Re: May I please ask a question?

July 14, 2005

,

Your letter made me cry. Not in a bad way, but in a way that I know you

understand. I know everyone here understands. I am 1 of 13 children (the only

girl) and was brought up to be strong, silent and martyrs for our men and

family. This is such a frustrating thing for me to accept. The people I work

with also don't understand. They think all types of arthritis is just a

stiffening and achy feeling here and there. I do have a friend at work that

helps a lot. She bends for me to get things out of the ice machine and has

actually opened doors for me at work. (We have extremely heavy security doors,

in fact one day I was stuck in the restroom until someone came in and opened the

door...I know, pathetic). I guess I need to realize that I have a disease

<gulp> and that yes, things are changing. I really think if I could finally

find a compassionate doctor that understood, that things would get better. I

guess that's the first step. Please pray that the Lord brings to my

attention a good doctor in this area? And yes, I have disability (8 weeks at

full pay) if a doctor files for me to be off. Guess we'll have to see.

Thank you so very much. Please know that I appreciate all the kind words,

knowledge and e-mails.

Prisicilla

ltlmisscrankypants <ltlmisscrankypants@...> wrote:

Hi.

This is the first time today I've had a chance to read the posts.....and I

know you've had lots of replies. I just really wanted to give you my two

cents worth. Your post just reminded me so much of myself and where

I was two months ago in dealing with and accepting this disease.

Sounds to me like you were still in denial about your disease and the

diagnosis. You were still continuing on with work, the long commute,

taking care of the kids, etc......as you did before becoming ill. You're in

pain right now and your body needs to rest. Maybe your meds need to

be adjusted to control the pain and other symptoms a bit better.

You mentioned that you're concerned about going on disability because

you're so young. Sadly, RA doesn't care what age you are. Please, if

you have any type of short-term or long-term medical benefits, try and

use them right now to get your RA under control. Consider it an

opportunity to be good to your body and give it the well deserved rest it

needs right now. As someone so kindly put it to me a few months ago,

consider it a " gift " . Use the time off to rest, get well and be at home

with your family.

I don't wish RA on anybody, but we have it....and until there is a cure,

we are stuck with it. Sometimes, it can give those of us who live a

very busy life the opportunity to slow down and " smell the roses " .

You're not crazy, you're not a weakling and you're definately NOT

hopeless. We all have to go through what you're dealing with now. I

can assure you that it does get easier emotionally. You will come to

terms with having it and accept the fact that life has changed for you.

It doesn't mean you can't do things you used to do....it might just mean

that you have to modify how you do it.

Thank you so much for sharing,

> I was diagnosed about 6 mths ago with fibromyalgia and RA. I've

been

> dealing with it pretty well (at least I think I am). I work full-

> time and have 3 children (5,6, and 7 years old). I drive an hour

> each direction for work.

>

> I've maintained well with the help of an anti-depressant, anti-

> inflammatory, pain medication (xodol) and a muscle relaxer for night

> time. My question is this, I've been having my c-reactive protein

> monitored and been told that it's " not terribly high " , but why do I

> hurt so bad?? I have nodules(?) growing on my wrists and various

> other places. I do accounting all day, so it's a lot of sitting and

> typing. I can't straighten out my knees anymore either and after

> sitting for just 20-30 minutes when I stand my knees give out

> sometimes or I have to catch my breath before I move. I am only 34

> years old! I honestly feel like a weakling, especially with the

> comments about my c-reactive protein. I don't know what to do.

> Sometimes I can barely move. I don't know how long I can continue,

> but I know I can't go on disability yet. Am I crazy? A weakling? Is

> this hopeless?

>

> Please help me.

July 15, 2005

I don't know if Dr. Dykman was the one you saw or not.

But he is in Fayetteville. I have seen him about a

year and half now. I live in Ft. . Where do you

live. I really hope things gets better for you soon. I

will be praying for you.

Beth(AR)

--- casterramom <casterramom@...> wrote:

> Thank you so much for your thoughts. I will try to

> answer everyones

> questions. Yes, I was sent to 1 rheumatologist and

> he looked at me

> and said " you have nothing but fibromyalgia " . Take

> Tylenol and get

> extra rest. When I was crying and upset on my 2nd

> visit because of

> the pain, he told me flat out 'if you're looking for

> pain meds, don't

> come back because I don't give them to people like

> you'. I never went

> back. How can I find a good doctor in my area? (NW

> Arkansas)

> No, I'm on nothing to stop the progression. My pain

> management doctor

> wants me in water therapy and physical therapy, but

> I can't miss work

> (I've already missed 12 days in the past year due to

> the pain), so I

> can't go. Financially we can't afford for me to go

> to part time, we

> are struggling severely anway. At times I can't

> even afford my

> medicine. As for disability, I've been told (I

> don't know if it's

> correct) but even if a specialist recommends being

> off, I have to be

> without work 6 mths and then I can file for

> disability, but then it

> can take up to 2 years to get it. My family can't

> do without income

> for a month, let alone 2 years. I love my family,

> but feel very

> useless and hopeless facing this.

>

> Is anyone familiar with the c-reactive protein test?

> Because it's not

> very high, am I being a baby? I've been told some

> peoples test is

> 80...I don't think I can handle that.

>

> <sigh>

>

> > Hello Me

> >

> > It sounds like you are miserable and really

> suffering. Have you

> thought about

> > a medical retirement (you might be to young)? I

> sort of wish I had

> done that

> > when my kids were younger. It's so important that

> you are there for

> them and

> > working that hard only makes this disease worse.

> What about part-

> time work

> > somewhere closer to home?

> >

> > Take Care

> > Babs

> >

> > [Non-text portions of this message have been

> removed]

>

__________________________________________________

July 15, 2005

I don't know if Dr. Dykman was the one you saw or not.

But he is in Fayetteville. I have seen him about a

year and half now. I live in Ft. . Where do you

live. I really hope things gets better for you soon. I

will be praying for you.

Beth(AR)

--- casterramom <casterramom@...> wrote:

> Thank you so much for your thoughts. I will try to

> answer everyones

> questions. Yes, I was sent to 1 rheumatologist and

> he looked at me

> and said " you have nothing but fibromyalgia " . Take

> Tylenol and get

> extra rest. When I was crying and upset on my 2nd

> visit because of

> the pain, he told me flat out 'if you're looking for

> pain meds, don't

> come back because I don't give them to people like

> you'. I never went

> back. How can I find a good doctor in my area? (NW

> Arkansas)

> No, I'm on nothing to stop the progression. My pain

> management doctor

> wants me in water therapy and physical therapy, but

> I can't miss work

> (I've already missed 12 days in the past year due to

> the pain), so I

> can't go. Financially we can't afford for me to go

> to part time, we

> are struggling severely anway. At times I can't

> even afford my

> medicine. As for disability, I've been told (I

> don't know if it's

> correct) but even if a specialist recommends being

> off, I have to be

> without work 6 mths and then I can file for

> disability, but then it

> can take up to 2 years to get it. My family can't

> do without income

> for a month, let alone 2 years. I love my family,

> but feel very

> useless and hopeless facing this.

>

> Is anyone familiar with the c-reactive protein test?

> Because it's not

> very high, am I being a baby? I've been told some

> peoples test is

> 80...I don't think I can handle that.

>

> <sigh>

>

> > Hello Me

> >

> > It sounds like you are miserable and really

> suffering. Have you

> thought about

> > a medical retirement (you might be to young)? I

> sort of wish I had

> done that

> > when my kids were younger. It's so important that

> you are there for

> them and

> > working that hard only makes this disease worse.

> What about part-

> time work

> > somewhere closer to home?

> >

> > Take Care

> > Babs

> >

> > [Non-text portions of this message have been

> removed]

>

__________________________________________________

July 16, 2005

You need to be on a DMARD drug for the RA. A DMARD is a

disease-modifying drug. Without one, you can have a lot of damage to

your joints. Are you going to a rheumatologist? If not, I would suggest

that you find one ASAP because it usually takes a while to get in to

see one. Rheumies are better qualified to help those of us with RA. I

assume that if you were going to a rheumy, he would have you on a

DMARD. Methotrexate is probably the most widely used DMARD. Others are

plaquinil, Arava, and the new biologic drugs, Enbrel, Humira, and

Remicade.

Sue

On Wednesday, July 13, 2005, at 12:08 PM, casterramom wrote:

> I was diagnosed about 6 mths ago with fibromyalgia and RA. I've been