Re: They don't get it...

[Guest guest]

Hi,

I don't post often, but I have been running into the same issue with some

friends. I am 28, and my peers don't understand why I leave a party at nine

pm. I even had my husbands best friend tell me to have fun at home playing

Parcheesi with myself while they got out and have some real fun. So, I sent

out and email and broke it down to everyone that has been giving me a hard

time. So, hopefully they can empathize. ( It has to do with a vacation

that we are all taking together soon.)

Here's an excerpt,

" I will be tired and probably achey when we get to Miami. Achey meaning it

will probably hurt to walk, and there will probably be pain in my neck and

wrists as well. All of this pain will cause me to be drop dead tired and I

hate to say grouchy. " So, I will be heading to the hotel immediately after

dinner.

I got a few apologies, and a lot of sincere sympathy and compassionate

understanding. SO, my advice is BREAK IT DOWN FOR PEOPLE!!!!! The people

who truly care about you I think would like to know what you have to deal

with daily. If they can't handle it, then they are not true friends, and

they are not worth your limited energy.

I know this doesn't help when it comes to those of you that have children,

but adult friends and family who care about you should be understanding when

they know exactly what your struggles are on a daily basis.

Hope this helps!

Cristen in NC

[ ] They don't get it...

> I'll add my 2 cents here--it is sad that we have the double burden of

> having to endure the varying pain and disabilities we have, without

> having to keep quiet and try to act like there's nothing wrong!! I

> got the same story about " why don't you do more things with the

> grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

> know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

> them for a few hours at their house once a week is enough to wear me

> out! I know with kids they just don't want to see their parents as

> ill or needy, but my daughter and SIL understand that my husband is

> not in the best health (he has Parkinsons) but they can't grasp the

> fact that I'm not on top either. I have to try to keep quiet around

> Ron and not complain too much because the stress causes his PD to

> flare, and I still do most of the cleaning, cooking, and yard work.

> The kids don't even offer to help ( " we've got so much to do

> ourselves " ) but there will come a day when I can't do it any more.

>

> We had friends (guess they really weren't friends) who dropped us

> when I couldn't have them over for dinners and late-night visits, and

> one woman at church insists that since SHE has fibro and exercise

> helped her, it should help me. I can't get people to understand that

> Dercum's is NOT fibro, only LIKE it, except that the more I exercise

> the worse it gets. I finally got the therapists to understand that,

> and they ended my PT on my shoulder yesterday; the therapist said

> that is probably as good as it's going to get, given the number of

> tumors in my shoulder and armpit area.

>

> Thanks for giving me the chance to vent where it's not possible for

> me to do it otherwise! Tess, and all the rest of you, you do know

> what it's like, and that's the benefit of this group.

>

> Judi

>

>

>

>

>

>

[Guest guest]

Hi,

I don't post often, but I have been running into the same issue with some

friends. I am 28, and my peers don't understand why I leave a party at nine

pm. I even had my husbands best friend tell me to have fun at home playing

Parcheesi with myself while they got out and have some real fun. So, I sent

out and email and broke it down to everyone that has been giving me a hard

time. So, hopefully they can empathize. ( It has to do with a vacation

that we are all taking together soon.)

Here's an excerpt,

" I will be tired and probably achey when we get to Miami. Achey meaning it

will probably hurt to walk, and there will probably be pain in my neck and

wrists as well. All of this pain will cause me to be drop dead tired and I

hate to say grouchy. " So, I will be heading to the hotel immediately after

dinner.

I got a few apologies, and a lot of sincere sympathy and compassionate

understanding. SO, my advice is BREAK IT DOWN FOR PEOPLE!!!!! The people

who truly care about you I think would like to know what you have to deal

with daily. If they can't handle it, then they are not true friends, and

they are not worth your limited energy.

I know this doesn't help when it comes to those of you that have children,

but adult friends and family who care about you should be understanding when

they know exactly what your struggles are on a daily basis.

Hope this helps!

Cristen in NC

[ ] They don't get it...

> I'll add my 2 cents here--it is sad that we have the double burden of

> having to endure the varying pain and disabilities we have, without

> having to keep quiet and try to act like there's nothing wrong!! I

> got the same story about " why don't you do more things with the

> grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

> know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

> them for a few hours at their house once a week is enough to wear me

> out! I know with kids they just don't want to see their parents as

> ill or needy, but my daughter and SIL understand that my husband is

> not in the best health (he has Parkinsons) but they can't grasp the

> fact that I'm not on top either. I have to try to keep quiet around

> Ron and not complain too much because the stress causes his PD to

> flare, and I still do most of the cleaning, cooking, and yard work.

> The kids don't even offer to help ( " we've got so much to do

> ourselves " ) but there will come a day when I can't do it any more.

>

> We had friends (guess they really weren't friends) who dropped us

> when I couldn't have them over for dinners and late-night visits, and

> one woman at church insists that since SHE has fibro and exercise

> helped her, it should help me. I can't get people to understand that

> Dercum's is NOT fibro, only LIKE it, except that the more I exercise

> the worse it gets. I finally got the therapists to understand that,

> and they ended my PT on my shoulder yesterday; the therapist said

> that is probably as good as it's going to get, given the number of

> tumors in my shoulder and armpit area.

>

> Thanks for giving me the chance to vent where it's not possible for

> me to do it otherwise! Tess, and all the rest of you, you do know

> what it's like, and that's the benefit of this group.

>

> Judi

>

>

>

>

>

>

[Guest guest]

Dear Judi and all:

There are two things I want to reply to here. The first is WOW!!!! 2 1/2

year-old-triplets. They sound like fun, but taking care of them would wear

ANYONE out--even someone who was 100% healthy and even athletic.

It hit a huge nerve when you were talking about the friend who said that, since

exercise cured her " fibro " then it should cure you. Listen, if exercise or diet

totally solved fibro or RA or the other chroinc pain issues we struggle with, we

would have figured it out by now and we'd all be doing it. HONEST! WE WOULD!

One lady I know got very aggressive with me that if I only ate fruits and

vegetables I could cure myself. I explained to her that I tried many different

diets, including one that really limited meat, and they didn't help. (Actually,

I felt best on an Atkins diet but didn't stay on it because everyone was telling

me it would eventually kill me.) The lady was insistent. She said it only

worked if you ate ONLY fruits and vegetables and stayed on it for a long time.

Well, eventually this woman lost a lot of her hair and was passing out in stores

and stuff. Not only that, after being months on only fruits and veggies she got

diarrhea and couldn't get rid of it for

months.

Another friend told me I would be cured if I cut out all artifical sweetners, so

I did, but nothing changed. The ones who bug me about exercise take the cake,

though. I work very hard to keep moving--If I ever stop moving I'm sunk--but to

do ANY TYPE of repetitive exercise where you repeat a motion more than a couple

of times does a real number on me. I pay for it BIG TIME.

People like to think that there's an easy answer. They want to think that our

diseases are because we're doing something wrong--because we were lazy or ate

badly or something like that. They like to tell themselves that because they

don't want to think it could happen to them. They want to believe that if they

were hurting or crippled they could fix it. Sorry, folks. It doesn't work that

way. We can't think ourselves out of it. Exercise and diet may improve things

and we will constantly search for ways to improve our situation. But don't kid

yourselves and think that we are in control of our own problems. RA and

fibromyalgia have a mind of their own. All we can do is frantically try to

shovel the crap our disease hands us. Nobody would love a quick fix more than

someone who is tortured with chronic pain--and getting this disease isn't

something we did to spite others or to get out of babysitting. What you realize

when you are no longer able to help others is that helping

others is a true joy in life, and we long for those opportunities and will do

what we can.

Sorry to spew. I've been dealing with this for almost two years and it's only

been the last month or so that I've had this group to talk to so I still have a

lot of stuff to vent. Please forgive me for posting so often and for ranting

and raving. I love you guys!!!!!!

laura

nonny46 <nonny46@...> wrote:

I'll add my 2 cents here--it is sad that we have the double burden of

having to endure the varying pain and disabilities we have, without

having to keep quiet and try to act like there's nothing wrong!! I

got the same story about " why don't you do more things with the

grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

them for a few hours at their house once a week is enough to wear me

out! I know with kids they just don't want to see their parents as

ill or needy, but my daughter and SIL understand that my husband is

not in the best health (he has Parkinsons) but they can't grasp the

fact that I'm not on top either. I have to try to keep quiet around

Ron and not complain too much because the stress causes his PD to

flare, and I still do most of the cleaning, cooking, and yard work.

The kids don't even offer to help ( " we've got so much to do

ourselves " ) but there will come a day when I can't do it any more.

We had friends (guess they really weren't friends) who dropped us

when I couldn't have them over for dinners and late-night visits, and

one woman at church insists that since SHE has fibro and exercise

helped her, it should help me. I can't get people to understand that

Dercum's is NOT fibro, only LIKE it, except that the more I exercise

the worse it gets. I finally got the therapists to understand that,

and they ended my PT on my shoulder yesterday; the therapist said

that is probably as good as it's going to get, given the number of

tumors in my shoulder and armpit area.

Thanks for giving me the chance to vent where it's not possible for

me to do it otherwise! Tess, and all the rest of you, you do know

what it's like, and that's the benefit of this group.

Judi

[Guest guest]

Dear Judi and all:

There are two things I want to reply to here. The first is WOW!!!! 2 1/2

year-old-triplets. They sound like fun, but taking care of them would wear

ANYONE out--even someone who was 100% healthy and even athletic.

It hit a huge nerve when you were talking about the friend who said that, since

exercise cured her " fibro " then it should cure you. Listen, if exercise or diet

totally solved fibro or RA or the other chroinc pain issues we struggle with, we

would have figured it out by now and we'd all be doing it. HONEST! WE WOULD!

One lady I know got very aggressive with me that if I only ate fruits and

vegetables I could cure myself. I explained to her that I tried many different

diets, including one that really limited meat, and they didn't help. (Actually,

I felt best on an Atkins diet but didn't stay on it because everyone was telling

me it would eventually kill me.) The lady was insistent. She said it only

worked if you ate ONLY fruits and vegetables and stayed on it for a long time.

Well, eventually this woman lost a lot of her hair and was passing out in stores

and stuff. Not only that, after being months on only fruits and veggies she got

diarrhea and couldn't get rid of it for

months.

Another friend told me I would be cured if I cut out all artifical sweetners, so

I did, but nothing changed. The ones who bug me about exercise take the cake,

though. I work very hard to keep moving--If I ever stop moving I'm sunk--but to

do ANY TYPE of repetitive exercise where you repeat a motion more than a couple

of times does a real number on me. I pay for it BIG TIME.

People like to think that there's an easy answer. They want to think that our

diseases are because we're doing something wrong--because we were lazy or ate

badly or something like that. They like to tell themselves that because they

don't want to think it could happen to them. They want to believe that if they

were hurting or crippled they could fix it. Sorry, folks. It doesn't work that

way. We can't think ourselves out of it. Exercise and diet may improve things

and we will constantly search for ways to improve our situation. But don't kid

yourselves and think that we are in control of our own problems. RA and

fibromyalgia have a mind of their own. All we can do is frantically try to

shovel the crap our disease hands us. Nobody would love a quick fix more than

someone who is tortured with chronic pain--and getting this disease isn't

something we did to spite others or to get out of babysitting. What you realize

when you are no longer able to help others is that helping

others is a true joy in life, and we long for those opportunities and will do

what we can.

Sorry to spew. I've been dealing with this for almost two years and it's only

been the last month or so that I've had this group to talk to so I still have a

lot of stuff to vent. Please forgive me for posting so often and for ranting

and raving. I love you guys!!!!!!

laura

nonny46 <nonny46@...> wrote:

I'll add my 2 cents here--it is sad that we have the double burden of

having to endure the varying pain and disabilities we have, without

having to keep quiet and try to act like there's nothing wrong!! I

got the same story about " why don't you do more things with the

grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

them for a few hours at their house once a week is enough to wear me

out! I know with kids they just don't want to see their parents as

ill or needy, but my daughter and SIL understand that my husband is

not in the best health (he has Parkinsons) but they can't grasp the

fact that I'm not on top either. I have to try to keep quiet around

Ron and not complain too much because the stress causes his PD to

flare, and I still do most of the cleaning, cooking, and yard work.

The kids don't even offer to help ( " we've got so much to do

ourselves " ) but there will come a day when I can't do it any more.

We had friends (guess they really weren't friends) who dropped us

when I couldn't have them over for dinners and late-night visits, and

one woman at church insists that since SHE has fibro and exercise

helped her, it should help me. I can't get people to understand that

Dercum's is NOT fibro, only LIKE it, except that the more I exercise

the worse it gets. I finally got the therapists to understand that,

and they ended my PT on my shoulder yesterday; the therapist said

that is probably as good as it's going to get, given the number of

tumors in my shoulder and armpit area.

Thanks for giving me the chance to vent where it's not possible for

me to do it otherwise! Tess, and all the rest of you, you do know

what it's like, and that's the benefit of this group.

Judi

[Guest guest]

Dear ,

Thanks for sharing your struggles and your sympathy! The triplets

aren't really so bad, and they do know when Nonny raises her voice

and says " SIT...NOW!! " they'd better! Their big brother is just

beginning to get an idea of how things are. Unfortunately, their

parents just don't want to see this happening as I think they are

afraid they are going to have to take care of us some day. Up until

3 years ago, we were both very strong and active, and they can't

grasp the fact that this has changed. But I am 59 and Ron is 68, so

they have to realize that we won't be kids forever (I just sometimes

act like it) and that maybe they won't either.

How can we expect friends and family to treat us any better than much

of the medical profession does? It took me nearly 3 years to get a

diagnosis, and I endured (as a and and some others can

attest to) much grief at the hands of a number of doctors. One even

told me early this year that " there is nothing wrong with you that

some diet and exercise wouldn't cure. " He didn't last long--we have

a new doctor now!

There is an article in the October Good Housekeeping magazine about

how some overweight women were treated, and I wrote to the editors

asking them to consider doing a story on how people with rare

diseases are treated, especially when said diseases cause weight gain!

OK, sorry I have rambled, but I guess I still need to do some

venting. And then go finish baking bread for communion Sunday...

Judi

[Guest guest]

Dear ,

Thanks for sharing your struggles and your sympathy! The triplets

aren't really so bad, and they do know when Nonny raises her voice

and says " SIT...NOW!! " they'd better! Their big brother is just

beginning to get an idea of how things are. Unfortunately, their

parents just don't want to see this happening as I think they are

afraid they are going to have to take care of us some day. Up until

3 years ago, we were both very strong and active, and they can't

grasp the fact that this has changed. But I am 59 and Ron is 68, so

they have to realize that we won't be kids forever (I just sometimes

act like it) and that maybe they won't either.

How can we expect friends and family to treat us any better than much

of the medical profession does? It took me nearly 3 years to get a

diagnosis, and I endured (as a and and some others can

attest to) much grief at the hands of a number of doctors. One even

told me early this year that " there is nothing wrong with you that

some diet and exercise wouldn't cure. " He didn't last long--we have

a new doctor now!

There is an article in the October Good Housekeeping magazine about

how some overweight women were treated, and I wrote to the editors

asking them to consider doing a story on how people with rare

diseases are treated, especially when said diseases cause weight gain!

OK, sorry I have rambled, but I guess I still need to do some

venting. And then go finish baking bread for communion Sunday...

Judi

[Guest guest]

Judi,

Having such a rare disease makes it much more difficult for you. How

do you explain something that doctors don't even understand?

Why do they even compare Dercum's to Fibro? I think we've all heard

all the reasons we're sick. We eat the wrong foods, we're overweight,

we don't exercise enough, we stress out, we're just lazy, it's all in

our heads, yada yada yada. They may not get it, but we do. I don't

think anyone can understand unless they go through it themselves, and

I surely don't wish that on anyone.

You are one strong lady to babysit your grandchildren in spite of the

challenges it poses.

Sending understanding hugs,

a

On Sep 29, 2005, at 10:29 AM, nonny46 wrote:

> I'll add my 2 cents here--it is sad that we have the double burden of

> having to endure the varying pain and disabilities we have, without

> having to keep quiet and try to act like there's nothing wrong!! I

> got the same story about " why don't you do more things with the

> grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

> know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

> them for a few hours at their house once a week is enough to wear me

> out! I know with kids they just don't want to see their parents as

> ill or needy, but my daughter and SIL understand that my husband is

> not in the best health (he has Parkinsons) but they can't grasp the

> fact that I'm not on top either. I have to try to keep quiet around

> Ron and not complain too much because the stress causes his PD to

> flare, and I still do most of the cleaning, cooking, and yard work.

> The kids don't even offer to help ( " we've got so much to do

> ourselves " ) but there will come a day when I can't do it any more.

>

> We had friends (guess they really weren't friends) who dropped us

> when I couldn't have them over for dinners and late-night visits, and

> one woman at church insists that since SHE has fibro and exercise

> helped her, it should help me. I can't get people to understand that

> Dercum's is NOT fibro, only LIKE it, except that the more I exercise

> the worse it gets. I finally got the therapists to understand that,

> and they ended my PT on my shoulder yesterday; the therapist said

> that is probably as good as it's going to get, given the number of

> tumors in my shoulder and armpit area.

>

> Thanks for giving me the chance to vent where it's not possible for

> me to do it otherwise! Tess, and all the rest of you, you do know

> what it's like, and that's the benefit of this group.

>

> Judi

>

>

>

>

>

[Guest guest]

Judi,

Having such a rare disease makes it much more difficult for you. How

do you explain something that doctors don't even understand?

Why do they even compare Dercum's to Fibro? I think we've all heard

all the reasons we're sick. We eat the wrong foods, we're overweight,

we don't exercise enough, we stress out, we're just lazy, it's all in

our heads, yada yada yada. They may not get it, but we do. I don't

think anyone can understand unless they go through it themselves, and

I surely don't wish that on anyone.

You are one strong lady to babysit your grandchildren in spite of the

challenges it poses.

Sending understanding hugs,

a

On Sep 29, 2005, at 10:29 AM, nonny46 wrote:

> I'll add my 2 cents here--it is sad that we have the double burden of

> having to endure the varying pain and disabilities we have, without

> having to keep quiet and try to act like there's nothing wrong!! I

> got the same story about " why don't you do more things with the

> grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

> know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

> them for a few hours at their house once a week is enough to wear me

> out! I know with kids they just don't want to see their parents as

> ill or needy, but my daughter and SIL understand that my husband is

> not in the best health (he has Parkinsons) but they can't grasp the

> fact that I'm not on top either. I have to try to keep quiet around

> Ron and not complain too much because the stress causes his PD to

> flare, and I still do most of the cleaning, cooking, and yard work.

> The kids don't even offer to help ( " we've got so much to do

> ourselves " ) but there will come a day when I can't do it any more.

>

> We had friends (guess they really weren't friends) who dropped us

> when I couldn't have them over for dinners and late-night visits, and

> one woman at church insists that since SHE has fibro and exercise

> helped her, it should help me. I can't get people to understand that

> Dercum's is NOT fibro, only LIKE it, except that the more I exercise

> the worse it gets. I finally got the therapists to understand that,

> and they ended my PT on my shoulder yesterday; the therapist said

> that is probably as good as it's going to get, given the number of

> tumors in my shoulder and armpit area.

>

> Thanks for giving me the chance to vent where it's not possible for

> me to do it otherwise! Tess, and all the rest of you, you do know

> what it's like, and that's the benefit of this group.

>

> Judi

>

>

>

>

>