Re: Re: OT Fwd: good description of illness

[Guest guest]

Hi Pat,

It's been copied and pasted so many times, it's intended to be. It is what I

did just for this list. If it helps family members and friends understand

just a little of what some of us go through on a daily basis, then is has been

successful. Best of luck in your future endeavours!

Heidi in Mass.

In a message dated 10/20/2008 11:54:53 A.M. Eastern Daylight Time,

bureau97504@... writes:

Thanks for the wonderful description of Fibro. I agree much of it pertains

to RA and other auto immune diseases too. I would like permission to copy

this to hand out at my next Board meeting of HASL Independent Abilities Center

as I am on the Board of Directors. I will be resigning my Board position

as I have accepted employment with them as a job developer for people with

disabilities. I am so excited about this and hope to be able to report back to

the group about the great things I hope to accomplish in the community. If

anyone is interested in hearing more about our organization, you may check

their website at www.haslonline. If

Thanks a bunch

Pat in Southern Oregon

Bureau Alvarez

From: Mimi <_mimi212@..._ (mailto:mimi212@...) >

Subject: [ ] Re: OT Fwd: good description of illness

_ @groRA-SUPP_ (mailto: )

Date: Monday, October 20, 2008, 8:26 AM

Wow - Thanks, Heidi! That is an awesome description of EXACTLY what

that bugger, FMS, has done to me and many others. I copied/pasted it

into a Word Document - I'm emailing this to family who just " don't get

it " ......... ......Doreen

>

> This is about Fibromyalgia but some can apply to those of us with

> RA and some have this also.

>

> Heidi in Mass.

>

>___________ _________ _________ _______

>

> Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.

>

> I am now velcroed to you for life.

>

> Others around you can't see me or hear me, but YOUR body feels me.

> I can attack you anywhere and anyhow I please.

>

> I can cause severe pain or, if I'm in a good mood, I can just cause

> you to ache all over.

>

> Remember when you and Energy ran around together and had fun? I

> took Energy from you, and gave you Exhaustion.

>

> Try to have fun now! I also took Good Sleep from you and, in its

> place, gave you Brain Fog.

>

> I can make you tremble internally or make you feel cold or hot

> when everyone else feels normal. Oh, yeah, I can make you feel

> anxious or depressed, too.

>

> If you have something planned, or are looking forward to a great

> day, I can take that away, too. You didn't ask for me.

>

> I chose you for various reasons:

> That virus you had that you never recovered from, or that car

> accident, or maybe it was the years of abuse and trauma.

>

> Well, anyway, I'm here to stay!

>

> I hear you're going to see a doctor who can get rid of me.

>

> I'm rolling on the floor, laughing. Just try.

>

> You will have to go to many, many doctors until you find one who

> can help you effectively.

>

> You will be put on pain pills, sleeping pills, energy pills, told

> you are suffering from anxiety or depression, given a Tens unit,

> get massaged, told if you just sleep and exercise properly I will

> go away, told to think positively, poked, prodded, and MOST OF ALL,

> not taken as seriously as you feel when you cry to the doctor how

> debilitating life is every day.

>

> Your family, friends and coworkers will all listen to you until

> they just get tired of hearing about how I make you feel, and that

> I'm a debilitating disease.

>

> Some of them will say things like " Oh, you are just having a bad

> day " or " Well, remember, you can't do the things you use to do 20

> YEARS ago " , not hearing that you said 20 DAYS ago.

>

> Some will just start talking behind your back, while you slowly

> feel that you are losing your dignity trying to make them

> understand, especially when you are in the middle of a

> conversation with a " Normal " person, and can't remember what you

> were going to say next!

>

> In closing, (I was hoping that I kept this part a secret), but I

> guess you already found out...

>

> The ONLY place you will get any support and understanding in

> dealing with me is with Other People With Fibromyalgia.

>

__________________________________________________

Do You ?

Tired of spam? has the best spam protection around

_http://mail.http://ma_ (http://mail./)

[Non-text portions of this message have been removed]

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

Thanks for the wonderful description of Fibro.  I agree much of it pertains to

RA and other auto immune diseases too.   I would like permission to copy this to

hand out at my next Board meeting of HASL Independent Abilities Center as I am

on the Board of Directors.  I will be resigning my Board position  as I have

accepted employment with them as a job developer for people with disabilities. 

I am so excited about this and hope to be able to report back to the group about

the great things I hope to accomplish in the community.  If anyone is interested

in hearing more about our organization, you may check their website at

www.haslonline.org

 

Thanks a bunch

 

Pat in Southern Oregon

Bureau Alvarez

From: Mimi <mimi212@...>

Subject: [ ] Re: OT Fwd: good description of illness

Date: Monday, October 20, 2008, 8:26 AM

Wow - Thanks, Heidi! That is an awesome description of EXACTLY what

that bugger, FMS, has done to me and many others. I copied/pasted it

into a Word Document - I'm emailing this to family who just " don't get

it " ......... ......Doreen

>

> This is about Fibromyalgia but some can apply to those of us with

> RA and some have this also.

>

> Heidi in Mass.

>

>___________ _________ _________ _______

>

> Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.

>

> I am now velcroed to you for life.

>

> Others around you can't see me or hear me, but YOUR body feels me.

> I can attack you anywhere and anyhow I please.

>

> I can cause severe pain or, if I'm in a good mood, I can just cause

> you to ache all over.

>

> Remember when you and Energy ran around together and had fun? I

> took Energy from you, and gave you Exhaustion.

>

> Try to have fun now! I also took Good Sleep from you and, in its

> place, gave you Brain Fog.

>

> I can make you tremble internally or make you feel cold or hot

> when everyone else feels normal. Oh, yeah, I can make you feel

> anxious or depressed, too.

>

> If you have something planned, or are looking forward to a great

> day, I can take that away, too. You didn't ask for me.

>

> I chose you for various reasons:

> That virus you had that you never recovered from, or that car

> accident, or maybe it was the years of abuse and trauma.

>

> Well, anyway, I'm here to stay!

>

> I hear you're going to see a doctor who can get rid of me.

>

> I'm rolling on the floor, laughing. Just try.

>

> You will have to go to many, many doctors until you find one who

> can help you effectively.

>

> You will be put on pain pills, sleeping pills, energy pills, told

> you are suffering from anxiety or depression, given a Tens unit,

> get massaged, told if you just sleep and exercise properly I will

> go away, told to think positively, poked, prodded, and MOST OF ALL,

> not taken as seriously as you feel when you cry to the doctor how

> debilitating life is every day.

>

> Your family, friends and coworkers will all listen to you until

> they just get tired of hearing about how I make you feel, and that

> I'm a debilitating disease.

>

> Some of them will say things like " Oh, you are just having a bad

> day " or " Well, remember, you can't do the things you use to do 20

> YEARS ago " , not hearing that you said 20 DAYS ago.

>

> Some will just start talking behind your back, while you slowly

> feel that you are losing your dignity trying to make them

> understand, especially when you are in the middle of a

> conversation with a " Normal " person, and can't remember what you

> were going to say next!

>

> In closing, (I was hoping that I kept this part a secret), but I

> guess you already found out...

>

> The ONLY place you will get any support and understanding in

> dealing with me is with Other People With Fibromyalgia.

>

__________________________________________________

[Guest guest]

i need to make a correction to the website i listed.  In my haste I made a

mistake,  It should read www.haslonline.org.

 

Thanks

Pat in Southern Oregon

Bureau Alvarez

From: Mimi <_mimi212cfl (DOT) mimi21_ (mailto:mimi212cfl (DOT) rr.com) >

Subject: [ ] Re: OT Fwd: good description of illness

_ @ groRA- SUPP_ (mailto: @gro ups.com)

Date: Monday, October 20, 2008, 8:26 AM

Wow - Thanks, Heidi! That is an awesome description of EXACTLY what

that bugger, FMS, has done to me and many others. I copied/pasted it

into a Word Document - I'm emailing this to family who just " don't get

it " ......... ......Doreen

>

> This is about Fibromyalgia but some can apply to those of us with

> RA and some have this also.

>

> Heidi in Mass.

>

>___________ _________ _________ _______

>

> Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.

>

> I am now velcroed to you for life.

>

> Others around you can't see me or hear me, but YOUR body feels me.

> I can attack you anywhere and anyhow I please.

>

> I can cause severe pain or, if I'm in a good mood, I can just cause

> you to ache all over.

>

> Remember when you and Energy ran around together and had fun? I

> took Energy from you, and gave you Exhaustion.

>

> Try to have fun now! I also took Good Sleep from you and, in its

> place, gave you Brain Fog.

>

> I can make you tremble internally or make you feel cold or hot

> when everyone else feels normal. Oh, yeah, I can make you feel

> anxious or depressed, too.

>

> If you have something planned, or are looking forward to a great

> day, I can take that away, too. You didn't ask for me.

>

> I chose you for various reasons:

> That virus you had that you never recovered from, or that car

> accident, or maybe it was the years of abuse and trauma.

>

> Well, anyway, I'm here to stay!

>

> I hear you're going to see a doctor who can get rid of me.

>

> I'm rolling on the floor, laughing. Just try.

>

> You will have to go to many, many doctors until you find one who

> can help you effectively.

>

> You will be put on pain pills, sleeping pills, energy pills, told

> you are suffering from anxiety or depression, given a Tens unit,

> get massaged, told if you just sleep and exercise properly I will

> go away, told to think positively, poked, prodded, and MOST OF ALL,

> not taken as seriously as you feel when you cry to the doctor how

> debilitating life is every day.

>

> Your family, friends and coworkers will all listen to you until

> they just get tired of hearing about how I make you feel, and that

> I'm a debilitating disease.

>

> Some of them will say things like " Oh, you are just having a bad

> day " or " Well, remember, you can't do the things you use to do 20

> YEARS ago " , not hearing that you said 20 DAYS ago.

>

> Some will just start talking behind your back, while you slowly

> feel that you are losing your dignity trying to make them

> understand, especially when you are in the middle of a

> conversation with a " Normal " person, and can't remember what you

> were going to say next!

>

> In closing, (I was hoping that I kept this part a secret), but I

> guess you already found out...

>

> The ONLY place you will get any support and understanding in

> dealing with me is with Other People With Fibromyalgia.

>

____________ _________ _________ _________ _________ __