Re: chills, heat, thrills...

[Guest guest]

I have always had fevers with my flares.. but I have Juvenile Ankylosing

Spondylitis.. but when they orginally said that I had Poly JRA they said that

sometimes Polys will have some systemic like symptoms with some of their

flares.. so I dont know..

(JAS, 21)

Issadora <FlyfreeIzzie@...> wrote:

Hello everyone-

I just feel like venting. I'm in college, love it, can't wait to graduate

but lately, my level of pain has been pretty insane and in the last couple

days, have had the whole chills, can't warm up, major fatigue for hours on

end. Doesnt make studying easy. Doesnt make positive attitude easy.... sigh.

I had to give a presentation today on The Effect of Physical Stigma on Peer

Acceptance or Rejection in Pre School children, came home, promptly slept

for hours, cold, (live in san diego)... and still fatigued and cold now..

hours latter.

My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

woman but only has a lot of medication to try and put me on. I had asked her

if others with PolyJRA go through the chills/fever thing when they flare and

she wasn't aware of that happening except for in systemic. Don't know what

to make of that. Whatever the case, I'm miserable and having a hard time

managing it mood wise. My mom wants me to come home so she can take care of

me.... but I need to care for myself...

Anyways, that's all.... sigh

Issadora (PolyJRA since age 5 and Fibro since age 7)

--

" So, now I shall talk every night. To myself. To the moon. I shall walk, as

I did tonight, jealous of my loneliness, in the blue-silver of the cold

moon, shining brilliantly on the drifts of fresh-fallen snow, with the

myraid sparkles. I talk to myself and look at the dark trees, blessedly

neutral. So much easier than facing people, than having to look happy,

invulnerable, clever. With masks down, I walk, talking to the moon, to the

neutral impersonal force that does not hear, but merely accepts my being.

And does not smite me. "

- Sylvia Plath

[Guest guest]

Interesting.... I had the same issues when I was younger but you know when

ur parents take care of it all.... you don't really think about it. I don't

often have them as an adult and it's been over a year since I have had the

chills stuff like now... have had flares but the whole temp issue... is

harder to deal with for me..... Now. im just wearing cute socks, some throws

and swaddled in pillows... haha.... sigh...

Thanks for your feedback

Issadora (28, JRA/FMS)

On 2/28/06, Salvucci <lisa_salvucci@...> wrote:

>

> I have always had fevers with my flares.. but I have Juvenile Ankylosing

> Spondylitis.. but when they orginally said that I had Poly JRA they said

> that sometimes Polys will have some systemic like symptoms with some of

> their flares.. so I dont know..

>

> (JAS, 21)

>

>

>

> Issadora <FlyfreeIzzie@...> wrote:

> Hello everyone-

>

> I just feel like venting. I'm in college, love it, can't wait to graduate

> but lately, my level of pain has been pretty insane and in the last couple

> days, have had the whole chills, can't warm up, major fatigue for hours on

> end. Doesnt make studying easy. Doesnt make positive attitude easy....

> sigh.

> I had to give a presentation today on The Effect of Physical Stigma on

> Peer

> Acceptance or Rejection in Pre School children, came home, promptly slept

> for hours, cold, (live in san diego)... and still fatigued and cold now..

> hours latter.

>

> My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> woman but only has a lot of medication to try and put me on. I had asked

> her

> if others with PolyJRA go through the chills/fever thing when they flare

> and

> she wasn't aware of that happening except for in systemic. Don't know what

> to make of that. Whatever the case, I'm miserable and having a hard time

> managing it mood wise. My mom wants me to come home so she can take care

> of

> me.... but I need to care for myself...

>

> Anyways, that's all.... sigh

>

> Issadora (PolyJRA since age 5 and Fibro since age 7)

>

> --

> " So, now I shall talk every night. To myself. To the moon. I shall walk,

> as

> I did tonight, jealous of my loneliness, in the blue-silver of the cold

> moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> myraid sparkles. I talk to myself and look at the dark trees, blessedly

> neutral. So much easier than facing people, than having to look happy,

> invulnerable, clever. With masks down, I walk, talking to the moon, to the

> neutral impersonal force that does not hear, but merely accepts my being.

> And does not smite me. "

> - Sylvia Plath

>

>

>

[Guest guest]

Yeah I just switched over to adult rheumatology in August so I'm now getting

used to this whole I'm an adult and need to actually pay attention to what the

doctors are saying and remember everything that is going on. You could always

try contacting your old rheumatologist and find out if that is a normal thing

with a flare, or have your blood levels checked to make sure there isn't like an

underlying infection causing those problems. But if your pretty sure it is just

from the flare.. I guess you just have to bundle up.. in San Diego.. I hope you

start to feel better!

Lots of Love

(JAS, 21)

Issadora <FlyfreeIzzie@...> wrote:

Interesting.... I had the same issues when I was younger but you know when

ur parents take care of it all.... you don't really think about it. I don't

often have them as an adult and it's been over a year since I have had the

chills stuff like now... have had flares but the whole temp issue... is

harder to deal with for me..... Now. im just wearing cute socks, some throws

and swaddled in pillows... haha.... sigh...

Thanks for your feedback

Issadora (28, JRA/FMS)

On 2/28/06, Salvucci <lisa_salvucci@...> wrote:

>

> I have always had fevers with my flares.. but I have Juvenile Ankylosing

> Spondylitis.. but when they orginally said that I had Poly JRA they said

> that sometimes Polys will have some systemic like symptoms with some of

> their flares.. so I dont know..

>

> (JAS, 21)

>

>

>

> Issadora <FlyfreeIzzie@...> wrote:

> Hello everyone-

>

> I just feel like venting. I'm in college, love it, can't wait to graduate

> but lately, my level of pain has been pretty insane and in the last couple

> days, have had the whole chills, can't warm up, major fatigue for hours on

> end. Doesnt make studying easy. Doesnt make positive attitude easy....

> sigh.

> I had to give a presentation today on The Effect of Physical Stigma on

> Peer

> Acceptance or Rejection in Pre School children, came home, promptly slept

> for hours, cold, (live in san diego)... and still fatigued and cold now..

> hours latter.

>

> My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> woman but only has a lot of medication to try and put me on. I had asked

> her

> if others with PolyJRA go through the chills/fever thing when they flare

> and

> she wasn't aware of that happening except for in systemic. Don't know what

> to make of that. Whatever the case, I'm miserable and having a hard time

> managing it mood wise. My mom wants me to come home so she can take care

> of

> me.... but I need to care for myself...

>

> Anyways, that's all.... sigh

>

> Issadora (PolyJRA since age 5 and Fibro since age 7)

>

> --

> " So, now I shall talk every night. To myself. To the moon. I shall walk,

> as

> I did tonight, jealous of my loneliness, in the blue-silver of the cold

> moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> myraid sparkles. I talk to myself and look at the dark trees, blessedly

> neutral. So much easier than facing people, than having to look happy,

> invulnerable, clever. With masks down, I walk, talking to the moon, to the

> neutral impersonal force that does not hear, but merely accepts my being.

> And does not smite me. "

> - Sylvia Plath

>

>

>

[Guest guest]

Hi Issadora. Now this might just be a mom thing, but are you sure you

are not sick with something else? That this is not just JRA related?

Having two college students of my own, I know that you guys wear

yourselves down with intense studying, not eating right all the time,

etc. My oldest is sick again with a virus of some sort, and had

mono at the beginning of the school year, and is still exhausted and

having cold symptoms on and off. If this keeps up, get yourself over to

the clinic (I'm sure your school has one) and get it checked out. Ok,

this mom will stop nagging now - I'm sure your mom has said the same

thing - but us mom's have got to stick together! LOL Michele (

18, spondy)

chills, heat, thrills...

Hello everyone-

I just feel like venting. I'm in college, love it, can't wait to

graduate

but lately, my level of pain has been pretty insane and in the last

couple

days, have had the whole chills, can't warm up, major fatigue for hours

on

end. Doesnt make studying easy. Doesnt make positive attitude easy....

sigh.

I had to give a presentation today on The Effect of Physical Stigma on

Peer

Acceptance or Rejection in Pre School children, came home, promptly

slept

for hours, cold, (live in san diego)... and still fatigued and cold

now..

hours latter.

My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

woman but only has a lot of medication to try and put me on. I had asked

her

if others with PolyJRA go through the chills/fever thing when they flare

and

she wasn't aware of that happening except for in systemic. Don't know

what

to make of that. Whatever the case, I'm miserable and having a hard time

managing it mood wise. My mom wants me to come home so she can take care

of

me.... but I need to care for myself...

Anyways, that's all.... sigh

Issadora (PolyJRA since age 5 and Fibro since age 7)

--

" So, now I shall talk every night. To myself. To the moon. I shall walk,

as

I did tonight, jealous of my loneliness, in the blue-silver of the cold

moon, shining brilliantly on the drifts of fresh-fallen snow, with the

myraid sparkles. I talk to myself and look at the dark trees, blessedly

neutral. So much easier than facing people, than having to look happy,

invulnerable, clever. With masks down, I walk, talking to the moon, to

the

neutral impersonal force that does not hear, but merely accepts my

being.

And does not smite me. "

- Sylvia Plath

[Guest guest]

Hope you have a good adult Rheumy... I like mine but she just isn't

as competent in JA diseases. She doesnt have many patients with it.

One rheumatologist had felt that the chills come from my consistently

high infmammatory markers. My sed rate is always between 40-60 and my

CRP is also elevated 99% of the time along with the whole anemia

thing. No one knows what to do about it because nothing works to get

it down but it has been a thought in the past that the fevers and

some of the other more atypical JRA stuff I deal with is related to

that.

I sometimes do talk to my old rheumatologist... pediatric one.

SOmetimes she drives me nuts but It's good to still have contact with

her. Of course, one thing she told me one day that she has never been

able to figure out some of my strange symptoms and it's always

bothered her so she had hopes that someone would figure it out...

lol.

Blah.. oh well... in the mean time, I'm cold.. and tired! ugh...

Good fortune

> > Hello everyone-

> >

> > I just feel like venting. I'm in college, love it, can't wait to

graduate

> > but lately, my level of pain has been pretty insane and in the

last couple

> > days, have had the whole chills, can't warm up, major fatigue for

hours on

> > end. Doesnt make studying easy. Doesnt make positive attitude

easy....

> > sigh.

> > I had to give a presentation today on The Effect of Physical

Stigma on

> > Peer

> > Acceptance or Rejection in Pre School children, came home,

promptly slept

> > for hours, cold, (live in san diego)... and still fatigued and

cold now..

> > hours latter.

> >

> > My adult Rheumatologist isnt the most familiar with JRA.... she's

a nice

> > woman but only has a lot of medication to try and put me on. I

had asked

> > her

> > if others with PolyJRA go through the chills/fever thing when

they flare

> > and

> > she wasn't aware of that happening except for in systemic. Don't

know what

> > to make of that. Whatever the case, I'm miserable and having a

hard time

> > managing it mood wise. My mom wants me to come home so she can

take care

> > of

> > me.... but I need to care for myself...

> >

> > Anyways, that's all.... sigh

> >

> > Issadora (PolyJRA since age 5 and Fibro since age 7)

> >

> > --

> > " So, now I shall talk every night. To myself. To the moon. I

shall walk,

> > as

> > I did tonight, jealous of my loneliness, in the blue-silver of

the cold

> > moon, shining brilliantly on the drifts of fresh-fallen snow,

with the

> > myraid sparkles. I talk to myself and look at the dark trees,

blessedly

> > neutral. So much easier than facing people, than having to look

happy,

> > invulnerable, clever. With masks down, I walk, talking to the

moon, to the

> > neutral impersonal force that does not hear, but merely accepts

my being.

> > And does not smite me. "

> > - Sylvia Plath

> >

> >

> >

[Guest guest]

Hi Issadora,

I too get those chills and shakes and even with all the blankets I don't warm

up until it's ready to stop. I too get very tired. You are doing great going to

college. I had to quit. I had gotten two flairs and lost alot of class time. The

pain was too much to drive there and back and study? What's that when one is in

pain I can't think! I can say I know how you feel. I have had JRA since age 2.

I hope you will feel so much better soon.

Oh and my Rhumathologist she also doesn't know what the chills are from and

never heard of anyone else who ever had them. Preds are all she seems to give

me.

Hugs; paulette

Issadora <FlyfreeIzzie@...> wrote:

Hello everyone-

I just feel like venting. I'm in college, love it, can't wait to graduate

but lately, my level of pain has been pretty insane and in the last couple

days, have had the whole chills, can't warm up, major fatigue for hours on

end. Doesnt make studying easy. Doesnt make positive attitude easy.... sigh.

I had to give a presentation today on The Effect of Physical Stigma on Peer

Acceptance or Rejection in Pre School children, came home, promptly slept

for hours, cold, (live in san diego)... and still fatigued and cold now..

hours latter.

My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

woman but only has a lot of medication to try and put me on. I had asked her

if others with PolyJRA go through the chills/fever thing when they flare and

she wasn't aware of that happening except for in systemic. Don't know what

to make of that. Whatever the case, I'm miserable and having a hard time

managing it mood wise. My mom wants me to come home so she can take care of

me.... but I need to care for myself...

Anyways, that's all.... sigh

Issadora (PolyJRA since age 5 and Fibro since age 7)

--

" So, now I shall talk every night. To myself. To the moon. I shall walk, as

I did tonight, jealous of my loneliness, in the blue-silver of the cold

moon, shining brilliantly on the drifts of fresh-fallen snow, with the

myraid sparkles. I talk to myself and look at the dark trees, blessedly

neutral. So much easier than facing people, than having to look happy,

invulnerable, clever. With masks down, I walk, talking to the moon, to the

neutral impersonal force that does not hear, but merely accepts my being.

And does not smite me. "

- Sylvia Plath

[Guest guest]

Thanks for writing Sunshine.. I like the ginger sunshine name.. that's cute.

Ugh, yes, the whole chills, etc,, nothing can warm you up.. i hate it.. and

yes, college is so hard when dealing with all of this stuff. I have lost

alot of class time as well and last quarter, got so sick that I had to drop

all of my classes. I have dropped to part time almost every quarter and it

is very upsetting. I know I can't help it but it still hurts emotionally

more than anything else. Sometimes it gets me really down especialy because

I used to have such a positive attitude about my health obstacles but these

days, it's just harder to deal with. I live on campus, that helps a lot but

overall, life is a challenge more so than other times as you know.. the ups

and downs. If it wernt for my scooter, I wouldnt make it!!

And yep... prednisone is the offer.... yuk... like I need MORE problems!

Last time I had injections with medrol in them, my body went INTO a flare!!!

I felt better after that but the pain was pretty bad for a couple days.

I'm sorry to hear that you had to leave college. I'm about to graduate but

want to go into a doctoral program and really wonder if im nuts! haha.

Anyways, thanks for writing.

Issadora

On 3/1/06, Ginger Sunshine <pct777@...> wrote:

>

> Hi Issadora,

>

> I too get those chills and shakes and even with all the blankets I don't

> warm up until it's ready to stop. I too get very tired. You are doing great

> going to college. I had to quit. I had gotten two flairs and lost alot of

> class time. The pain was too much to drive there and back and study? What's

> that when one is in pain I can't think! I can say I know how you feel. I

> have had JRA since age 2.

>

> I hope you will feel so much better soon.

>

> Oh and my Rhumathologist she also doesn't know what the chills are from

> and never heard of anyone else who ever had them. Preds are all she seems to

> give me.

>

> Hugs; paulette

>

> Issadora <FlyfreeIzzie@...> wrote:

> Hello everyone-

>

> I just feel like venting. I'm in college, love it, can't wait to graduate

> but lately, my level of pain has been pretty insane and in the last couple

> days, have had the whole chills, can't warm up, major fatigue for hours on

> end. Doesnt make studying easy. Doesnt make positive attitude easy....

> sigh.

> I had to give a presentation today on The Effect of Physical Stigma on

> Peer

> Acceptance or Rejection in Pre School children, came home, promptly slept

> for hours, cold, (live in san diego)... and still fatigued and cold now..

> hours latter.

>

> My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> woman but only has a lot of medication to try and put me on. I had asked

> her

> if others with PolyJRA go through the chills/fever thing when they flare

> and

> she wasn't aware of that happening except for in systemic. Don't know what

> to make of that. Whatever the case, I'm miserable and having a hard time

> managing it mood wise. My mom wants me to come home so she can take care

> of

> me.... but I need to care for myself...

>

> Anyways, that's all.... sigh

>

> Issadora (PolyJRA since age 5 and Fibro since age 7)

>

> --

> " So, now I shall talk every night. To myself. To the moon. I shall walk,

> as

> I did tonight, jealous of my loneliness, in the blue-silver of the cold

> moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> myraid sparkles. I talk to myself and look at the dark trees, blessedly

> neutral. So much easier than facing people, than having to look happy,

> invulnerable, clever. With masks down, I walk, talking to the moon, to the

> neutral impersonal force that does not hear, but merely accepts my being.

> And does not smite me. "

> - Sylvia Plath

>

>

>

[Guest guest]

do you go to UC San Diego or San Diego State? Or somewhere else? I got into San

Diego State but I'm going to Sac State instead

Issadora <FlyfreeIzzie@...> wrote: Thanks for writing Sunshine.. I like

the ginger sunshine name.. that's cute.

Ugh, yes, the whole chills, etc,, nothing can warm you up.. i hate it.. and

yes, college is so hard when dealing with all of this stuff. I have lost

alot of class time as well and last quarter, got so sick that I had to drop

all of my classes. I have dropped to part time almost every quarter and it

is very upsetting. I know I can't help it but it still hurts emotionally

more than anything else. Sometimes it gets me really down especialy because

I used to have such a positive attitude about my health obstacles but these

days, it's just harder to deal with. I live on campus, that helps a lot but

overall, life is a challenge more so than other times as you know.. the ups

and downs. If it wernt for my scooter, I wouldnt make it!!

And yep... prednisone is the offer.... yuk... like I need MORE problems!

Last time I had injections with medrol in them, my body went INTO a flare!!!

I felt better after that but the pain was pretty bad for a couple days.

I'm sorry to hear that you had to leave college. I'm about to graduate but

want to go into a doctoral program and really wonder if im nuts! haha.

Anyways, thanks for writing.

Issadora

On 3/1/06, Ginger Sunshine <pct777@...> wrote:

>

> Hi Issadora,

>

> I too get those chills and shakes and even with all the blankets I don't

> warm up until it's ready to stop. I too get very tired. You are doing great

> going to college. I had to quit. I had gotten two flairs and lost alot of

> class time. The pain was too much to drive there and back and study? What's

> that when one is in pain I can't think! I can say I know how you feel. I

> have had JRA since age 2.

>

> I hope you will feel so much better soon.

>

> Oh and my Rhumathologist she also doesn't know what the chills are from

> and never heard of anyone else who ever had them. Preds are all she seems to

> give me.

>

> Hugs; paulette

>

> Issadora <FlyfreeIzzie@...> wrote:

> Hello everyone-

>

> I just feel like venting. I'm in college, love it, can't wait to graduate

> but lately, my level of pain has been pretty insane and in the last couple

> days, have had the whole chills, can't warm up, major fatigue for hours on

> end. Doesnt make studying easy. Doesnt make positive attitude easy....

> sigh.

> I had to give a presentation today on The Effect of Physical Stigma on

> Peer

> Acceptance or Rejection in Pre School children, came home, promptly slept

> for hours, cold, (live in san diego)... and still fatigued and cold now..

> hours latter.

>

> My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> woman but only has a lot of medication to try and put me on. I had asked

> her

> if others with PolyJRA go through the chills/fever thing when they flare

> and

> she wasn't aware of that happening except for in systemic. Don't know what

> to make of that. Whatever the case, I'm miserable and having a hard time

> managing it mood wise. My mom wants me to come home so she can take care

> of

> me.... but I need to care for myself...

>

> Anyways, that's all.... sigh

>

> Issadora (PolyJRA since age 5 and Fibro since age 7)

>

> --

> " So, now I shall talk every night. To myself. To the moon. I shall walk,

> as

> I did tonight, jealous of my loneliness, in the blue-silver of the cold

> moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> myraid sparkles. I talk to myself and look at the dark trees, blessedly

> neutral. So much easier than facing people, than having to look happy,

> invulnerable, clever. With masks down, I walk, talking to the moon, to the

> neutral impersonal force that does not hear, but merely accepts my being.

> And does not smite me. "

> - Sylvia Plath

>

>

>

[Guest guest]

Oh now you are not nuts! That too is or was my major too. I know how the part

time college was too. I got so depressed and sometimes it lasted for months. I

hated myself. I hated my life. When I got fevers with the pain I couldn't get

out of bed at all sometimes for weeks. I was unable to even go see the

Rhumathologist. I thought that was rather funny that we need to see a doctor

when we are sick but I was the opp. and saw her when I wasn't in pain or having

a flair. But she knew when she took my blood work anyway.

Oh the Preds must have helped alot with the depression and then not being able

to go to school and finnish. Of course I wasn't as close to graduation as your

are now. I had a few more years to go.

I have a scooter now too. I love it. If I didn't have that I would not be able

to walk around Target or Wal Mart.

I remember when I was dignosed. I was rushed to the ER with a 104 fever and

going up and in alot of pain. They admited me and put me in isolation as they

thought I had some bug from somewhere else. They took blood around the clock. It

seemed like every hour or so. I remember my high fevers and how the night nurse

came in with those latex gloves filled with regular tap water and placed them

under each knee and under each arm and when my fever went down I slept. They

called in a Rhumathologist because the blood wasn't looking any better and they

all I guess never saw this before. WEll he came in and put me on a high dose of

Cortazone. Then he took one look and my chest and said ah ha, there's the rash

and he knew right away what it was. Well the funny part was I had a boy friend

at the time and well you know how the cortazone makes the tummy blow up. Ha ha

ha ha He thought I was well, anyway, I wasn't but thought for sure he would leve

me now.

Anyway I sure can feel for you. I know how deep inside we ask why me why this!

And alot of other things. I sure hope you get better as I too hate totally hate

those chills and shakes. Then when I do finally get warm and I take all the

blankets off, I start to chill again. Or if I don't chill up again I am soked. I

have to go change all my clothes. It's like I took a steam bath. But I guess the

doctors aren't aware of these yet or something because mine knows nothing of

this either. She even said, " maybe you have something growing in your blood I

can take a cluture " . I said yeah I have JRA. She smiled then and said she didn't

think this had anything to do with the JRA. But I still get them and she still

don't care. Just keeps me on the Preds.

Have or try to have a good night. Try and think of happy thoughts if that is

possible.

hugs; ginger.

Oh the sunshine is not my real last name. Well I know you could have guessed

that. ha ha ha

Salvucci <lisa_salvucci@...> wrote:

do you go to UC San Diego or San Diego State? Or somewhere else? I got into

San Diego State but I'm going to Sac State instead

Issadora <FlyfreeIzzie@...> wrote: Thanks for writing Sunshine.. I like

the ginger sunshine name.. that's cute.

Ugh, yes, the whole chills, etc,, nothing can warm you up.. i hate it.. and

yes, college is so hard when dealing with all of this stuff. I have lost

alot of class time as well and last quarter, got so sick that I had to drop

all of my classes. I have dropped to part time almost every quarter and it

is very upsetting. I know I can't help it but it still hurts emotionally

more than anything else. Sometimes it gets me really down especialy because

I used to have such a positive attitude about my health obstacles but these

days, it's just harder to deal with. I live on campus, that helps a lot but

overall, life is a challenge more so than other times as you know.. the ups

and downs. If it wernt for my scooter, I wouldnt make it!!

And yep... prednisone is the offer.... yuk... like I need MORE problems!

Last time I had injections with medrol in them, my body went INTO a flare!!!

I felt better after that but the pain was pretty bad for a couple days.

I'm sorry to hear that you had to leave college. I'm about to graduate but

want to go into a doctoral program and really wonder if im nuts! haha.

Anyways, thanks for writing.

Issadora

On 3/1/06, Ginger Sunshine <pct777@...> wrote:

>

> Hi Issadora,

>

> I too get those chills and shakes and even with all the blankets I don't

> warm up until it's ready to stop. I too get very tired. You are doing great

> going to college. I had to quit. I had gotten two flairs and lost alot of

> class time. The pain was too much to drive there and back and study? What's

> that when one is in pain I can't think! I can say I know how you feel. I

> have had JRA since age 2.

>

> I hope you will feel so much better soon.

>

> Oh and my Rhumathologist she also doesn't know what the chills are from

> and never heard of anyone else who ever had them. Preds are all she seems to

> give me.

>

> Hugs; paulette

>

> Issadora <FlyfreeIzzie@...> wrote:

> Hello everyone-

>

> I just feel like venting. I'm in college, love it, can't wait to graduate

> but lately, my level of pain has been pretty insane and in the last couple

> days, have had the whole chills, can't warm up, major fatigue for hours on

> end. Doesnt make studying easy. Doesnt make positive attitude easy....

> sigh.

> I had to give a presentation today on The Effect of Physical Stigma on

> Peer

> Acceptance or Rejection in Pre School children, came home, promptly slept

> for hours, cold, (live in san diego)... and still fatigued and cold now..

> hours latter.

>

> My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> woman but only has a lot of medication to try and put me on. I had asked

> her

> if others with PolyJRA go through the chills/fever thing when they flare

> and

> she wasn't aware of that happening except for in systemic. Don't know what

> to make of that. Whatever the case, I'm miserable and having a hard time

> managing it mood wise. My mom wants me to come home so she can take care

> of

> me.... but I need to care for myself...

>

> Anyways, that's all.... sigh

>

> Issadora (PolyJRA since age 5 and Fibro since age 7)

>

> --

> " So, now I shall talk every night. To myself. To the moon. I shall walk,

> as

> I did tonight, jealous of my loneliness, in the blue-silver of the cold

> moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> myraid sparkles. I talk to myself and look at the dark trees, blessedly

> neutral. So much easier than facing people, than having to look happy,

> invulnerable, clever. With masks down, I walk, talking to the moon, to the

> neutral impersonal force that does not hear, but merely accepts my being.

> And does not smite me. "

> - Sylvia Plath

>

>

>

[Guest guest]

What kind of scooter do you have?

Yes, for me, as long as it doesnt break, it's a life saver.. thank goodness.

I don't know how I would make it otherwise but still, things are painful and

hard. I can't deal with 'normal' desk so it's helpful to have my scooter

that has a comfy seat.... Of course, the issue is that because of the

presence of a wheelchair, I deal with negative reactions from that as well..

grrrr....

I have been in bed all day... got confused about the days and forgot I had

class this afternoon so was sleeping at that time.. grrr. Tomorrow, Im going

to the pain clinic... see what those goofs have to say. They called me

earlier to move my appointment up some so hopefully I won't wait forever for

nothing. My primary is supposed to talk to them about his concerns for me

and the greater need for pain management.

I haven't seen my Rheumy in ages... mostly because it's useless right now. I

think something useful needs to happen....

I guess Im in a bad mood about it all.... lol....

Thanks for your feedback again.... at least others understand and care...

I

On 3/1/06, Ginger Sunshine <pct777@...> wrote:

>

> Oh now you are not nuts! That too is or was my major too. I know how the

> part time college was too. I got so depressed and sometimes it lasted for

> months. I hated myself. I hated my life. When I got fevers with the pain I

> couldn't get out of bed at all sometimes for weeks. I was unable to even go

> see the Rhumathologist. I thought that was rather funny that we need to see

> a doctor when we are sick but I was the opp. and saw her when I wasn't in

> pain or having a flair. But she knew when she took my blood work anyway.

>

> Oh the Preds must have helped alot with the depression and then not

> being able to go to school and finnish. Of course I wasn't as close to

> graduation as your are now. I had a few more years to go.

>

> I have a scooter now too. I love it. If I didn't have that I would not

> be able to walk around Target or Wal Mart.

>

> I remember when I was dignosed. I was rushed to the ER with a 104 fever

> and going up and in alot of pain. They admited me and put me in isolation as

> they thought I had some bug from somewhere else. They took blood around the

> clock. It seemed like every hour or so. I remember my high fevers and how

> the night nurse came in with those latex gloves filled with regular tap

> water and placed them under each knee and under each arm and when my fever

> went down I slept. They called in a Rhumathologist because the blood wasn't

> looking any better and they all I guess never saw this before. WEll he came

> in and put me on a high dose of Cortazone. Then he took one look and my

> chest and said ah ha, there's the rash and he knew right away what it was.

> Well the funny part was I had a boy friend at the time and well you know how

> the cortazone makes the tummy blow up. Ha ha ha ha He thought I was well,

> anyway, I wasn't but thought for sure he would leve me now.

>

> Anyway I sure can feel for you. I know how deep inside we ask why me why

> this! And alot of other things. I sure hope you get better as I too hate

> totally hate those chills and shakes. Then when I do finally get warm and I

> take all the blankets off, I start to chill again. Or if I don't chill up

> again I am soked. I have to go change all my clothes. It's like I took a

> steam bath. But I guess the doctors aren't aware of these yet or something

> because mine knows nothing of this either. She even said, " maybe you have

> something growing in your blood I can take a cluture " . I said yeah I have

> JRA. She smiled then and said she didn't think this had anything to do with

> the JRA. But I still get them and she still don't care. Just keeps me on the

> Preds.

>

> Have or try to have a good night. Try and think of happy thoughts if

> that is possible.

>

> hugs; ginger.

>

> Oh the sunshine is not my real last name. Well I know you could have

> guessed that. ha ha ha

>

> Salvucci <lisa_salvucci@...> wrote:

> do you go to UC San Diego or San Diego State? Or somewhere else? I got

> into San Diego State but I'm going to Sac State instead

>

> Issadora <FlyfreeIzzie@...> wrote: Thanks for writing Sunshine.. I

> like the ginger sunshine name.. that's cute.

>

> Ugh, yes, the whole chills, etc,, nothing can warm you up.. i hate it..

> and

> yes, college is so hard when dealing with all of this stuff. I have lost

> alot of class time as well and last quarter, got so sick that I had to

> drop

> all of my classes. I have dropped to part time almost every quarter and it

> is very upsetting. I know I can't help it but it still hurts emotionally

> more than anything else. Sometimes it gets me really down especialy

> because

> I used to have such a positive attitude about my health obstacles but

> these

> days, it's just harder to deal with. I live on campus, that helps a lot

> but

> overall, life is a challenge more so than other times as you know.. the

> ups

> and downs. If it wernt for my scooter, I wouldnt make it!!

>

> And yep... prednisone is the offer.... yuk... like I need MORE problems!

> Last time I had injections with medrol in them, my body went INTO a

> flare!!!

> I felt better after that but the pain was pretty bad for a couple days.

>

> I'm sorry to hear that you had to leave college. I'm about to graduate but

> want to go into a doctoral program and really wonder if im nuts! haha.

>

> Anyways, thanks for writing.

>

> Issadora

>

>

> On 3/1/06, Ginger Sunshine <pct777@...> wrote:

> >

> > Hi Issadora,

> >

> > I too get those chills and shakes and even with all the blankets I

> don't

> > warm up until it's ready to stop. I too get very tired. You are doing

> great

> > going to college. I had to quit. I had gotten two flairs and lost alot

> of

> > class time. The pain was too much to drive there and back and study?

> What's

> > that when one is in pain I can't think! I can say I know how you feel. I

> > have had JRA since age 2.

> >

> > I hope you will feel so much better soon.

> >

> > Oh and my Rhumathologist she also doesn't know what the chills are

> from

> > and never heard of anyone else who ever had them. Preds are all she

> seems to

> > give me.

> >

> > Hugs; paulette

> >

> > Issadora <FlyfreeIzzie@...> wrote:

> > Hello everyone-

> >

> > I just feel like venting. I'm in college, love it, can't wait to

> graduate

> > but lately, my level of pain has been pretty insane and in the last

> couple

> > days, have had the whole chills, can't warm up, major fatigue for hours

> on

> > end. Doesnt make studying easy. Doesnt make positive attitude easy....

> > sigh.

> > I had to give a presentation today on The Effect of Physical Stigma on

> > Peer

> > Acceptance or Rejection in Pre School children, came home, promptly

> slept

> > for hours, cold, (live in san diego)... and still fatigued and cold

> now..

> > hours latter.

> >

> > My adult Rheumatologist isnt the most familiar with JRA.... she's a nice

> > woman but only has a lot of medication to try and put me on. I had asked

> > her

> > if others with PolyJRA go through the chills/fever thing when they flare

> > and

> > she wasn't aware of that happening except for in systemic. Don't know

> what

> > to make of that. Whatever the case, I'm miserable and having a hard time

> > managing it mood wise. My mom wants me to come home so she can take care

> > of

> > me.... but I need to care for myself...

> >

> > Anyways, that's all.... sigh

> >

> > Issadora (PolyJRA since age 5 and Fibro since age 7)

> >

> > --

> > " So, now I shall talk every night. To myself. To the moon. I shall walk,

> > as

> > I did tonight, jealous of my loneliness, in the blue-silver of the cold

> > moon, shining brilliantly on the drifts of fresh-fallen snow, with the

> > myraid sparkles. I talk to myself and look at the dark trees, blessedly

> > neutral. So much easier than facing people, than having to look happy,

> > invulnerable, clever. With masks down, I walk, talking to the moon, to

> the

> > neutral impersonal force that does not hear, but merely accepts my

> being.

> > And does not smite me. "

> > - Sylvia Plath

> >

> >

> >