Whining

[Guest guest]

Kara, Have you thought about designing a form that the teacher can write on

each day with a space for each subject area? If the teacher has a bad

attitude about communicating what you want to know, get it put in your IEP

that the teacher needs to fill out a form that addresses what was done during

the day in each area. NOT just behavior. Is your daughter in a regular ed

class or special ed? If special ed, seems there would be an aide who could

help fill it out. Or, if in regular ed, does she have an aide to do this? I

sure agree that withholding the library book was punishing the child. I have

the same problem, but only have two kids to worry about. If I miss the day,

Gene doesn't get a book but he doesn't seem to mind too much...so I guess

thats good. In 4th grad this year, the kids all have student planners.

Gene's aide fills this out. It has subject areas and a section called

" things to bring home " and " things to bring to school " plus a little box for

messages. (I write in that one and often go outside the box). Anyway, that

would be a good format and you only need two books a year. This planner

notebook comes from Success by Design, Inc. at 800-327-0057. Its designed

for regular ed classrooms, so I'm not sure if they may also design stuff for

special ed classrooms if that is what you are looking for. Lauri S.

[Guest guest]

Kara,

While I can understand your frustration, this is a rule that applies across

the boards -- to all kids, not just ours. They can't bend the rules for

anyone, or the rule would be bent out of recognizable shape. And your

daughter WILL learn to deal with the frustration eventually -- this is how.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

Kara,

While I can understand your frustration, this is a rule that applies across

the boards -- to all kids, not just ours. They can't bend the rules for

anyone, or the rule would be bent out of recognizable shape. And your

daughter WILL learn to deal with the frustration eventually -- this is how.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

Jen is 1/2 day in each. Her aide is the one filling out her notepook, but

the planner is a great idea. I should have something a bit more organized.

Today's not " worked on nouns " . Hmmm - I can run with that.

Kara

At 08:29 PM 1/30/2000 EST, you wrote:

>From: TLstein@...

>

>Kara, Have you thought about designing a form that the teacher can write on

>each day with a space for each subject area? If the teacher has a bad

>attitude about communicating what you want to know, get it put in your IEP

>that the teacher needs to fill out a form that addresses what was done

during

>the day in each area. NOT just behavior. Is your daughter in a regular ed

>class or special ed? If special ed, seems there would be an aide who could

>help fill it out. Or, if in regular ed, does she have an aide to do this? I

>sure agree that withholding the library book was punishing the child. I

have

>the same problem, but only have two kids to worry about. If I miss the day,

>Gene doesn't get a book but he doesn't seem to mind too much...so I guess

>thats good. In 4th grad this year, the kids all have student planners.

>Gene's aide fills this out. It has subject areas and a section called

> " things to bring home " and " things to bring to school " plus a little box for

>messages. (I write in that one and often go outside the box). Anyway, that

>would be a good format and you only need two books a year. This planner

>notebook comes from Success by Design, Inc. at 800-327-0057. Its designed

>for regular ed classrooms, so I'm not sure if they may also design stuff for

>special ed classrooms if that is what you are looking for. Lauri S.

>

>---------------------------

[Guest guest]

Dear Cheryl ID,

Are you depressed? Sounds like it to me. I am sorry to hear you do not have a very supportive family. Speak with your doctors and let them know how you are feeling. Depression is very common with this disease.

Liver disease is unrelentless. In time, you will understand the need to put yourself first -- hard being a mother to do that-- but necessary. Have you tried calling a "family meeting" and just presenting the facts to your family? My youngest was 12 when I met Randy so she became involved with a very ill person just as I did. Twelve is old enough to understand this disease. The apathy, while distressing to you, may be a coping mechanism for your family. Our transplant team was instrumental in making family members understand the magnitude of the illness. Sometimes, when they hear the facts from the doctor, it seems to hold more weight with them.

But the best thing you can do is take care of yourself first, arm yourself with as much knowledge as you can on liver disease and then take each day one at a time. Don't worry if things go undone at home (you have other healthy, responsible adults who can help you)or that you are tired and just feel yucky and want to stay in bed. Do your students know of your condition? Most of them I'm sure would be understanding and helpful when you are having an "off"day. It has been my experience (I used to work at a high school) that the students always came through to help. Yes, there is always that one or two who don't but don't concentrate of them.

We hope you get to feeling better. Hugs to you today.

Cheryl & Randy

Randy tx 12-14-99 AIH

Cheryl is his donor

Living Donor Surgery #2

Cleveland Clinic in Ohio

[Guest guest]

In a message dated 1/26/01 11:33:34 PM Pacific Standard Time, lrb@... writes:

Hey, with all this talk about grapefruit juice, I'm wondering if there is anything wrong with fresh citris fruits. I've been eating a lot of oranges. Has anyone heard if that is bad. The imuran is bothering my stomach. I do have an ulcer and I am on prilosec. Any advice when to take the imuran? Right now I take it in the morning with my breakfast. I'm on 100 mg. I've had a hard week.

Sounds like hard times. The only thing I have any answer for is that oranges don't have the same interaction effects as grapefruits. I don't know whether it matters when one takes Imuran; I do know that Prednisone is said to be most effective taken before 9 a.m. Good luck!

Harper

[Guest guest]

[ ] whining

Hi Cheryl, Sorry you are having such a rough time. So many of the family and friends don't understand just what you are going through. Some time back the following letter was introduced to the group and I copied it for future reference. Hope it helps! Pat (Cyndi's Mom)

A Letter TO People Without Hepatitis Authored by Bek Oberin Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about AIH and its effects, and of those that think they know, many are actually miss-informed. In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me... Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours, too. Please understand the difference between " happy " and " healthy " . When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy,That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, " Oh you're sounding better! " . I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, " sitting " , " walking " , " thinking " , " being sociable " and so on ... it applies to everything. That's what Hepatitis does to you. Please understand that AIH or HCV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, " But you did it before! " , if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that " getting out and doing things " does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes...may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapistam already doing the exercise and diet that I am suppose to do. Another statement that hurts is, " You just need to push yourself more, exercise harder... " Obviously AIH deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, Hepatitis may cause secondary depression ( wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is notcreated by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off he Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.......

[Guest guest]

cheryl722@... wrote:

Dear Cheryl

ID,

Are you depressed?

Sounds like it to me. I am sorry to hear you do not

have a very supportive family.

Speak with your doctors and let them know how

you are feeling.

Depression is very common with this disease.

Liver disease is unrelentless.

In time, you will understand the need to put

yourself first -- hard being

a mother to do that-- but necessary. Have you

tried calling a "family

meeting" and just presenting the facts to your

family? My youngest

was 12 when I met Randy so she became involved with a

very ill person just as

I did. Twelve is old enough to understand this

disease. The apathy,

while distressing to you, may be a coping mechanism for

your family. Our transplant

team was instrumental in making family members

understand the magnitude

of the illness. Sometimes, when they hear the facts

from the doctor, it seems

to hold more weight with them.

But the best thing you can

do is take care of yourself first, arm yourself

with as much knowledge as

you can on liver disease and then take each day one

at a time. Don't worry if

things go undone at home (you have other healthy,

responsible adults who can

help you)or that you are tired and just feel yucky

and want to stay in bed.

Do your students know of your condition? Most of

them I'm sure would be understanding

and helpful when you are having an

"off"day. It has been

my experience (I used to work at a high school) that

the students always came

through to help. Yes, there is always that one or

two who don't but don't

concentrate of them.

We hope you get to feeling

better. Hugs to you today.

Cheryl & Randy

Randy tx 12-14-99

AIH

Cheryl is his donor

Living Donor Surgery #2

Cleveland Clinic in Ohio

[Guest guest]

Steve & Pat Owens wrote:

-----Original

Message-----

From: Cheryl <lrb@...>

Liver Support Group < >

Date: Friday, January 26, 2001

11:31 PM

Subject: [ ] whining

Hi Cheryl, Sorry you are having such a rough

time. So many of the family and friends don't understand just what

you are going through. Some time back the following letter was introduced

to the group and I copied it for future reference. Hope it helps!

Pat (Cyndi's Mom)

A Letter TO People Without Hepatitis

Authored by Bek Oberin

Having Hepatitis means many things change, and a

lot of them are

invisible.

Unlike having cancer or being hurt in an accident,

most people do not

understand even a little about AIH and its effects, and of those that

think

they know, many are actually miss-informed. In the spirit of informing

those

who wish to understand ... These are the things that I would like you

to

understand about me before you judge me...

Please understand that being sick doesn't mean I'm

not still a human

being.

I have to spend most of my day in considerable pain

and exhaustion, and

if you visit I probably don't seem like much fun to be with, but I'm

still me

stuck inside this body. I still worry about life and work and my family

and

friends, and most of the time I'd still like to hear you talk

about yours,

too.

Please understand the difference between "happy"

and "healthy". When

you've got the flu you probably feel miserable with it, but I've been

sick

for years. I can't be miserable all the time, in fact I work hard at

not

being miserable. So if you're talking to me and I sound happy,

it means I'm

happy,That's all. It doesn't mean that I'm not in a lot of pain, or

extremely

tired, or that I'm getting better, or any of those things. Please,

don't

say, "Oh you're sounding better!". I am not sounding better,

I am sounding

happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand

up for ten minutes, doesn't

necessarily mean that I can stand up for twenty minutes, or an hour.

And,

just because I managed to stand up for thirty minutes yesterday doesn't

mean

that I can do the same today. With a lot of diseases you're either

paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,

"sitting",

"walking","thinking", "being sociable" and so on ... it applies to

everything. That's what Hepatitis does to you. Please understand that

AIH or

HCV is variable. It's quite possible (for me, it's common) that one

day I am

able to walk to the park and back, while the next day I'll have trouble

getting to the kitchen.

Please don't attack me when I'm ill by saying, "But you

did it before!",

if you want me to do something then ask if I can. In a similar vein,

I may

need to cancel an invitation at the last minute, if this happens please

do

not take it personally.

Please understand that "getting out and doing things" does

not make me

feel better. Telling me that I need a treadmill, or that I just

need to

loose (or gain) weight, get this exercise machine, join this gym, try

these

classes...may frustrate me to tears, and is not correct... if I was

capable

of doing these things, don't you know that I would? I am working

with my

doctor and physical therapist

am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, "You just need to push

yourself more,

exercise harder..." Obviously AIH deals directly with muscles,

and because

our muscles don't repair themselves the way your muscles do,

this does far

more damage than good and could result in recovery time in days or

weeks or

months from a single activity.

Also, Hepatitis may cause secondary depression ( wouldn't

you get

depressed if you were hurting and exhausted for years on end!?) but

it is not

created by depression. Please understand that if I say I have to sit

down/lie

down/take these pills now, that I do have to do it right now - it can't

be

put off or forgotten just because I'm out for the day (or whatever).

Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's

not because I don't

appreciate the thought, and it's not because I don't want to get well.

It's

because I have had almost every single one of my friends

suggest one at one

point or another. At first I tried them all, but then

I realized that I

was using up so much energy trying things that I was making myself

sicker,

not better. If there was something that cured, or even helped, all

people

with Hepatitis then we'd know about it. This is not a drug-company

conspiracy, there is

worldwide networking (both on and off he Internet) between people with

Hepatitis if something worked we would KNOW.

If after reading that, you still want to suggest a cure,

then do it, but

don't expect me to rush out and try it. I'll take what you said

and discuss

it with my doctor.

In many ways I depend on you - people who are not

sick - I need you to

visit me when I am too sick to go out... Sometimes I need

you to help me

with the shopping, cooking or cleaning. I may need you to take me to

the

doctor, or to the physical therapist. I need you on a different level

too ...

you're my link to the outside world... if you don't come to visit

me, then I

might not get to see you... and, as much as it's possible, I

need you to

understand me.......

[Guest guest]

cheryl722@... wrote:

Dear Cheryl

ID,

Are you depressed?

Sounds like it to me. I am sorry to hear you do not

have a very supportive family.

Speak with your doctors and let them know how

you are feeling.

Depression is very common with this disease.

Liver disease is unrelentless.

In time, you will understand the need to put

yourself first -- hard being

a mother to do that-- but necessary. Have you

tried calling a "family

meeting" and just presenting the facts to your

family? My youngest

was 12 when I met Randy so she became involved with a

very ill person just as

I did. Twelve is old enough to understand this

disease. The apathy,

while distressing to you, may be a coping mechanism for

your family. Our transplant

team was instrumental in making family members

understand the magnitude

of the illness. Sometimes, when they hear the facts

from the doctor, it seems

to hold more weight with them.

But the best thing you can

do is take care of yourself first, arm yourself

with as much knowledge as

you can on liver disease and then take each day one

at a time. Don't worry if

things go undone at home (you have other healthy,

responsible adults who can

help you)or that you are tired and just feel yucky

and want to stay in bed.

Do your students know of your condition? Most of

them I'm sure would be understanding

and helpful when you are having an

"off"day. It has been

my experience (I used to work at a high school) that

the students always came

through to help. Yes, there is always that one or

two who don't but don't

concentrate of them.

We hope you get to feeling

better. Hugs to you today.

Cheryl & Randy

Randy tx 12-14-99

AIH

Cheryl is his donor

Living Donor Surgery #2

Cleveland Clinic in Ohio

[Guest guest]

Cheryl: Sorry I'm so far behind with the group but there isn't enough hours

in the day. I understand what your saying, you would thing illness would

bring a family together but it doesn't happen that way in many cases. My

husband doesn't know why I'm so stressed out. Sick daughter, sick mother,

twice as much work at the office since I'm the only asst. now, working small

cleaning jobs on the side for extra money, getting a yard sale together for a

fund raiser NEED I SAY MORE? I know I can't do it all, people will say if

there's anything I can do then when you ask they don't seem to have the time

or some lame excuse. You get to the point where you want to tell them just

to jump in the lake. I guess this is a good place to vent, right Cheryl? OK

I feel better now. I will pray things get better for you and your family.

Most go finish cleaning out over 200 e-mails but will talk to you soon. Take

care and God bless. Genny/Jodi's Mom/AIH

[Guest guest]

Thanks for posting this again. I am sending a copy to my son-in-law. Genny

[Guest guest]

In a message dated 2/3/01 5:26:05 PM Pacific Standard Time, Babycolt98102690@... writes:

I know I can't do it all, people will say if there's anything I can do then when you ask they don't seem to have the time or some lame excuse.

Someone I know has a very serious form of cancer. She and her husband anticipated the problem you're having with people who ask, vaguely, if there is anything they can do, and then don't. They have put together a "wish list." That won't help your situation if people's wish to help isn't sincere, but it would let people choose something to do that fits their physical and mental abilities, time, money, etc. For example, I have a friend who reluctantly admits she can't bear to be physically close to anyone who is sick -- but she's happy to bring food, shop, provide small gifts, run errands. Making a list to offer people who ask seems worth a try.

Does your employer know your situation? Is he/she sympathetic or not?

And, from everything I read and see, stress is very hard on family relationships. So, at least you can remind yourself it isn't just your family -- most, perhaps all, families find illness to be a major challenge.

I wish I could help.

Best wishes.

Harper

[Guest guest]

may i whine? and sit on the pity pot for a few? 2 yrs ago i started tx on

peg and rib. before tx i had a 9 million viral load and grade 3, stage 3+

biopsy. after the living hell of tx, i finished last sept (02). during tx

my viral load went down to >300,000. after tx, immiediately my viral load

shot up to 14 million and my liver enlarged again. so monday i'm starting

back on pegysis and copeg. this time the doc wants me on it till another tx

comes out (5+/- yrs)! this is the result of a protocol used at the

university hosp where i went to be evaluated for transplant (no go on

trans...too many other medical issues). i hope the sides are not as bad on

peg. and maybe, just maybe, after my year of tx they will lower the dose,

but doc told me not to hold my breath. last time the riba rage was horrible

and so was the depression. so bad i couldn't watch tv. it don't get any

worse than that. suicide is better than no tv!! not that i'm a addict

but.....

i've been on this list for over 2 years but seldom post. i hope ya'll

realize how much i feel a part of this family and how important this list is

in my life. i have learned more here than any internet search!! plus had

some laffs and some crys. please keep doing what you are doing and i

promise to continue to read every single post!! thanks for always being

there!!. send positive thoughts for me on monday!! thanks!!

<<<<<<<<<<<<<<<<<*>>>>>>>>>>>>>>>

0 Tobi Hale, MSW & Sapphie, SDIT

l_

(/)_. It ain't my revolution if it ain't accessible!

WWJB: Who Would Jesus Bomb?

Herbal Information!!

> NEW YORK (Reuters Health) - Different brands of the same herbal

> supplement can vary widely in the label's recommended dose and listed

> ingredients, according to a new study.

>

> University of Minnesota researchers found that among the top herbs

> sold in the U.S. -- including echinacea (news - web sites), ginkgo

> biloba and St. 's wort -- label information differed greatly from

> product to product. And as far as recommended dosage and ingredients,

> fewer than half were consistent with certain " benchmark "

> recommendations.

>

> The benchmark the researchers used was a professionals' handbook on

> alternative medicine. Because the U.S. does not regulate dietary

> supplements as it does drugs, there are no standards for ingredients

> or dosage of herbs. According to the study authors, the handbook --

> which was based on what herbal-product research was available -- is

> one of the few such publications by scientists with no commercial

> interest in the industry.

>

> For the study, Dr. Judith Garrard and her colleagues in Minneapolis

> examined product labels for 10 widely used herbs. At the 20 stores

> they looked at, there were 880 different products, sold under 241

> brands, for those herbs.

>

> Overall, 43 percent of the products were consistent with the

> benchmark in dosage and ingredients, according to findings published

> in the Archives of Internal Medicine (news - web sites).

>

> The fact that that many products were close to the benchmark is " the

> good news, " Garrard told Reuters Health.

>

> She said that more than one-third of the products had labeling that

> was too vague to determine the ingredients, meaning the plant species

> and plant parts used.

>

> When the researchers looked at a given herb's recommended daily dose,

> they found wide variation among products. For example, dosing for St.

> 's wort, sold as an antidepressant, ranged from one to six pills

> per day depending on the product.

>

> For echinacea, marketed as a common-cold fighter, Garrard and her

> colleagues found 92 products sold under 27 brand names. Two-thirds of

> these products were inconsistent with the benchmark in both

> ingredients and dosing recommendations.

>

> At the other end of the spectrum, all of the 113 ginseng products

> examined were consistent with the benchmark for listed ingredients.

>

> For some herbs, but not all, a higher price meant the product was

> more likely to match the benchmark recommendations. But consumers

> aren't left with much more as their guide in navigating the sea of

> herbal products.

>

> Even the benchmark doses and ingredients standards used in the study

> are tentative because of the lack of rigorous research into herbs,

> according to Garrard. Without clinical trials like those required for

> prescription drugs, she said, it's unclear whether various herbal

> products are effective at all -- although, she added, some herbs have

> been more heavily researched than others.

>

> Garrard suggested that for any given herb, consumers should consult

> several references to find out what parts of the plant are considered

> useful, and look at whether the different references agree on dosing

> recommendations. She also advised that herb users tell their doctors

> what they are taking.

>

> SOURCE: Archives of Internal Medicine, Oct. 27, 2003.

>

>

>

>

>

>

>

>

>

[Guest guest]

darlin u wine all you want to!!! cry stomp and scream!!! that's what we are

here for. and I admire you for going through it again, no way for me!!! I would

rather put up with sleeping and being tired and a few rages (to which I feel

initialed LOL) then setting in that TV chair and being to weak to move.. hell I

am 61 on borrowed time anyway!!

keep us informed and join Hepperpad for keeping your laughs going we all know

laughter is the best meds

dragonlady

Herbal Information!!

> NEW YORK (Reuters Health) - Different brands of the same herbal

> supplement can vary widely in the label's recommended dose and listed

> ingredients, according to a new study.

>

> University of Minnesota researchers found that among the top herbs

> sold in the U.S. -- including echinacea (news - web sites), ginkgo

> biloba and St. 's wort -- label information differed greatly from

> product to product. And as far as recommended dosage and ingredients,

> fewer than half were consistent with certain " benchmark "

> recommendations.

>

> The benchmark the researchers used was a professionals' handbook on

> alternative medicine. Because the U.S. does not regulate dietary

> supplements as it does drugs, there are no standards for ingredients

> or dosage of herbs. According to the study authors, the handbook --

> which was based on what herbal-product research was available -- is

> one of the few such publications by scientists with no commercial

> interest in the industry.

>

> For the study, Dr. Judith Garrard and her colleagues in Minneapolis

> examined product labels for 10 widely used herbs. At the 20 stores

> they looked at, there were 880 different products, sold under 241

> brands, for those herbs.

>

> Overall, 43 percent of the products were consistent with the

> benchmark in dosage and ingredients, according to findings published

> in the Archives of Internal Medicine (news - web sites).

>

> The fact that that many products were close to the benchmark is " the

> good news, " Garrard told Reuters Health.

>

> She said that more than one-third of the products had labeling that

> was too vague to determine the ingredients, meaning the plant species

> and plant parts used.

>

> When the researchers looked at a given herb's recommended daily dose,

> they found wide variation among products. For example, dosing for St.

> 's wort, sold as an antidepressant, ranged from one to six pills

> per day depending on the product.

>

> For echinacea, marketed as a common-cold fighter, Garrard and her

> colleagues found 92 products sold under 27 brand names. Two-thirds of

> these products were inconsistent with the benchmark in both

> ingredients and dosing recommendations.

>

> At the other end of the spectrum, all of the 113 ginseng products

> examined were consistent with the benchmark for listed ingredients.

>

> For some herbs, but not all, a higher price meant the product was

> more likely to match the benchmark recommendations. But consumers

> aren't left with much more as their guide in navigating the sea of

> herbal products.

>

> Even the benchmark doses and ingredients standards used in the study

> are tentative because of the lack of rigorous research into herbs,

> according to Garrard. Without clinical trials like those required for

> prescription drugs, she said, it's unclear whether various herbal

> products are effective at all -- although, she added, some herbs have

> been more heavily researched than others.

>

> Garrard suggested that for any given herb, consumers should consult

> several references to find out what parts of the plant are considered

> useful, and look at whether the different references agree on dosing

> recommendations. She also advised that herb users tell their doctors

> what they are taking.

>

> SOURCE: Archives of Internal Medicine, Oct. 27, 2003.

>

>

>

>

>

>

>

>

>

[Guest guest]

Oh, Tobi, you go right ahead and whine, sweetie! You do come out of lurkdom

every so often, so we know who you are. Don't know your belief system, but I'll

keep you in my prayers, or at least in my good wishes as you go down this path

again.

Marilyn

Re: whining

may i whine? and sit on the pity pot for a few? 2 yrs ago i started tx on

peg and rib. before tx i had a 9 million viral load and grade 3, stage 3+

biopsy. after the living hell of tx, i finished last sept (02). during tx

my viral load went down to >300,000. after tx, immiediately my viral load

shot up to 14 million and my liver enlarged again. so monday i'm starting

back on pegysis and copeg. this time the doc wants me on it till another tx

comes out (5+/- yrs)! this is the result of a protocol used at the

university hosp where i went to be evaluated for transplant (no go on

trans...too many other medical issues). i hope the sides are not as bad on

peg. and maybe, just maybe, after my year of tx they will lower the dose,

but doc told me not to hold my breath. last time the riba rage was horrible

and so was the depression. so bad i couldn't watch tv. it don't get any

worse than that. suicide is better than no tv!! not that i'm a addict

but.....

i've been on this list for over 2 years but seldom post. i hope ya'll

realize how much i feel a part of this family and how important this list is

in my life. i have learned more here than any internet search!! plus had

some laffs and some crys. please keep doing what you are doing and i

promise to continue to read every single post!! thanks for always being

there!!. send positive thoughts for me on monday!! thanks!!

<<<<<<<<<<<<<<<<<*>>>>>>>>>>>>>>>

0 Tobi Hale, MSW & Sapphie, SDIT

l_

(/)_. It ain't my revolution if it ain't accessible!

WWJB: Who Would Jesus Bomb?

[Guest guest]

Here it is 3:45 AM and I still can't get to sleep because of the pain in my hips

and my wrists and my knees and . . . (It's been raining the last 2 days). I

have taken a double dose of Hydromorphone, a double dose of my xanax, naproxen,

antihistimes (because I too have that cough) and rubbed MSM on my joints I can

reach - even tried it on my hips but doubt it will help there - too deep. And,

my daughter's best friend (who has been living with us) is having her C-section

tomorrow so I have to be up and at the hospital in a few hours (or up to take

care of my 5 year old grandson while my daughter goes to the hospital because he

was complaining about an earache and sore throat tonight so he may not be able

to go to kindergarten.To make matters worse, because I still don't have

insurance (or even any income at this point) there's no point in going to my

rheumy to compalin about the hips because I can't afford an x-ray,let alone an

MRI.

Anyway, thanks for listening - I just needed to vent to people who understand.

My family really tries to be understanding amd supportive, but they really don't

understand my " staying up all night and then sleeping all day " - like I'm

choosing to do that. And I know they get tired of listening to me complain (I

get tired of listening to myself sometimes).

So, off to bed and the heating pad and a book (which I may not be able to hold

very long) to try to get to sleep so I can forget about the pain and maybe not

fall asleep while babysitting my grandson. That can be dangerous, I did that

during one of my previous flares about a year ago when he decided to take his

frequent " styling " of my hair a step further and took a scissors and cut off a

huge piece of my hair. Needless to say, I was at the beauty shop as soon as I

could get there, and then when I told the beautician I wanted a " drastic " change

from my usual shoulder length hair since he had cut a bunch off anyway, she cut

it soooooo short that my daughter proceeded to call me " dad " for the next couple

months. Looking back, it was pretty funny. I guess that makes this a good time

to go to bed - laughing at how funny children and life can be. That's what we

have to do to keep us going one day at a time.

God bless all of you in this group who listen and understand, even to those of

us who read all the time and only write occasionally. Thanks.

Ellis

[Guest guest]

Carol, did you call your rheumy? If not, I would, depending on what meds

you're on, he may want to do an xray.

in PA

On Tue, Dec 7, 2010 at 7:57 PM, <IM4BUCS2000@...> wrote:

>

>

> Thanks for all the help and advice on the flu and flu shots. Heres my next

> question. Had the flu/cold for a week, called my MD and he put me on 7 days

> of antibiotics, no relief and cough is just as bad. Wait a week and call him

> back. Puts me on a zpac for 5 days. Finished those 3 days ago. I am still

> coughing, off and on fever, and I feel like someone is standing on my chest.

> We are having a cold spell her in sunny Florida and every time I breath in

> the cold air I think I am going to die. Breathing makes my chest hurts even

> in the warm house. Am I just impatient or is this normal becasue of the

> immunity issue. I work and am trying to get my college degree so I can get a

> non physical job but it is just getting so difficult. I have felt rotten for

> six weeks now. Of course that over and above the usual. I am so damn tired

> and find myself out of breath just walking. Anybody have any ideas. Is this

> normal. Am I just being dramatic. This group is the best support.

>

> Carol

>

>

[Guest guest]

No- you are not being dramatic. You are being sick. Not to put too fine a point

on it- get your behind back to the Doc! What they have used is not working, so

they have to pull another tool out of the toolbox. That is what we pay them for.

Just don't let this go on any more. Pneumonia is nothing to trifle with even if

you aren't auto-immune!

 

BTW- Kudos to you for having what it takes to go back to school.

 

My 2 cents for what it's worth...in SC

 

Thanks for all the help and advice on the flu and flu shots. Heres my next

question. Had the flu/cold for a week, called my MD and he put me on 7 days of

antibiotics, no relief and cough is just as bad. Wait a week and call him back.

Puts me on a zpac for 5 days. Finished those 3 days ago. I am still coughing,

off and on fever, and I feel like someone is standing on my chest. We are having

a cold spell her in sunny Florida and every time I breath in the cold air I

think I am going to die. Breathing makes my chest hurts even in the warm house.

Am I just impatient or is this normal becasue of the immunity issue. I work and

am trying to get my college degree so I can get a non physical job but it is

just getting so difficult. I have felt rotten for six weeks now. Of course that

over and above the usual. I am so damn tired and find myself out of breath just

walking. Anybody have any ideas. Is this normal. Am I just being dramatic. This

group is the best

support.

[Guest guest]

Whine Away , we can all relate.

I just got out of the hosp myself, was put on massive doses of prednisone (like

shots of 125 mgs), then tapered to 10ng when I got out (about a week now), so

aside from the bloot clots/pleurisy my hips began bothering me too, very badly.

After discharge and daily clinic visits to coumadin clinic, I finally get to

Rheumy and she offers me a shot of prednisone in my hips for bursitis after JUST

telling me my calcium is thru the floor from the prednison, its at rock bottom!!

She is telling me to take calcium with vit d three tines a day for the next 3

months. She says dont take it more than 500 mg at a time, because your body

doesnt absorb more than that at one time. So I ask her WHY she would offer me

more prednisone? Her response: Thats all there is to force down the

inflammation, besides Motrin, etc.

There has got to be a good balance, prednisone is dangerous in large amounts to

your bones. I want out. I am back to 5mgs, lets see. Gained 5 pounds (RATZ)

too.

Try poultices, heat up the herbs (comfrey is good, get it in a health food

store) on a piece of cotton and tape them over your hips. Also, heat up the

linament (like Tiger Balm), not hot, but very warm. A Heating pad will do as

well, but not with the heated linament (cause it can burn your skin). I try

both Ice and Heat when they flare.

I need all these drugs, but I hate them too. Now, I am on coumadin for 6 months

and they took away all leafy greens/Vit K so thats all I cook with and eat alot

of.

There has got to be a better way. I remember my grandmother used horse linament

(which is VERY similiar to Tiger Balm). Also, if there is a Chinese pharmacy in

your town, try TEET DA JOW PEI,its a chinese linament, very good.

I am investigating more and more Chinese and Ayurvedic remedies (like Tumeric

Powder in hot milk). I am convinced that there is a better way. You cant take

tumeric with coumadin though, so I have to wait 6 months. I check and double

check on the herbs with the meds.

So, whine away, we understand. I hope you feel better.....laying in bed is

necessary, but too much is bad too. So get up, move your legs, shake em out,

stretch em, walk a little, then go back to bed, you need to move to live too.

Fondly, OKD

[Guest guest]

I bought some horse liniment at a Tractor Supply store. I don't know

if you have a store near you or not. It works pretty well.

Sue

On Dec 8, 2010, at 9:46 AM, OKD wrote:

>

> There has got to be a better way. I remember my grandmother used

> horse linament (which is VERY similiar to Tiger Balm). Also, if

> there is a Chinese pharmacy in your town, try TEET DA JOW PEI,its a

> chinese linament, very good.

[Guest guest]

My name is Skyeigh, I'm 28 live in Houston, TX. I was recently officially

diagnosed with RA but have had it for ten yrs! I also have sacrilitis, chronic

fatigue, sponderlothrapy, fibromyalsia, and a few other things I lost count!

I have been looking at this support group off and on and it always something I

can relate to and has gotten me through bad days. So God Bless ALL OF YOU! I

have started Humaira injections and am waiting for the hurting to stop! Not one

person in my life personally understands, my family can't handle it whatever

that means and my best friend things it can go away. Sorry but I'm about to pop!

My work is very supportive and I have good insurance and I can function much

more than I could 6 months ago and I am so grateful I truly truly am. I just

want one person in my life to do some research and try and comprehend why I

can't push a smile out 24/7.... Sorry thanks for letting me vent!

Skyleigh Heinen

[Guest guest]

Hi Carol.

 

I think you need to call your dr. and probably get your chest x-rayed.  Do you

have Asthma also?

 

I have been sick for one week so far.  I started with a sore throat, saw my

PCP, and I had bronchitis, ashtma, and totally filled lungs.  I have taken

anti-biotics for 7 days, and will start the Z pack tomorrow.  I am on 40 mgs of

Prednisone, using Advair 2x a days, my Nebulizer, and have been in bed almost a

full week.  The meds. are working fine, and my chest is clearing.  My cough

was non stop, and the only thing that stops it is high doses of Pred. the RX

meds, and my Nebulizer.  I too was afraid I had Pneumonia again.  My cough is

finally productive so I know I am getting better.  I am, very tired and resting

in bed a lot.  The minute I feel something coming on, I see my Dr.

immediately.  It doesn't  take much for all this to get into your lungs.

 

I hope you see your Dr. soon and begin to heal.  Upper respitory is nasty for

all of us.  Take care and rest as much as you can.

 

Hugs,

 

Barbara

From: IM4BUCS2000@... <IM4BUCS2000@...>

Subject: Re: [ ] Re: Whining

Date: Tuesday, December 7, 2010, 7:57 PM

 

Thanks for all the help and advice on the flu and flu shots. Heres my next

question. Had the flu/cold for a week, called my MD and he put me on 7 days of

antibiotics, no relief and cough is just as bad. Wait a week and call him back.

Puts me on a zpac for 5 days. Finished those 3 days ago. I am still coughing,

off and on fever, and I feel like someone is standing on my chest. We are having

a cold spell her in sunny Florida and every time I breath in the cold air I

think I am going to die. Breathing makes my chest hurts even in the warm house.

Am I just impatient or is this normal becasue of the immunity issue. I work and

am trying to get my college degree so I can get a non physical job but it is

just getting so difficult. I have felt rotten for six weeks now. Of course that

over and above the usual. I am so damn tired and find myself out of breath just

walking. Anybody have any ideas. Is this normal. Am I just being dramatic. This

group is the best

support.

Carol