Re: Really? Should I try every magical elixer that people have heard of? NO!!!!

[Guest guest]

,

Vent, yell, scream, throw a temper tantrum here. We have all been there.

Everyone who does not have these diseases seems to have the answers. They mean

well, hon, but unless they have walked in our shoes for awhile they really

cannot even begin to fathom how we feel or what we go through. The pain of just

getting out of bed in the morning, Knowing that when our feet the floor we could

feel that agonizing pain. Walking will be just as hard, and running, well we can

just forget that. We may get something done and then again we may only make it

to the couch. Some go to work only to know that when they return home they will

be so tired that getting into the house will be a chore in itself.

You see, my friend, we do understand and we do care. All you can is do is your

best. If you have done that then you are a winner. Keep talking. It does help to

know that we are not alone.

Vicki

Iowa

[Guest guest]

Amen to that Vicki! That is so true. We all go thru the same things and it's

actually great that we have this wonderful network of " friends " that have all

been there themselves......Each and everyone of the group knows exactly what the

other goes thru! So, yes - and to everyone else, including myself - scream

- yell - do whatever you need to do to get it out. We have all been there and

will be there again (unfortunately!!) ------------------

Take care,

ltdavis_jrdavis@...

From: Vicki <gramvick@...>

Subject: Re: [ ] Really? Should I try every magical elixer that people

have heard of? NO!!!!

Date: Tuesday, August 4, 2009, 5:33 PM

 

,

Vent, yell, scream, throw a temper tantrum here. We have all been there.

Everyone who does not have these diseases seems to have the answers. They mean

well, hon, but unless they have walked in our shoes for awhile they really

cannot even begin to fathom how we feel or what we go through. The pain of just

getting out of bed in the morning, Knowing that when our feet the floor we could

feel that agonizing pain. Walking will be just as hard, and running, well we can

just forget that. We may get something done and then again we may only make it

to the couch. Some go to work only to know that when they return home they will

be so tired that getting into the house will be a chore in itself.

You see, my friend, we do understand and we do care. All you can is do is your

best. If you have done that then you are a winner. Keep talking. It does help to

know that we are not alone.

Vicki

Iowa

[Guest guest]

Hi : Glad you posted and vented. I so agree with what you said.

That is why I am so happy to be a member of this wonderful group of

caring people.

No one else really understands our battles, and all the pain and stress

we have daily. I have given up trying to explain this ugly beast R.A.

I offer no excuses for what I do or don't do.

I use to feel guilty if I had to trun down a luncheon date, movie, etc.

No more. It has really freed me from feeling guilty all the time.

Here, we welcome venting, tears, prayers, questions, etc. It has made a

big difference in my life. I have learned so much from everyone, and

treasure all the friendships I have made here.

Hope you feel better soon. I hope you post again soon.

Hugs,

Barbara

>

> I haven't been on in awhile. just trying to pretend that this isn't

really my new - well a year and a half old - life. Anyway, how can

people be so ignorant. Dont they realized if it worked as good as they

think people with RA wouldn't be on CHEMO! the would be drinking acai

berry juice till the cows came home. and chiropractors would be

millionaires instead of pharmaceutical companies. ugh. i just want all

of you to know that i get these crap reccomedations from everyone i know

and i've tried about twenty of the ideas. i'm sick of their ideas at

this point. I know you are all going through the same things i am.

>

> you guys are the only ones who would never tell me " well if I was you,

i would do everything i could to feel better. " and thank you for that.

>

> sorry about the freak out. my best friend of ten years told me this

two days ago and it really hurt my feelings. i know that my disease

wears thin on people, but I'm doing the best I can to feel the best I

can. I will not be the 27 year old my friends expect anymore. but I am

ill, its hard to walk. I am exhausted, i don't like going dancing

anymore. It makes me cry enough without having to feel guilty about it.

>

> thanks for listening.

> ( hopefully we all get some sleep tonight - ya right. ) angry

face!

>

[Guest guest]

,

I understand So well! It's hard to swallow all the crap sometimes.

People has no clue what you go through, and I guess they never stop to

realize about your feelings.

You freak, vent, shout, whatever you want here, just get it out, were

all here for you, always. We understand what's going on, we've been

there, or were still there. It usually never goes away.

You do what makes you happy. A real friend will stick by you know

matter what. They will understand you can't do the things, you use to,

and so they comprimise. If not, you might find some new friends. I've

lost a lot of the old click friends. They just move on, because I'm

different now. But, everyone gets health problems, so what comes

around, goes around. You keep your head up, because you are special,

and there are a lot of good people out there.

Have you thought of finding a support group in your area? You can find

some people your age group, who understand. It's worth a try.

Just know were all here, if you need to chat. I'm always around

somewhere, you can email me anytime.

Take care,

Tawny

>

> I haven't been on in awhile. just trying to pretend that this isn't

really my new - well a year and a half old - life. Anyway, how can

people be so ignorant. Dont they realized if it worked as good as they

think people with RA wouldn't be on CHEMO! the would be drinking acai

berry juice till the cows came home. and chiropractors would be

millionaires instead of pharmaceutical companies. ugh. i just want all

of you to know that i get these crap reccomedations from everyone i know

and i've tried about twenty of the ideas. i'm sick of their ideas at

this point. I know you are all going through the same things i am.

>

> you guys are the only ones who would never tell me " well if I was you,

i would do everything i could to feel better. " and thank you for that.

>

> sorry about the freak out. my best friend of ten years told me this

two days ago and it really hurt my feelings. i know that my disease

wears thin on people, but I'm doing the best I can to feel the best I

can. I will not be the 27 year old my friends expect anymore. but I am

ill, its hard to walk. I am exhausted, i don't like going dancing

anymore. It makes me cry enough without having to feel guilty about it.

>

> thanks for listening.

> ( hopefully we all get some sleep tonight - ya right. ) angry

face!

>

[Guest guest]

Hi

I hope that you feel better about life today. One of my great friends....well,

he used to be,...told me that all I needed was someone to kick me up the behind!

I used to hillwalk, play lots of sports, skydived etc and now am lucky if I can

go for a walk with crutches!

It is a horrid disease to accept at the best of times but when you have always

been physically active it comes just a little bit harder. I keep being told to

find new pastimes.....like what I reply? I can only do a little needlework at a

time. I can only paint for a little while on good days. I can't stand for long

and at times I'm screaming inside.

I wouldn't wish this on my worst enemy but I do wish for understanding for them.

I do believe that this trial has made me a better person..or rather I'm becoming

a better person, I am more patient with others and try to make more allowances.

I'm still tough on myself though

Have a great day

Lesley

From: jmkaliko <jmkaliko@...>

Subject: [ ] Really? Should I try every magical elixer that people

have heard of? NO!!!!

Date: Tuesday, 4 August, 2009, 8:26 PM

 

I haven't been on in awhile. just trying to pretend that this

isn't really my new - well a year and a half old - life. Anyway, how can people

be so ignorant. Dont they realized if it worked as good as they think people

with RA wouldn't be on CHEMO! the would be drinking acai berry juice till the

cows came home. and chiropractors would be millionaires instead of

pharmaceutical companies. ugh. i just want all of you to know that i get these

crap reccomedations from everyone i know and i've tried about twenty of the

ideas. i'm sick of their ideas at this point. I know you are all going through

the same things i am.

you guys are the only ones who would never tell me " well if I was you, i would

do everything i could to feel better. " and thank you for that.

sorry about the freak out. my best friend of ten years told me this two days

ago and it really hurt my feelings. i know that my disease wears thin on

people, but I'm doing the best I can to feel the best I can. I will not be the

27 year old my friends expect anymore. but I am ill, its hard to walk. I am

exhausted, i don't like going dancing anymore. It makes me cry enough without

having to feel guilty about it.

thanks for listening.

( hopefully we all get some sleep tonight - ya right. ) angry face!

[Guest guest]

Hi ,

I'm new here so if I say something unacceptable let me know.

If you were diagnosed only a year and a half ago, you are still in the initial

stages of discovering what this disease or these diseases will mean in your

life, not only physically but emotionaly as well. To discover at 27 that you

have such debilitating illnesses that are not going to go away must be

devastating. You have a whole grieving process to go through that you may not

even have started yet. We all have had to grieve for the person we always

expected to become, but now may secretly believe we will never be. Those are

normal feelings and should not be dismissed but accepted and addressed. Your

life may not be what you expected, but it will be as exciting and and

fullfilling as you are willing to make it.

I think that you need to cut your friends some slack though. People in their

20's still believe that they are invincible, if they want something badly enough

they can make it happen. They've never encountered an ordinary physical task

that they couldn't accomplish with ease, so they have no frame of reference to

understand why you can't walk the half mile to the restaurant.

They still believe that if they just force themselves they will be able to do

anything. Walk it off, suck it up, don't be a girl, these are the things that

coaches have said to them their whole lives, and they believe it. They've also

probably never encountered a situation where someone their own age had a disease

where treatment meant control of symptoms and not cure. To some people

everything has a cure even cancer is curable these days, so a disease that does

not follow a preprogramed schedule of symptoms and effects that can be

understood easily and cured is unfathonable to most people. So it's

understandable that your friends may believe that if you wanted to badly enough

you could do the same things you used to. You have to make them understand, by

keep reiterating your needs, your real friends will understand. I know it's

hard but we have all had to educate our friends on our diseases and limitations.

We all have to deal with the damage these diseases do to not only our bodies but

our minds as well. I sometime think that the attitude we have is ultimately

most important in facing the problems we encounter every day. Don't be afraid

to say you're scared, we're all scared sometimes when we don't know how our body

will react. We're all frustrated and confused at times, but we have a choice we

can control these diseases as best we can or we can let them control us. I know

my limitations and I cry when I can't do something that I would love to do, but

I stop and think of the many things I can do and thank the Goddess for those.

Slàn agus Beannachtai,

Tris

>

> I haven't been on in awhile. just trying to pretend that this isn't really my

new - well a year and a half old - life. Anyway, how can people be so ignorant.

Dont they realized if it worked as good as they think people with RA wouldn't be

on CHEMO! the would be drinking acai berry juice till the cows came home. and

chiropractors would be millionaires instead of pharmaceutical companies. ugh. i

just want all of you to know that i get these crap reccomedations from everyone

i know and i've tried about twenty of the ideas. i'm sick of their ideas at

this point. I know you are all going through the same things i am.

>

> you guys are the only ones who would never tell me " well if I was you, i would

do everything i could to feel better. " and thank you for that.

>

> sorry about the freak out. my best friend of ten years told me this two days

ago and it really hurt my feelings. i know that my disease wears thin on

people, but I'm doing the best I can to feel the best I can. I will not be the

27 year old my friends expect anymore. but I am ill, its hard to walk. I am

exhausted, i don't like going dancing anymore. It makes me cry enough without

having to feel guilty about it.

>

> thanks for listening.

> ( hopefully we all get some sleep tonight - ya right. ) angry face!

>

[Guest guest]

AMEN to this posting..... If there is one thing I HATE HATE HATE it is when

people start a sentence with...

" If I were you.... " and " You should.... " and " Have you tried... " Get a flipping,

clue buddy!

One of my friends IS a chiropractor. He is forever sending me articles and links

and stuff. One day, I really had it. I shot off an email which basically

said.... Until you walk a day in my body, please stop telling/hinting/showing me

things that people have " claimed " will work. I also told him that I was very

happy with my MEDICAL doctor and that he should stick to cracking backs. Yes, I

was PISSED. SERIOUSLY pissed.

*~ Kami ~*

[ ] Really? Should I try every magical elixer that people

have heard of? NO!!!!

I haven't been on in awhile. just trying to pretend that this isn't really

my new - well a year and a half old - life. Anyway, how can people be so

ignorant. Dont they realized if it worked as good as they think people with RA

wouldn't be on CHEMO! the would be drinking acai berry juice till the cows came

home. and chiropractors would be millionaires instead of pharmaceutical

companies. ugh. i just want all of you to know that i get these crap

reccomedations from everyone i know and i've tried about twenty of the ideas.

i'm sick of their ideas at this point. I know you are all going through the same

things i am.

you guys are the only ones who would never tell me " well if I was you, i would

do everything i could to feel better. " and thank you for that.

sorry about the freak out. my best friend of ten years told me this two days

ago and it really hurt my feelings. i know that my disease wears thin on people,

but I'm doing the best I can to feel the best I can. I will not be the 27 year

old my friends expect anymore. but I am ill, its hard to walk. I am exhausted, i

don't like going dancing anymore. It makes me cry enough without having to feel

guilty about it.

thanks for listening.

( hopefully we all get some sleep tonight - ya right. ) angry face!

[Guest guest]

Hi Tris: Welocme to our wonderful group. You have found the best

support group for RA, and other auto-immune diseases.

Wishing you good days ahead.

Hugs,

Barbara P.S. Slanter

> >

> > I haven't been on in awhile. just trying to pretend that this isn't

really my new - well a year and a half old - life. Anyway, how can

people be so ignorant. Dont they realized if it worked as good as they

think people with RA wouldn't be on CHEMO! the would be drinking acai

berry juice till the cows came home. and chiropractors would be

millionaires instead of pharmaceutical companies. ugh. i just want all

of you to know that i get these crap reccomedations from everyone i know

and i've tried about twenty of the ideas. i'm sick of their ideas at

this point. I know you are all going through the same things i am.

> >

> > you guys are the only ones who would never tell me " well if I was

you, i would do everything i could to feel better. " and thank you for

that.

> >

> > sorry about the freak out. my best friend of ten years told me this

two days ago and it really hurt my feelings. i know that my disease

wears thin on people, but I'm doing the best I can to feel the best I

can. I will not be the 27 year old my friends expect anymore. but I am

ill, its hard to walk. I am exhausted, i don't like going dancing

anymore. It makes me cry enough without having to feel guilty about it.

> >

> > thanks for listening.

> > ( hopefully we all get some sleep tonight - ya right. ) angry

face!

> >

>