~ hang in there

[Guest guest]

Hi ,

I am behind in email but don't want to delete a thing without reading it.

That is why I am now responding to this.

I guess I have been *very* lucky in my life. All I want to do is write. I

love writing poetry, and essays and opinion pieces and someday plan to write

that bestseller that I know is lurking in me somewhere. No one has ever

discouraged me with my writing. My parents never said " writing isn't a real

job. " Whatever I wanted to do, they supported my decision. When I wanted to

take violin lessons, I was encouraged and supported, no matter how awful I

sounded! LOL It didn't matter what I wanted to do, I was never discouraged.

When I got JRA, my pain was never discounted. My pain and disease were real.

They were/are part of my life and who I am now. In the beginning my friends

became a little distant. Not bcs they didn't believe my pain, or bcs they

were discounting it. Or ignoring it. They were scared. They didn't know what

to say to me or how they should act around me. They knew me *before* the pain

and crippled body I have now. They saw me run, climb trees, do gymnastics,

sit on the floor with my legs crossed. Years later, after being dx'd, my

friend I have known since I was 12, for 20 years now, we were able to discuss

that time right after I was diagnosed. We had both been scared. Me, bcs I

didn't think she'd like me anymore. Her, bcs she was afraid to discuss PE in

front of me, frankly, she was afraid to talk to me about anything good going

on bcs she saw how it affected me. She was having a good time, and I was

battling severe pain at age 13. About 3 years later we went to a high school

football game together and when she was taking me home she kept driving by my

house bcs we were talking. We had a major heart to heart and explained to

each other why we acted the way we did back then. I was jealous bcs she could

take PE and run the jaunt. She felt guilty bcs she could. We did a lot of

talking that night and cleared the air. To this day, her and I are still best

of friends. She is the sister of my heart. I live in Washington State and she

lives in Missouri, but we email everyday. A year ago she even came to visit

me during Valentine's Day weekend bcs I was going through a bad health time.

I was really scared about how my bone density test had come out. I was in

pain. Just a mess. She went home and told her husband and he said, " Let's

check the net and airline prices. " The next day at work she emailed me and

told me this. I was so thrilled I was screaming! I hadn't seen her in 12

years. I had to go out that day and when I got home there was a message on my

machine. She said something like: I really hope you get this message. Don

found a flight for me for this Saturday. I hope you don't have any plans bcs

I am coming anyway. Please call me and let me know this is ok. Was it ok??

Was it ok?? I was so happy I was crying. Then I started cleaning!

What I am trying to say is, when people get a disease of any kind, their

friends and family don't know what to do or say. Just as we don't. We will

assume they don't care or don't understand. Truth is, they are probably just

scared. They don't want to hurt your feelings. This is new to them just as it

is to you.

I don't want you to feel that you shouldn't tell anyone about your disease. I

tell everyone! Not everyone understands what RA is. If they ask, I tell them.

If they don't, then I don't. It could be that your sister is just reacting in

her own way. She may be afraid. Scared for you. Whatever. Everyone reacts

differently.

I got lucky. I have a SUPER support system all around me. My parents have

always supported me with whatever I wanted to do, now help with my RA. All my

friends are very supportive. I couldn't dream up a better group of friends.

They always ask how I am. They worry if they don't hear from me during a

certain amount of time. They understand my limitations. They don't mind

parking in a handicapped spot or wheeling me in my wheelchair.

Not only do I have my support group around me in my life, I also have all of

you here. Plus a great doctor and boyfriend.

So, , all I am trying to say is, you don't have to hide your pain.

People just have their own ways with dealing with it. It has hurt my mom and

dad and brother terribly to watch me go through all this pain. And at times

over the years, they haven't known how to react around me or what to say.

That is normal. It's natural. I don't know what kind of relationship you have

with your sister, but maybe you could write her a letter to explain what the

disease is. Print up some of the info a has sent to the list. My poor

brother, when I talk to him and he asks about my arty, he cries! I have to

comfort him! We all react differently. It doesn't mean we don't care. Your

sister has seen *her* sister strong and active all her life, and it probably

scares her. You need people to help you with your pain, she will need someone

to help her understand what you are going through.

I hope I have made some sense. Please let me know your thoughts on this.

Hugs,

<<

In the beginning when I found out about the RA, I felt I owned it to my

sister to tell her. I was wrong, she told me just go get a cortisonne

(spelling) shot. I made up my mind them I would tell as few people as

possible. It was lonely until I found all you guys. The difference here

is you can understand what is happening, others just can't. In my book

this support group, has helped me more than anyone will know. If people

who don't understand this group they are stupid, people who are

chronically ill, do so much better when they join support groups, and that

is documented. >>