Re: annoying thing happening with friends since diagnosis

[Guest guest]

Hi

Absolutely no one knows what we feel. That's why we have this group.

I can't even get my family and friends to slow down enough to read

about RA. I am printing out some of your letters too. Having a

disease is very humbling. We have acted the same way I'm sure. It

helps if only one of my friends or a family member shows enough

interest to share the information about RA. I am trying to stay calm -

tension and stress makes this worse. People who " mean well " cause my

pain so I take a " vacation " from them...

carol - ca

On Oct 18, 2005, at 9:54 PM, yasdnilnoyl wrote:

> Did any of you experience the following when you were first diagnosed?

>

> Some of my friends seem to think they have become experts on RA since

> I

> told them i have it and they read up on it online. They try to tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES in

> this area and will take his direction on what I need to do right now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm doing

> isn't going to help. They tell me I need to exercise. This ticks me

> off

> the most because they don't understand what it feels like for me to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

>

>

>

>

>

>

>

[Guest guest]

Hi

Absolutely no one knows what we feel. That's why we have this group.

I can't even get my family and friends to slow down enough to read

about RA. I am printing out some of your letters too. Having a

disease is very humbling. We have acted the same way I'm sure. It

helps if only one of my friends or a family member shows enough

interest to share the information about RA. I am trying to stay calm -

tension and stress makes this worse. People who " mean well " cause my

pain so I take a " vacation " from them...

carol - ca

On Oct 18, 2005, at 9:54 PM, yasdnilnoyl wrote:

> Did any of you experience the following when you were first diagnosed?

>

> Some of my friends seem to think they have become experts on RA since

> I

> told them i have it and they read up on it online. They try to tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES in

> this area and will take his direction on what I need to do right now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm doing

> isn't going to help. They tell me I need to exercise. This ticks me

> off

> the most because they don't understand what it feels like for me to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

>

>

>

>

>

>

>

[Guest guest]

I found that strangers, acquaintances & colleagues often do offer

unsolicited advice and my usual response is " Really? I'll have to

research that or ask my rheumy. " or " When I asked my MD about that

he said it would be unwise to try it at this time. " I had one

colleague who would repeatedly tell me about his neighbor with RA

who went to a Mexican Clinic somewhere in Mexico several times a

year

for meds & treatment and he was doing so well that you would never

know he was ill. This was a regular conversation for about 5 years

until one day i was told the neighbor had passed away and the

autopsy ruled that the meds, which turned out to be some combo of

prednisone, herbs & " painkillers " were the cause of death. MY

colleague then said " I'm sure glad you didn't decide to try the

clinic--I knew that those meds weren't safe! "

My friends were unusual in that most of them had known other friends

or family members who had suffered from RA. Therefore they were

more inclined to ask how I was feeling or if I needed help. In

fact, after awhile, they would automatically come to my assistance

if they saw it was needed and they did so unobtrusively.

I have to admit that some " friends " did eventually drift away rather

than try to deal with my growing limitations. Of course, that

shouldn't happen to most RA folks who have been recently diagnosed.

The meds out today, unlike 28 yrs ago, have the ability to stop a

lot of the joint destruction we " old timers " have experienced.

In any case , hang in there and give yourself & your friends

time to adjust to the reality of this disease.

Hugs,

Lori

--- In , " yasdnilnoyl " <lindsaylyon@g...>

wrote:

>

> Did any of you experience the following when you were first

diagnosed?

>

> Some of my friends seem to think they have become experts on RA

since I

> told them i have it and they read up on it online. They try to

tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who

SPECIALIZES in

> this area and will take his direction on what I need to do right

now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm

doing

> isn't going to help. They tell me I need to exercise. This ticks

me off

> the most because they don't understand what it feels like for me

to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it

day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

[Guest guest]

I found that strangers, acquaintances & colleagues often do offer

unsolicited advice and my usual response is " Really? I'll have to

research that or ask my rheumy. " or " When I asked my MD about that

he said it would be unwise to try it at this time. " I had one

colleague who would repeatedly tell me about his neighbor with RA

who went to a Mexican Clinic somewhere in Mexico several times a

year

for meds & treatment and he was doing so well that you would never

know he was ill. This was a regular conversation for about 5 years

until one day i was told the neighbor had passed away and the

autopsy ruled that the meds, which turned out to be some combo of

prednisone, herbs & " painkillers " were the cause of death. MY

colleague then said " I'm sure glad you didn't decide to try the

clinic--I knew that those meds weren't safe! "

My friends were unusual in that most of them had known other friends

or family members who had suffered from RA. Therefore they were

more inclined to ask how I was feeling or if I needed help. In

fact, after awhile, they would automatically come to my assistance

if they saw it was needed and they did so unobtrusively.

I have to admit that some " friends " did eventually drift away rather

than try to deal with my growing limitations. Of course, that

shouldn't happen to most RA folks who have been recently diagnosed.

The meds out today, unlike 28 yrs ago, have the ability to stop a

lot of the joint destruction we " old timers " have experienced.

In any case , hang in there and give yourself & your friends

time to adjust to the reality of this disease.

Hugs,

Lori

>

> Did any of you experience the following when you were first

diagnosed?

>

> Some of my friends seem to think they have become experts on RA

since I

> told them i have it and they read up on it online. They try to

tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who

SPECIALIZES in

> this area and will take his direction on what I need to do right

now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm

doing

> isn't going to help. They tell me I need to exercise. This ticks

me off

> the most because they don't understand what it feels like for me

to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it

day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

[Guest guest]

You should consider yourself very lucky that you have friends that

care enough to learn about the disease you were diagnosed with.

So many members here can't even get family to try to learn and

understand. Your friends are well meaning and are only trying

to help you. I get annoyed sometimes too, but I know they mean well.

I have gotten the LEAST amount of information about this disease or

it's treatment from any doctor I've ever been to.

Until I had access to the internet and read about it, I was clueless.

Doctors would hand out a prescription and not tell me anything about it.

Some doctors even got annoyed when I asked questions.

Many doctors don't even follow standard recommendations such as

prescribing folic

acid along with methotrexate. Some doctors don't tell people taking

plaquenil that they should have an eye exam. Some don't tell

patients that they should have a chest x-ray before starting mtx.

I've had many members say they have learned more from

the group than their own doctor. It shouldn't be that way but it is.

If you're lucky enough to have a rheumatologist that takes the

time to explain things to you, you're one of the lucky ones.

As far as exercise, for me it is the biggest pain reliever. I know it

sounds strange that exercising a painful joint brings relief, but for

me and many others, it does. Proper exercise is important so that you

can prevent further damage to the joint. When a joint remains

immobile, it becomes still and swells. When the joint is moved, it

pushes the fluids out of the joint and relieves inflammation.

It also maintains flexibility and muscle strength. Before I started

swimming, I was loosing my elbow range of motion. It was bent and I

couldn't straighten it. My ankles are completely frozen with no range

of motion at all. This happened before I became educated on this

disease. Had a doctor told me how important diet and exercise is,

maybe I could have prevented it. No doctor has ever told me

that diet can help. I found that out on my own. I could go on and on.

My take on alternative therapies - there are many alternative

therapies that help, but in my most humble opinion they should be

combined with traditional therapies.

Many doctors just totally ignore alternatives, although many are

starting to combine them because they have found that some actually

are effective. The problem is most aren't trained in alternatives or

in diet. Pretty sad that they get so little education in diet since

diet is the key to good health. Most doctors deal in disease more

than prevention.

Friends can't begin to understand what you're going through, but they

care enough to try.

Many of us have had friend alienate us, husbands divorce us, and

family abandon us when we became ill. Get mad under your breath and

come here

to vent. Saying something like " Yes, I read that too, Thanks! " but

know they are clueless but trying to help.

a

On Oct 19, 2005, at 12:54 AM, yasdnilnoyl wrote:

> Did any of you experience the following when you were first diagnosed?

>

> Some of my friends seem to think they have become experts on RA

> since I

> told them i have it and they read up on it online. They try to tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES in

> this area and will take his direction on what I need to do right now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm doing

> isn't going to help. They tell me I need to exercise. This ticks me

> off

> the most because they don't understand what it feels like for me to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

>

>

>

>

>

>

>

[Guest guest]

You should consider yourself very lucky that you have friends that

care enough to learn about the disease you were diagnosed with.

So many members here can't even get family to try to learn and

understand. Your friends are well meaning and are only trying

to help you. I get annoyed sometimes too, but I know they mean well.

I have gotten the LEAST amount of information about this disease or

it's treatment from any doctor I've ever been to.

Until I had access to the internet and read about it, I was clueless.

Doctors would hand out a prescription and not tell me anything about it.

Some doctors even got annoyed when I asked questions.

Many doctors don't even follow standard recommendations such as

prescribing folic

acid along with methotrexate. Some doctors don't tell people taking

plaquenil that they should have an eye exam. Some don't tell

patients that they should have a chest x-ray before starting mtx.

I've had many members say they have learned more from

the group than their own doctor. It shouldn't be that way but it is.

If you're lucky enough to have a rheumatologist that takes the

time to explain things to you, you're one of the lucky ones.

As far as exercise, for me it is the biggest pain reliever. I know it

sounds strange that exercising a painful joint brings relief, but for

me and many others, it does. Proper exercise is important so that you

can prevent further damage to the joint. When a joint remains

immobile, it becomes still and swells. When the joint is moved, it

pushes the fluids out of the joint and relieves inflammation.

It also maintains flexibility and muscle strength. Before I started

swimming, I was loosing my elbow range of motion. It was bent and I

couldn't straighten it. My ankles are completely frozen with no range

of motion at all. This happened before I became educated on this

disease. Had a doctor told me how important diet and exercise is,

maybe I could have prevented it. No doctor has ever told me

that diet can help. I found that out on my own. I could go on and on.

My take on alternative therapies - there are many alternative

therapies that help, but in my most humble opinion they should be

combined with traditional therapies.

Many doctors just totally ignore alternatives, although many are

starting to combine them because they have found that some actually

are effective. The problem is most aren't trained in alternatives or

in diet. Pretty sad that they get so little education in diet since

diet is the key to good health. Most doctors deal in disease more

than prevention.

Friends can't begin to understand what you're going through, but they

care enough to try.

Many of us have had friend alienate us, husbands divorce us, and

family abandon us when we became ill. Get mad under your breath and

come here

to vent. Saying something like " Yes, I read that too, Thanks! " but

know they are clueless but trying to help.

a

On Oct 19, 2005, at 12:54 AM, yasdnilnoyl wrote:

> Did any of you experience the following when you were first diagnosed?

>

> Some of my friends seem to think they have become experts on RA

> since I

> told them i have it and they read up on it online. They try to tell me

> what I should and shouldn't be doing, how I should be eating, what

> medicines I should and should not take...etc.

> I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES in

> this area and will take his direction on what I need to do right now.

> They just don't seem to understand.

> I just found out 3 weeks ago! They can't tell me that what I'm doing

> isn't going to help. They tell me I need to exercise. This ticks me

> off

> the most because they don't understand what it feels like for me to

> even stand up.

> How do I relay to them, without seeming super mean, that I have a

> handle on what I need to do at the moment and I need to take it day by

> day? And that it is NOT the time to experiment with alternative

> therapies. I need to get this under control first!

> I know they care, but GEEZ!

>

>

>

>

>

>

>

>

[Guest guest]

I know that my friends are just trying to help and I am so grateful

for that! I hope they'll always be here for me throughout everything.

A friend or family member alienating you because of this diesase is

the worst thing they could do. I guess I'd rather have over-bearing

friends than un-caring friends.

Today has been a much better day for me pain-wise too! YAY! So I went

swimming. Not too strenuous though...I don't want to pay for it

tomorrow. My painful days seem so unpredictable lately!

Thanks for your comments a, it helped a lot.

>

> > Did any of you experience the following when you were first

diagnosed?

> >

> > Some of my friends seem to think they have become experts on RA

> > since I

> > told them i have it and they read up on it online. They try to

tell me

> > what I should and shouldn't be doing, how I should be eating, what

> > medicines I should and should not take...etc.

> > I have tryed telling them that I am seeing a DOCTOR who

SPECIALIZES in

> > this area and will take his direction on what I need to do right

now.

> > They just don't seem to understand.

> > I just found out 3 weeks ago! They can't tell me that what I'm

doing

> > isn't going to help. They tell me I need to exercise. This ticks

me

> > off

> > the most because they don't understand what it feels like for me

to

> > even stand up.

> > How do I relay to them, without seeming super mean, that I have a

> > handle on what I need to do at the moment and I need to take it

day by

> > day? And that it is NOT the time to experiment with alternative

> > therapies. I need to get this under control first!

> > I know they care, but GEEZ!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I know that my friends are just trying to help and I am so grateful

for that! I hope they'll always be here for me throughout everything.

A friend or family member alienating you because of this diesase is

the worst thing they could do. I guess I'd rather have over-bearing

friends than un-caring friends.

Today has been a much better day for me pain-wise too! YAY! So I went

swimming. Not too strenuous though...I don't want to pay for it

tomorrow. My painful days seem so unpredictable lately!

Thanks for your comments a, it helped a lot.

>

> > Did any of you experience the following when you were first

diagnosed?

> >

> > Some of my friends seem to think they have become experts on RA

> > since I

> > told them i have it and they read up on it online. They try to

tell me

> > what I should and shouldn't be doing, how I should be eating, what

> > medicines I should and should not take...etc.

> > I have tryed telling them that I am seeing a DOCTOR who

SPECIALIZES in

> > this area and will take his direction on what I need to do right

now.

> > They just don't seem to understand.

> > I just found out 3 weeks ago! They can't tell me that what I'm

doing

> > isn't going to help. They tell me I need to exercise. This ticks

me

> > off

> > the most because they don't understand what it feels like for me

to

> > even stand up.

> > How do I relay to them, without seeming super mean, that I have a

> > handle on what I need to do at the moment and I need to take it

day by

> > day? And that it is NOT the time to experiment with alternative

> > therapies. I need to get this under control first!

> > I know they care, but GEEZ!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

There are days when I'm weary and I feel irritated by unsolicited

advice.

But, most of the time, I try to listen the heart rather than the words.

People want to help. Everyone wishes she/he could name the exact thing

that would take another person's pain away. And that's a lovely thing.

So I try to ignore the fact that someone has just told me it's the

easiest thing in the world to cure RA if I just use this

juice/oil/supplement/etc. and simply say " Thanks for telling me. I'll

check it out. " And, if something does sound reasonable (as a help,

rather than a cure), I research it a little bit. Sometimes that

research leads to good information.

I usually don't try to explain RA and what I'm doing about it to folks

who don't understand RA (unless they're family or close friends). It's

just a waste of limited precious energy. Some nice short statement of

gratitude followed by a change of subject--such as " And how are *you*

feeling? " or " What have you been up to? " and so on will usually do the

trick.

And stay with this group. Here, we all understand. Gripe to your

heart's content!

Prakasha

> On Oct 19, 2005, at 12:54 AM, yasdnilnoyl wrote:

>

> > Did any of you experience the following when you were first

> diagnosed?

> >

> > Some of my friends seem to think they have become experts on RA 

> > since I

> > told them i have it and they read up on it online. They try to tell

> me

> > what I should and shouldn't be doing, how I should be eating, what

> > medicines I should and should not take...etc.

> > I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES

> in

> > this area and will take his direction on what I need to do right

> now.

> > They just don't seem to understand.

> > I just found out 3 weeks ago! They can't tell me that what I'm doing

> > isn't going to help. They tell me I need to exercise. This ticks me 

> > off

> > the most because they don't understand what it feels like for me to

> > even stand up.

> > How do I relay to them, without seeming super mean, that I have a

> > handle on what I need to do at the moment and I need to take it day

> by

> > day? And that it is NOT the time to experiment with alternative

> > therapies. I need to get this under control first!

> > I know they care, but GEEZ!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

There are days when I'm weary and I feel irritated by unsolicited

advice.

But, most of the time, I try to listen the heart rather than the words.

People want to help. Everyone wishes she/he could name the exact thing

that would take another person's pain away. And that's a lovely thing.

So I try to ignore the fact that someone has just told me it's the

easiest thing in the world to cure RA if I just use this

juice/oil/supplement/etc. and simply say " Thanks for telling me. I'll

check it out. " And, if something does sound reasonable (as a help,

rather than a cure), I research it a little bit. Sometimes that

research leads to good information.

I usually don't try to explain RA and what I'm doing about it to folks

who don't understand RA (unless they're family or close friends). It's

just a waste of limited precious energy. Some nice short statement of

gratitude followed by a change of subject--such as " And how are *you*

feeling? " or " What have you been up to? " and so on will usually do the

trick.

And stay with this group. Here, we all understand. Gripe to your

heart's content!

Prakasha

> On Oct 19, 2005, at 12:54 AM, yasdnilnoyl wrote:

>

> > Did any of you experience the following when you were first

> diagnosed?

> >

> > Some of my friends seem to think they have become experts on RA 

> > since I

> > told them i have it and they read up on it online. They try to tell

> me

> > what I should and shouldn't be doing, how I should be eating, what

> > medicines I should and should not take...etc.

> > I have tryed telling them that I am seeing a DOCTOR who SPECIALIZES

> in

> > this area and will take his direction on what I need to do right

> now.

> > They just don't seem to understand.

> > I just found out 3 weeks ago! They can't tell me that what I'm doing

> > isn't going to help. They tell me I need to exercise. This ticks me 

> > off

> > the most because they don't understand what it feels like for me to

> > even stand up.

> > How do I relay to them, without seeming super mean, that I have a

> > handle on what I need to do at the moment and I need to take it day

> by

> > day? And that it is NOT the time to experiment with alternative

> > therapies. I need to get this under control first!

> > I know they care, but GEEZ!

> >

> >

> >

> >

> >

> >

> >

> >