Re: Letter to family - Long

[Guest guest]

Here is the Family Letter that I have, I have saved in my word

documents for future reference or reminder. I received it from one

of the websites on RA:

Subject: What RA is Like: A Letter for Family and Friends

It is possible to walk to the park one day and be unable to do so

another day. The reverse is also true. Some days just moving around

the house is hard enough.

Some days I need splints, a cane, ACE wraps, or even a wheelchair.

Other days I don't. Just because I don't always need those helps,

doesn't mean I'm faking it.

My pain can travel from joint to joint from day to day or in fact,

hour to hour.

I sometimes need a handicapped spot. I don't like it. But, I need

it. I may look healthy enough that I don't need it but walking out

of the store, I will likely be having problems walking.

The medicines I take may have nasty side effects. I know this. I

don't need reminders of this from someone who doesn't live in my body

and feel my pain. I don't enjoy taking the medications but I have a

disease that needs to be medicated.

Don't lecture me about the addictive nature of pain medications. I

know the risks. And don't judge me for using pain medications. It

doesn't mean I am weak. It means I have pain. If it is a choice

between pain medicines allowing me to live a more normal life and not

taking them out of fear, I choose having a more normal life.

Standing, sitting, walking, and laying can all be painful. Life is

unfortunately painful. I have pain, swelling, limited energy, joints

that don't move right and other symptoms. Sometimes, I'm grumpy

because of this. I try not to be but sometimes it comes out despite

my attempts to be happy and nice. In addition to the pain and other

symptoms, I may be feverish, feel tired, or even have joints that

don't look " normal " . This is all due to RA.

Please don't suggest " cures " . RA has no cure (at least now). So, I

have it, it is ncurable. Live with it.I do. I trust my doctor and

the treatment plan we've worked out between us, so please don't try

to convince me you know a person who " cured " themselves with diet,

supplements etc. It may have helped them or it may not have. It

could just be the cyclical nature of RA that fools them into thinking

they've been " cured " .

If you've ever broken a bone, think of that pain and magnify it.

Then imagine all over your body. That's how I feel at times.

When I travel with you, please understand that for my health, I may

need to have frequent stretch breaks. I'm not doing it to slow our

trip down. I don't take joy in having a hard time getting moving

after sitting for awhile. Don't hassle me over it.

Don't assume when you hear the word " arthritis " that I mean

osteoarthritis, which is what most people think of when hearing

arthritis. Most people associate the word with the wear and tear

arthritis of aging. I may have OA as well which is that very type.

But, I have rheumatoid arthritis, which is an auto-immune disease

that causes my body to attack itself. I'm not too young for either.

Infants get RA as well as adults. Unfortunately, OA is not just a

disease on its own; it can come as a secondary disease to RA. So, I'm

not too young for arthritis, please don't tell me I am. And if you

still think I am, well, my body and doctors say different so I'm

going to listen to them, not you.

I may need to rest more often than most people. It's not that I'm

lazy. It's that RA causes fatigue. And that fatigue can come and go

or be persistent. Imagine having the flu all of the time.

I may not have " just " RA. There are many other diseases that can go

along with it. Those diseases also take their toll on me with

symptoms, medications and problems.

I don't enjoy turning down certain activities due to my RA. I may

not always turn that down; it is just that particular time may be a

bad time for me. Don't assume I'll always turn things down and stop

asking me. That makes me feel so left out. But also if I do say

no, don't try to make me feel guilty. And if I say yes, but have to

change my mind later, please don't be angry. I don't like doing that

but sometimes despite my best planning; I just can't make my body

cooperate.

There are things I can do that I also enjoy doing that may look like

a struggle to you. Please don't try to " protect " me by taking things

from me or stopping me from doing something. If I'm doing something

and not asking for help, it is because I am ok doing that. I'll

likely ask for help if I need it. But also know that I may be too

proud or stubborn to ask for help too. If you wish to help, don't

just take over. Ask if you can help. If I say yes, ask what the

best way to help me will be. If I say no please don't

be offended, it is likely something that I may struggle with but

gives me pleasure to do. (This doesn't apply to spouses and friends

who have known you for long enough to have worked out non-verbal

clues of needing help.)

Just because I look healthy, doesn't mean I am. RA is in many ways

an invisible illness. Normally, it takes many years for the effects

of RA to be seen visually. Even those who have had RA for many years

may look healthy.

Please do not think it is funny to force me to shake hands and then

use a crushing grip. It's not funny and it's quite painful to be

honest. Also please don't assume because I don't shake hands that

I'm a snob or anything other assumption. It's just quite painful,

even if my hands look normal.

Please keep in mind that as frustrating as it is for you to deal with

my RA, it is more so for me. RA typically means some losses for me,

whether it is activities I enjoy, my job, my ability to do some of

the things I found simple before. To me it may seem like I've lost

my identity. Typically, people with chronic diseases, especially the

newly diagnosed, go through the five stages of grief. Even those who

have had RA a long time may go through the stages many times after

their initial acceptance of RA.

Do not assume I'm " just depressed " . Depression does go hand in hand

with chronic diseases whether due to the unrelenting pain or stress

or any other number of reasons. I don't need to " get out more " and

expect it to make me always feel better. Sometimes that itself can

lead to depression if I am facing that I can't do as much when I go

out.

Also please don't try to convince me that changing my diet

will " cure " me. Recall that I said RA is incurable. Changing my diet

may help with symptoms but it doesn't help everyone.

Also, I don't need to be told I need more exercise. I'd like to be

able to exercise more but may not be able to. That is frustrating

enough. I don't need to hear from others that I'm not doing enough.

[Guest guest]

Amen!!

Ebony

>

> Subject: What RA is Like: A Letter for Family and Friends

>

> It is possible to walk to the park one day and be unable to do so

> another day. The reverse is also true. Some days just moving

around

> the house is hard enough.

>

> Some days I need splints, a cane, ACE wraps, or even a wheelchair.

> Other days I don't. Just because I don't always need those helps,

> doesn't mean I'm faking it.

>

> My pain can travel from joint to joint from day to day or in fact,

> hour to hour.

>

> I sometimes need a handicapped spot. I don't like it. But, I need

> it. I may look healthy enough that I don't need it but walking out

> of the store, I will likely be having problems walking.

>

> The medicines I take may have nasty side effects. I know this. I

> don't need reminders of this from someone who doesn't live in my

body

> and feel my pain. I don't enjoy taking the medications but I have

a

> disease that needs to be medicated.

>

> Don't lecture me about the addictive nature of pain medications. I

> know the risks. And don't judge me for using pain medications. It

> doesn't mean I am weak. It means I have pain. If it is a choice

> between pain medicines allowing me to live a more normal life and

not

> taking them out of fear, I choose having a more normal life.

>

> Standing, sitting, walking, and laying can all be painful. Life is

> unfortunately painful. I have pain, swelling, limited energy,

joints

> that don't move right and other symptoms. Sometimes, I'm grumpy

> because of this. I try not to be but sometimes it comes out

despite

> my attempts to be happy and nice. In addition to the pain and

other

> symptoms, I may be feverish, feel tired, or even have joints that

> don't look " normal " . This is all due to RA.

>

> Please don't suggest " cures " . RA has no cure (at least now). So,

I

> have it, it is ncurable. Live with it.I do. I trust my doctor

and

> the treatment plan we've worked out between us, so please don't try

> to convince me you know a person who " cured " themselves with diet,

> supplements etc. It may have helped them or it may not have. It

> could just be the cyclical nature of RA that fools them into

thinking

> they've been " cured " .

>

> If you've ever broken a bone, think of that pain and magnify it.

> Then imagine all over your body. That's how I feel at times.

>

> When I travel with you, please understand that for my health, I may

> need to have frequent stretch breaks. I'm not doing it to slow our

> trip down. I don't take joy in having a hard time getting moving

> after sitting for awhile. Don't hassle me over it.

>

> Don't assume when you hear the word " arthritis " that I mean

> osteoarthritis, which is what most people think of when hearing

> arthritis. Most people associate the word with the wear and tear

> arthritis of aging. I may have OA as well which is that very

type.

> But, I have rheumatoid arthritis, which is an auto-immune disease

> that causes my body to attack itself. I'm not too young for

either.

> Infants get RA as well as adults. Unfortunately, OA is not just a

> disease on its own; it can come as a secondary disease to RA. So,

I'm

> not too young for arthritis, please don't tell me I am. And if

you

> still think I am, well, my body and doctors say different so I'm

> going to listen to them, not you.

>

> I may need to rest more often than most people. It's not that I'm

> lazy. It's that RA causes fatigue. And that fatigue can come and

go

> or be persistent. Imagine having the flu all of the time.

>

> I may not have " just " RA. There are many other diseases that can

go

> along with it. Those diseases also take their toll on me with

> symptoms, medications and problems.

>

> I don't enjoy turning down certain activities due to my RA. I may

> not always turn that down; it is just that particular time may be a

> bad time for me. Don't assume I'll always turn things down and

stop

> asking me. That makes me feel so left out. But also if I do say

> no, don't try to make me feel guilty. And if I say yes, but have

to

> change my mind later, please don't be angry. I don't like doing

that

> but sometimes despite my best planning; I just can't make my body

> cooperate.

>

> There are things I can do that I also enjoy doing that may look

like

> a struggle to you. Please don't try to " protect " me by taking

things

> from me or stopping me from doing something. If I'm doing

something

> and not asking for help, it is because I am ok doing that. I'll

> likely ask for help if I need it. But also know that I may be too

> proud or stubborn to ask for help too. If you wish to help, don't

> just take over. Ask if you can help. If I say yes, ask what the

> best way to help me will be. If I say no please don't

> be offended, it is likely something that I may struggle with but

> gives me pleasure to do. (This doesn't apply to spouses and

friends

> who have known you for long enough to have worked out non-verbal

> clues of needing help.)

>

> Just because I look healthy, doesn't mean I am. RA is in many ways

> an invisible illness. Normally, it takes many years for the

effects

> of RA to be seen visually. Even those who have had RA for many

years

> may look healthy.

>

> Please do not think it is funny to force me to shake hands and then

> use a crushing grip. It's not funny and it's quite painful to be

> honest. Also please don't assume because I don't shake hands that

> I'm a snob or anything other assumption. It's just quite painful,

> even if my hands look normal.

>

> Please keep in mind that as frustrating as it is for you to deal

with

> my RA, it is more so for me. RA typically means some losses for

me,

> whether it is activities I enjoy, my job, my ability to do some of

> the things I found simple before. To me it may seem like I've lost

> my identity. Typically, people with chronic diseases, especially

the

> newly diagnosed, go through the five stages of grief. Even those

who

> have had RA a long time may go through the stages many times after

> their initial acceptance of RA.

>

> Do not assume I'm " just depressed " . Depression does go hand in

hand

> with chronic diseases whether due to the unrelenting pain or stress

> or any other number of reasons. I don't need to " get out more " and

> expect it to make me always feel better. Sometimes that itself can

> lead to depression if I am facing that I can't do as much when I go

> out.

>

> Also please don't try to convince me that changing my diet

> will " cure " me. Recall that I said RA is incurable. Changing my

diet

> may help with symptoms but it doesn't help everyone.

>

> Also, I don't need to be told I need more exercise. I'd like to be

> able to exercise more but may not be able to. That is frustrating

> enough. I don't need to hear from others that I'm not doing enough.

>

[Guest guest]

It really gripes me too, especially since I have severe OA along with

RA! I'd like to give them a day in my body!

>

> well put...one of the things i hate the most is when u mention u have

RA and the person replies " oh yeah , i have arthritis too...then

launches into a rant about how their knee bothers them when they

exercise too much etc...oh well...we that know will perservere....frank

carnes

>

>