Re: Progressive?

[Guest guest]

I realize that this is a progressive disease. We can only stave off the disease with medication. Without the meds, we could die rather quickly. BUT the miracle of medicines, we can survive a long time....nearly a normal life span! That is why, if we are maintaining our LFT's, then we are making progression to slowing this disease.

I am glad your LFT's are holding. The fact that you are not on prednisone is wonderful! WOW....that is awesome...something that I hope to achieve soon!

Thanks for sharing.....debby AIH 7/01

[ ] progressive?

I am writing to answer the question about AIH being progressive. I was diagnosed in 1998 w/ AIH being mild. My liver was inflamed with the typical "piecemeal necrosis". I had another biopsy just this last fall (2001) and now have bridging fibrosis. That is definitely a progression in my book. I have been on Imuran only, with my labs staying just slightly above normal (~55). My doc increased my Imuran from 50 mg once a day to twice a day, and my level are now staying within normal limits (~25). I am hoping this means that I will not have any further fibrosis.

What have others experienced? Jo

[Guest guest]

Hi, my biopsy in Mar 2001 showed Stage 3 fibrosis. Except for a slight inflammation once after that, my labs have been well within normal, in the teens and twenties, Thanks to God, and I have been off steroid for 1 month now...still checking liver panel every couple weeks to be sure...dont know when Doc is going to have another biopsy, if at all since there havent been flareups...but it wouldbe interesting to do it just to see how much the disease progresses regardless, if at all. aisha [ ] progressive? I am writing to answer the question about AIH being progressive. I was diagnosed in 1998 w/ AIH being mild. My liver was inflamed with the typical "piecemeal necrosis". I had another biopsy just this last fall (2001) and now have bridging fibrosis. That is definitely a progression in my book. I have been on Imuran only, with my labs staying just slightly above normal (~55). My doc increased my Imuran from 50 mg once a day to twice a day, and my level are now staying within normal limits (~25). I am hoping this means that I will not have any further fibrosis. What have others experienced? Jo

[Guest guest]

Hi Aisha,

I was recently diagnosed and dont know too much about the stages of fibrosis. How long ago were you diagnosed? I know that when I had my liver biopsy it was normal, I do not have any liver damage, but do have an inflamed liver. Sometimes I get pains and usually have stomach cramps, get itchy once in a while, and the one thing that really bothers me is that I get tired more often. Do you feel the same? Thank you for writing.

Francine

-----Original Message-----From: aisha yeoh [mailto:aishayeoh@...]Sent: Thursday, July 11, 2002 6:06 AM Subject: Re: [ ] progressive?

Hi, my biopsy in Mar 2001 showed Stage 3 fibrosis. Except for a slight inflammation once after that, my labs have been well within normal, in the teens and twenties, Thanks to God, and I have been off steroid for 1 month now...still checking liver panel every couple weeks to be sure...dont know when Doc is going to have another biopsy, if at all since there havent been flareups...but it wouldbe interesting to do it just to see how much the disease progresses regardless, if at all.

aisha

[ ] progressive?

I am writing to answer the question about AIH being progressive. I was diagnosed in 1998 w/ AIH being mild. My liver was inflamed with the typical "piecemeal necrosis". I had another biopsy just this last fall (2001) and now have bridging fibrosis. That is definitely a progression in my book. I have been on Imuran only, with my labs staying just slightly above normal (~55). My doc increased my Imuran from 50 mg once a day to twice a day, and my level are now staying within normal limits (~25). I am hoping this means that I will not have any further fibrosis.

What have others experienced? Jo

[Guest guest]

Hi Francine,

I don't have my biopsy results with me to tell you exactly what it says.

But my hepatologist pointed out that if fibrosis is Stage 4, it's pretty

close to transplant stage. Boy, was I lucky. If I had not had that routine

bloodwork done any sooner and discovered the elevated liver enzymes, I

could've been a Stage 4. Apparently my liver enzymes, when they climb, they

climb astronomically. They are presently under control.

Has your doctor determined for sure that the pain/cramps are associated with

the liver and not another organ?

I sometimes do get tired (I wonder if that's the prednisone leaving my

body-1 month off it now), and with it nausea, sometimes, but I wonder if

that's from running around and working too much, and my high blood pressure

(partly genetic, partly from the steroid I'd been taking for a year and

half), or just the heat (it's only upper 80s in Seattle, better than the

rest of the country, but I think I am allergic to heat).

Well, when I get ahold of my biopsy result I am going to tell you what it

says exactly.

I hope your good days are more than your tired ones, but you are definitely

not alone there. As I am writing to you now, I am tired and slightly

nauseated.

I am definitely thinking of you.

love and hugs,

aisha

>From: Francine Trujillo <f-trujillo@...>

>Reply-

> " ' ' " < >

>Subject: RE: [ ] progressive?

>Date: Thu, 11 Jul 2002 07:09:37 -0700

>

>Hi Aisha,

>

>I was recently diagnosed and dont know too much about the stages of

>fibrosis. How long ago were you diagnosed? I know that when I had my liver

>biopsy it was normal, I do not have any liver damage, but do have an

>inflamed liver. Sometimes I get pains and usually have stomach cramps,

>get

>itchy once in a while, and the one thing that really bothers me is that I

>get tired more often. Do you feel the same? Thank you for writing.

>

>Francine

>

> Re: [ ] progressive?

>

>

>Hi, my biopsy in Mar 2001 showed Stage 3 fibrosis. Except for a slight

>inflammation once after that, my labs have been well within normal, in the

>teens and twenties, Thanks to God, and I have been off steroid for 1 month

>now...still checking liver panel every couple weeks to be sure...dont know

>when Doc is going to have another biopsy, if at all since there havent been

>flareups...but it wouldbe interesting to do it just to see how much the

>disease progresses regardless, if at all.

>

>aisha

>

>

> [ ] progressive?

>

>I am writing to answer the question about AIH being progressive. I was

>diagnosed in 1998 w/ AIH being mild. My liver was inflamed with the typical

> " piecemeal necrosis " . I had another biopsy just this last fall (2001) and

>now have bridging fibrosis. That is definitely a progression in my book. I

>have been on Imuran only, with my labs staying just slightly above normal

>(~55). My doc increased my Imuran from 50 mg once a day to twice a day, and

>my level are now staying within normal limits (~25). I am hoping this means

>that I will not have any further fibrosis.

> What have others experienced? Jo

>

>

[Guest guest]

Stan, I have had RA for the past 9 years, I have been on mtx after waiting 2

months to get in to see the rheumy, if you were introduced to me today, you

would not know that I have a problem. I do everything I used to do. I do have

a little and I do mean a little pain but I don't even take a tylenol for it.

Some days are not so hot but they are not the norm. I did add Remicade last

July to the mix but that didn't help so we dropped that and I am thinking of

adding Orencia with the plan to drop mtx but haven't finalized that yet. My

opinion/expreience is that there are degrees, like on a scale of 1 to 10, 10

being worse, I think I'm a 4 and I hope to remain at that. I do think if I

could lose some of the weight I carry around that that could help also but we

all know how that goes. So good luck and look on the bright side. in PA

[ ] Progressive?

So I am new to all of this just having been diagnosed a month ago and

have had mild to severe symptoms for three to four months. If I don't

deal with anything beyond soft butter (and I know you guys know what I

mean by that) I am pretty much okay on a day to day basis. Now I am

dealing with all the receptionists, doctors, health care workers, and

people you gotta see to deal with the condition. It seems they can't

wait to tell me it's progressive, " it's not going away, it's

progressive! " " Oh I'm so sorry, it's progressive. " I'm really starting

to hate that word. And, they all want to use that word but none of them

are telling what they really mean. I'm getting a little nervous!

Assuming I've got good doctors, taking the proper medication, and do

all the things I can do to maintain RA the best that I can, then what

can I expect over the next few years? I wasn't planning on moving the

Great Pyramid of Giza anytime soon but I am hoping for some quality of

life when everything is said and done.

Nervous in Seattle,

Stan

[Guest guest]

Stan:

I don't have RA, but I do have AS, (RA's close cousin), and like RA, AS

is... " PROGRESSIVE " .

All I can say is get ready for a bumpy ride, brother. Quality of life? Yes,

you can have that, too.

Here's what I think you should expect if your disease course is normal. Periods

of intense pain and a lot of symptoms, commonly called " flares " . Periods where

things are mild, your quality of life is good overall, and your pain and

symptoms are being controlled. Those I call " plateaus " . And times when you may

be totally pain and symptom free.

These diseases are such undiscriminating beasties, they don't care about age,

race, religion, life goals, etc... They are also extremely variable and

different from person to person. Two people with RA/AS/Lupus/Fibro may have

totally different symptoms, flare at totally different times and in different

ways...

I would say that overall, it probably will progress, but there are lots of

things you can do to slow it down.

I've been diagnosed for three years now, and I am still managing to work as a

medic, law enforcement ranger and firefighter. I have more pain and disability

from my burns than I do from the Lupus/AS/SJ/RSD/Fibro...

If you ever would like to communicate off list, you can always write to me.

Here's to better health,

--

Dodge

An optimist thinks that this is the best possible world.

A pessimist fears that this is true.

Read my blog at:

http://jumpthis.wordpress.com

---- detour721 <stanpfister@...> wrote:

=============

So I am new to all of this just having been diagnosed a month ago and

have had mild to severe symptoms for three to four months. If I don't

deal with anything beyond soft butter (and I know you guys know what I

mean by that) I am pretty much okay on a day to day basis. Now I am

dealing with all the receptionists, doctors, health care workers, and

people you gotta see to deal with the condition. It seems they can't

wait to tell me it's progressive, " it's not going away, it's

progressive! " " Oh I'm so sorry, it's progressive. " I'm really starting

to hate that word. And, they all want to use that word but none of them

are telling what they really mean. I'm getting a little nervous!

Assuming I've got good doctors, taking the proper medication, and do

all the things I can do to maintain RA the best that I can, then what

can I expect over the next few years? I wasn't planning on moving the

Great Pyramid of Giza anytime soon but I am hoping for some quality of

life when everything is said and done.

Nervous in Seattle,

Stan

[Guest guest]

Hi and thanks for the input. I am having now exactly what you describe and with

treatment I am improving, so from what you say the outlook can be hopeful. The

only difference being is that at my age (56) and condition my Physician and

Rheumatologist are recommending I keep my physical activity on the light side

and in control. I have been working since 1968 with only one interruption due to

a back injury, so of course will I am not working now I am figuring out how to

set up shop at home while I go through the treatment process. I've added your

name to my address book, I wouldn't want to be a fire fighter in my condition,

so I think maybe you're a hero!

Later,

Stan

[Guest guest]

Stan:

I'm glad you're improving... Improvement is good!

A hero? Nope, I'm not a hero. I'm just someone who was trained to do three

jobs, who does them well, and who is proud of his work. That's it... Not a

hero.

--

Dodge

An optimist thinks that this is the best possible world.

A pessimist fears that this is true.

Read my blog at:

http://jumpthis.wordpress.com

---- stanpfister@... wrote:

=============

Hi and thanks for the input. I am having now exactly what you describe and with

treatment I am improving, so from what you say the outlook can be hopeful. The

only difference being is that at my age (56) and condition my Physician and

Rheumatologist are recommending I keep my physical activity on the light side

and in control. I have been working since 1968 with only one interruption due to

a back injury, so of course will I am not working now I am figuring out how to

set up shop at home while I go through the treatment process. I've added your

name to my address book, I wouldn't want to be a fire fighter in my condition,

so I think maybe you're a hero!

Later,

Stan

[Guest guest]

Hi...

That was helpful and it sounds very hopeful! I believe I was at an 8 or 9 before

diagnosis because I didn't have a clue what was going on and the symptoms were

severe, so now with some immediate treatment and hindsight being 20/20 I became

a 6 or 7. Now that we do know what's going on and I can do something about it I

feel like I am at a 5 and I'm still learning. The good news being that I haven't

even seen a Rheumatologist yet! I didn't even know there was such a thing 'till

last month! So that's very encouraging! I'm also grateful that I got an

appointment in two weeks, I guess I should be more appreciative, and maybe I

should postpone some major decisions until I get some actual Rheumatoid

Arthritis treatment. Can't thank you enough!

Stan

[Guest guest]

every hero says that!

-------------- Original message --------------

From: Dodge <medicdodge@...>

Stan:

I'm glad you're improving... Improvement is good!

A hero? Nope, I'm not a hero. I'm just someone who was trained to do three jobs,

who does them well, and who is proud of his work. That's it... Not a hero.

--

Dodge

An optimist thinks that this is the best possible world.

A pessimist fears that this is true.

Read my blog at:

http://jumpthis.wordpress.com

---- stanpfister@... wrote:

=============

Hi and thanks for the input. I am having now exactly what you describe and with

treatment I am improving, so from what you say the outlook can be hopeful. The

only difference being is that at my age (56) and condition my Physician and

Rheumatologist are recommending I keep my physical activity on the light side

and in control. I have been working since 1968 with only one interruption due to

a back injury, so of course will I am not working now I am figuring out how to

set up shop at home while I go through the treatment process. I've added your

name to my address book, I wouldn't want to be a fire fighter in my condition,

so I think maybe you're a hero!

Later,

Stan

[Guest guest]

Stan, we all know that progress can be really, really slow many times!

While RA can be a crippling disease, so many people are able to live very

well through careful management of the disease. I can understand how you

would be nervous, but if I had a choice of many diseases, this wouldn't be

one of the worst to pick.

Here's what the Arthritis Foundation says:

Rheumatoid arthritis (rue-ma-TOYD arth-write-tis) is a chronic disease,

mainly characterized by inflammation of the lining, or synovium, of the

joints. It can lead to long-term joint damage, resulting in chronic pain,

loss of function and disability.

Rheumatoid arthritis (RA) progresses in three stages. The first stage is the

swelling of the synovial lining, causing pain, warmth, stiffness, redness

and swelling around the joint. Second is the rapid division and growth of

cells, or pannus, which causes the synovium to thicken. In the third stage,

the inflamed cells release enzymes that may digest bone and cartilage, often

causing the involved joint to lose its shape and alignment, more pain, and

loss of movement.

Because it is a chronic disease, RA continues indefinitely and may not go

away. Frequent flares in disease activity can occur. RA is a systemic

disease, which means it can affect other organs in the body. Early diagnosis

and treatment of RA is critical if you want to continue living a productive

lifestyle. Studies have shown that early aggressive treatment of RA can

limit joint damage, which in turn limits loss of movement, decreased ability

to work, higher medical costs and potential surgery.

RA affects 1.3 million Americans. Currently, the cause of RA is unknown,

although there are several theories. And while there is no cure, it is

easier than ever to control RA through the use of new drugs, exercise, joint

protection techniques and self-management techniques. While there is no good

time to have rheumatoid arthritis, advancements in research and drug

development mean that more people with RA are living happier, healthier and

more fulfilling lives.

From: [mailto: ] On

Behalf Of detour721

Sent: Wednesday, August 13, 2008 12:10 PM

Subject: [ ] Progressive?

So I am new to all of this just having been diagnosed a month ago and

have had mild to severe symptoms for three to four months. If I don't

deal with anything beyond soft butter (and I know you guys know what I

mean by that) I am pretty much okay on a day to day basis. Now I am

dealing with all the receptionists, doctors, health care workers, and

people you gotta see to deal with the condition. It seems they can't

wait to tell me it's progressive, " it's not going away, it's

progressive! " " Oh I'm so sorry, it's progressive. " I'm really starting

to hate that word. And, they all want to use that word but none of them

are telling what they really mean. I'm getting a little nervous!

Assuming I've got good doctors, taking the proper medication, and do

all the things I can do to maintain RA the best that I can, then what

can I expect over the next few years? I wasn't planning on moving the

Great Pyramid of Giza anytime soon but I am hoping for some quality of

life when everything is said and done.

Nervous in Seattle,

Stan

[Guest guest]

Thanks!

[Guest guest]

I found it interesting that the information that was found called the

disease " chronic " in several places, but never used the word " progressive " .

dd

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

Just curious, Dorothy, which disease would you classify as the worst to

pick?

Sue

On Wednesday, August 13, 2008, at 05:10 PM, Dorothy wrote:

> Stan, we all know that progress can be really, really slow many times!

> While RA can be a crippling disease, so many people are able to live

> very

> well through careful management of the disease. I can understand how

> you

> would be nervous, but if I had a choice of many diseases, this

> wouldn't be

> one of the worst to pick.

[Guest guest]

Cancer - pancreatic

_____

From: [mailto: ] On

Behalf Of Sue

Sent: Wednesday, August 13, 2008 8:34 PM

Subject: Re: [ ] Progressive?

Just curious, Dorothy, which disease would you classify as the worst to

pick?

Sue

On Wednesday, August 13, 2008, at 05:10 PM, Dorothy wrote:

> Stan, we all know that progress can be really, really slow many times!

> While RA can be a crippling disease, so many people are able to live

> very

> well through careful management of the disease. I can understand how

> you

> would be nervous, but if I had a choice of many diseases, this

> wouldn't be

> one of the worst to pick.

[Guest guest]

Stan,

Unfortunately, RA is unpredictable and expresses itself differently in

different people. I can tell you only of my experience with it.

I was lucky to wait until I was over sixty to get it. It started out

really fierce. I had a very rough year or two at the beginning, because

it usually takes a while to find the best med or combination of meds

that will help the particular individual. I was first put on

methotrexate, which helped some but not enough. Next came Arava, which

helped a lot, but unfortunately those two lowered my white blood cell

count too low. Next came Enbrel, and it is my miracle drug. My pain

level from the RA I would have to say is 0. I do have some pain that my

rheumy says is probably coming from osteoarthritis in my lumbarspine,

but the Enbrel keeps the pain and inflammation of RA at bay.

So just know that there is hope. You mention one of the most important

components of success: good doctors, or especially one good

rheumatologist. The RA should be treated aggressively, and if it's not,

then you need to raise Cain about it. Be the squeaky wheel that gets

the grease.

Sue

On Wednesday, August 13, 2008, at 12:09 PM, detour721 wrote:

>

> Assuming I've got good doctors, taking the proper medication, and do

> all the things I can do to maintain RA the best that I can, then what

> can I expect over the next few years? I wasn't planning on moving the

> Great Pyramid of Giza anytime soon but I am hoping for some quality of

> life when everything is said and done.

> Nervous in Seattle,

> Stan

[Guest guest]

That certainly is one of the worst diseases to get; it is almost always

fatal. Several of Jimmy 's family members died from that, so he

was really lucky to dodge it. I think that lung cancer would rank high

on the list, too.

About six months after I was diagnosed with RA, I was diagnosed with

breast cancer. But it was found very early, so I was extremely lucky

there. But it was odd, RA had prepared me very well for anything,

including breast cancer. I guess I thought that if I could survive RA,

I could survive anything. And so I did. I had a lumpectomy followed by

35 radiation treatments, but didn't have to have chemo. That was six

years ago, and my last mammogram showed that everything was fine.

Sue

On Wednesday, August 13, 2008, at 08:35 PM, Dorothy wrote:

> Cancer - pancreatic

>

[Guest guest]

That's wonderful, Sue. There are so many good things happening in medicine

today. Breast cancer used to be a death sentence and today, it's so common

to know many women who survived it.

After pancreatic cancer, I would rank brain tumors high on my list of worst

although I believe there are advances in surgery so that many survive. I

guess I hear more about those who had cancers that started elsewhere and

usually when it spreads to the brain, the end is very close. I think that's

why that scares me.

I don't know why, but RA doesn't scare me even though I have suffered

through some very hard times with it. I read most of Kathleen 's

book, " Send Yourself Roses. " In the beginning, she says that when a doctor

told her she had RA and that she would end up in a wheelchair, she told him

to go " F " himself! And I guess that's the sort of spunk that gives one the

courage to fight. She did and I believe she's been fairly well the last few

years. When she became heavy and looked bloated from the steroids, the

tabloids wrote that she was a drunk. She never spoke up then to say how ill

she was and also suffered through a divorce as well. A very strong lady.

God willing, those here and the ones they hold dear won't have to suffer

through some of the worst diseases....

_____

From: [mailto: ] On

Behalf Of Sue

Sent: Wednesday, August 13, 2008 8:56 PM

Subject: Re: [ ] Progressive?

That certainly is one of the worst diseases to get; it is almost always

fatal. Several of Jimmy 's family members died from that, so he

was really lucky to dodge it. I think that lung cancer would rank high

on the list, too.

About six months after I was diagnosed with RA, I was diagnosed with

breast cancer. But it was found very early, so I was extremely lucky

there. But it was odd, RA had prepared me very well for anything,

including breast cancer. I guess I thought that if I could survive RA,

I could survive anything. And so I did. I had a lumpectomy followed by

35 radiation treatments, but didn't have to have chemo. That was six

years ago, and my last mammogram showed that everything was fine.

Sue

On Wednesday, August 13, 2008, at 08:35 PM, Dorothy wrote:

> Cancer - pancreatic

_,_._,___

[Guest guest]

It does say: Rheumatoid arthritis (RA) progresses in three stages.

_____

From: [mailto: ] On

Behalf Of dgd301@...

Sent: Wednesday, August 13, 2008 9:48 PM

Subject: Re: [ ] Progressive?

I found it interesting that the information that was found called the

disease " chronic " in several places, but never used the word " progressive " .

dd

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.

<http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000

017> aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 )

[Guest guest]

On Wednesday, August 13, 2008, at 09:08 PM, Dorothy wrote:

>

> After pancreatic cancer, I would rank brain tumors high on my list of

> worst

> although I believe there are advances in surgery so that many survive.

> I

> guess I hear more about those who had cancers that started elsewhere

> and

> usually when it spreads to the brain, the end is very close. I think

> that's

> why that scares me.

One of my aunts had lung cancer that spread to her brain. Fortunately,

she was not in a great deal of pain until the very end.

> I don't know why, but RA doesn't scare me even though I have suffered

> through some very hard times with it. I read most of Kathleen 's

> book, " Send Yourself Roses. "

I knew that she had RA, but I didn't know that she'd written a book

about it. I'll have to see if I can find it in the library.

Sue

[Guest guest]

I got it at my library. There isn't a whole lot in there about the RA, but

she does have some references about how she seemingly got her health back.

She relates a story about how she ran into the wife of some well-known man

outside her daughter's private school in NYC & the woman saw her struggling.

The woman's child had juvenile RA and she immediately got Kathleen an

appointment with a doctor she recommended

I do recommend the book. I've always liked her...she seemed like a real

spunky lady! When I Googled her, I found this which is an excerpt from the

book:

Was it false pride, or stubbornness, or an inability to be vulnerable? Yes,

all of that. I was trying so hard to work at all, and I was terrified that

I'd never work again if anyone knew that I had a mysterious, scary illness.

Sometimes, my feet blew up so badly that I couldn't walk on them. The skin

became so tightly stretched because of the fluid in my feet that it started

to crack.

When that happened, my toes looked like little sausages and my feet didn't

look much like feet any more; they were just these huge things at the end of

my legs. Sometimes, they burst, exposing bone and muscle.

Meanwhile, the joints in my hands were so swollen, I couldn't hold a pen.

Some days, I couldn't even hold a glass.

Ironically, for years, the Press assumed that my puffiness was the result of

an alcohol problem - yet, back then, it wasn't. I didn't publicly refute

this. At least directors might still hire me if they thought I was a drunk.

Then, one day, I tried to pick something up and realized I couldn't

straighten my left arm.

There was a curious bump in it, as though my elbow had moved over to the

inside of my limb.

Soon, I could no longer turn my head. By now - 1993 - I was almost a year

into the symptoms. I'd gone to the top doctor of every f***ing department of

medicine in one of the biggest cities in the goddamn world and they couldn't

help me.

" All right, I'm dying, " I thought. " I have some terrible disease - I don't

think it's cancer, but I'm clearly dying. "

It was at this point that my GP did some more blood tests. The results were

grim: I wasn't dying, but I had severe rheumatoid arthritis, a chronic,

incurable and crippling disease that destroys the lining of the joints. I

was told it could leave me in a wheelchair.

That same day, I went to a parent-teacher conference at my daughter 's

kindergarten. There were all of three stairs up to the door, yet I struggled

to pull myself up, step by step. Inside, there were cute little chairs about

12 inches off the floor.

Well, I looked at those f***ing chairs and burst into tears because I knew

that even if I got into one, I'd never be able to get up again. A kind

teacher offered me her own chair, saying: " Oh, poor thing " .

_____

From: [mailto: ] On

Behalf Of Sue

Sent: Wednesday, August 13, 2008 10:20 PM

Subject: Re: [ ] Progressive?

On Wednesday, August 13, 2008, at 09:08 PM, Dorothy wrote:

>

> After pancreatic cancer, I would rank brain tumors high on my list of

> worst

> although I believe there are advances in surgery so that many survive.

> I

> guess I hear more about those who had cancers that started elsewhere

> and

> usually when it spreads to the brain, the end is very close. I think

> that's

> why that scares me.

One of my aunts had lung cancer that spread to her brain. Fortunately,

she was not in a great deal of pain until the very end.

> I don't know why, but RA doesn't scare me even though I have suffered

> through some very hard times with it. I read most of Kathleen 's

> book, " Send Yourself Roses. "

I knew that she had RA, but I didn't know that she'd written a book

about it. I'll have to see if I can find it in the library.

Sue

[Guest guest]

I will have to find the book. Having a good rheumatologist is so very

important, and I had the very best that I possibly could have had. He

helped me through a terrible time in my life, and for that I'll be

eternally grateful. I just wish he hadn't relocated to Atlanta.

Sue

On Wednesday, August 13, 2008, at 10:39 PM, Dorothy wrote:

> I got it at my library. There isn't a whole lot in there about the

> RA, but

> she does have some references about how she seemingly got her health

> back.

> She relates a story about how she ran into the wife of some well-known

> man

> outside her daughter's private school in NYC & the woman saw her

> struggling.

> The woman's child had juvenile RA and she immediately got Kathleen an

> appointment with a doctor she recommended

[Guest guest]

Hi...

Thanks for the information. I will be seeing a Rhematologist for the first time

next week and I am kinda of glad that I got in so early (think someone

canceled). Whether or not she is good I can only determine by the treatment and

improvement of my condition over a period of time, but based on what you've said

it's gonna be a shorter period because I should see some results right away.

Plus, I've got this group! Everyone has been so supportive, encouraging, and

helpful. I've had a really bad spring and summer, probably the worst of my life

so I understand what you mean by fierce, before " it " hit I had relatively few

symptoms. Now things are improving, and the information like you offer makes

things feel a lot better because " understanding " eliminates a lot of unnecessary

concern. No point in worrying about things that are not gonna happen.

Stan

[Guest guest]

sue and group;

I was wondering to what the worst was that she/he was talking

about. Cause out of all my illnesses ( and I have a lot) RA seem to

bother me the most. Also I read where RA was the worst arthritis to

get. I thought , " it figures since it was RA I had. " Found out last

visit I have Osteo. darn. lol.

hugs gently

Clora

> Just curious, Dorothy, which disease would you classify as the

worst to

> pick?

>

> Sue

>

> On Wednesday, August 13, 2008, at 05:10 PM, Dorothy wrote:

>

> > Stan, we all know that progress can be really, really slow many

times!

> > While RA can be a crippling disease, so many people are able to

live

> > very

> > well through careful management of the disease. I can

understand how

> > you

> > would be nervous, but if I had a choice of many diseases, this

> > wouldn't be

> > one of the worst to pick.

>

[Guest guest]

Omg there is my answer. I would have to agree. See I have something

to be thankful for. Cancer is one of the dreaded words in the

medical world. I am so sorry you have that. I hope its not a death

sentence. I pray you will be alright. God bless you hon.

Clora

> Cancer - pancreatic

>

>

>

>

>

> _____

>

> From: [mailto:RA-

SUPPORT ] On

> Behalf Of Sue

> Sent: Wednesday, August 13, 2008 8:34 PM

>

> Subject: Re: [ ] Progressive?

>

>

>

> Just curious, Dorothy, which disease would you classify as the

worst to

> pick?

>

> Sue

>

> On Wednesday, August 13, 2008, at 05:10 PM, Dorothy wrote:

>

> > Stan, we all know that progress can be really, really slow many

times!

> > While RA can be a crippling disease, so many people are able to

live

> > very

> > well through careful management of the disease. I can understand

how

> > you

> > would be nervous, but if I had a choice of many diseases, this

> > wouldn't be

> > one of the worst to pick.

>

>

>

>

>

>