living with pain...chronic crisis

[Guest guest]

Hello dear group,

Have been thinking /feeling for so many of you and your recent posts,and

received/heard the HUGE frustrations/despondency/ at the seeming impossibility

of getting over( that is educating) ignorant 'Joe Public'

Sadly I think it IS well nigh impossible really to convey what you are all going

through day by day ,just to get by living alongside the enormous challenges of

this group of cruel illnesses,not understood often even by your nearest and

dearest,let alone by the 'helpful' stranger (or tv advert) with the cure all

answer! OH dear... As someone said, probably much better is to have a code 'shut

up' answer for the intrusive (know it all) type?. People just don't want to 'do

pain', it is easier, more comfortable for them to reject/ deny it and therefore

you, the sufferers.

(This reminds me of how we used to work out in advance for my (adopted ) kids a

'playground' response, which comes quickly off the tongue to deal with questions

when people intrude!

Well I had wanted to start this overlong mail by suggesting, humbly, that I

just felt so many of your feelings and stresses might come from having to exist

, survive in a state of 'CHRONIC CRISIS' (with active disease)and maybe loved

ones also might relate to this , for you and themselves. By this I mean it is

well known we have a sudden crisis and the body goes into short term emergency

coping mode, but somehow with these diseases this persists... hyper-alert,

primed, at the ready , for unexpected 'surprises' long term.Not a healthy state

to be in...Does it seem like this? Please let me know,I care.

Best wishes

retired doc UK,

friend of RA sufferer

From: nana2livi <s.p5315@...>

Subject: [ ] Re: I need some encouragement!

Date: Sunday, 3 August, 2008, 7:05 PM

,

Too true. People see these an believe them to be exactly as

portrayed.

Even when I had only osteo and the Aleve commercial would come on

with the lady taking 2 and dancing all night, I would scream at the

TV, NO you can't!

These things are geared so that we will insist on their drugs and

buy them but never show the reality of the disease. Every

manufacturer wants us to see ourselves as their actors and believe

we will be just like them. Show me someone that does have RA and

what it has done for them. Truth.....I guess it just dosen't work

with marketing.

Shirley

>

> I agree totally w/ you. When I was first diangosed, my PCP was

out

> and I had to see someone else in his practice. She immediately

took

> me off my pain medication because " I am too young to be in pain " .

I

> was pissed. I worked in healthcare and the majority of my friends

> worked in medicine and were familiar w/ RA. They understood. When

I

> moved to another state and trying to make new friends...no one

gets

> it. I have been told, just don't think about it, push youself past

> the pain, and other pin-headed excuses. My mom's boyfriend was

> telling me that my pain is all in my head, that I just want

> narcotics. I am SOO sick of it. My family doesn't understand it,

> they just see the commericals for RA and it's not as bad as I am

> making it out to be. It's frustrating. ..not only are you trying

to

> deal w/ RA for yourself...you try to educate people and it falls

on

> deaf ears. I have one friend here in Denver, who has lupus and she

is

> the only one besides you guys who really understands what it feels

> like.

>

>

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