(No subject)

[Guest guest]

I am so jealous! I wish we cold of gone too! Hopefully next year is right. I

am anxious to here all the stories when they get home!

Tara and 2 (Poly)

P.S. Have a great time at camp. When I was you're age it was my favorite time

of year! Enjoy every moment of it because it goes by FAST!

(no subject)

Does anyone else feel like the kid who didn't get to go on the cool

feild

trip? I do. Man this board is quiet. Anyway I'm off for my week at

the camp I

volunteer at tomorrow..So yeah hope everyone has a great week and I'll

talk to

you all on August 2nd. I have a rheumi appointment on the 5th..good

fun!

Lots of Love

(Polyarticular Juvenile Rheumatoid Arthritis and

Spondyloarthropathy,

19)

[Guest guest]

dssll2@... wrote:

> *I still haven't received any feedback on anyone who is taking

> cellcept and what it is like. I really would like to know. I have

> talked with my family and they all want me to try it and see if I get

> side effects from it. I went to church today and the pastor and

> congrgation gathered round me and prayed for me. I just was so

> overwhelmed with the love I felt that I just cried. The church is my

> two daughters church and I go there when I visit with them. I am

> still very afraid to try this medication after reading about it but

> what actual choice do I have other than to just give up and die? Ny

> family wants me to be around for a while longer so I guess I will give

> it a try and trust that God will carry me through. I also would like

> to thank those people who have emailed me their support, it really

> does mean a lot to me. *

>

>

[Guest guest]

Hi h

Try chicory thats a great alternative to coffee, it

also feeds the good bacteria in the gut.

Wishing you well

McKelvey U.K.

--- sensualwordz@... wrote:

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

I am back

I had been feeling great and feeling lazy about

reading mail and doing diet

now i am beginning to feel all the old symptoms

coming back

so i need to get back on the diet tract

the only thing i jus t cant bear to give up is my

coffee

any suggestions for food choices again are helpful I

am also trying to stay

on atkins diet

h

[Guest guest]

Yes, you will find some days better than others and there is just no way to

predict them. One day things are looking up and you may breathe a little

easier, then the next day they are feeling poorly and you follow suite with

emotions.

My daughter, Caitlin, has been in remission since March (without meds). She

has a rash now and we are watching to see if it is a reaction to something or

Still's acting up. To look at her (up until this rash) you would never know

what she has been through:)

I hope Hunter is feeling better ASAP.

Take care.

Patty

[Guest guest]

. There are places where you can get customized wheelchairs, for

individuals who may not be able to sit up in a regular wheel chair.

Unfortunately,

having moved from California, I personally do not know what sources are

available to you where your live.

Customization, requires using plastic foam beads that are molded to fit the

individual then shrink wrapped with the chair covering. I would bet money

that some one out there in your area has the information you need.

Sincerely Virginia

[Guest guest]

Thank you, do you remember the name of the product?

Thanks

[Guest guest]

Convaid Stroller is what I used very nice at that. convaid.com i belive

[Guest guest]

thank you, I spoke the people at Neubauer's office last week before

the last storm, everyone so far was fine, have you spoken to them?

Giovani is getting bigger so I need something new. Will look into

that website.

Thank you

[Guest guest]

Oh Debs, I am so sorry that you have been so ill. Is everything back

in control now, what a time, girl? I will keep you, and the family

in my prayers,Tawny

> My Dear. Dear Friends:

>

> A Blessed Christmas and Holiday season to one and all! Hopefully,

you can

> spend this time with family and friends with as little pain as

possible.

>

> Unfortunately, the reason for my silence has been due to a number

of hospital

> stays due to sepsis and apparently the lupus has attacked my

brain. Some of

> these attacks came during the hurricanes that we seemed to attract

thi summer

> and all ambulances,roads and helicopters were grounded until the

winds died

> down. Ron had some scarey days with me with a high temperature, no

power for

> the AC and I had no knowledge of who Ron or the girls were. The

same thing

> happened on my birthday. Right now the only meds I am on for the

RA is

> prednisone, placquenil and I am on 3 different antibiotics to keep

the sepsis at bay and

> then pain medication mainly for my knee. Thru this whole process I

have lost

> about 50 lbs, but not the way to do it. At this time, my

orthopedic surgeon

> is thinking of putting a rod in my leg to give me permanent

stability as the

> fusion is still not complete after 2 years and my pain specialist

wants to put

> pain blocks in my back to minimize the amount of pain medication I

need to

> take, but it would not completely relieve all my pain. All these

procedures

> cannot be attempted until I finish my antibiotic course.

>

> So this is where I have been hiding. I miss you all and think of

you

> constantly. Welcome to all the new members!! This is a great

place for information,

> to vent, and just have a place where you " belong " .!

Remember " Whine &

> Cheese " is served here daily.

>

> My love to all of you and yours for a New Year that brings us new

medications

> without side effects!!!!!!

>

> Gentle, tender, angel hugs...............

>

>

> Debs in FL

>

>

>

[Guest guest]

Debs,

I am so sorry to read you are having such a bad time. I wish things were

better for

you. You have had a horrible time of it. I do hope you and your family can

enjoy the

holidays. I do wish you a very healthy New Year.

Lynn MeMom

BadKneesDebs@... wrote:

> My Dear. Dear Friends:

>

> A Blessed Christmas and Holiday season to one and all! Hopefully, you can

> spend this time with family and friends with as little pain as possible.

>

> Unfortunately, the reason for my silence has been due to a number of hospital

> stays due to sepsis and apparently the lupus has attacked my brain. Some of

> these attacks came during the hurricanes that we seemed to attract thi summer

> and all ambulances,roads and helicopters were grounded until the winds died

> down. Ron had some scarey days with me with a high temperature, no power for

> the AC and I had no knowledge of who Ron or the girls were. The same thing

> happened on my birthday. Right now the only meds I am on for the RA is

> prednisone, placquenil and I am on 3 different antibiotics to keep the sepsis

at bay and

> then pain medication mainly for my knee. Thru this whole process I have lost

> about 50 lbs, but not the way to do it. At this time, my orthopedic surgeon

> is thinking of putting a rod in my leg to give me permanent stability as the

> fusion is still not complete after 2 years and my pain specialist wants to put

> pain blocks in my back to minimize the amount of pain medication I need to

> take, but it would not completely relieve all my pain. All these procedures

> cannot be attempted until I finish my antibiotic course.

>

> So this is where I have been hiding. I miss you all and think of you

> constantly. Welcome to all the new members!! This is a great place for

information,

> to vent, and just have a place where you " belong " .! Remember " Whine &

> Cheese " is served here daily.

>

> My love to all of you and yours for a New Year that brings us new medications

> without side effects!!!!!!

>

> Gentle, tender, angel hugs...............

>

> Debs in FL

>

>

[Guest guest]

hello

i am so sorry to hear about all the things going on

with you..my prayers are with you and your family..i

just joined this support group..i was diagnosed with

RA not quite a year ago..but before i was diagnosed i

have suffered for years without knowing what was

wrong...so i wish you and yours a Merry Christmas...

--- Ruf-Caimi <ruf-caimi@...> wrote:

> Debs,

> I am so sorry to read you are having such a bad

> time. I wish things were better for

> you. You have had a horrible time of it. I do hope

> you and your family can enjoy the

> holidays. I do wish you a very healthy New Year.

> Lynn MeMom

>

> BadKneesDebs@... wrote:

>

> > My Dear. Dear Friends:

> >

> > A Blessed Christmas and Holiday season to one and

> all! Hopefully, you can

> > spend this time with family and friends with as

> little pain as possible.

> >

> > Unfortunately, the reason for my silence has been

> due to a number of hospital

> > stays due to sepsis and apparently the lupus has

> attacked my brain. Some of

> > these attacks came during the hurricanes that we

> seemed to attract thi summer

> > and all ambulances,roads and helicopters were

> grounded until the winds died

> > down. Ron had some scarey days with me with a

> high temperature, no power for

> > the AC and I had no knowledge of who Ron or the

> girls were. The same thing

> > happened on my birthday. Right now the only meds

> I am on for the RA is

> > prednisone, placquenil and I am on 3 different

> antibiotics to keep the sepsis at bay and

> > then pain medication mainly for my knee. Thru

> this whole process I have lost

> > about 50 lbs, but not the way to do it. At this

> time, my orthopedic surgeon

> > is thinking of putting a rod in my leg to give me

> permanent stability as the

> > fusion is still not complete after 2 years and my

> pain specialist wants to put

> > pain blocks in my back to minimize the amount of

> pain medication I need to

> > take, but it would not completely relieve all my

> pain. All these procedures

> > cannot be attempted until I finish my antibiotic

> course.

> >

> > So this is where I have been hiding. I miss you

> all and think of you

> > constantly. Welcome to all the new members!!

> This is a great place for information,

> > to vent, and just have a place where you

> " belong " .! Remember " Whine &

> > Cheese " is served here daily.

> >

> > My love to all of you and yours for a New Year

> that brings us new medications

> > without side effects!!!!!!

> >

> > Gentle, tender, angel hugs...............

> >

> > Debs in FL

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

[Guest guest]

Dear All:

Okay, I picked seven people who I thought would DO this. Please send

this back to me (You'll see why). In case anyone is interested, Saint

Theresa is known as the Saint of the Little Ways. Meaning she believed

in doing the little things in life well and with great love. She is also

the patron Saint of flower growers and florists. She is represented by

roses. May everyone be blessed who receives this message.

Theresa's Prayer cannot be deleted. REMEMBER to make a wish before you

read the poem. That's all you have to do. There is nothing attached.

Just send this to seven people and let me know what happens on the

fourth day. Do not break this, please. Prayer is one of the best free

gifts we receive. There is no cost but a lot of reward. Suggestion: copy

and paste rather than forward to protect email addresses and access to

e-virus. (Did you make a wish?) If you don't make a wish, it won't come

true.

St. Theresa's Prayer: May today there be peace within you. May you trust

God that you are exactly where you are meant to be. May you not forget

the infinite possibilities that are born of faith. May you use those

gifts that you have received, and pass on the love that has been given

to you....May you be content knowing you are a child of God.... Let his

presence settle into our bones, and allow your soul the freedom to sing,

dance, praise and love. It is there for each and every one of you.

Now, send this to 7 people within the next 5 minutes and your wish will

come true. And remember to send this back...you'll see why.

__________________________________________________

[Guest guest]

Thanks Debbie my husband wasn't as nice in what he said when I told him everything.

teh WVhillbilly

[Guest guest]

Just my own opinion, but this doctor seems to

have a very big head that is too big for his body! But that is JUST my opinion…statistics

indicate that there are very few who can actually go off meds without having a

major relapse…listen to your body.

As for the “you need to lose weight anyway”…I have one

sentence…”Mr. Doctor…sounds like you need some sensitivity

training – or go back to medical school”

Debby

[ ] (no

subject)

Ok I know I was away for awhile so I

want to update everyone on what is going on.

I went to my GI 2 wks ago and he told me since I have had 2 normal blood tests

that I am cured. I am off the prednisone (since Oct.) and I can quit taking the

Imuran or cut it back or what ever I want. He also told me MRI " s don't

mean anything so don't worry about them.

I am supposed to go back in 6 months but if I am not ill or having any real

problems then I am supposed to call and reschedule in another 6 months. He says

that unless something serious comes up He doesn't need to see me.

When I asked about all the nausea and vomiting he told me to quit eating I

needed to lose weight anyway.

What do you guys think?

I am glad my last 2 tests were good and I only eat 1 meal a day and use

Slimfast ultima for the other 2 so I am losing weight but still having trouble

with my stomache.

Am I cured?I am going to cut my Imuran backa nd eventually quit taking it. If

he feels it's not important than why keep taking it?

My husband Is MAD but I feel okay so maybe he is right[the doc].

sorry for the book

the WV hillbilly

Group

Rules

1. Please no religious, political, race or sexual

preference discussions.

2. NO slamming of other members, advertising or

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To UNsubscribe send a blank e-mail to

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[Guest guest]

I knew someone would cut right through the cheese!!

Well said!

> Just my own opinion, but this doctor seems to have a very big head

that

> is too big for his body! But that is JUST my opinion.statistics

> indicate that there are very few who can actually go off meds

without

> having a major relapse.listen to your body. As for the " you need to

> lose weight anyway " .I have one sentence. " Mr. Doctor.sounds like you

need

> some sensitivity training - or go back to medical school "

> Debby

>

> [ ] (no subject)

>

> Ok I know I was away for awhile so I want to update everyone on

what is

> going on.

> I went to my GI 2 wks ago and he told me since I have had 2 normal

blood

> tests that I am cured. I am off the prednisone (since Oct.) and I

can

> quit taking the Imuran or cut it back or what ever I want. He also

told

> me MRI " s don't mean anything so don't worry about them.

> I am supposed to go back in 6 months but if I am not ill or having

any

> real problems then I am supposed to call and reschedule in another 6

> months. He says that unless something serious comes up He doesn't

need

> to see me.

> When I asked about all the nausea and vomiting he told me to quit

eating

> I needed to lose weight anyway.

> What do you guys think?

> I am glad my last 2 tests were good and I only eat 1 meal a day and

use

> Slimfast ultima for the other 2 so I am losing weight but still

having

> trouble with my stomache.

> Am I cured?I am going to cut my Imuran backa nd eventually quit

taking

> it. If he feels it's not important than why keep taking it?

> My husband Is MAD but I feel okay so maybe he is right[the doc].

> sorry for the book

> the WV hillbilly

>

>

[Guest guest]

Hi Veri,

When we lived in the Kansas City area (until last summer) we went to

KU Med as well... email me, and I can share our experiences a bit more.

lbbrain@...

Take care,

[Guest guest]

HI, Veri. Sorry to hear of 's struggles. It sounds like the drs

are taking things seriously and you are moving in the right direction.

One thing I would like to note is that RA is a different disease than

JRA. Many drs now call JRA, JIA as in juvenile idiopathic arthritis.

Just to let you know that. You do not grow into RA because you had JRA

as a child. With her skin condition it almost sounds like she may have

psoratic arthritis. Many people do not realize that psoriasis can be a

form of arthritis. You have done well to have her eyes checked - they

should be checked with a slit lamp test at least every 6 months once

diagnosed with JRA. Some drs have kids go every 3 months depending on

the type. My son had to go for the first year or so after diagnosis and

now goes every 6 months. You can find info on the Arthritis Foundation's

website www.arthritis.org They have a lot of info there. You have a

great source of info here in finding this list. Georgina posts lots of

medical info and everyone posts lots of ideas and support to each other.

Ask any questions you may have - someone here is bound to have an answer

or idea. Good luck to you, Michele ( 18, spondy)

[Guest guest]

Hi veri,

Welcome to the group. Unfortunately I have been adding about two new people

to my database each week. 's symptoms sound really familiar to

mine. I was 12 when I started having symptoms as you have described. No

one in my family has RA either. It is interesting that you say she had

problems with skin flaking off on her foot. I had this too and didn't think

at first that it had anything to do with the JRA. Is it on her ankle? Mine

was on the ankle and eventually my skin broke open because it was so thin.

It seemed at that time even socks on my skin was painful. Lukily I have not

had it since because it took forever to heal.

(poly 35)

(no subject)

I have a daughter Jaye and she is 11 but will be 12 in a week. A

month ago she was diagnosed with JRA. Everything started on October 26th

with her

foot/ankle so swollen and painful with no explanation of injury. An

appointment to the peditrician and x-rays showed nothing. A week later the

swelling

was from her toes up past her knee and getting worse, we had another appt.

with the ped and plenty of blood work and scheduled to see the

opthamologist.

After the appointment to the opthmalogist to check for interocular

inflamation

which came back negative, we were scheduled to see a JRA specialist in mid

February. The next week the skin on her foot started looking brown and

there

were areas of dead skin that started flaking off. The ped. scheduled a

dopplar study to look for blood clots and found nothing. Since things just

kept

getting worse and nothing was getting better I requested to see if we could

find

a different specialist before mid Feb. We were able to get into KU Med

Center on November 28th. During the first month the ped. continued to say

to keep

walking on her foot.

Immediatly the JRA spec. said to get her on crutches. She put her on

Celebrex and ordered a bone scan and more blood work.We saw the JRA

specialist

again on Dec. 19th and she diagnosed her with JRA. The bone scan showed an

irregularity that she feels is JRA. The bloodwork all came back within

normal

ranges exept the one on the Thyroid and it was below normal. Her foot was

still

swollen and painful to walk on but it was beginning to improve. She ordered

PT

for her and suggested we go to a pool for exercise as often as we can and

took her out of her P.E. class. At that time she also added

hydroxichloroquine

daily.

After two and a half months her foot was normal again, no crutches and no

limping. After crawling up the stairs on her knees for two months we are now

again walking. We no longer are going to PT but are trying to get to the

pool

five days a week. It is something loves anyway and about the only

physical activity she can do at this point.

Two days ago she called from school telling me that she was having more

pain

in her foot and yes it was swelling again but not near as bad. She has alot

of stairs at school and for a while they were allowing her to use the

elevator. She would prefer to walk the stairs with her friends and so now

for a week

she did walk the stairs. I am not sure but maybe we will have to limit the

stairs from her again.

We are scheduled to see an endocrinologist in March to see what to do about

the thyroid. I really do not want to put her on another medication. When

was 5 she began having seizures and so is already on two anti-seizure

medications. She is also using a steroid cream for the dry patches she has

that

appear on her skin.

As far as I know in my family and in her fathers family there is no history

of Rheumatoid Arthritis. I know nothing about the RA and so am totally

lost.

I am searching on the internet for information and of course most of the

information does not sound good. I try to not get discouraged but some days

it

is hard. But when was diagnosed with the seizure disorder I knew

nothing about that either and have learned quite a bit. She has been

seizure free

for nearly three years now and that is promising.

I have friend that found this site for me so I have read some of the e-mail

for a couple of days. If you have suggestions or thoughts to share with me

please do so.

Veri, mother of

[Guest guest]

Hi Veri,

I function pretty well right now with Enbrel. I have not had any sores on

my ankles for a very long time. I am currently in a flare up right now, but

the Enbrel masks it all.

I wouldn't think the meds for seizures would cause jRA, but I guess anything

is possible. Keep on asking questions. We love them.

(poly 35)

(no subject)

,

thanks for both your notes. I have just been dealing with all this for

three

months and somedays feel so overwhelmed. 's skin each time has healed

pretty quickly. She has had area's on her foot, face, ear, eyelid, forhead

and her neck, she even got a severe cse of dandruf on the right side of her

head for about a week and a half. Of course I am not sure that was related

but

I think it was. The eyelid and neck seemed to be the most painful but with

some cortizone cream we got it taken care of pretty quick. Now we are

watching

and will use the cream as soon as we see an area start looking bad. I am

hoping to be wise enough to keep this stuff documented so that when we go

back to

the doctor I will have it for her. My forgettery tends to work in overdrive

on the day's we see the doctor.

How do you function now? Do you have many flair ups?

I tend to want to look ahead and think about how this is going to affect my

daughter in the future. She was diagnosed at 5 with a seizure disorder and

we

are still dealing with that, fortunatly seizrue free for 3 years. Now along

with the JRA and seizure disorder we are looking at a problem with her

thyroid. I keep wondering if the med's she has been on for the seizures

have worked

against her body to cause the JRA or something. I have so many questions

and

just do not really know how to ask them all.

Veri & Jaye 11

[Guest guest]

Beth,

I am so sorry for your loss. God bless you and your family.

Lani

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

There should be an " unsubscribe " link or info at the bottom of this

message [if you're reading oit on ]; if not please go to your

Groups page and edit your membership.

In the future it's probably a good idea to know how to get off a list

before getting on it. To do otherwise makes you look foolish or

inconsiderate.

>

> (no subject)

>

<hypothyroidism/message/40043;_ylc=X3oDMTJxMDR2cjc\

yBF9TAzk3MzU5NzE1BGdycElkAzE0NTY2NARncnBzcElkAzE3MDkyNTEwODIEbXNnSWQDNDAwNDMEc2V\

jA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTIxNjM3ODY0Mg-->

>

>

>

> Posted by: " B " babycakes442006@...

> <mailto:babycakes442006@...?Subject=%20Re%3A%28no%20subject%29>

> babycakes442006 <babycakes442006>

>

>

> Thu Jul 17, 2008 7:30 am (PDT)

>

> Please cancel my membership..

> .

>

> Take me off this forum

>

[Guest guest]

Getting off this this list is like a scarry movie. Ra ha ha ha ha!

cw

-- Re:(no subject)

There should be an " unsubscribe " link or info at the bottom of this

message [if you're reading oit on ]; if not please go to your

Groups page and edit your membership.

In the future it's probably a good idea to know how to get off a list

before getting on it. To do otherwise makes you look foolish or

inconsiderate.

>

> (no subject)

> <hypothyroidism/message/40043

_ylc=X3oDMTJxMDR2cjcyBF9TAzk3MzU5NzE1BGdycElkAzE0NTY2NARncnBzcElkAzE3MDkyNTEw

DIEbXNnSWQDNDAwNDMEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTIxNjM3ODY0Mg-->

>

>

>

> Posted by: " B " babycakes442006@...

> <mailto:babycakes442006@...?Subject=%20Re%3A%28no%20subject%29>

> babycakes442006 <babycakes442006>

>

>

> Thu Jul 17, 2008 7:30 am (PDT)

>

> Please cancel my membership..

> .

>

> Take me off this forum

>

[Guest guest]

it does amaze me when people who obliviously know how to join a list can't

understand how to leave a group...

From: Crystal

Sent: Friday, July 18, 2008 10:42 AM

hypothyroidism

Subject: Re: Re:(no subject)

Getting off this this list is like a scarry movie. Ra ha ha ha ha!

cw

-- Re:(no subject)

There should be an " unsubscribe " link or info at the bottom of this

message [if you're reading oit on ]; if not please go to your

Groups page and edit your membership.

In the future it's probably a good idea to know how to get off a list

before getting on it. To do otherwise makes you look foolish or

inconsiderate.

>

> (no subject)

> <hypothyroidism/message/40043

_ylc=X3oDMTJxMDR2cjcyBF9TAzk3MzU5NzE1BGdycElkAzE0NTY2NARncnBzcElkAzE3MDkyNTEw

DIEbXNnSWQDNDAwNDMEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTIxNjM3ODY0Mg-->

>

>

>

> Posted by: " B " babycakes442006@...

> <mailto:babycakes442006@...?Subject=%20Re%3A%28no%20subject%29>

> babycakes442006 <babycakes442006>

>

>

> Thu Jul 17, 2008 7:30 am (PDT)

>

> Please cancel my membership..

> .

>

> Take me off this forum

>

[Guest guest]

On the PBCers org. there is a young lady that is 22 and I've herad of another

being 18.

[Guest guest]

I read on a medical site that the youngest recorded age was 15, with symptoms

at age 12.

Harper

In a message dated 10/15/08 1:47:06 PM, golftexas@... writes:

>

> On the PBCers org. there is a young lady that is 22 and I've herad of

> another being 18.

>

>

>

**************

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