Re: coping with RA- Marina

[Guest guest]

Marina:

What you said really hit home with me. I have been off work sick

since January with an RA flare up throughout my entire body.

Everywhere I have a joint, I have pain. I have good days and not so

good days. There are times I can't get out of bed, and there are

times where I feel well enough to leave my house and get a few

things done.

I have spoken with most of my friends and co-workers about how I

have been feeling. I explained that the Methotrexate that I take on

Friday puts me out of commission until Tuesday. I usually spend 3

days in bed recovering from it. I have zero energy. It takes all I

have to get up and shower or use the washroom. Please tell me why

people would drop by for a visit after hearing me tell this to them

repeatedly??? I know that many people work Monday to Friday and

they use the weekend as a time to socialize or visit friends - but

isn't this rude and selfish? Or is it just me? I am at the point

where I can't sugar-coat it anymore. I am going to have to be blunt

with people, and I don't know if they can handle it.

If I hear " You don't look sick " one more time from a friend or

family member, I am going to scream!!! There is an actual

butyoudontlooksick.com website that I've visited and read the story

of how to explain the energy level to others.

Do you think this is selfishness on others behalf, or do you think

that they're in denial about us not being able to function at the

same level we used to?

> > And it's not as though osteoarthritis is a picnic in the park,

> either.

> > My aunt has it and has had two knee replacements (on the same

> knee) and

> > still has to use a walker. I have a friend who has it and has

had

> hip

> > replacements. I have also seen some fingers that look pretty bad

> from

> > osteoarthritis; just not deformed in the same way that RA does

> it. Sue

> >

> >

[Guest guest]

Marina:

What you said really hit home with me. I have been off work sick

since January with an RA flare up throughout my entire body.

Everywhere I have a joint, I have pain. I have good days and not so

good days. There are times I can't get out of bed, and there are

times where I feel well enough to leave my house and get a few

things done.

I have spoken with most of my friends and co-workers about how I

have been feeling. I explained that the Methotrexate that I take on

Friday puts me out of commission until Tuesday. I usually spend 3

days in bed recovering from it. I have zero energy. It takes all I

have to get up and shower or use the washroom. Please tell me why

people would drop by for a visit after hearing me tell this to them

repeatedly??? I know that many people work Monday to Friday and

they use the weekend as a time to socialize or visit friends - but

isn't this rude and selfish? Or is it just me? I am at the point

where I can't sugar-coat it anymore. I am going to have to be blunt

with people, and I don't know if they can handle it.

If I hear " You don't look sick " one more time from a friend or

family member, I am going to scream!!! There is an actual

butyoudontlooksick.com website that I've visited and read the story

of how to explain the energy level to others.

Do you think this is selfishness on others behalf, or do you think

that they're in denial about us not being able to function at the

same level we used to?

> > And it's not as though osteoarthritis is a picnic in the park,

> either.

> > My aunt has it and has had two knee replacements (on the same

> knee) and

> > still has to use a walker. I have a friend who has it and has

had

> hip

> > replacements. I have also seen some fingers that look pretty bad

> from

> > osteoarthritis; just not deformed in the same way that RA does

> it. Sue

> >

> >

[Guest guest]

, I honostly don't know. I think that there may be a part of

them that is in denial. The hardest to take was my families

reaction, well, actually I think it was their LACK of reaction. It

was is I told them I had a cold. They just didn't get it, and my

sister is a nurse!! In some ways I wonder if it because they don't

WANT to get it. Denial is a tough cookie to break.

I have a good friend who has liver cancer. Her and I talk about

everything. It just killed hearing about her diagnosis, but I did

everything in my power to be there for her. She was given only 6

months to live, and that was 4 years ago. Inspite of all her

problems, she is still there for me. She said that I have always

been there for her and she wants to do the same. We can talk to

each other about everything.

I feel blessed to have a friend like her. We have always been there

for each other. She wanted to learn about what I have so she could

understand what I am going through.

My co-workers choose not to understand. " It's just arthritis. I

have that too " . Oh how angry I get when I hear that. " I'm tired

too. Just work through it. " To explain the difference between

tired and fatigue was difficult. No one understood that they were

not one in the same. I finally said that when you are tired, you

just get through the day, go home, put your feet up, take a nap and

you feel better. With fatigue you can't get through the day, you

can't get home to put your feet up because you want to drop dead

right where you are barely standing.

Then there is the methotrexate. I am the same way as you. I am out

of comission util Tuesday because of the way it make me feel and it

makes me sick. I can't eat for several days. I don't know if I go

through spells of depression because of having to " put on the happy

face " because people don't get it, or because I know what's

happening and I know it's not going to go away. I come out of those

bout's but, when I am in one, all I do is cry.

As for the popping you hear with your joints. Oh, yeah. I do that

too. I have never been able to really pop my joints much, but since

all this I can pop my neck, sternum, shoulders, ect...If it's a

joint, it pops!!

Like you, I was at a point in my life where I actually felt great.

Felt healthy. Then this hit me like a ton of bricks. I tried to

ignore the pain, I didn't want it to be anything, I just enied what

I was feeling, but then it got to a point where I couldn't ignore it

anymore. I waited nearly 6 months before finding out what was

happening. Boy, did that ever piss me off. I still get angry at it

and myself. No one in my family has this. I keep telling my sister

she needs to stop smoking because she is now at a greater risk for

developing RA, even more since she smokes.

So, know that you are not alone. What you are feeling is normal.

This site is a great place to learn what is normal and what isn't.

I have learned more here than any other place. There is something

about learning what others are going through that makes it more

liveable. I think it's partly because it prepares me for what is to

come and partly because I know that I am not alone in this.

I hope this helps you some. Please feel free to email me if you

need to talk, or add me to your IM so you catch me online so we can

talk. Take care.......Marina

[Guest guest]

, I honostly don't know. I think that there may be a part of

them that is in denial. The hardest to take was my families

reaction, well, actually I think it was their LACK of reaction. It

was is I told them I had a cold. They just didn't get it, and my

sister is a nurse!! In some ways I wonder if it because they don't

WANT to get it. Denial is a tough cookie to break.

I have a good friend who has liver cancer. Her and I talk about

everything. It just killed hearing about her diagnosis, but I did

everything in my power to be there for her. She was given only 6

months to live, and that was 4 years ago. Inspite of all her

problems, she is still there for me. She said that I have always

been there for her and she wants to do the same. We can talk to

each other about everything.

I feel blessed to have a friend like her. We have always been there

for each other. She wanted to learn about what I have so she could

understand what I am going through.

My co-workers choose not to understand. " It's just arthritis. I

have that too " . Oh how angry I get when I hear that. " I'm tired

too. Just work through it. " To explain the difference between

tired and fatigue was difficult. No one understood that they were

not one in the same. I finally said that when you are tired, you

just get through the day, go home, put your feet up, take a nap and

you feel better. With fatigue you can't get through the day, you

can't get home to put your feet up because you want to drop dead

right where you are barely standing.

Then there is the methotrexate. I am the same way as you. I am out

of comission util Tuesday because of the way it make me feel and it

makes me sick. I can't eat for several days. I don't know if I go

through spells of depression because of having to " put on the happy

face " because people don't get it, or because I know what's

happening and I know it's not going to go away. I come out of those

bout's but, when I am in one, all I do is cry.

As for the popping you hear with your joints. Oh, yeah. I do that

too. I have never been able to really pop my joints much, but since

all this I can pop my neck, sternum, shoulders, ect...If it's a

joint, it pops!!

Like you, I was at a point in my life where I actually felt great.

Felt healthy. Then this hit me like a ton of bricks. I tried to

ignore the pain, I didn't want it to be anything, I just enied what

I was feeling, but then it got to a point where I couldn't ignore it

anymore. I waited nearly 6 months before finding out what was

happening. Boy, did that ever piss me off. I still get angry at it

and myself. No one in my family has this. I keep telling my sister

she needs to stop smoking because she is now at a greater risk for

developing RA, even more since she smokes.

So, know that you are not alone. What you are feeling is normal.

This site is a great place to learn what is normal and what isn't.

I have learned more here than any other place. There is something

about learning what others are going through that makes it more

liveable. I think it's partly because it prepares me for what is to

come and partly because I know that I am not alone in this.

I hope this helps you some. Please feel free to email me if you

need to talk, or add me to your IM so you catch me online so we can

talk. Take care.......Marina