Update

[Guest guest]

good to hear from you. Sorry the pump is causing him fits. Good luck to

at school. I hope he enjoys it

immensely.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

Jan:

Thank you so much for your concern. It has been an incredible several months

here. First the sinus surgery, then the bleed for now this with my

husband. Yes he is very overwhelmed and depressed. I don;t know if I

mentioned before that he previously had 2 episodes of deep vein thrombosis in

his calf. Well it seems he has a relatively rare clotting disorder called

anticardiolipin syndrome clotting disorder, which we now realize goes along

with connective tissue diseases like lupus. He is still very ill now, but we

hope the medication will get him feeling better soon. His main concern is

wanting to " take care of his family " . He is the most unselfish man I have

ever known. Did I mention to you that he married me with these 3 sick

children no questions asked? His support never waivered even once. We are

all still adjusting to this news but I am so grateful that this wasn't the

lymphoma they were almost certain that it was.

My girls are ok. I am still trying to get my the Vagus Nerve

stimulator for her seizure disorder, She continues to be the light of our

lives with her ever present unconditional love. My is much much

better. Her depression is well under control with medication and I am so

happy I have my young lady back.

We are not sure of 's GI problems, now they want to do an MRI CP

whatever that is. ? Any one heard of this??? We are also having problems

with Mike's arthritis flaring up as we have stopped all of his arthritis meds

for some time now. It wasn't too bad in the summer warmth, but now he is

beginning to really swell and complain of pain. How are things on your end

Jan? Are things ok with you and your family? I hope you had a nice summer

and hopefully free of too much illness?

Thank you so much for your concern - it really does help to know people care.

God Bless

Tina

Mike 16 CVID, JRA, post sinus surgery, GI bleed

[Guest guest]

Jan:

Thank you so much for your concern. It has been an incredible several months

here. First the sinus surgery, then the bleed for now this with my

husband. Yes he is very overwhelmed and depressed. I don;t know if I

mentioned before that he previously had 2 episodes of deep vein thrombosis in

his calf. Well it seems he has a relatively rare clotting disorder called

anticardiolipin syndrome clotting disorder, which we now realize goes along

with connective tissue diseases like lupus. He is still very ill now, but we

hope the medication will get him feeling better soon. His main concern is

wanting to " take care of his family " . He is the most unselfish man I have

ever known. Did I mention to you that he married me with these 3 sick

children no questions asked? His support never waivered even once. We are

all still adjusting to this news but I am so grateful that this wasn't the

lymphoma they were almost certain that it was.

My girls are ok. I am still trying to get my the Vagus Nerve

stimulator for her seizure disorder, She continues to be the light of our

lives with her ever present unconditional love. My is much much

better. Her depression is well under control with medication and I am so

happy I have my young lady back.

We are not sure of 's GI problems, now they want to do an MRI CP

whatever that is. ? Any one heard of this??? We are also having problems

with Mike's arthritis flaring up as we have stopped all of his arthritis meds

for some time now. It wasn't too bad in the summer warmth, but now he is

beginning to really swell and complain of pain. How are things on your end

Jan? Are things ok with you and your family? I hope you had a nice summer

and hopefully free of too much illness?

Thank you so much for your concern - it really does help to know people care.

God Bless

Tina

Mike 16 CVID, JRA, post sinus surgery, GI bleed

[Guest guest]

Dear Tina,

I have been worried about you and your family. I am relieved to hear from

you. I have no info though.

I hope the GI bleed and pain are resolved very soon for . I am sorry

your husband is so ill. He must be very overwhelmed right now. You guys are very

very strong though and will get through this. Hope everyone is doing

better real soon. Please try to get some rest.

Is on homebound for school this year? How are the girls?

Best wishes and know that we pray for every night.

Jan

[Guest guest]

Dear Tina,

I have been worried about you and your family. I am relieved to hear from

you. I have no info though.

I hope the GI bleed and pain are resolved very soon for . I am sorry

your husband is so ill. He must be very overwhelmed right now. You guys are very

very strong though and will get through this. Hope everyone is doing

better real soon. Please try to get some rest.

Is on homebound for school this year? How are the girls?

Best wishes and know that we pray for every night.

Jan

[Guest guest]

Kirstie - so glad to hear that is feeling better? How's Steph's breathing

been lately? Is Cam doing well?

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

Kirstie - so glad to hear that is feeling better? How's Steph's breathing

been lately? Is Cam doing well?

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net

[Guest guest]

Hi all, I wanted to say Thank you Sheri for staying in touch with so

many and letting us know how all are doing. You are very sweet to

spend so much time. Good day all, till soon, Melt

> Hi All just wanted to update you on a little info I received.

Brent is not feeling so hot and said he is still around, Thanks for

letting us know Brent.

>

> Also I was chatting with P and he is doing well ; just back

from vacation. His son Andy is also well. So that was a blessing to

hear some good news.

>

> Take Care All

> Love Sheri

> djjd@s...

>

>

>

[Guest guest]

Hi all, I wanted to say Thank you Sheri for staying in touch with so

many and letting us know how all are doing. You are very sweet to

spend so much time. Good day all, till soon, Melt

> Hi All just wanted to update you on a little info I received.

Brent is not feeling so hot and said he is still around, Thanks for

letting us know Brent.

>

> Also I was chatting with P and he is doing well ; just back

from vacation. His son Andy is also well. So that was a blessing to

hear some good news.

>

> Take Care All

> Love Sheri

> djjd@s...

>

>

>

[Guest guest]

Dear Ann, Patty here;

I'm no help on the medical side but good luck to you. I know those

fevers are almost the nastiest part. Feel better, Melt

> My lab work came back with some elevated liver functions, but the

sed rate

> was normal. Neither the Rheumy or GP felt that the liver function

elevation

> had anything to do with how yucky I have been feeling. The

decision was

> that it was probably a virus that would have to run its course.

They gave

> me antivert (it sort of works) and sent me home. Yesterday

afternoon and

> evening were actually pretty good. I went for a one mile walk in

the mall

> and ate dinner out. My appetite (unfortunately!!) returned to

normal.

> However last night I woke with high fever at 5:30 AM again. I took

an

> Aleve, as my body ached and I couldn't find any position to sleep

in. By

> 8:00 AM, I was drenched in sweat. Today I am back to being

nauseous again

> and very tired.

> I think it has something to do with the Stills. The rheumy did say

that if

> it doesn't get better we will look further, as the 2 mg Pred could

be

> masking the Stills.

> Ann K

>

> Update

>

>

> > Hi fellow Stilligans,

> > Sorry that so many of you are feeling so miserable (and just in

time for

> the

> > holidays of course). I hope that the new year brings peace and

health to

> > each and every one of you and your families.

> >

> > I have been feeling quite out of it for the last few months, and

so could

> > not face writing on the computer (although I did read most of

what you

> > wrote). In Aug I started having a great deal of pain, especially

in my

> hips

> > and thighs. The Rheumy dxd Bursitis of the hip and gave me a

cortisone

> shot

> > in the left hip (which was the worst one) and in my left wrist

(the wrist

> > was very painful and we thought I might be getting carpal tunnel,

although

> I

> > am a righty and don't do any repetitive work). The shot in the

wrist

> worked

> > beautifully, but I continued to have pain in the hip. We tried

going from

> > plaqunil to Neurontin, but it didn't really help (although I did

get the

> > additional diagnosis of fibromyalgia.) On Nov 19, I got another

cortisone

> > shot, but it did even less for me. X-rays show calcium buildup,

so the

> > diagnosis is confirmed. We also went through 2 trials of

prednisone (15

> x2,

> > 10x 2, 5x 2) to no avail. On Thanksgiving morning I came down

with UTI,

> > which didn't help anything!! (It took 2 go arounds with the anti-

biotic

> for

> > that to clear up) We tried Relafen for the hip and now other

pains that I

> > was getting because I was trying to avoid injuring the hip

further. About

> 2

> > 1/2 weeks ago, I began running a fever (up to 100.5 when my

normal is

> 96.8)

> > feeling very nauseous and headachy for much of the day, not

sleeping, and

> > now having additional pain in my ribs, on the sides. About a week

ago I

> > started with a new chiropractor who specializes in Fibro. He

says my

> pelvis

> > was way out of alignment and this is causing the hip pain. I'm

not sure I

> > believe it fully, but whatever he did is helping the hip pain.

Because of

> > the nausea my rheumy had me stop the Relafen and then the

Neurontin.

> > Somewhere back in Oct, I think, I also started physical therapy.

Things

> > feel better after a session, but it doesn't last.

> > I speak to my rheumy at least weekly (he is great at trying to

get back to

> > me). As of now we have no answers. I just took my blood tests

on Mon.

> and

> > hopefully they will be back tomorrow. Maybe something will make

sense

> from

> > that.

> > Sometimes I read about all your problems and feel I shouldn't

gripe so

> much,

> > but I do hate feeling so cruddy. It isn't they way I intended to

spend my

> > retirement!!!

> > Thanks for hearing me out

> > Ann K

> >

> >

> >

> >

> >

> >

> > Visit the Still's Disease Message Board

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

> >

> >

[Guest guest]

That is great news that you don't have amyloidosis!!! I was concerned for you

when I heard that's what you thought you might have. I've been doing some

reading about it, and it must have been frightening for you to think you

might have had it.

Eleanor

[Guest guest]

That is great news that you don't have amyloidosis!!! I was concerned for you

when I heard that's what you thought you might have. I've been doing some

reading about it, and it must have been frightening for you to think you

might have had it.

Eleanor

[Guest guest]

That is great news that you don't have amyloidosis!!! I was concerned for you

when I heard that's what you thought you might have. I've been doing some

reading about it, and it must have been frightening for you to think you

might have had it.

Eleanor

[Guest guest]

Yoohooooo !!!! Your news is so good to hear. I had never heard

of this before you were being tested, but the articles were a bit

serious. I'm sure I speak for all in saying " We have big smiles for

you hearing this news. " I hope your other symtoms will follow suit

and leave you to better days. You stay warm and have love filled

holidays too. Thank you for the update. Untill soon, Melt

> Hello All,

>

> Just a short update. I don't have Amyloidosis, Yea! I am patiently

> awaiting to see a new Pain Clinic. This has been challenging.

>

> I am still not very well. I am however in better spirits. I

haven't been

> coping well with my illness for some time.. This is slowly

changing for the

> better.

>

> I wish you all the best. You are all in my thoughts and prayers.

Happy

> Holidays!

>

> Love,

>

>

> jatw@a...

[Guest guest]

Yoohooooo !!!! Your news is so good to hear. I had never heard

of this before you were being tested, but the articles were a bit

serious. I'm sure I speak for all in saying " We have big smiles for

you hearing this news. " I hope your other symtoms will follow suit

and leave you to better days. You stay warm and have love filled

holidays too. Thank you for the update. Untill soon, Melt

> Hello All,

>

> Just a short update. I don't have Amyloidosis, Yea! I am patiently

> awaiting to see a new Pain Clinic. This has been challenging.

>

> I am still not very well. I am however in better spirits. I

haven't been

> coping well with my illness for some time.. This is slowly

changing for the

> better.

>

> I wish you all the best. You are all in my thoughts and prayers.

Happy

> Holidays!

>

> Love,

>

>

> jatw@a...

[Guest guest]

Yoohooooo !!!! Your news is so good to hear. I had never heard

of this before you were being tested, but the articles were a bit

serious. I'm sure I speak for all in saying " We have big smiles for

you hearing this news. " I hope your other symtoms will follow suit

and leave you to better days. You stay warm and have love filled

holidays too. Thank you for the update. Untill soon, Melt

> Hello All,

>

> Just a short update. I don't have Amyloidosis, Yea! I am patiently

> awaiting to see a new Pain Clinic. This has been challenging.

>

> I am still not very well. I am however in better spirits. I

haven't been

> coping well with my illness for some time.. This is slowly

changing for the

> better.

>

> I wish you all the best. You are all in my thoughts and prayers.

Happy

> Holidays!

>

> Love,

>

>

> jatw@a...

[Guest guest]

shannon

hon i think medicare does pay for the remicade or at least part of it

becasue is is done in a hoispital setting at leat thats where mine will be in

the hospital on the oncology floor. why are they now saying you dont qaulify

for medicaid.

things will get better hon beleive me they do i myself have been goiong thru

the wringer

love ya connie

[Guest guest]

Hi , I think your going to be so busy we better do some

dancing for you as you aren't going to have time. LOL.

I just wanted to say good luck with the medicaid dilema. I can't be

of any help, but it probably couldn't hurt to have a legal opinion.

So glad your Medicare will start soon.

Mostly I've answered to give you moral support and wish you the

best. Till soon, Melt

> Hello gang,

> Well I made it through Christmas. Yahoo!! The kids had a great

time. I even made a killin' this year. LOL!! My husband or was that

Santa was good to me. We have been having fun with the kids out for

Christmas break. With Christmas and New Years on Tuesday my husbands

work schedule is all messed up. He gets Sunday, half of Monday,

Tuesday, Thursday (normal day off), both weeks. So we are spending a

lot of catch up time together. The kids go back to school January 2nd

and then the craziness begins. I start watching my sister-in-laws two

month old baby on the 7th of January. She is so good. I have spent

lots of time with her the last week and look forward to taking care

of her. Yes I will still have my sisters four kids so I will have my

hands full. If you don't hear from me in a while it is because the

little buggers tied me up and put me in the closet. LOL!!

> My health is ok. I am off the pred. Yipee!! I don't know how long

this will last because I can feel the old pain coming back. I do not

want to have to go back on it, so I will fight it all the way. One

morning this week I woke up and my right elbow was almost locked. The

pain was deep and hot. Yesterday I woke up and my wrist was almost

locked. Yes I know get back on the pred. No fevers! That is a plus. I

know that I will always deal with pain so I can handle this, it is

the fevers I will take the pred for.

> After all of this fighting to get Medicaid and finally getting

it was taken away from me. They paid all my back bills. Everything.

I am even getting a $300.00 check from one place. It seems that to

qualify me from August 99 to December 01 the gal handling my case,

well she lied. Little did I know. I was just happy to get it. My case

was turned over to the lead man and he found the errors. He sent me

a letter on December 12. I got it yesterday. So I called all mad and

ready to take his head off. I did for a little while. He told me that

he needed to call someone and then he would call me back. While I was

waiting it occurred to me that if my Medicaid ends next week then I

will have no coverage for my third Remicade on January 10. I called

the doctor and they can not move the infusion up but they can move it

back. It will be Feb 7. My Medicare kicks in Feb 1. Well he called

back and told me that I could take the office to a fair hearing. He

asked if I did not to mention the back benefits. If I did I would

have to pay the state back. Holy cow. Do you have any idea how much

they paid out for me. Do you know how far in debt we would be if they

did that. Well I am sure most of you do. He told me if I kept quiet

they would not do anything about making me pay back benefits. But

that I was no longer eligible. Know what I want to know is how much

of this is him helping us out or him trying to keep from getting in

trouble with the state. More for him not getting into trouble I

think. My husband feels we should get a lawyer but if we do then we

will be responsible to pay back thousands of dollars. I was doing

what I was told. It is there job not mine. The guy from the state

called me again a today and told me that I do qualify for a state

program that pays all of what Medicare will not pay. All but the

medication. I have a question with Remicade, will I have to pay for

it or is it covered by Medicare? God I hope so. If this falls

through then I will give up. I will go back to hurting all the time,

and only taking pred. It is all I can afford. I will just have to do

what the old timers did back a hundred years ago. Suffer. That is all

that is left for me.

> All I need is my family, you guys, and a soft place to lay down.

Take care all,

> Do you ICQ? I do! My number is 145599444. Drop me a note:)

> ~~I HOPE YOU DANCE~~

> crimsons@w...

>

>

>

[Guest guest]

Hi , I think your going to be so busy we better do some

dancing for you as you aren't going to have time. LOL.

I just wanted to say good luck with the medicaid dilema. I can't be

of any help, but it probably couldn't hurt to have a legal opinion.

So glad your Medicare will start soon.

Mostly I've answered to give you moral support and wish you the

best. Till soon, Melt

> Hello gang,

> Well I made it through Christmas. Yahoo!! The kids had a great

time. I even made a killin' this year. LOL!! My husband or was that

Santa was good to me. We have been having fun with the kids out for

Christmas break. With Christmas and New Years on Tuesday my husbands

work schedule is all messed up. He gets Sunday, half of Monday,

Tuesday, Thursday (normal day off), both weeks. So we are spending a

lot of catch up time together. The kids go back to school January 2nd

and then the craziness begins. I start watching my sister-in-laws two

month old baby on the 7th of January. She is so good. I have spent

lots of time with her the last week and look forward to taking care

of her. Yes I will still have my sisters four kids so I will have my

hands full. If you don't hear from me in a while it is because the

little buggers tied me up and put me in the closet. LOL!!

> My health is ok. I am off the pred. Yipee!! I don't know how long

this will last because I can feel the old pain coming back. I do not

want to have to go back on it, so I will fight it all the way. One

morning this week I woke up and my right elbow was almost locked. The

pain was deep and hot. Yesterday I woke up and my wrist was almost

locked. Yes I know get back on the pred. No fevers! That is a plus. I

know that I will always deal with pain so I can handle this, it is

the fevers I will take the pred for.

> After all of this fighting to get Medicaid and finally getting

it was taken away from me. They paid all my back bills. Everything.

I am even getting a $300.00 check from one place. It seems that to

qualify me from August 99 to December 01 the gal handling my case,

well she lied. Little did I know. I was just happy to get it. My case

was turned over to the lead man and he found the errors. He sent me

a letter on December 12. I got it yesterday. So I called all mad and

ready to take his head off. I did for a little while. He told me that

he needed to call someone and then he would call me back. While I was

waiting it occurred to me that if my Medicaid ends next week then I

will have no coverage for my third Remicade on January 10. I called

the doctor and they can not move the infusion up but they can move it

back. It will be Feb 7. My Medicare kicks in Feb 1. Well he called

back and told me that I could take the office to a fair hearing. He

asked if I did not to mention the back benefits. If I did I would

have to pay the state back. Holy cow. Do you have any idea how much

they paid out for me. Do you know how far in debt we would be if they

did that. Well I am sure most of you do. He told me if I kept quiet

they would not do anything about making me pay back benefits. But

that I was no longer eligible. Know what I want to know is how much

of this is him helping us out or him trying to keep from getting in

trouble with the state. More for him not getting into trouble I

think. My husband feels we should get a lawyer but if we do then we

will be responsible to pay back thousands of dollars. I was doing

what I was told. It is there job not mine. The guy from the state

called me again a today and told me that I do qualify for a state

program that pays all of what Medicare will not pay. All but the

medication. I have a question with Remicade, will I have to pay for

it or is it covered by Medicare? God I hope so. If this falls

through then I will give up. I will go back to hurting all the time,

and only taking pred. It is all I can afford. I will just have to do

what the old timers did back a hundred years ago. Suffer. That is all

that is left for me.

> All I need is my family, you guys, and a soft place to lay down.

Take care all,

> Do you ICQ? I do! My number is 145599444. Drop me a note:)

> ~~I HOPE YOU DANCE~~

> crimsons@w...

>

>

>

[Guest guest]

hon,

So good to hear from you! Off the steroids...wow! yeaaaahh! Now, if the time

comes and you do need to go back on some for awhile..remember, you *can*

get back off!

You are going to be one busy young woman . But, if you enjoy it, and

can do it, I think it's good for you. Always remember the " red light " " green

light. "

I would suggest you consult with a lawyer, because they usually give you a

one

time/first time consultation for " free. " A lawyer could tell you whether it

would be

to your benefit or not to pursue this, or to drop it.

Also, as long as you get the Remicade at the hospital, it would probably be

covered

more quickly than say Enbrel.

We will keep you in our thoughts, hearts, and prayers dear friend.

Love,

Your forever friend, Tricia

update

> Hello gang,

> Well I made it through Christmas. Yahoo!! The kids had a great time. I

even made a killin' this year. LOL!! My husband or was that Santa was good

to me. We have been having fun with the kids out for Christmas break. With

Christmas and New Years on Tuesday my husbands work schedule is all messed

up. He gets Sunday, half of Monday, Tuesday, Thursday (normal day off),

both weeks. So we are spending a lot of catch up time together. The kids go

back to school January 2nd and then the craziness begins. I start watching

my sister-in-laws two month old baby on the 7th of January. She is so good.

I have spent lots of time with her the last week and look forward to taking

care of her. Yes I will still have my sisters four kids so I will have my

hands full. If you don't hear from me in a while it is because the little

buggers tied me up and put me in the closet. LOL!!

> My health is ok. I am off the pred. Yipee!! I don't know how long this

will last because I can feel the old pain coming back. I do not want to have

to go back on it, so I will fight it all the way. One morning this week I

woke up and my right elbow was almost locked. The pain was deep and hot.

Yesterday I woke up and my wrist was almost locked. Yes I know get back on

the pred. No fevers! That is a plus. I know that I will always deal with

pain so I can handle this, it is the fevers I will take the pred for.

> After all of this fighting to get Medicaid and finally getting it was

taken away from me. They paid all my back bills. Everything. I am even

getting a $300.00 check from one place. It seems that to qualify me from

August 99 to December 01 the gal handling my case, well she lied. Little did

I know. I was just happy to get it. My case was turned over to the lead man

and he found the errors. He sent me a letter on December 12. I got it

yesterday. So I called all mad and ready to take his head off. I did for a

little while. He told me that he needed to call someone and then he would

call me back. While I was waiting it occurred to me that if my Medicaid ends

next week then I will have no coverage for my third Remicade on January 10.

I called the doctor and they can not move the infusion up but they can move

it back. It will be Feb 7. My Medicare kicks in Feb 1. Well he called back

and told me that I could take the office to a fair hearing. He asked if I

did not to mention th!

> e back benefits. If I did I would have to pay the state back. Holy cow. Do

you have any idea how much they paid out for me. Do you know how far in debt

we would be if they did that. Well I am sure most of you do. He told me if I

kept quiet they would not do anything about making me pay back benefits. But

that I was no longer eligible. Know what I want to know is how much of this

is him helping us out or him trying to keep from getting in trouble with the

state. More for him not getting into trouble I think. My husband feels we

should get a lawyer but if we do then we will be responsible to pay back

thousands of dollars. I was doing what I was told. It is there job not

mine. The guy from the state called me again a today and told me that I do

qualify for a state program that pays all of what Medicare will not pay. All

but the medication. I have a question with Remicade, will I have to pay for

it or is it covered by Medicare? God I hope so. If this falls through then

I will !

> give up. I will go back to hurting all the time, and only taking pred. It

is all I can afford. I will just have to do what the old timers did back a

hundred years ago. Suffer. That is all that is left for me.

> All I need is my family, you guys, and a soft place to lay down. Take

care all,

> Do you ICQ? I do! My number is 145599444. Drop me a note:)

> ~~I HOPE YOU DANCE~~

> crimsons@...

>

>

>

[Guest guest]

hon,

So good to hear from you! Off the steroids...wow! yeaaaahh! Now, if the time

comes and you do need to go back on some for awhile..remember, you *can*

get back off!

You are going to be one busy young woman . But, if you enjoy it, and

can do it, I think it's good for you. Always remember the " red light " " green

light. "

I would suggest you consult with a lawyer, because they usually give you a

one

time/first time consultation for " free. " A lawyer could tell you whether it

would be

to your benefit or not to pursue this, or to drop it.

Also, as long as you get the Remicade at the hospital, it would probably be

covered

more quickly than say Enbrel.

We will keep you in our thoughts, hearts, and prayers dear friend.

Love,

Your forever friend, Tricia

update

> Hello gang,

> Well I made it through Christmas. Yahoo!! The kids had a great time. I

even made a killin' this year. LOL!! My husband or was that Santa was good

to me. We have been having fun with the kids out for Christmas break. With

Christmas and New Years on Tuesday my husbands work schedule is all messed

up. He gets Sunday, half of Monday, Tuesday, Thursday (normal day off),

both weeks. So we are spending a lot of catch up time together. The kids go

back to school January 2nd and then the craziness begins. I start watching

my sister-in-laws two month old baby on the 7th of January. She is so good.

I have spent lots of time with her the last week and look forward to taking

care of her. Yes I will still have my sisters four kids so I will have my

hands full. If you don't hear from me in a while it is because the little

buggers tied me up and put me in the closet. LOL!!

> My health is ok. I am off the pred. Yipee!! I don't know how long this

will last because I can feel the old pain coming back. I do not want to have

to go back on it, so I will fight it all the way. One morning this week I

woke up and my right elbow was almost locked. The pain was deep and hot.

Yesterday I woke up and my wrist was almost locked. Yes I know get back on

the pred. No fevers! That is a plus. I know that I will always deal with

pain so I can handle this, it is the fevers I will take the pred for.

> After all of this fighting to get Medicaid and finally getting it was

taken away from me. They paid all my back bills. Everything. I am even

getting a $300.00 check from one place. It seems that to qualify me from

August 99 to December 01 the gal handling my case, well she lied. Little did

I know. I was just happy to get it. My case was turned over to the lead man

and he found the errors. He sent me a letter on December 12. I got it

yesterday. So I called all mad and ready to take his head off. I did for a

little while. He told me that he needed to call someone and then he would

call me back. While I was waiting it occurred to me that if my Medicaid ends

next week then I will have no coverage for my third Remicade on January 10.

I called the doctor and they can not move the infusion up but they can move

it back. It will be Feb 7. My Medicare kicks in Feb 1. Well he called back

and told me that I could take the office to a fair hearing. He asked if I

did not to mention th!

> e back benefits. If I did I would have to pay the state back. Holy cow. Do

you have any idea how much they paid out for me. Do you know how far in debt

we would be if they did that. Well I am sure most of you do. He told me if I

kept quiet they would not do anything about making me pay back benefits. But

that I was no longer eligible. Know what I want to know is how much of this

is him helping us out or him trying to keep from getting in trouble with the

state. More for him not getting into trouble I think. My husband feels we

should get a lawyer but if we do then we will be responsible to pay back

thousands of dollars. I was doing what I was told. It is there job not

mine. The guy from the state called me again a today and told me that I do

qualify for a state program that pays all of what Medicare will not pay. All

but the medication. I have a question with Remicade, will I have to pay for

it or is it covered by Medicare? God I hope so. If this falls through then

I will !

> give up. I will go back to hurting all the time, and only taking pred. It

is all I can afford. I will just have to do what the old timers did back a

hundred years ago. Suffer. That is all that is left for me.

> All I need is my family, you guys, and a soft place to lay down. Take

care all,

> Do you ICQ? I do! My number is 145599444. Drop me a note:)

> ~~I HOPE YOU DANCE~~

> crimsons@...

>

>

>

[Guest guest]

hon,

So good to hear from you! Off the steroids...wow! yeaaaahh! Now, if the time

comes and you do need to go back on some for awhile..remember, you *can*

get back off!

You are going to be one busy young woman . But, if you enjoy it, and

can do it, I think it's good for you. Always remember the " red light " " green

light. "

I would suggest you consult with a lawyer, because they usually give you a

one

time/first time consultation for " free. " A lawyer could tell you whether it

would be

to your benefit or not to pursue this, or to drop it.

Also, as long as you get the Remicade at the hospital, it would probably be

covered

more quickly than say Enbrel.

We will keep you in our thoughts, hearts, and prayers dear friend.

Love,

Your forever friend, Tricia

update

> Hello gang,

> Well I made it through Christmas. Yahoo!! The kids had a great time. I

even made a killin' this year. LOL!! My husband or was that Santa was good

to me. We have been having fun with the kids out for Christmas break. With

Christmas and New Years on Tuesday my husbands work schedule is all messed

up. He gets Sunday, half of Monday, Tuesday, Thursday (normal day off),

both weeks. So we are spending a lot of catch up time together. The kids go

back to school January 2nd and then the craziness begins. I start watching

my sister-in-laws two month old baby on the 7th of January. She is so good.

I have spent lots of time with her the last week and look forward to taking

care of her. Yes I will still have my sisters four kids so I will have my

hands full. If you don't hear from me in a while it is because the little

buggers tied me up and put me in the closet. LOL!!

> My health is ok. I am off the pred. Yipee!! I don't know how long this

will last because I can feel the old pain coming back. I do not want to have

to go back on it, so I will fight it all the way. One morning this week I

woke up and my right elbow was almost locked. The pain was deep and hot.

Yesterday I woke up and my wrist was almost locked. Yes I know get back on

the pred. No fevers! That is a plus. I know that I will always deal with

pain so I can handle this, it is the fevers I will take the pred for.

> After all of this fighting to get Medicaid and finally getting it was

taken away from me. They paid all my back bills. Everything. I am even

getting a $300.00 check from one place. It seems that to qualify me from

August 99 to December 01 the gal handling my case, well she lied. Little did

I know. I was just happy to get it. My case was turned over to the lead man

and he found the errors. He sent me a letter on December 12. I got it

yesterday. So I called all mad and ready to take his head off. I did for a

little while. He told me that he needed to call someone and then he would

call me back. While I was waiting it occurred to me that if my Medicaid ends

next week then I will have no coverage for my third Remicade on January 10.

I called the doctor and they can not move the infusion up but they can move

it back. It will be Feb 7. My Medicare kicks in Feb 1. Well he called back

and told me that I could take the office to a fair hearing. He asked if I

did not to mention th!

> e back benefits. If I did I would have to pay the state back. Holy cow. Do

you have any idea how much they paid out for me. Do you know how far in debt

we would be if they did that. Well I am sure most of you do. He told me if I

kept quiet they would not do anything about making me pay back benefits. But

that I was no longer eligible. Know what I want to know is how much of this

is him helping us out or him trying to keep from getting in trouble with the

state. More for him not getting into trouble I think. My husband feels we

should get a lawyer but if we do then we will be responsible to pay back

thousands of dollars. I was doing what I was told. It is there job not

mine. The guy from the state called me again a today and told me that I do

qualify for a state program that pays all of what Medicare will not pay. All

but the medication. I have a question with Remicade, will I have to pay for

it or is it covered by Medicare? God I hope so. If this falls through then

I will !

> give up. I will go back to hurting all the time, and only taking pred. It

is all I can afford. I will just have to do what the old timers did back a

hundred years ago. Suffer. That is all that is left for me.

> All I need is my family, you guys, and a soft place to lay down. Take

care all,

> Do you ICQ? I do! My number is 145599444. Drop me a note:)

> ~~I HOPE YOU DANCE~~

> crimsons@...

>

>

>

[Guest guest]

Wow off the pred thats great but remeber if you start feeling like you

having more joint pain go back on it. My rheumy always lets me keep 10mgs on

hand for emergency things like that and lets me use my best judgement then i

just wean off like your suppose.

Man i wish my kid went back to school on the 2nd ours arent going back

until the 7th of jan and shes driving me nuts shes bored. lol

love ya connie

[Guest guest]

Wow off the pred thats great but remeber if you start feeling like you

having more joint pain go back on it. My rheumy always lets me keep 10mgs on

hand for emergency things like that and lets me use my best judgement then i

just wean off like your suppose.

Man i wish my kid went back to school on the 2nd ours arent going back

until the 7th of jan and shes driving me nuts shes bored. lol

love ya connie

[Guest guest]

Wow off the pred thats great but remeber if you start feeling like you

having more joint pain go back on it. My rheumy always lets me keep 10mgs on

hand for emergency things like that and lets me use my best judgement then i

just wean off like your suppose.

Man i wish my kid went back to school on the 2nd ours arent going back

until the 7th of jan and shes driving me nuts shes bored. lol

love ya connie