Family Support - Or Lack Thereof

[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 told my mom of my RA diagnosis in January. Since then, she has not

referred to it once--not to ask me how I'm feeling or how my meds are

working or anything. The reason for this is that she, too, has RA,

but has chosen to not see a doctor, to hide in her home, and not deal

with it. She is getting sicker and more disabled, but will never talk

about it. The whole thing makes me angry and sad. She was a good mom

to me--she just cannot deal with this. Might be a mental health issue

complicating matters...

S

[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 told my mom of my RA diagnosis in January. Since then, she has not

referred to it once--not to ask me how I'm feeling or how my meds are

working or anything. The reason for this is that she, too, has RA,

but has chosen to not see a doctor, to hide in her home, and not deal

with it. She is getting sicker and more disabled, but will never talk

about it. The whole thing makes me angry and sad. She was a good mom

to me--she just cannot deal with this. Might be a mental health issue

complicating matters...

S

[Guest guest]

I think everyone gets some of that.

I work with a coworker, who has a new disease every week,and since I work in a

clinc, she stops doctors in the hall almost daily to tell of her symptoms.

Makes me feel like I shouldn't say anything about me.

Family is always willing to blame you. WIth me, it's because I'm obese, must

make me have RA (OA yes, RA no)

Venting here helps me a lot.Words don't seem to help, people just think you are

being snippy. I did finally get the point across to my husband when he was

struck with a bad carpal tunnel case for a few weeks. I think that was divine

intervention.

Noreen

[ ] 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]

It can be difficult. I think our culture has a hard time coping with illness,

and facing it.

My friend has melanoma and she is dying. She is only 34 years old, and she also

has MS. Her folks refuse to even hear her on the phone, I think they just cannot

face what is happening to her, not at all, so rather then spend what time they

can and have this awful thing right in front of them, they now no longer even

speak to her.

When my husband was diagnosed with combat PTSD and Agent Orange cancers, my

family stopped speaking to us.

Becuz of his illness he has not worked since 91. My RA hit and I had to also

stop working and friends often say to me, oh it must be nice to not work. This

hurts me something awful cuz since I was 12 years old I have been on my own and

always worked 2 jobs- and when my husband stopped working, I began to work 3

jobs as we have 3 kids and 2 are disabled.

My stepfather was talking about 6 months ago and complaining about how difficult

it is to live on social security and Medicare. I looked at him and said um,

yeah, tell me, especially with 3 kids. He looked at me and said How would YOU

know? You are young...UG! Gosh I had been telling HIM that for years.

My friend with MS, (a different friend) complained to me one day about

difficulty using a telephone. I said oh, I use a headset, and then I do not

have to try to hold the phone, he snapped at me, how will THAT help? And How do

YOU know? I tried to explain that my wrists usually do not let me hold a phone

to my ear -- he sure did not want to hear it...

Another friend said to me one day- if you are so darned sick, how can you go to

watch fireworks? I said well, my husband sets up my electric scooter, and I

ride to where they are. People seem to also think if you are sick, you maybe

should lay down and never partake of life again or something.

Altho I DO get nasty looks from people when I use my scooter. Friends and

family find it embarrassing, strangers look at me and comment how young I am and

how I should push myself harder. My kids schools get extremely nasty when they

want me to chaperone a walking field trip and I ask if my scooter will fit on

the bus and they say no- and I ask well can I meet you at the destination? and

they say no and then I have to say NO I cannot chaperone---they get angry cuz

gosh I am home, and I am young and what is this RA nonsense anyway?

People do not understand and many do not want to hear it. ANd some people hate

if they are sick and someone else might be sicker.

Our culture has a very difficult time accepting illness.

[Guest guest]

Never really thought about it much. I have had ra since 11. Now at 32

I can look back in fondness on how my parents dealt with it. They did

great. (even when my dad would try and straighten my hand in the

vice). We all learned what to do and what not to do. I never

complained about my pain, thought if I ignored it, it would go away.

Now when my parents complain about being sore and getting bad joints

and this and that I just listen, tone it out and maybe give some

advice. At times they forget I have RA till they notice the pills I

take or the disfiguration of my hands, etc.... That is fine by me

because I never wanted to be identified by the poor little boy and

now man with RA...... In the end tollerate the complainers and

remember there IS someone out there in worse shape than you

Lee

[Guest guest]

The other thing I am lucky for is that I can complain to my mom about

my RA all day and she GETS IT. But I have seen her, for most of my

life, endure comments from her mom or her siblings that completely

discount her disease, her pain, her disability, everything. She puts

up with it but it really irks her. Even though my sister and I grew

up understanding more about RA than others, I still didn't " get it "

until I actually got it. I really understand now that when my mom

went to the mall with us, and got to the point she said she couldn't

go on she had to stop and rest, how much she had already pushed

herself by that point - and that she should have rested after each

store we went to.

But I really replied to tell you this story... since my mom is now

disabled she has time to go to painting class occasionally. She said

recently that all her friends complain about aches and pains from

getting older, since all around their 50s and 60s. She said it's

actually comforting to see her peers catch up with her and know

something about having daily pain, pain that comes from nowhere for

no reason. She said they always sound so surprised when they explain

what is hurting them all the sudden. I know her pain is much worse

than just getting older " aches and pains " but she feels less alone

when others have problems too (and they are not just complaining in a

way to discount her problems).

I tell people I know what is like to feel 80. I know it because the

day I was put on prednisone was the day I woke up and could not

physically walk enough to go to work. I made it to the rheumy's in

the afternoon, walking hunched over and shuffling my feet. Two

women, around 80ish, were walking into the medical office building

too. We all three had the same posture and pace. I thought, if I

had to race them, it would be a toss up who would win.

I am just so thankful I have good drugs that seem to work for me, so

I don't have to feel like that every day. I wish we could all get to

that point.

Jennie

> > 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.

> >

> > --- 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]

Jennie, I know you must have had tremendous pain, and I really feel

for you, but the mental picture of you racing two elderly women down

the hall really cracks me up! Been there....

> Two

> women, around 80ish, were walking into the medical office building

> too. We all three had the same posture and pace. I thought, if I

> had to race them, it would be a toss up who would win.

>

[Guest guest]

It makes me laugh too. When it happened, all I could think was " I

can't believe this! " I know I could have hobbled my way in to work

that day, but 1) everyone who saw me would have said " Oh my what

happened to you, were you in a car accident? " and 2) it wasn't going

to get any better unless I changed drugs. But seeing those two white

haired, hunched over ladies seeming to hobble just a tiny bit faster

than me was something I will never forget.

Jennie

--- In , " " <dumbblondejogger@y...>

wrote:

> Jennie, I know you must have had tremendous pain, and I really feel

> for you, but the mental picture of you racing two elderly women

down

> the hall really cracks me up! Been there....

>

>

>

> > Two

> > women, around 80ish, were walking into the medical office

building

> > too. We all three had the same posture and pace. I thought, if

I

> > had to race them, it would be a toss up who would win.

> >

[Guest guest]

Becky, I know this decision about your Mother was not arrived at easily. You

have gone way beyond trying to please her and you are right to take a stand and

put your son and husband first. No, you are absolutely not hard hearted much the

reverse. Things will work out for you and your family now that you have a plan.

Hugs

June

[Guest guest]

Thank you, I need to hear that.

Becky

[ ] Family Support - Or Lack Thereof

Becky, I know this decision about your Mother was not arrived at easily. You

have gone way beyond trying to please her and you are right to take a stand and

put your son and husband first. No, you are absolutely not hard hearted much the

reverse. Things will work out for you and your family now that you have a plan.

Hugs

June