Re: They don't get it...-laura

[Guest guest]

hi laura

i totally agree with your post

i was dx just 3 weeks ago and have been seeing a naturopath since that time.

she has indeed put me on a very strict diet but NOT to cure the ra. rather i

think of it as a way of giving my body all the nutrients it needs so it can

fight the disease its way. i am glad that the diet really seems to be helping

me but it is so individual. how dare that lady tell you you could cure yourself

by diet - as you said

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!

we've just gotta work out what works for us individually

take care ok

mel

Re: [ ] They don't get it...

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]

hi laura

i totally agree with your post

i was dx just 3 weeks ago and have been seeing a naturopath since that time.

she has indeed put me on a very strict diet but NOT to cure the ra. rather i

think of it as a way of giving my body all the nutrients it needs so it can

fight the disease its way. i am glad that the diet really seems to be helping

me but it is so individual. how dare that lady tell you you could cure yourself

by diet - as you said

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!

we've just gotta work out what works for us individually

take care ok

mel

Re: [ ] They don't get it...

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