Re: Family Support - Or Lack Thereof

[Guest guest]

Oh Kim, I think I understand. My familyis - a mess, totally non supportive, a

bunch of hypochondriacs, too- and unsympathetic. Pain is so individual and well

my best friend hand my husband both have sciatic problems, my husband shuts down

and shuts us all out, my friend went into the hospital for a weeks of IV

morphine for it....

NOONE could understand me when my RA hit, 3 kids with NO pain meds, not even

tylenol, and I went home hours after the birth, major knee surgery with one pain

shot before I woke up from anethestic, BUT when my RA hit, I was just awful.

Actually, I do not even recall 2 full years, but, my husband and kids say I

could not move, and even not moving I screamed what they call " primal screams "

nearly round the clock. Go figure, did I really change that much in my ability

to accept pain? Gosh people pat me on the head and say aw push thru it. UG.

My experince is also that people really have no clue what RA is- they ask why I

have a splint on and I tell them and they begin to tell me about their

arthritis, and gosh Imust be a wimp- cuz they do not wear a splint ever.

It also confuses people becuz I can be flaring in one place now and 3 houurs

from now that spot might be kind of OK but a new place is now swollen and

flaring.

Hang in there! DO what you can. Ignore the ignorant. Or try to educate them.

- In , " Kim " <mystic_eyes13@h...> wrote:

> Hi everyone,

> I'm Kim from SC- don't post much but read alot and something just hit

> me today that is really bugging me and I wanted to ask if any of you

> have experienced the same and how you handled it.

> I come from a long line of hypochondriacs. No one has ever had any

> sickness or disease, or experienced any pain worse than the women in

> my family. Blah, blah, blah...

> As a result, I've learned to suck up my pain, work through it and get

> on with my life. God forbid if I'm feeling too tired or achy to carry

> the load for everyone. No one will listen, as they're too busy

> moaning about how sick they are.

> Well, I'm scheduled to have my gall bladder out next Tuesday and

> according to one member of my family - I don't really need to have

> surgery. I haven't had the crippling pain that she had when she had

> gall stones. Just because I can't go to bed for a week and cry and

> whine to everyone about how bad I feel - my pain isn't real. I'm

> sorry but I've had RA for 21 years and I've learned to develop a high

> tolerance for pain and a low tolerance for complaining!!

> Do you think I'm being over-sensitive or do I have a valid gripe? How

> do you try to explain to your loved ones that it's not fair to

> discount someone else's pain just because you've never felt that way?

>

> And while I'm at it - how about people that try to give you

> unsolicited advice as to how you can cure your arthritis?

> Oh that really frosts my britches. You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles when

> you were young, do some exercise, watch so much television, etc. you

> wouldn't have arthritis. " Like it was my choice to have this awful

> disease. If you've ever received any of these comments, do you

> respond nicely or let them have it with both barrels?

>

> Thanks for listening.

> I feel much better now.

>

> Kim

[Guest guest]

My husband's family is just like that and my mother is also. I just play a game

with them. When they start their complaining about whatever I act like I don't

hear them and start in on my problems, I mean really blast them and talk nonstop

and don't give them a chance. It's funny, my in-laws will cut in and say they

have to go. They will always say, well, I have to go now. Those exact words.

I don't complain much at all to anyone but all of you but I have learned to let

them have it and now they don't want to talk to me because I won't listen! My

mother on the other hand will say " you're too young to have those problems " . I

have no idea what she means, she will just start in again about her problems.

Becky

[ ] Family Support - Or Lack Thereof

Hi everyone,

I'm Kim from SC- don't post much but read alot and something just hit

me today that is really bugging me and I wanted to ask if any of you

have experienced the same and how you handled it.

I come from a long line of hypochondriacs. No one has ever had any

sickness or disease, or experienced any pain worse than the women in

my family. Blah, blah, blah...

As a result, I've learned to suck up my pain, work through it and get

on with my life. God forbid if I'm feeling too tired or achy to carry

the load for everyone. No one will listen, as they're too busy

moaning about how sick they are.

Well, I'm scheduled to have my gall bladder out next Tuesday and

according to one member of my family - I don't really need to have

surgery. I haven't had the crippling pain that she had when she had

gall stones. Just because I can't go to bed for a week and cry and

whine to everyone about how bad I feel - my pain isn't real. I'm

sorry but I've had RA for 21 years and I've learned to develop a high

tolerance for pain and a low tolerance for complaining!!

Do you think I'm being over-sensitive or do I have a valid gripe? How

do you try to explain to your loved ones that it's not fair to

discount someone else's pain just because you've never felt that way?

And while I'm at it - how about people that try to give you

unsolicited advice as to how you can cure your arthritis?

Oh that really frosts my britches. You know the type - " If you

wouldn't drink so much caffiene, eat red meat, pop your knuckles when

you were young, do some exercise, watch so much television, etc. you

wouldn't have arthritis. " Like it was my choice to have this awful

disease. If you've ever received any of these comments, do you

respond nicely or let them have it with both barrels?

Thanks for listening.

I feel much better now.

Kim

[Guest guest]

Hi Kim,

I don't think that you are being selfish by asking this time for a little

sympathy and reassurance

from your family. It is like the male partners in our lives...we don't want them

to fix it, we

just want them to listen. I probably would have told that family member that

when they got their

MD I might take their advice and not have surgery.

I will add you to my prayer list for a successful outcome and a quick recovery.

Please let us know

how you are. Iris

--- Kim <mystic_eyes13@...> wrote:

> Hi everyone,

> I'm Kim from SC- don't post much but read alot and something just hit

> me today that is really bugging me and I wanted to ask if any of you

> have experienced the same and how you handled it.

> I come from a long line of hypochondriacs. No one has ever had any

> sickness or disease, or experienced any pain worse than the women in

> my family. Blah, blah, blah...

> As a result, I've learned to suck up my pain, work through it and get

> on with my life. God forbid if I'm feeling too tired or achy to carry

> the load for everyone. No one will listen, as they're too busy

> moaning about how sick they are.

> Well, I'm scheduled to have my gall bladder out next Tuesday and

> according to one member of my family - I don't really need to have

> surgery. I haven't had the crippling pain that she had when she had

> gall stones. Just because I can't go to bed for a week and cry and

> whine to everyone about how bad I feel - my pain isn't real. I'm

> sorry but I've had RA for 21 years and I've learned to develop a high

> tolerance for pain and a low tolerance for complaining!!

> Do you think I'm being over-sensitive or do I have a valid gripe? How

> do you try to explain to your loved ones that it's not fair to

> discount someone else's pain just because you've never felt that way?

>

> And while I'm at it - how about people that try to give you

> unsolicited advice as to how you can cure your arthritis?

> Oh that really frosts my britches. You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles when

> you were young, do some exercise, watch so much television, etc. you

> wouldn't have arthritis. " Like it was my choice to have this awful

> disease. If you've ever received any of these comments, do you

> respond nicely or let them have it with both barrels?

>

> Thanks for listening.

> I feel much better now.

>

> Kim

>

>

>

>

>

>

>

[Guest guest]

" Frosts my britches " is an expression I haven't heard before. I like

it! It's really expressive. My advice is to smile, nod, and then ignore

their advice, LOL. Sue

On Tuesday, July 27, 2004, at 05:24 PM, Kim wrote:

> And while I'm at it - how about people that try to give you

> unsolicited advice as to how you can cure your arthritis?

> Oh that really frosts my britches.

[Guest guest]

Kim,

I come from a highly dysfunctional family. My mother was and still is

verbally, emotionally and mentally abusive - although now I've learned to hang

up the phone when she gets that way. My Dad died when I was 24. He had AS as

badly as you can get it, and didn't complain, so what's my problem? The fact

that I have several types of arthritis as well as fibro doesn't matter.

Plus, I'm the lucky one. I have a wonderful husband and 7 great kids who

think I'm a great Mom.

My poor sisters - none of them have the ideal husband or family (they'd be

surprised to hear that!) and none of them have any illnesses. But they are all

just as self-absorbed as my mother is.

The closest one is 15 hours away, and I consider myself fortunate for that.

My husband's sister and my cousin are more like sisters to me. But my SIL,

while sympathetic, always has a bigger crisis in her life. And my cousin isn't

available too much- she works 2 jobs.

And I refuse to " dump " on my kids. My mom did that to me, and I hated it.

I will let them know what's going on, and also let them know I'm fine and if I

need help, I'll let them know. I laugh about it with them, and that actually

helps.

In the end, what I have is myself and my faith. I believe in me, and I

believe the people who can help me the most are the ones I've loved who have

gone on to before me. At difficult times, I've prayed " To all those who love

me, and all those I've loved, please be with me at this difficult time. I need

your strength and support to make it through this. " As I say that short prayer,

I think of my Dad, my Aunt, my grandparents, great-grandparents, and other

family members. And in the short time it takes to say it, shortly after, I'll

feel a warm glow. It's amazing!!! That glow makes me feel SO much better.

It's not something I do often, I " save " it for the most difficult of times.

And it always gets me through.

I answer questions as medically difficult as I can. Like " AS is genetically

inherited by gene HLA-B27. My father had it, and now I have it. If it

continues to progress, my back will be paralyzed. At this point, only my lower

back is. It will also disintegrate my disks so I will have no shock absorption.

It's like being a car with bad shocks. Can you imagine riding in that? "

I try to leave them speechless.

Or " It must be nice to have all the answers " and then I walk away.

Or " I didn't know you were in the medical field! What do you practice? "

" Really? I hadn't read that particular research. Do you remember where you

read it? " (It's usually the National Enquirer! lolol)

Or " Oh, do you remember where you read that? I'd like to take a look at it

and see if it would help me. " I've never met anyone who remembered. Or it's

been a friend.

or " Oh, how I wish we had the time to really get into this. But a thorough

discussion would take at least an hour, if not more. " Never had a taker.

I don't feel bad about putting them in a difficult position. I say it very

nicely, not at all sarcastically, show real interest in their suggestions, and

hope that the message gets through - they don't know what they're talking about.

Do they become more sympathetic? I don't think so, but they put on a good

show. And rarely bring it up. Given the choice of what they do say, and saying

nothing, I'd rather they say nothing.

My husband will say something though. When a family member asks how he is,

he'll say fine, but that I've been having a rough time. Then he becomes Mr.

Sensistive, and talks about how concerned he is about me because I can't do this

or that, he hates to see me walk when I'm in such pain, he knows I cry from the

pain sometimes, but don't want him to know, he's talked with my Dr. and they are

doing everything they can, but I have a particularly difficult problems - so

much shows up on my x-rays and MRI's that it's hard to know what to treat first.

They always believe him!

And that's my 2¢ worth!

Dix

[ ] Re: Family Support - Or Lack Thereof

Oh Kim, I think I understand. My familyis - a mess, totally non supportive, a

bunch of hypochondriacs, too- and unsympathetic. Pain is so individual and well

my best friend hand my husband both have sciatic problems, my husband shuts down

and shuts us all out, my friend went into the hospital for a weeks of IV

morphine for it....

NOONE could understand me when my RA hit, 3 kids with NO pain meds, not even

tylenol, and I went home hours after the birth, major knee surgery with one pain

shot before I woke up from anethestic, BUT when my RA hit, I was just awful.

Actually, I do not even recall 2 full years, but, my husband and kids say I

could not move, and even not moving I screamed what they call " primal screams "

nearly round the clock. Go figure, did I really change that much in my ability

to accept pain? Gosh people pat me on the head and say aw push thru it. UG.

My experince is also that people really have no clue what RA is- they ask why

I have a splint on and I tell them and they begin to tell me about their

arthritis, and gosh Imust be a wimp- cuz they do not wear a splint ever.

It also confuses people becuz I can be flaring in one place now and 3 houurs

from now that spot might be kind of OK but a new place is now swollen and

flaring.

Hang in there! DO what you can. Ignore the ignorant. Or try to educate

them.

- In , " Kim " <mystic_eyes13@h...> wrote:

> Hi everyone,

> I'm Kim from SC- don't post much but read alot and something just hit

> me today that is really bugging me and I wanted to ask if any of you

> have experienced the same and how you handled it.

> I come from a long line of hypochondriacs. No one has ever had any

> sickness or disease, or experienced any pain worse than the women in

> my family. Blah, blah, blah...

> As a result, I've learned to suck up my pain, work through it and get

> on with my life. God forbid if I'm feeling too tired or achy to carry

> the load for everyone. No one will listen, as they're too busy

> moaning about how sick they are.

> Well, I'm scheduled to have my gall bladder out next Tuesday and

> according to one member of my family - I don't really need to have

> surgery. I haven't had the crippling pain that she had when she had

> gall stones. Just because I can't go to bed for a week and cry and

> whine to everyone about how bad I feel - my pain isn't real. I'm

> sorry but I've had RA for 21 years and I've learned to develop a high

> tolerance for pain and a low tolerance for complaining!!

> Do you think I'm being over-sensitive or do I have a valid gripe? How

> do you try to explain to your loved ones that it's not fair to

> discount someone else's pain just because you've never felt that way?

>

> And while I'm at it - how about people that try to give you

> unsolicited advice as to how you can cure your arthritis?

> Oh that really frosts my britches. You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles when

> you were young, do some exercise, watch so much television, etc. you

> wouldn't have arthritis. " Like it was my choice to have this awful

> disease. If you've ever received any of these comments, do you

> respond nicely or let them have it with both barrels?

>

> Thanks for listening.

> I feel much better now.

>

> Kim

[Guest guest]

Hi Kim,

I sure do understand where you're coming from! My family consists of

my husband (who has Parkinson's) and a married daughter who has a 4-

year old son and 17-month old triplets. When we found out Ron had

Parkinson's 2 years ago, our daughter was pregnant with the triplets

and her comment was " I don't need another downer right now. " (she

has since changed her attitude.) During that time I still didn't

know what was wrong with me, but later found out that I had Dercum's

Disease, which is a rare autoimmune disease similar to fibro but with

the addition of hundreds of painful lipomas all over my body.

I finally had to sit my daughter and her husband (who seemed to be

WAY more understanding) down and explain to them just what the limits

of my capabilities are--that I don't look as sick as I actually am,

that just because I smile and laugh and still have a pretty " up "

attitude doesn't mean I can do everything I used to do. I can't

always watch the kids at the last minute,unless it's an emergency,

and most likely not in the evening because I'm a total vegetable by

then. I showed them my prescriptions and what they alone do to me

physically and financially. I think I got the message across,

because they are now volunteering to do things for us!

I wrote a letter to friends explaining my disease as most had never

heard of it, and why I now use a cane, why I can't volunteer at

church as much as I used to (I do different things now that don't

involve as much running around) and only get a few weird suggestions

of how I should treat this disease. I just smile and thank them.

You know best what's best for you, and sometimes it's just a good

scream or cry or laugh, but sometimes you just have to tell people

straight out and not mince words. If they're too dumb to understand,

hit them with a 2x4!

Judi

[Guest guest]

Wow Kim, do I ever know where you're coming from. I'm just recently

diagnosed with RA-in March of this year and I find the worst thing is

getting my mom to listen-just to listen-without telling me instead of

her latest ache and pain. It's frustrating because sometimes it's

helpful just to be able to talk, to get it out. I find most of the

time that I also just suck it up and stay quiet. And you know what

somebody always has some kind of opinion on something they usually

know nothing about. I've gotten to the point now where I let it

slide although sometimes it does still frost me. I hope your surgery

goes well-and you're right, your pain or your surgery shouldn't be

discounted. They are probably doing that because they are upset that

it isn't them to get the attention. When I found out I had RA, my

mom had to do one better by having back surgery. It's just the way

they are I've found. I had my gall bladder out years ago now and I

didn't have excrutiating pain either-I was only very sick to my

stomach. Good luck with the op. Darlene.

> Hi everyone,

> I'm Kim from SC- don't post much but read alot and something just

hit

> me today that is really bugging me and I wanted to ask if any of

you

> have experienced the same and how you handled it.

> I come from a long line of hypochondriacs. No one has ever had any

> sickness or disease, or experienced any pain worse than the women

in

> my family. Blah, blah, blah...

> As a result, I've learned to suck up my pain, work through it and

get

> on with my life. God forbid if I'm feeling too tired or achy to

carry

> the load for everyone. No one will listen, as they're too busy

> moaning about how sick they are.

> Well, I'm scheduled to have my gall bladder out next Tuesday and

> according to one member of my family - I don't really need to have

> surgery. I haven't had the crippling pain that she had when she had

> gall stones. Just because I can't go to bed for a week and cry and

> whine to everyone about how bad I feel - my pain isn't real. I'm

> sorry but I've had RA for 21 years and I've learned to develop a

high

> tolerance for pain and a low tolerance for complaining!!

> Do you think I'm being over-sensitive or do I have a valid gripe?

How

> do you try to explain to your loved ones that it's not fair to

> discount someone else's pain just because you've never felt that

way?

>

> And while I'm at it - how about people that try to give you

> unsolicited advice as to how you can cure your arthritis?

> Oh that really frosts my britches. You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles

when

> you were young, do some exercise, watch so much television, etc.

you

> wouldn't have arthritis. " Like it was my choice to have this awful

> disease. If you've ever received any of these comments, do you

> respond nicely or let them have it with both barrels?

>

> Thanks for listening.

> I feel much better now.

>

> Kim

[Guest guest]

This has been a wonderful thread to read. What amazes me is how many

of us feel the same way and get the same responses from the people

around us. My family isn't into the my-pain-is-worse-than-your-pain

battles. We're actually kind of the opposite. No one in my family

that I've ever heard of had RA, or any autoimmune disease, or any

real illness that I know of. They all tend (especially the women) to

be almost freakishly healthy until the one day they don't wake up in

the morning when they're 90 or something. So from my family,

especially my mom, I get this Total Denial. My mom's always

saying, " Well, maybe that's not really what it is. " Or " maybe it

will just go away. " I know it's just difficult for her to face, but

sometimes it does hurt feeling like my problems are being minimized.

On the other hand, I think of all the times when my mom has told me

about her back aches or whatever (she's basically healthy, but has

normal age-related aches and pains) and I've just sort of sent my

mind somewhere else. Makes me feel really guilty.

I read the sweet note that Jennie wrote about her mom. Like I said,

my mom didn't have health problems, but my dad was killed in an

accident when she was 30, leaving her with 3 kids under the age of 5

and no job. There were times when I was growing up when I thought

she was kind of weak or indecisive, but now I realize how tough she

actually was to get us all raised with so little help and so few

complaints. This disease, I've found, has really changed my

perspective on a LOT of things.

, " kalylyn " <bj19662001@y...> wrote:

> Wow Kim, do I ever know where you're coming from. I'm just

recently

> diagnosed with RA-in March of this year and I find the worst thing

is

> getting my mom to listen-just to listen-without telling me instead

of

> her latest ache and pain. It's frustrating because sometimes it's

> helpful just to be able to talk, to get it out. I find most of the

> time that I also just suck it up and stay quiet. And you know what

> somebody always has some kind of opinion on something they usually

> know nothing about. I've gotten to the point now where I let it

> slide although sometimes it does still frost me. I hope your

surgery

> goes well-and you're right, your pain or your surgery shouldn't be

> discounted. They are probably doing that because they are upset

that

> it isn't them to get the attention. When I found out I had RA, my

> mom had to do one better by having back surgery. It's just the way

> they are I've found. I had my gall bladder out years ago now and I

> didn't have excrutiating pain either-I was only very sick to my

> stomach. Good luck with the op. Darlene.

>

>

> > Hi everyone,

> > I'm Kim from SC- don't post much but read alot and something just

> hit

> > me today that is really bugging me and I wanted to ask if any of

> you

> > have experienced the same and how you handled it.

> > I come from a long line of hypochondriacs. No one has ever had

any

> > sickness or disease, or experienced any pain worse than the women

> in

> > my family. Blah, blah, blah...

> > As a result, I've learned to suck up my pain, work through it and

> get

> > on with my life. God forbid if I'm feeling too tired or achy to

> carry

> > the load for everyone. No one will listen, as they're too busy

> > moaning about how sick they are.

> > Well, I'm scheduled to have my gall bladder out next Tuesday and

> > according to one member of my family - I don't really need to

have

> > surgery. I haven't had the crippling pain that she had when she

had

> > gall stones. Just because I can't go to bed for a week and cry

and

> > whine to everyone about how bad I feel - my pain isn't real. I'm

> > sorry but I've had RA for 21 years and I've learned to develop a

> high

> > tolerance for pain and a low tolerance for complaining!!

> > Do you think I'm being over-sensitive or do I have a valid gripe?

> How

> > do you try to explain to your loved ones that it's not fair to

> > discount someone else's pain just because you've never felt that

> way?

> >

> > And while I'm at it - how about people that try to give you

> > unsolicited advice as to how you can cure your arthritis?

> > Oh that really frosts my britches. You know the type - " If you

> > wouldn't drink so much caffiene, eat red meat, pop your knuckles

> when

> > you were young, do some exercise, watch so much television, etc.

> you

> > wouldn't have arthritis. " Like it was my choice to have this

awful

> > disease. If you've ever received any of these comments, do you

> > respond nicely or let them have it with both barrels?

> >

> > Thanks for listening.

> > I feel much better now.

> >

> > Kim

[Guest guest]

In a message dated 27/07/2004 16:38:21 Central Standard Time,

mystic_eyes13@... writes:

> You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles when

> you were young, do some exercise, watch so much television, etc. you

> wouldn't have arthritis. "

Kim

According to my mom, my pet parrots caused my rheumatoid!! You are

definitely NOT alone! Cary

[Guest guest]

LOL Carey, that must be where my ra came from-those pesky pet parrots of mine!!!

Birdijo@... wrote:

In a message dated 27/07/2004 16:38:21 Central Standard Time,

mystic_eyes13@... writes:

> You know the type - " If you

> wouldn't drink so much caffiene, eat red meat, pop your knuckles when

> you were young, do some exercise, watch so much television, etc. you

> wouldn't have arthritis. "

Kim

According to my mom, my pet parrots caused my rheumatoid!! You are

definitely NOT alone! Cary