and I feel very good about joining the group. I was

just

> recently diagnosed with Stills aka The Dragon. I battled with the

> pain

> and fever for approximately 2 mos. before a proper diagnosis was

> given.

> I'm scared because I don't know what to expect in the future. I am

a

> single 43 year old school teacher and student living in Houston.

I

> want to become an Elementary School Principal. At the rate I'm

going

> (with the Dragon) I don't know if I will even be able to begin and

> complete

> this school year. For the past three weeks I've been on a very

low

> dosage of methylprednisolone (4mg)and sulfasalazine(2000mg) daily

and

> there

> are days when I feel like I am a prisoner to my bed. My greatest

fear

> is that one day I will have to depend on someone to take care of

me.

> I am

> very independent and am used to taking care of others. I hope and

> pray

> that this disease doesn't " overtake me " . Has anyone

> experienced " blackouts " ? Before I was PROPERLY diagnosed and even

> one

> time after that I experienced blackouts. It usually warns me

about

> 60sec. before it happens. I get so dizzy and black spots appear

> before

> my face. I know what's about to happen and fortunately I have

been

> able to make it to a place where I can lie down. This is a very

> frightening experience!!! There so much more I want to share with

> you

> guys but I'll end for now.

>

> I'm glad to be a part of this family!!!!

>

> Sincerely,

> Scared in Houston

>

[Guest guest]

Hi ,

Welcome to Stilligan's Island. I'm glad that you found us and sorry to hear

that the dragon has you. I sure can understand your fears and I can assure you

that there is life even when we have SD. We go through the valleys where we

are really sick and can't do much but lay there and pray that the dragon will

stop. However, there are days once the meds kick in that are fantastic and

there is also remission. One of our members lives in Houston and she is a

teacher too! I'm sure that she will get in contact with you and the two of you

can get together. She will have a lot of information for you too.

I'm 47 years old and have been living with SD since 1998. Two years ago I

returned to college and I am getting ready to start my final semester in just a

few weeks. The summer has been extremely rough because I was recently

diagnosed in June with MS. I'm getting ready to start the new meds next week

with an

RN from the drug company.

As for fainting spells, yes I do faint on occasion. You need to tell your

doctor that this is happening so he can run the appropriate tests on you.

Syncope is very common in people with low blood pressure too.

Well, I encourage you to post as much you would like to. There's a lot of

knowledge in this group. You will find that many of the symptoms you may

experience, others have here and that helps to take the feeling of being

" cuckoo "

out of your brain. LOL. Hang in there and I look forward to reading your posts.

Much love,

Terry

[Guest guest]

Tracey,

I will write much more later today, I am sorry I have to run off to a dept.

chair meeting today.

I am Beth, I live in Houston and have been a teacher for 19 years, I am 42

and also a student --- I have my administrators degree and am going about my

counseling certification, in fact I am a little stressed about taking the

TEXES exam this saturday.

I have lots to share with you and will write more this afternoon. For now,

just take it one day at a time and know that this is such a wonderful place

to get information and friendship. The most important thing for the moment

is that you are working with a Dr. to begin to get the disease under control.

More later today,

Beth

[Guest guest]

Tracey,

I'm , 33, and also live in Houston. Beth G also lives in

Houston and is also a school teacher. She might be able to give you

some coping techniques to deal with the demands of being a teacher.

I personally have never experienced blackouts, but there's a good

chance someone on here has.

Glad you found us. Ask questions all you need in order to feel more

calm about things. Over time, you do learn to live with it (not that

we don't get angry or depressed about it) and it becomes easier to

think through next steps.

The first order of business, a great rheumy. Do you have one?

Houston

[Guest guest]

Thanks . My name is Tracey and yes I do have a Rheumy. He was one of the

Specialist called in by my Primary Care Physician when I was in the hospital.

a_cone wrote: Scared in Houston (not sure of your

name),

I'm , 33, and also live in Houston. Beth G also lives in

Houston and is also a school teacher. She might be able to give you

some coping techniques to deal with the demands of being a teacher.

I personally have never experienced blackouts, but there's a good

chance someone on here has.

Glad you found us. Ask questions all you need in order to feel more

calm about things. Over time, you do learn to live with it (not that

we don't get angry or depressed about it) and it becomes easier to

think through next steps.

The first order of business, a great rheumy. Do you have one?

Houston

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[Guest guest]

Tracey,

Who is your rheumy? I'm still trying to find the right one since

moving back to Houston. Not had much luck though I have an appt with

Sept with the one patients and docs recommend.

I think we need to get a houston group meeting going if we can so we

can all say hello!

Houston

[Guest guest]

Tracey,

Hi I know this disease is very scary, especially when you first join the group.

I too sat back and read the posts before joining in. And I would get scared.

Because you are hearing about all the different side effects and all the issues

that everybody is having.

But what helped me was I started to see all the support and all the good

advise and opinions that everyone had.. This group is the best. And also there

are alot of us that are doing good or in remission. And you may only hear from

those individuals every once in a while. But that is good, it shows you that

you can have a life and a good one with Stills.

They say that the onset is usually your worst. Once you get your meds in order

and you figure out what you can and can't do with this disease, you'll feel alot

less scared.

I have never experienced " blackouts " but I do have dizzy spells every once in a

while. Sorry I couldn't be of more help.

I am glad that you found us and I hope that you will find comfort in support you

will get from us.

You will be in my thoughts and prayers. I hope that you will be feeling better

soon.

Love and Friendship,

Keri in CA

I'm scared!

Hello Everyone,

My name is Tracey. I have been " Lurking by the way " for the past few

days or so and I feel very good about joining the group. I was just

recently diagnosed with Stills aka The Dragon. I battled with the

pain

and fever for approximately 2 mos. before a proper diagnosis was

given.

I'm scared because I don't know what to expect in the future. I am a

single 43 year old school teacher and student living in Houston. I

want to become an Elementary School Principal. At the rate I'm going

(with the Dragon) I don't know if I will even be able to begin and

complete

this school year. For the past three weeks I've been on a very low

dosage of methylprednisolone (4mg)and sulfasalazine( 2000mg) daily and

there

are days when I feel like I am a prisoner to my bed. My greatest fear

is that one day I will have to depend on someone to take care of me.

I am

very independent and am used to taking care of others. I hope and

pray

that this disease doesn't " overtake me " . Has anyone

experienced " blackouts " ? Before I was PROPERLY diagnosed and even

one

time after that I experienced blackouts. It usually warns me about

60sec. before it happens. I get so dizzy and black spots appear

before

my face. I know what's about to happen and fortunately I have been

able to make it to a place where I can lie down. This is a very

frightening experience!! ! There so much more I want to share with

you

guys but I'll end for now.

I'm glad to be a part of this family!!!!

Sincerely,

Scared in Houston