RE: pain of ra

[Guest guest]

Spoon Theory – explaining RA to others

http://www.butyoudontlooksick.com/spoons.htm

The above link may help your family to understand. It’s a

problem many have but I am fortunate to have a very understanding family. God

bless.

From:

Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]

On Behalf Of glokay20022002

Sent: Thursday, September 28, 2006

12:49 PM

To:

Rheumatoid Arthritis

Subject:

pain of ra

i would like to know haw you cope with the pain every

single minute,

and how do you get your family to understand?

[Guest guest]

Glokay wrote:

> i would like to know haw you cope with the pain every single minute,

Ardeith writes: You do it because you have to.....specially if you have

children. There may be nicer ways to say this, but what's your alternative?

Specially if you have children? You've got to do it for them. And even if

you don't have children, you have to do it for yourself. You wouldn't want

to return to the Source with your years all unused, would you? Use them to

create as much beauty in the world as you can......pain or no pain........

Glokay wrote: and how do you get your family to understand?

Ardeith writes: I once suggested to my ex-husband that he put a pebble in

his shoe, right under the ball of his foot.....and walk around on that all

day. Then he would have some idea of what my ankles, knees, wrists and

elbows felt like all the time. The nice thing about it, I told him, is that

he could take the pebble out of his shoe anytime......I didn't have that

sort of choice. Of course, I wasn't feeling too kindly toward him at the

time......but he didn't have to make me feel lower than a slug because I

couldn't lift the laundry basket full of wet clothes, either. Note...he is

now an ex.......

You might suggest that family members try taping popsicle sticks under their

fingers for a day or so....so they can't bend those fingers.....or bind a

finger or two with tape so it can't straighten......then put a pebble in

their shoes..... Or maybe you can remember when one of them had a

toothache? Remind them of it, and tell them that's what your joints feel

like all the time.......anybody in your family ever break a toe? That's a

good reminder.....any broken bone would be......otherwise, I have no idea

how to make people understand what it is like to go through every day with

some part of me hurting.......

Now, if anyone knows how to sit down without sitting on your " sit " bones,

I'd be interested. I have several cushions with a vee cut out of the back

to keep pressure off my tail bone......but I've not yet found any way to sit

comfortably without sitting on those " sit " bones.....that IS why they are

called that, after all.

Ardy

[Guest guest]

On coping with the pain every minute. Effective pain management helps alot. Chronic severe pain has psychological effects and seeing a therapist and getting on an anti depressant might help. Taking a hot shower might help, or ice on a swollen joint. Taking your meds right when you get up and not missing a dose helps also. I take my meds and then drink hot tea and take a hot shower. It tends to speed up the medication in your system. There should be a chapter office of the arthritis foundation in your state. Call them or go to www.arthritisfoundation.org for meeting information and informative pamphlets. Try to remember that humans have a great fear of mortality. Seeing someone they love in pain puts all of you into a state of denial but them most especially. Its almost as if they are in mourning for the healthy you that once existed but is now lost to them. They have a hard time accepting the reality of your condition. No one can know how you feel or what you go through because they are not in your body. Getting them to understand means giving them the clinical evidence first. Have your doctor meet with them. That helps alot. Then try to find a meeting that you can all go to. I hope this helps you. Yours, Deborah

On 10/6/06, Ardeith <ardeith@...> wrote:

Glokay wrote:> i would like to know haw you cope with the pain every single minute,Ardeith writes: You do it because you have to.....specially if you havechildren. There may be nicer ways to say this, but what's your alternative?

Specially if you have children? You've got to do it for them. And even ifyou don't have children, you have to do it for yourself. You wouldn't wantto return to the Source with your years all unused, would you? Use them to

create as much beauty in the world as you can......pain or no pain........Glokay wrote: and how do you get your family to understand?Ardeith writes: I once suggested to my ex-husband that he put a pebble in

his shoe, right under the ball of his foot.....and walk around on that allday. Then he would have some idea of what my ankles, knees, wrists andelbows felt like all the time. The nice thing about it, I told him, is that

he could take the pebble out of his shoe anytime......I didn't have thatsort of choice. Of course, I wasn't feeling too kindly toward him at thetime......but he didn't have to make me feel lower than a slug because I

couldn't lift the laundry basket full of wet clothes, either. Note...he isnow an ex.......You might suggest that family members try taping popsicle sticks under theirfingers for a day or so....so they can't bend those fingers.....or bind a

finger or two with tape so it can't straighten......then put a pebble intheir shoes..... Or maybe you can remember when one of them had atoothache? Remind them of it, and tell them that's what your joints feel

like all the time.......anybody in your family ever break a toe? That's agood reminder.....any broken bone would be......otherwise, I have no ideahow to make people understand what it is like to go through every day with

some part of me hurting.......Now, if anyone knows how to sit down without sitting on your " sit " bones,I'd be interested. I have several cushions with a vee cut out of the backto keep pressure off my tail bone......but I've not yet found any way to sit

comfortably without sitting on those " sit " bones.....that IS why they arecalled that, after all.Ardy

[Guest guest]

That is an amazing story! Its perfect for trying to explain what's

going on. Thank you for sharing it!

>

> Spoon Theory - explaining RA to others

>

> http://www.butyoudontlooksick.com/spoons.htm

>

> The above link may help your family to understand. It's a problem

many have

> but I am fortunate to have a very understanding family. God bless.

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of

glokay20022002

> Sent: Thursday, September 28, 2006 12:49 PM

> Rheumatoid Arthritis

> Subject: pain of ra

>

>

>

> i would like to know haw you cope with the pain every single

minute,

> and how do you get your family to understand?

>

[Guest guest]

Hi I feel for you with your pain and family concerns. I used to have pain all the time but I have been fortunate to manage it with my meds. It doesn't go away, but it helps me deal. I don't exercise as much as I do -- my husband has had to drag me outside. As far as family & friends understanding, I've had great experiences & sad ones. My RA started when I was in college. I had a lot of people that I thought were my friends but when I needed them, they couldn't deal. Ironically, a girl I thought was a snob helped me when my "friends" disappeared. As for my family, my parents deal with problems by ignoring them or making fun of them. I was really angry at them for a long time but I know now that they were upset that they couldn't do anything about it. In the 7 years I have had

RA, my sister has never once asked me how I am. After I was dx'd, my rheumy found that I tested positive for the HLAB-27 genetic mutation, which occurs in some people with arthritis. My mom had my sister tested for the gene, and she also has it. There isn't any proof that having the mutation means you will have arthritis but I think my sister is just scared -- and I don't blame her at all. I hope she doesn't develop RA. Recently, she has been having knee pain & I asked her if her doctor was concerned with her family history, but she told me she hadn't told him that I have RA. She doesn't want her doctor to attribute every pain with arthritis. In terms of romantic relationships, the man I was dating when I developed RA dumped me because he couldn't deal with me being sick. After a few failed attempts at relationships, I met Chad. When we first got to know

each other I was unsure about telling him but it is hard to hide with all of my meds. I knew he was "the one" when I was preparing for a rheumy visit & he asked if he could take me. It turned out he had a few questions to ask my rheumy. I was impressed that he had taken the time to ask questions. After that 1st visit he borrowed 1 of my arthritis books. His family has adjusted to it as well, although it is always a shock when I take out my meds after dinner for the first time. I love the Spoon Theory too ... it has helped Chad and a bunch of my friends understand what it's like to live in my body. Take care, Steph in VA i would like to know haw you cope with the pain every single minute, and how do you get your family to understand? .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Thank you so much for your input. I am 49 years old, and I was

diagnosed at 46. My problem is my grown daughters. They have always

been proud of their mom because I was so energetic and outgoing. I

never left the house without makeup and fixing my hair....the whole

nine yards.I used to be a size 1 until all this...now I am a size 14-

16, I rarely wear makeup and I don't wear all the cute, trendy

clothes now. They don't come around very often now. Oh, I know that

they love me and all, but it seems like they can't comprahend this

horrible disease, and how bad it is. They always just say, " Mom,

there is alot of people out their with arthritis and they are just

fine " . They just don't understand th difference between ra and osteo.

Unfortunely, I have both. My mother died at 57 of congestive heart

failure due to her ra and diabetes and I don't want to die and then

they realize " oh, I guess this was bad.

Thank you to everyone out there for your advice. By the way, My

husband has been wonderful through all this and gives me full

support. He has ask me to just not say anything more about my

illness to the kids. Do you think that that is good advice? Again,

thank you for letting me vent.

God bless you,

Gloria

>

> Hi

> I feel for you with your pain and family concerns. I used to

have pain all the time but I have been fortunate to manage it with

my meds. It doesn't go away, but it helps me deal. I don't exercise

as much as I do -- my husband has had to drag me outside. As far as

family & friends understanding, I've had great experiences & sad

ones. My RA started when I was in college. I had a lot of people

that I thought were my friends but when I needed them, they couldn't

deal. Ironically, a girl I thought was a snob helped me when

my " friends " disappeared.

> As for my family, my parents deal with problems by ignoring

them or making fun of them. I was really angry at them for a long

time but I know now that they were upset that they couldn't do

anything about it. In the 7 years I have had RA, my sister has never

once asked me how I am. After I was dx'd, my rheumy found that I

tested positive for the HLAB-27 genetic mutation, which occurs in

some people with arthritis. My mom had my sister tested for the

gene, and she also has it. There isn't any proof that having the

mutation means you will have arthritis but I think my sister is just

scared -- and I don't blame her at all. I hope she doesn't develop

RA. Recently, she has been having knee pain & I asked her if her

doctor was concerned with her family history, but she told me she

hadn't told him that I have RA. She doesn't want her doctor to

attribute every pain with arthritis.

> In terms of romantic relationships, the man I was dating

when I developed RA dumped me because he couldn't deal with me being

sick. After a few failed attempts at relationships, I met Chad. When

we first got to know each other I was unsure about telling him but

it is hard to hide with all of my meds. I knew he was " the one "

when I was preparing for a rheumy visit & he asked if he could take

me. It turned out he had a few questions to ask my rheumy. I was

impressed that he had taken the time to ask questions. After that

1st visit he borrowed 1 of my arthritis books. His family has

adjusted to it as well, although it is always a shock when I take

out my meds after dinner for the first time.

> I love the Spoon Theory too ... it has helped Chad and a

bunch of my friends understand what it's like to live in my body.

>

> Take care,

> Steph in VA

>

>

>

> i would like to know haw you cope with the pain

every single minute,

> and how do you get your family to understand?

>

>

>

>

>

>

> Recent Activity

>

> 10

> New Members

>

> Visit Your Group

>

[Guest guest]

steph thats a lovely story, im now and when sore with R.A its sore & your sore. and my man doesnt know what its like, well he does but hes never seen me at my worst bless but he knows what to expect bless him.... i wish u all the best with your new man luv janis xxx DeNicola- <stephdenicola@...> wrote: Hi I feel for you with your pain and family concerns. I used to

have pain all the time but I have been fortunate to manage it with my meds. It doesn't go away, but it helps me deal. I don't exercise as much as I do -- my husband has had to drag me outside. As far as family & friends understanding, I've had great experiences & sad ones. My RA started when I was in college. I had a lot of people that I thought were my friends but when I needed them, they couldn't deal. Ironically, a girl I thought was a snob helped me when my "friends" disappeared. As for my family, my parents deal with problems by ignoring them or making fun of them. I was really angry at them for a long time but I know now that they were upset that they couldn't do anything about it. In the 7 years I have had RA, my sister has never once asked me how I am. After I was dx'd, my rheumy found that I tested positive for the HLAB-27 genetic mutation, which occurs in some people with arthritis.

My mom had my sister tested for the gene, and she also has it. There isn't any proof that having the mutation means you will have arthritis but I think my sister is just scared -- and I don't blame her at all. I hope she doesn't develop RA. Recently, she has been having knee pain & I asked her if her doctor was concerned with her family history, but she told me she hadn't told him that I have RA. She doesn't want her doctor to attribute every pain with arthritis. In terms of romantic relationships, the man I was dating when I developed RA dumped me because he couldn't deal with me being sick. After a few failed attempts at relationships, I met Chad. When we first got to know each other I was unsure about telling him but it is hard to hide with all of my meds. I knew he was "the one" when I was preparing for a rheumy visit & he asked if he could take

me. It turned out he had a few questions to ask my rheumy. I was impressed that he had taken the time to ask questions. After that 1st visit he borrowed 1 of my arthritis books. His family has adjusted to it as well, although it is always a shock when I take out my meds after dinner for the first time. I love the Spoon Theory too ... it has helped Chad and a bunch of my friends understand what it's like to live in my body. Take care, Steph in VA i would like to know haw you cope with the pain every single minute, and how do you get your family to understand? . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead) AmeriCorps Alums -- We're Still Getting Things Done How low will we go? Check out Messenger’s low PC-to-Phone call rates. __________________________________________________

[Guest guest]

I’m sorry your daughters don’t

seem to understand RA and don’t seem to be sympathetic. I don’t

think there is any way you can get them to change unless they decide on their

own to learn more about RA. However, I also don’t see any point in

trying to hide your RA from them. When you are hurting and it affects

your interaction with them let they know why you can’t do whatever but

don’t try to explain the disease unless they ask. If they mention

others who have arthritis and are doing well, just say that RA is different

from Osteoarthritis and let it go at that unless they look for more

information. Let them know their ideas are wrong but drop it after

that. At least I think that’s what I’d do if faced with that

problem. I hope they come to understand (without actually getting

RA). God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of glokay20022002

Sent: Saturday, October 07, 2006

3:33 PM

Rheumatoid Arthritis

Subject:

Re: pain of ra

Thank you so much for your input. I am 49 years old, and I was

diagnosed at 46. My problem is my grown daughters. They have always

been proud of their mom because I was so energetic and outgoing. I

never left the house without makeup and fixing my hair....the whole

nine yards.I used to be a size 1 until all this...now I am a size 14-

16, I rarely wear makeup and I don't wear all the cute, trendy

clothes now. They don't come around very often now. Oh, I know that

they love me and all, but it seems like they can't comprahend this

horrible disease, and how bad it is. They always just say, " Mom,

there is alot of people out their with arthritis and they are just

fine " . They just don't understand th difference between ra and osteo.

Unfortunely, I have both. My mother died at 57 of congestive heart

failure due to her ra and diabetes and I don't want to die and then

they realize " oh, I guess this was bad.

Thank you to everyone out there for your advice. By the way, My

husband has been wonderful through all this and gives me full

support. He has ask me to just not say anything more about my

illness to the kids. Do you think that that is good advice? Again,

thank you for letting me vent.

God bless you,

Gloria

_,_._,___

[Guest guest]

Glokay wrote: My husband has been wonderful through all this and gives me

full

> support. He has ask me to just not say anything more about my

> illness to the kids. Do you think that that is good advice?

Ardeith writes: Don't lecture them about it , but if they want you to do

something that you know is going to cause you immediate pain, or put such

stress on joints that you will be in pain for days.....they tell them you

can't do whatever. If they ask why, tell them it will cause you too much

pain, either immediately, or the next few days.

My daughter takes me to the zoo with her children about once a year.....she

rents a go-buggy so I don't have to walk. My best friend occasionally asks

if I want to go into Tampa to the fabric store.....and she'll push me around

in a wheelchair all afternoon if I say yes. Fred charges up my go-buggy

batteries and we go flea-marketing now and then. And I'd love to go

swimming if I could only afford the YMCA fees.....my daughter has a family

membership at the Y in Sarasota, and when I visit her, we go to the pool

every afternoon....heavenly! I even enjoy watching other people dance to

the drums around a big bonfire....even though I can't dance anymore.......

Just because I have limitations, doesn't mean I can't enjoy some

things....it just takes planning......so next time your daughters want you

to do something, consider renting a go-buggy for a day, or even a wheelchair

if one of them will push it......maybe seeing you use such a device will get

through to your daughters that mom has real pain to deal with........

And, " no " is not a four-letter word, dear lady. If you know some activity

is going to put you in a lot of pain, saying " no, " or " no, thank you, " is

perfectly acceptable language. You don't have to feel guilty, either. We

do a big spread for Thanksgiving dinner......and I sit and direct the

setting things up, and the clean up later. Everybody brings a dish to

share, and Fred deals with the huge turkey....

and I refuse to feel guilty about sitting on my butt while others do all the

work. Just staying on my feet long enough to make the gravy is all I can

handle.....but I've tried some of the other cooks' gravy, and I prefer mine.

Just this bitch's opinion, but those " grown up " daughters of yours need to

do some growing up in the empathy department.....

Ardy

[Guest guest]

Its strange but because of having RA, I have a relationship with a man that is based on trust and friendship, not hormones. I guess pain is the great moderator. He wants to spend the rest of his life with me, although I am terribly limited. I told him he is sacrificing his quality of life, financially, socially etc. He said he has been waiting for a woman just like his mother, and since she is 90 and I act 90, he appears happy. I could do the noble thing and find him a more capable partner, but " I " couldnt find a more compassionate partner, so thats that.

On 10/7/06, DeNicola- <stephdenicola@...> wrote:

Hi

I feel for you with your pain and family concerns. I used to have pain all the time but I have been fortunate to manage it with my meds. It doesn't go away, but it helps me deal. I don't exercise as much as I do -- my husband has had to drag me outside. As far as family & friends understanding, I've had great experiences & sad ones. My RA started when I was in college. I had a lot of people that I thought were my friends but when I needed them, they couldn't deal. Ironically, a girl I thought was a snob helped me when my " friends " disappeared.

As for my family, my parents deal with problems by ignoring them or making fun of them. I was really angry at them for a long time but I know now that they were upset that they couldn't do anything about it. In the 7 years I have had RA, my sister has never once asked me how I am. After I was dx'd, my rheumy found that I tested positive for the HLAB-27 genetic mutation, which occurs in some people with arthritis. My mom had my sister tested for the gene, and she also has it. There isn't any proof that having the mutation means you will have arthritis but I think my sister is just scared -- and I don't blame her at all. I hope she doesn't develop RA. Recently, she has been having knee pain & I asked her if her doctor was concerned with her family history, but she told me she hadn't told him that I have RA. She doesn't want her doctor to attribute every pain with arthritis.

In terms of romantic relationships, the man I was dating when I developed RA dumped me because he couldn't deal with me being sick. After a few failed attempts at relationships, I met Chad. When we first got to know each other I was unsure about telling him but it is hard to hide with all of my meds. I knew he was " the one " when I was preparing for a rheumy visit & he asked if he could take me. It turned out he had a few questions to ask my rheumy. I was impressed that he had taken the time to ask questions. After that 1st visit he borrowed 1 of my arthritis books. His family has adjusted to it as well, although it is always a shock when I take out my meds after dinner for the first time.

I love the Spoon Theory too ... it has helped Chad and a bunch of my friends understand what it's like to live in my body.

Take care,

Steph in VA

i would like to know haw you cope with the pain every single minute, and how do you get your family to understand?

..

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

How low will we go? Check out Messenger's low

PC-to-Phone call rates.

[Guest guest]

Thank you so much for the advice. I will put it to use. This site

has been so wonderful and helpful. It would be awesome if we could

all meet some day.

Thanks again,

Gloria

>

> I'm sorry your daughters don't seem to understand RA and don't

seem to be

> sympathetic. I don't think there is any way you can get them to

change

> unless they decide on their own to learn more about RA. However,

I also

> don't see any point in trying to hide your RA from them. When you

are

> hurting and it affects your interaction with them let they know

why you

> can't do whatever but don't try to explain the disease unless they

ask. If

> they mention others who have arthritis and are doing well, just

say that RA

> is different from Osteoarthritis and let it go at that unless they

look for

> more information. Let them know their ideas are wrong but drop it

after

> that. At least I think that's what I'd do if faced with that

problem. I

> hope they come to understand (without actually getting RA). God

bless.

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of

glokay20022002

> Sent: Saturday, October 07, 2006 3:33 PM

> Rheumatoid Arthritis

> Subject: Re: pain of ra

>

>

>

> Thank you so much for your input. I am 49 years old, and I was

> diagnosed at 46. My problem is my grown daughters. They have

always

> been proud of their mom because I was so energetic and outgoing. I

> never left the house without makeup and fixing my hair....the

whole

> nine yards.I used to be a size 1 until all this...now I am a size

14-

> 16, I rarely wear makeup and I don't wear all the cute, trendy

> clothes now. They don't come around very often now. Oh, I know

that

> they love me and all, but it seems like they can't comprahend this

> horrible disease, and how bad it is. They always just say, " Mom,

> there is alot of people out their with arthritis and they are just

> fine " . They just don't understand th difference between ra and

osteo.

> Unfortunely, I have both. My mother died at 57 of congestive heart

> failure due to her ra and diabetes and I don't want to die and

then

> they realize " oh, I guess this was bad.

> Thank you to everyone out there for your advice. By the way, My

> husband has been wonderful through all this and gives me full

> support. He has ask me to just not say anything more about my

> illness to the kids. Do you think that that is good advice? Again,

> thank you for letting me vent.

> God bless you,

> Gloria

>

> _,_._,___

>

[Guest guest]

Hi again Gloria, I am so sorry that your grown daughters have been your problem. They should be more proud of you now with all that you go through than before RA. I honestly thought I had handled challenge before RA but they were cake compared to the insanity that RA can cause in our lives. Regarding clothing I completely understand! Prior to RA I was a dancer (ballet, tap, jazz, etc) and a comfortable size 4 or 6, depending on the brand. At my peak prednisone dosage, I became a size 18 ( & had to buy new socks & underwear). Now I am a size 12, which is a small as I will probably get. An interesting, and sad, story regarding size differences ... a few months

before my wedding, my now-brother-in-law was looking through my photoalbum from college. He wanted to see how many "cute" girls would be coming. He points to a picture from behind of a girl dancing at a club & makes some sexist comment about wanting to meet this girl even without seeing her face. I look at the picture & say "you fool, that's me!" I don't think he believed me until he turned the page and saw me from the front. Also note, my BIL is an incredibly smart man with very little common sense. Anyway, back to the advice from your husband, he may have a point. In the previous email, I talked about my relationship with my parents. My mother doesn't understand why I read every book, article & website on arthritis I can find. My parents don't believe in proactively dealing with my arthritis, & they hate that I

constantly talk to people about my RA. To them it's "telling people my business" but I'm helping myself as much as I am helping others. It may be a good idea to show your daughters the Spoon Theory. When I first started getting serious with Chad I acted it out for him, and he enjoyed it because he got a better understanding of what I deal with. (he has even sent The Spoon Theory to his brother & sister). Also, while you love your daughters & they love you, you do have to remember that you need to take care of yourself. If interacting with them stresses you out like I imagine it does, that can be toxic to your health. Limiting your interaction with them may help your sanity. They may come around. My parents appreciate me more since I left NY (and I send them articles about me). Take care, Steph in VA glokay20022002 <glokay20022002@...> wrote: Thank you to everyone out there for your advice. By the way, My husband has been wonderful through all this and gives me full support. He has ask me to just not say anything more about my illness to the kids. Do you think that that is good advice? Again, thank you for letting me vent.God bless you,Gloria .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Sadly....some of them will never understand.....but I have decided that's THEIR problem..... My brother-n-law even said to me one time..Only Lazy people get RA.....If I didn't love my sister.....I'd have taken a swing at him....lol. Until I developed RA....I did more in a days time than he did in a week. But he's one of those....If HE isn't sick...no one is...(@@). I think my Sister has RA....but because of him...she won't go find out....won't tell her GP the family history..... I talk to my sister...but I don't speak to him except to say hi and bye........NOW they want everyone to feel sorry for him....he's having Liver problems......Drinking straight Jack s for breakfast will do that to ya........I told my sister....HE did that to himself...and wether she wants to believe it or not....he's an alcoholic. I'll always be there for my Sister....

My Mom understood....she had RA also....my Dad is finally understanding......since my Mom died....he spends more time with me and sees my struggles. He came to build me a gate for the deck last week...and I stayed outside with him....handing him this tool or that...and with my fingers bent and frozen....he Saw first hand how hard it was for me to even pick up screws to give him (@@). I'm one of those that If someone is doing something for me.....I stay with em and try to help......I've never liked being dependent on anyone..... So wether it hurts me or not...I hang in and try Then they go home and I hide and cry....I know it's gonna hurt me....just can't help myself (@@).

Don't let those that Don't think your sick, drag you down.......it's just not worth it.Carla

************************************

i would like to know haw you cope with the pain every single minute, and how do you get your family to understand?-- .-.. .-.. ( o )_( o )

__ / '-' '-' \ __ / / " \ \ | \ \___/ / | \ \`-. ____ .-' / / - ' /\ /\ '-.

( (_// (_ _) \\_) ) frogge ºÜº

[Guest guest]

Gloria,

I'm sorry your grown daughter doesn't understand your illness and

isn't able to be supportive. My dad had RA for about 15 years before

he died. I never realized how bad RA was until I had it. Then again,

my dad was the type to say everything was OK. I'd asked him numerous

times if he could do something and how he was feeling and he'd also

say he was fine. My mom did mention times when he had trouble

getting on his shirt or walking. I did know he was going to need

surgery on one elbow. It's interesting my Aunt talked to many people

after he death about my dad's crippling RA. I felt bad she knew so

much more than me.

I feel horrible now that I didn't realize how much pain he must have

been in. I hope I would have done more to help if I had realized.

You mentioned that you are thinking of not mentioning the pain you

are in to your children. For me, it would be hard to never mention

how much difficulty I was having with an illness. I'd probably be

frustrated with my kids if they didn't understand, and I don't know

what to tell you to do. It sounds like your daughter doesn't want to

accept that you are not in perfect health. That is too bad. I'm

guessing by her accepting your pain and limitations she has to

accept you aren't available to help her and do things with her as

you had in the past.

I admit I've just starting feeling comfortable after 4 years with RA

telling others I have RA because I don't think people will get it.

I'm talking about non-family members because my family knows. I've

found I've had to tell some people when they ask me to do something

I " m not sure I can commit to because I don't know if I'll be having

a good or bad week with my RA. For example. I work with the Youth at

church and they've needed people to go on hikes or tent camping with

the kids. Some days I could go on a hike and some days there is NO

WAY I could. And, I can never sleep on the ground if I want to be

able to move without pain the next day.

Good luck! I hope in time your kids can understand and accept your

illness. Have you tried having you husband explain the situation to

them?

Jean

[Guest guest]

Thank you so very much for your input. Since I have joined I am

slowly getting rid of the " I must be crazy syndrome " . My son came to

stay with me this past weekend and he made me feel so much better. I

got up on Sat. morning and him and his wife had cleaned my house.

(Bathtubs, potties and everything I can't seem to do any more.) That

was so good for me. Then, at breakfast he grabbed my hand as did his

wife and asked to bless the food. I cried, because in the past, he

had gotten caught up in the whole drug scene and I rarely let him in

my house. Him and his wife had gone to church and announced that

they had been saved and babtized!!!! PRAISE GOD!! zi am so very

happy for them and it really has replaced the hurt that I have been

having from my daughters and has helped my stressed situation

tremendously. Please keep them in your prayers.

I am going to see my surgeon about my elbow today....so wish me

luck!!!

Again, thanks to everyone in our group. You are all wonderful and I

feel very blessed that I have you to whine to.

God Bless,

Gloria

>

> Gloria,

>

> I'm sorry your grown daughter doesn't understand your illness and

> isn't able to be supportive. My dad had RA for about 15 years

before

> he died. I never realized how bad RA was until I had it. Then

again,

> my dad was the type to say everything was OK. I'd asked him

numerous

> times if he could do something and how he was feeling and he'd

also

> say he was fine. My mom did mention times when he had trouble

> getting on his shirt or walking. I did know he was going to need

> surgery on one elbow. It's interesting my Aunt talked to many

people

> after he death about my dad's crippling RA. I felt bad she knew so

> much more than me.

>

> I feel horrible now that I didn't realize how much pain he must

have

> been in. I hope I would have done more to help if I had realized.

>

> You mentioned that you are thinking of not mentioning the pain you

> are in to your children. For me, it would be hard to never mention

> how much difficulty I was having with an illness. I'd probably be

> frustrated with my kids if they didn't understand, and I don't

know

> what to tell you to do. It sounds like your daughter doesn't want

to

> accept that you are not in perfect health. That is too bad. I'm

> guessing by her accepting your pain and limitations she has to

> accept you aren't available to help her and do things with her as

> you had in the past.

>

> I admit I've just starting feeling comfortable after 4 years with

RA

> telling others I have RA because I don't think people will get it.

> I'm talking about non-family members because my family knows. I've

> found I've had to tell some people when they ask me to do

something

> I " m not sure I can commit to because I don't know if I'll be

having

> a good or bad week with my RA. For example. I work with the Youth

at

> church and they've needed people to go on hikes or tent camping

with

> the kids. Some days I could go on a hike and some days there is NO

> WAY I could. And, I can never sleep on the ground if I want to be

> able to move without pain the next day.

>

> Good luck! I hope in time your kids can understand and accept your

> illness. Have you tried having you husband explain the situation

to

> them?

>

> Jean

>

[Guest guest]

<<< had gotten caught up in the whole drug scene and I rarely let him in

my house>>>

Gloria

Cry me crying right along side you when I read this. I also have a son

who at one time who was like this so I truly know how joyful you must

feel about this transformation. He has left the illegal drugs behind

but still drinks the legal one and I pray daily that he will wake up and

realize that it is affecting all of us. I am so proud of your son and

please tell him that there is another mama out here in cyberspace that

is praying for him too. You did nothing to cause him to go down that

path, but you can take credit for him choosing to leave it. Super giant

mega hugs to you hon.

--

Ila in Maine mailto:sewcraftyila@...

Owner:JEFLOVERS/

MOD:sewmurkot/

http://www.ChippewaCabinDesigns.com

" If you want to sacrifice the admiration of many men for the criticism

of one, go ahead, get married. "

Katharine Hepburn

[Guest guest]

Ila,

Thank you so very much for your prayers. I will also pray for your

son. Your message really brightened my day. I just returned from my

hand surgeon and I am looking at 2 more surgeries on my elbow. One,

to move my ulnar nerve because I have ulnar neuropathy and toh

second to remove inflamation and bone spurs. They are calling

tomorrow with my surgery schedule, so I will know by then.

Love to you all!!!

God Bless each and every one of you,

Gloria

>

> <<< had gotten caught up in the whole drug scene and I rarely let

him in

> my house>>>

>

> Gloria

>

> Cry me crying right along side you when I read this. I also have

a son

> who at one time who was like this so I truly know how joyful you

must

> feel about this transformation. He has left the illegal drugs

behind

> but still drinks the legal one and I pray daily that he will wake

up and

> realize that it is affecting all of us. I am so proud of your son

and

> please tell him that there is another mama out here in cyberspace

that

> is praying for him too. You did nothing to cause him to go down

that

> path, but you can take credit for him choosing to leave it. Super

giant

> mega hugs to you hon.

>

> --

> Ila in Maine mailto:sewcraftyila@...

> Owner:JEFLOVERS/

> MOD:sewmurkot/

> http://www.ChippewaCabinDesigns.com

>

> " If you want to sacrifice the admiration of many men for the

criticism

> of one, go ahead, get married. "

> Katharine Hepburn

>

[Guest guest]

You know there are times when I think maybe I will unsubcribe to this support group until I get messages like this one and the one from steph. When I have my wrist supports on and people ask me what happen or do I have carpel tunnel ect.. and I say no I have RA of course the first question is " what is Ra" and when I say rheumatoid arthritis there is always the " oh my (so and so ) has that in her knee or wherever and the go on discribing it. Then I realize they mean OA or degenerate. Sometime I explain the difference but most times people really dont seem to want to know the difference. Its is so frustrating that people dont know the difference of all of the arthritis out there. With steph talking about her husband has to drag her outside. I had some neighbors that my son with play with their kids and the dad would come down and talk to me sometimes and he would ask how I was feeling and I'd always say I'm managing. He would always

say well good maybe we will see you outside more often. I got so sick and tired of hearing that. I dont go out and do yard work. If I'm outside its usually to sit on the porch but not for long. Being in the sun gives me horrible rashes on my arms. They have since moved but then I still wonder what my other neighbors think. I used to not care until resently I dont know what changed but it does bother me now. I told my husband I am ready to move out of a subdivision and move to the country somewhere with lots and lots of trees for shade and NO neighbors. I truly enjoyed ( well not enjoyed) you know what I mean. Hearing both of your stories. I also have never really had depression before and I've lived with this disease for over 10 yrs. but lately I havent been doing to great in that area. As for my kids. It is really really hard for

them to understand but they are only 6 and 12. But I will hear them complaining that something hurts to get out of doing things and it aggravated the tar out of me. They have been to the doctors with me and I have explained things to them but I guess its hard to truly understand unless you live it. I hope to god neither of them have to. Thanks for reading my novel. Author...... LOL in michigan glokay20022002 <glokay20022002@...> wrote: Thank you so much for your input. I am 49 years old, and I was diagnosed at 46. My problem is my grown daughters. They have always been proud of their mom because I was so energetic and outgoing. I never left the house without makeup and fixing my hair....the whole nine yards.I used to be a size 1 until all this...now I am a size 14-16, I rarely wear makeup and I don't wear all the cute, trendy clothes now. They don't come around very often now. Oh, I know that they love me and all, but it seems like they can't comprahend this horrible disease, and how bad it is. They always just say, "Mom, there is alot of people out their with arthritis and they are just fine". They just don't understand th difference between ra and osteo.Unfortunely, I have both. My mother died at 57 of congestive heart failure due

to her ra and diabetes and I don't want to die and then they realize " oh, I guess this was bad. Thank you to everyone out there for your advice. By the way, My husband has been wonderful through all this and gives me full support. He has ask me to just not say anything more about my illness to the kids. Do you think that that is good advice? Again, thank you for letting me vent.God bless you,Gloria>> Hi > I feel for you with your pain and family concerns. I used to have pain all the time but I have been fortunate to manage it with my meds. It doesn't go away, but it helps me deal. I don't exercise as much as I do -- my husband has had to drag me outside. As far as family & friends understanding, I've had great

experiences & sad ones. My RA started when I was in college. I had a lot of people that I thought were my friends but when I needed them, they couldn't deal. Ironically, a girl I thought was a snob helped me when my "friends" disappeared. > As for my family, my parents deal with problems by ignoring them or making fun of them. I was really angry at them for a long time but I know now that they were upset that they couldn't do anything about it. In the 7 years I have had RA, my sister has never once asked me how I am. After I was dx'd, my rheumy found that I tested positive for the HLAB-27 genetic mutation, which occurs in some people with arthritis. My mom had my sister tested for the gene, and she also has it. There isn't any proof that having the mutation means you will have arthritis but I think my sister is just scared -- and I don't blame her at all. I hope she doesn't develop RA. Recently, she has

been having knee pain & I asked her if her doctor was concerned with her family history, but she told me she hadn't told him that I have RA. She doesn't want her doctor to attribute every pain with arthritis.> In terms of romantic relationships, the man I was dating when I developed RA dumped me because he couldn't deal with me being sick. After a few failed attempts at relationships, I met Chad. When we first got to know each other I was unsure about telling him but it is hard to hide with all of my meds. I knew he was "the one" when I was preparing for a rheumy visit & he asked if he could take me. It turned out he had a few questions to ask my rheumy. I was impressed that he had taken the time to ask questions. After that 1st visit he borrowed 1 of my arthritis books. His family has adjusted to it as well, although it is always a shock when I take out my meds after dinner for the first time.> I

love the Spoon Theory too ... it has helped Chad and a bunch of my friends understand what it's like to live in my body.> > Take care,> Steph in VA > > > > i would like to know haw you cope with the pain every single minute, > and how do you get your family to understand?> > > > > > > Recent Activity> > 10> New Members> > Visit Your Group >

[Guest guest]

,

Please don't ever leave the group. You have some good advice and

stories that we can all sympathize with. Hang in there sweetie and

even though I don't know you I care for everyone in this group.

Keep your chin up,

Gloria

> >

> > Hi

> > I feel for you with your pain and family concerns. I used to

> have pain all the time but I have been fortunate to manage it with

> my meds. It doesn't go away, but it helps me deal. I don't

exercise

> as much as I do -- my husband has had to drag me outside. As far

as

> family & friends understanding, I've had great experiences & sad

> ones. My RA started when I was in college. I had a lot of people

> that I thought were my friends but when I needed them, they

couldn't

> deal. Ironically, a girl I thought was a snob helped me when

> my " friends " disappeared.

> > As for my family, my parents deal with problems by ignoring

> them or making fun of them. I was really angry at them for a long

> time but I know now that they were upset that they couldn't do

> anything about it. In the 7 years I have had RA, my sister has

never

> once asked me how I am. After I was dx'd, my rheumy found that I

> tested positive for the HLAB-27 genetic mutation, which occurs in

> some people with arthritis. My mom had my sister tested for the

> gene, and she also has it. There isn't any proof that having the

> mutation means you will have arthritis but I think my sister is

just

> scared -- and I don't blame her at all. I hope she doesn't develop

> RA. Recently, she has been having knee pain & I asked her if her

> doctor was concerned with her family history, but she told me she

> hadn't told him that I have RA. She doesn't want her doctor to

> attribute every pain with arthritis.

> > In terms of romantic relationships, the man I was dating

> when I developed RA dumped me because he couldn't deal with me

being

> sick. After a few failed attempts at relationships, I met Chad.

When

> we first got to know each other I was unsure about telling him but

> it is hard to hide with all of my meds. I knew he was " the one "

> when I was preparing for a rheumy visit & he asked if he could

take

> me. It turned out he had a few questions to ask my rheumy. I was

> impressed that he had taken the time to ask questions. After that

> 1st visit he borrowed 1 of my arthritis books. His family has

> adjusted to it as well, although it is always a shock when I take

> out my meds after dinner for the first time.

> > I love the Spoon Theory too ... it has helped Chad and a

> bunch of my friends understand what it's like to live in my body.

> >

> > Take care,

> > Steph in VA

> >

> >

> >

> > i would like to know haw you cope with the pain

> every single minute,

> > and how do you get your family to understand?

> >

> >

> >

> >

> >

> >

> > Recent Activity

> >

> > 10

> > New Members

> >

> > Visit Your Group

> >

[Guest guest]

Gloria, Thanks! I am definatly not leaving now. This is the kind of stuff I was hoping to hear from this group and we dont really hear that many stories about how other people deal with things and what they go through. We get alot of medical advice and alot of talk about meds that I dont take and I was feeling like maybe this wasnt the group for me but I've changed my mind. I guess I should be glad that I dont hear those strories because they are often sad but they help me. Maybe it was part of the depression I've been feeling talking and not really me. Thanks for the nice email and I'm sticking around some more I LOVE THIS GROUP Your friend in michigan glokay20022002

<glokay20022002@...> wrote: ,Please don't ever leave the group. You have some good advice and stories that we can all sympathize with. Hang in there sweetie and even though I don't know you I care for everyone in this group. Keep your chin up,Gloria> >> > Hi > > I feel for you with your pain and family concerns. I used to > have pain all the time but I have been fortunate to manage it with > my meds. It doesn't go away, but it helps me deal. I don't exercise > as much as I do -- my husband has had to drag me outside. As far as > family & friends understanding, I've had great experiences & sad > ones. My RA started when I was in college. I had a lot of people > that I thought were my friends but when I needed them, they couldn't > deal. Ironically, a girl I thought was a snob helped me when > my "friends" disappeared. > > As for my family, my parents deal with problems by ignoring > them or making fun of them. I was really angry at them for a long > time but I know now that they were upset that they couldn't do > anything

about it. In the 7 years I have had RA, my sister has never > once asked me how I am. After I was dx'd, my rheumy found that I > tested positive for the HLAB-27 genetic mutation, which occurs in > some people with arthritis. My mom had my sister tested for the > gene, and she also has it. There isn't any proof that having the > mutation means you will have arthritis but I think my sister is just > scared -- and I don't blame her at all. I hope she doesn't develop > RA. Recently, she has been having knee pain & I asked her if her > doctor was concerned with her family history, but she told me she > hadn't told him that I have RA. She doesn't want her doctor to > attribute every pain with arthritis.> > In terms of romantic relationships, the man I was dating > when I developed RA dumped me because he couldn't deal with me being > sick. After a few failed attempts at

relationships, I met Chad. When > we first got to know each other I was unsure about telling him but > it is hard to hide with all of my meds. I knew he was "the one" > when I was preparing for a rheumy visit & he asked if he could take > me. It turned out he had a few questions to ask my rheumy. I was > impressed that he had taken the time to ask questions. After that > 1st visit he borrowed 1 of my arthritis books. His family has > adjusted to it as well, although it is always a shock when I take > out my meds after dinner for the first time.> > I love the Spoon Theory too ... it has helped Chad and a > bunch of my friends understand what it's like to live in my body.> > > > Take care,> > Steph in VA > > > > > > > > i would like to know haw you cope with the pain > every single minute, > > and how

do you get your family to understand?> > > > > > > > > > > > > > Recent Activity> > > > 10> > New Members> > > > Visit Your Group > >

[Guest guest]

, I agree with Gloria, please don't leave the group. Even though I have not written before I have read a lot of messages and they have helped me.It is 4am in the UK and I cannot sleep because of the pain. I have had RA for 16 years and until now haven't really suffered much apart from a knee replacement in 2000. Now at the age of 55 I  am beginning to realise just what RA can be like.I would like to hear from anyone in the UK.Thank you all.Annette  On 9 Oct 2006, at 21:14, glokay20022002 wrote:,Please don't ever leave the group. You have some good advice and stories that we can all sympathize with. Hang in there sweetie and even though I don't know you I care for everyone in this group. Keep your chin up,Gloria> >> > Hi > > I feel for you with your pain and family concerns. I used to > have pain all the time but I have been fortunate to manage it with > my meds. It doesn't go away, but it helps me deal. I don't exercise > as much as I do -- my husband has had to drag me outside. As far as > family & friends understanding, I've had great experiences & sad > ones. My RA started when I was in college. I had a lot of people > that I thought were my friends but when I needed them, they couldn't > deal. Ironically, a girl I thought was a snob helped me when > my "friends" disappeared. > > As for my family, my parents deal with problems by ignoring > them or making fun of them. I was really angry at them for a long > time but I know now that they were upset that they couldn't do > anything about it. In the 7 years I have had RA, my sister has never > once asked me how I am. After I was dx'd, my rheumy found that I > tested positive for the HLAB-27 genetic mutation, which occurs in > some people with arthritis. My mom had my sister tested for the > gene, and she also has it. There isn't any proof that having the > mutation means you will have arthritis but I think my sister is just > scared -- and I don't blame her at all. I hope she doesn't develop > RA. Recently, she has been having knee pain & I asked her if her > doctor was concerned with her family history, but she told me she > hadn't told him that I have RA. She doesn't want her doctor to > attribute every pain with arthritis.> > In terms of romantic relationships, the man I was dating > when I developed RA dumped me because he couldn't deal with me being > sick. After a few failed attempts at relationships, I met Chad. When > we first got to know each other I was unsure about telling him but > it is hard to hide with all of my meds. I knew he was "the one" > when I was preparing for a rheumy visit & he asked if he could take > me. It turned out he had a few questions to ask my rheumy. I was > impressed that he had taken the time to ask questions. After that > 1st visit he borrowed 1 of my arthritis books. His family has > adjusted to it as well, although it is always a shock when I take > out my meds after dinner for the first time.> > I love the Spoon Theory too ... it has helped Chad and a > bunch of my friends understand what it's like to live in my body.> > > > Take care,> > Steph in VA > > > > > > > > i would like to know haw you cope with the pain > every single minute, > > and how do you get your family to understand?> > > > > > > > > > > > > > Recent Activity> > > > 10> > New Members> > > > Visit Your Group > >

[Guest guest]

Hi Annette

I am Helen and I live in the uK. I have RA and was diagnosed 2 years ago. I am on Enbrel, MXT and prednisolone. I am still working but find the pain and fatigue make my job harder. However I want to keep working because I need that reason to get up in the morning - if you know what I mean!Helen

[Guest guest]

Thanks Annette I'm sticking around Annette Hamlin <aah@...> wrote: , I agree with Gloria, please don't leave the group. Even though I have not written before I have read a lot of messages and they have helped me. It is 4am in the UK and I cannot sleep

because of the pain. I have had RA for 16 years and until now haven't really suffered much apart from a knee replacement in 2000. Now at the age of 55 I am beginning to realise just what RA can be like. I would like to hear from anyone in the UK. Thank you all. Annette On 9 Oct 2006, at 21:14, glokay20022002 wrote: ,Please don't ever leave the group. You have some good advice and stories that we can all sympathize with. Hang in there sweetie and even though I don't know you I care for everyone in this group. Keep your chin up,Gloria> >> > Hi > > I feel for you with your pain and family concerns. I used to > have pain all the time but I have been fortunate to manage it with > my meds. It doesn't go away, but it helps me deal. I don't exercise > as much as I do -- my husband has had to drag me outside. As far as > family & friends understanding, I've had great experiences & sad

> ones. My RA started when I was in college. I had a lot of people > that I thought were my friends but when I needed them, they couldn't > deal. Ironically, a girl I thought was a snob helped me when > my "friends" disappeared. > > As for my family, my parents deal with problems by ignoring > them or making fun of them. I was really angry at them for a long > time but I know now that they were upset that they couldn't do > anything about it. In the 7 years I have had RA, my sister has never > once asked me how I am. After I was dx'd, my rheumy found that I > tested positive for the HLAB-27 genetic mutation, which occurs in > some people with arthritis. My mom had my sister tested for the > gene, and she also has it. There isn't any proof that having the > mutation means you will have arthritis but I think my sister is just > scared -- and I don't blame her at all. I hope she doesn't develop > RA. Recently, she has been having knee pain & I asked her if her > doctor was concerned with her family history, but she told me she > hadn't told him that I have RA. She doesn't want her doctor to > attribute every pain with arthritis.> > In terms of romantic relationships, the man I was dating > when I developed RA dumped me because he couldn't deal with me being > sick. After a few failed attempts at relationships, I met Chad. When > we first got to know each other I was unsure about telling him but > it is hard to hide with all of my meds. I knew he was "the one" > when I was preparing for a rheumy visit & he asked if he could take > me. It turned out he had a few questions to ask my rheumy. I was > impressed that he had taken the time to ask questions. After that > 1st visit he borrowed 1 of my arthritis books. His family has > adjusted to it as well, although it is always a shock when I take > out my meds after dinner for the first time.> > I love the Spoon Theory too ... it has helped Chad and a > bunch of my friends understand what it's like to live in my body.> > > > Take care,> > Steph in VA > > > > >

> > > i would like to know haw you cope with the pain > every single minute, > > and how do you get your family to understand?> > > > > > > > > > > > > > Recent Activity> > > > 10> > New Members> > > > Visit Your Group > >

[Guest guest]

Hello HelenIt was nice to hear from you and I know what you mean. Since I had to give up my job in dentistry I feel quite cut off from people. We live near the border with Wales and it is very quiet here.I was taking prednisolone but now rely on mxt and plaqunil. I have recently been prescribed leflunomide but am reluctant to take it as the Pil says not to take with mxt and plaqunil! I am now trying to get another appt with my Rhuematologist.AnnetteOn 11 Oct 2006, at 21:46, HelenLW7@... wrote:Hi AnnetteI am Helen and I live in the uK. I have RA and was diagnosed 2 years ago. I am on Enbrel, MXT and prednisolone. I am still working but find the pain and fatigue make my job harder. However I want to keep working because I need that reason to get up in the morning - if you know what I mean!Helen