Re: Re: new member need support

[Guest guest]

Hi Ebony

thanks for the response. I'm very lucky I have a very supportive husband. I

do see a counselors and discuss my feelings. I'm feeling better today so I'm

more up emotionally. I find it hard to commit to anything so volunteering is

difficult. I have lost friends also because I make plans and am unable to

follow through. Its difficult for people to understand doctors also I'm sick of

hearing ' but you look good.' I find my looks really do not indicate how I feel

or my pain level. I do have a great Rheumatologist. I just have a lot of fear.

I don't know what is going to happen or how disabled I'm going to get. I never

imagined myself disabled. I'm a nurse and just that statement says it all. I'm

trying to learn who I am and how to be the patient. I often feel very useless.

It sounded form your E-mail like you have moved around a lot. That has got to

be tough. Especially trying to reestablish relations with doctors.

Thanks again for responding.

Jane

[ ] Re: new member need support

Hi new member! Welcome!

I don't think you are whining. I think we all feel that way at one

time or another.

I can relate to your post as well, especially now. I am

experiencing the " new symptoms " you described right now and yes it

does seem like they keep coming. I don't feel like the doctors see

me either or they see me as a hopeless case. I have seen at least 6

different RA docs, mostly from traveling with the husband's job.

But also from bad rapport with the docs and bad care by some. I

have to feel comfortable to trust your treatment. Also when

comparing some of the treatment received by those here my treatment

has been suboptimal quality. I was placed on NSAIDs first 2 years

of diagnosis with higher and higher doses. But didn't respond to

plaquenil finally given or anything else given except Enbrel for

about 9 months. Stayed on it for 4 years, however even though I was

receiving no relief. A few things added in but no relief from the

pain or joint damage. So my worries are the same as yours but what

can we do, keep going.

For your depression, are you seeing a counselor? How do you feel

about seeing a counselor? I had a doctor in TN who I could talk to

about my emotions or family problems or anything else on my mind.

Can't find that here in Georgia, however. It's been kind of like

herding cattle since I have been here. So I don't dare trust

anyone here. And there lies the bulk of the rapport problem.

I work FT. Probably not for much longer but will go back to school

this spring to train for something I can do with limitations.

Staying busy helps me. As long as I can earn a living I feel useful

so I have to make that happen to ward off depression.

How do you keep busy? Do you have family support? What about

friends you can call when you are feeling like this and of course on

the good days too.

I have also thought of volunteering. We have a program here that

interest me called Hosea feed the hungry or also thought about Red

Cross. I think volunteering is good for chasing away the blues and

to keep things in perspective. We are alive so that means there is

always a chance for a better life than what we are experiencing

right now but in the meantime I try to enjoy as much life as I can.

That's about all we can do in our search for relief from this

disease, the pain and joint destruction.

I better get dressed for the outpatient surgery I have early this

morning. You know it takes us a while to dress.

but hang in there. take care.

Ebony

________________________________________________________________________________\

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[Guest guest]

Jane,

Welcome to the group. You are not whinig, you are just telling it like it

is.I know that my hubby gets sick of me complaining and it seems like there

is something new hurting everyday. The Rhumatologist says that we can keep

the disease stable with all the new meds, but I have to wonder at what point

does it get better. I think the best we can do is try to stay positive and I

have just flat told people I CAN " T when they wnt me to spend something like

a marathon shopping day or go out dancing.Its still hard, I think to admit

that I have all this crap but I strill keep my fingers crossed, oh wait the

RA crossed them for me already... I gotta laugh to keep from crying. Hang in

there and know we are always here to listen.

Heidi M

On 1/4/08, Jane Westerlund <janewesterlund@...> wrote:

>

> Hi Ebony

> thanks for the response. I'm very lucky I have a very supportive husband.

> I do see a counselors and discuss my feelings. I'm feeling better today so

> I'm more up emotionally. I find it hard to commit to anything so

> volunteering is difficult. I have lost friends also because I make plans and

> am unable to follow through. Its difficult for people to understand doctors

> also I'm sick of hearing ' but you look good.' I find my looks really do not

> indicate how I feel or my pain level. I do have a great Rheumatologist. I

> just have a lot of fear. I don't know what is going to happen or how

> disabled I'm going to get. I never imagined myself disabled. I'm a nurse and

> just that statement says it all. I'm trying to learn who I am and how to be

> the patient. I often feel very useless.

> It sounded form your E-mail like you have moved around a lot. That has got

> to be tough. Especially trying to reestablish relations with doctors.

> Thanks again for responding.

> Jane

>

> [ ] Re: new member need support

>

> Hi new member! Welcome!

>

> I don't think you are whining. I think we all feel that way at one

> time or another.

>

> I can relate to your post as well, especially now. I am

> experiencing the " new symptoms " you described right now and yes it

> does seem like they keep coming. I don't feel like the doctors see

> me either or they see me as a hopeless case. I have seen at least 6

> different RA docs, mostly from traveling with the husband's job.

> But also from bad rapport with the docs and bad care by some. I

> have to feel comfortable to trust your treatment. Also when

> comparing some of the treatment received by those here my treatment

> has been suboptimal quality. I was placed on NSAIDs first 2 years

> of diagnosis with higher and higher doses. But didn't respond to

> plaquenil finally given or anything else given except Enbrel for

> about 9 months. Stayed on it for 4 years, however even though I was

> receiving no relief. A few things added in but no relief from the

> pain or joint damage. So my worries are the same as yours but what

> can we do, keep going.

>

> For your depression, are you seeing a counselor? How do you feel

> about seeing a counselor? I had a doctor in TN who I could talk to

> about my emotions or family problems or anything else on my mind.

> Can't find that here in Georgia, however. It's been kind of like

> herding cattle since I have been here. So I don't dare trust

> anyone here. And there lies the bulk of the rapport problem.

>

> I work FT. Probably not for much longer but will go back to school

> this spring to train for something I can do with limitations.

>

> Staying busy helps me. As long as I can earn a living I feel useful

> so I have to make that happen to ward off depression.

>

> How do you keep busy? Do you have family support? What about

> friends you can call when you are feeling like this and of course on

> the good days too.

>

> I have also thought of volunteering. We have a program here that

> interest me called Hosea feed the hungry or also thought about Red

> Cross. I think volunteering is good for chasing away the blues and

> to keep things in perspective. We are alive so that means there is

> always a chance for a better life than what we are experiencing

> right now but in the meantime I try to enjoy as much life as I can.

> That's about all we can do in our search for relief from this

> disease, the pain and joint destruction.

>

> I better get dressed for the outpatient surgery I have early this

> morning. You know it takes us a while to dress.

>

> but hang in there. take care.

>

> Ebony

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

> http://tools.search./newsearch/category.php?category=shopping

>

>