Re: living with pain...chronic crisis

[Guest guest]

Chriss , , Shirly and group

Yesssssssss. EXACTLY what you said under my post here. It is exactly

how you discribed it. What a master piece. I save a few post each

day. I am putting this one in folder for others to read and maybe

hopefully understand us a little better. I will let you know the

results when the Joe public reads it. haaaaaaaaa. I am saving this

whole letter and anyone says anything to down size RA. THey will be

forced to read it all. lol

Thanks

Gentle hugs to everyone

Clora

>

> 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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>

[Guest guest]

You are wonderful! You totally get it. That term 'CHRONIC CRISIS'

is perfect. You are unique. You do listen and research. It should be

that simple for others but my experiece, so far, has been that

people around me practice selective hearing and no research.

You are a fantastic asset to this group.

Thank you for caring so much about your friend that it drew you to

this group.

Shirley

>

> 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

[Guest guest]

Such a thoughtful post, and so right on target! Both my PCP and my

Rheumy keep telling me stress is a problem, and I constantly live with

stress . . . so . . .

Also, wanted to comment on other's response to us. My daughter had

severe asthma, very active psoriasis, and gastroparesis in high

school. Thank goodness all are under control now, and somehow, she

made it through high school, college, and started a job she loves 6

months ago! But my point here, was we struggled most of the way

through high school, an all girls exclusive school which was known for

the individual attention the girls got, as well as the top academics.

We sent her there for the theater program, and for the AP classes.

They were wonderful with the girls who had sudden crises, like auto

accidents or appendicitis, but were at a total loss to understand a

girl who could be fine in the morning, but unable to function late in

the day, or had to miss school often, but only a day or so at a time.

After going round and round with them, we pulled her out her junior

year, and found a school that was geared toward kids with problems,

who were willing to work with her. No AP classes, and she went to

community college first, but it the end it didn't matter. It was

amazing to see how much she improved by getting out of a stressful

environment! So similar to the " but you don't look sick " reaction we

so often get.

On Sun, Aug 3, 2008 at 12:51 PM, Petheram

<chris65peth@...> wrote:

> 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.

>>

>>

>

--

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

[Guest guest]

Hello Chris.

Thank you for all of the insightful emails and words of

encouragement. I was recently diagnosed with ra and really needed to

talk to one of my girlfriends. One of them has a mother dying of

cancer so there was no way I would burden her with it. So I called my

other girlfriend. She was shocked and asked about the meds and all

the general crap that goes along with this fun disease. As I was

talking to her she stops me in midsentence and blurts out " Oh my God

that is what is wrong with my wrists! They have been hurting for a

few days. " LOL! I said that I'm sure she was fine just holding her

wrists wrong on the keyboard. She wasn't so sure. I just could not

believe her. She then went on to list all of her aches and pains and

tiredness. What a hoot!! I told her to get some rest and then hung up.

She then proceded to call the other friend and fill her in. She

called me and I told her what our friend said and she replied it's

always about Amy! We laughed and I lied and said I was ok. No need to

worry her at this time.

Sorry for the length but I thought it was funny!

wendy

[Guest guest]

,

Your conversation with your friend sounds so familiar. I know with

ceratin people that when they ask how I am, I always reply " OK, I

have had better days and worse days, but I am OK. "

I think with some this is the way they open the door to compare

pains. It isn't that I don't care, I do. If they have a problem I

don't mind listening at all and being compassionate. But don't ask

and then cut me off. So many times I have heard " I know " . No they

don't and neither do I if I have not experienced what they are going

through.

I am glad that you laughed about it. Having a sense of humor is a

big help and I love to laugh, especially at myself.

I am sorry to hear about your other friend's mother. I have been

there and can relate. So sad to watch your loved ones leaving and

what they have to go through.

Shirley

>

> Hello Chris.

> Thank you for all of the insightful emails and words of

> encouragement. I was recently diagnosed with ra and really needed

to

> talk to one of my girlfriends. One of them has a mother dying of

> cancer so there was no way I would burden her with it. So I called

my

> other girlfriend. She was shocked and asked about the meds and all

> the general crap that goes along with this fun disease. As I was

> talking to her she stops me in midsentence and blurts out " Oh my

God

> that is what is wrong with my wrists! They have been hurting for a

> few days. " LOL! I said that I'm sure she was fine just holding her

> wrists wrong on the keyboard. She wasn't so sure. I just could not

> believe her. She then went on to list all of her aches and pains

and

> tiredness. What a hoot!! I told her to get some rest and then hung

up.

>

> She then proceded to call the other friend and fill her in. She

> called me and I told her what our friend said and she replied it's

> always about Amy! We laughed and I lied and said I was ok. No need

to

> worry her at this time.

>

> Sorry for the length but I thought it was funny!

>

> wendy

>

[Guest guest]

Shirly , Group.

I know, Exactly. In my case. I have been very sickly through my 54

years. I have always took medicine. When I was told I have

congestive heart failure. I was stone cold shock. I was alone at the

doctors. He sat in front of me and said so kindly, so concerned. You

have a congested heart. I still didnt know what that was. So I

asked. He said your heart is not strong enough to pump for your body

so fluid is backing up in your legs. I drove home and told my

family. Since I had so many health problem like irritable bowel

syndrone and so on. They said really ok you going to be ok. ANd back

to buisness they went.

I got a lot of meds for that. My friend who is 78 said stick with me

hon, I had that for 12 years now. Thank God for her. She help me

through the shock of that.

When I came home and said I have RA. They said ok. My daughter said

My head has been hurting a lot, you think its migrains. haaaaaaaaa.

I said could be. I just droped the subject.

Now! I just get all the information I can. And live each day to the

fullest. It has been very hard for about a year. I finally coaxed my

rheumy very gently that my life is to hard to live in pain, please

help me. She did. I am educating myself through this group. ANd with

other people who have my illnesses.

Haaaaaaa. When you tell someone to confide in, I don't think they

relize the seriouness of your illness. As we said about comercials.

Buy this Aleve and you will feel great. So Joe public thinks its no

big deal.

I have always took anyones illness serious, since I have lived many

years very sick. I have pushed myself to get better. But when I got

RA, I was unable to do anything for myself. Now that I know there is

relief ahead, I plan to live. Run, Play, exercise, Walk, You name

it. I am given another chance to change my life style.

Sorry for such a long post. I get carried away.

Hugs gently

Clora