Re: Newbie (long)

[Guest guest]

Hi :

Welcome to posting! Always glad to hear from a

lurker. Sorry you are still in so much pain, but your

doctor sounds like a good one who is treating your RA

aggressively which is so important. I'm glad you

sought out a rheumy for a second opinion. I think a

lot of us have had " aches and pains " that we kind of

ignored, until the big flare hit, or we finally went

in to the doctor because of the pain.

Yes, it is very difficult to come to terms with life

as it is now, and the life you imagined you would be

living. I, too, had kids 11 and 14 when I was dx, and

was looking forward to getting them through high

school, and then there would be more time for things

that I wanted to do, like ride my horse every day.

Well, if I am lucky I can ride once a week, or once a

month now, but I treasure those times and am happy

that I still can do even that. The way we thought we

would be when our children were old enough to fend for

themselves more, and what we had planned to be doing,

is hard to give up. I am always in some degree of

pain, varies from day to day, even hour to hour

sometimes, and, yes, a lot of people think that I have

" just arthritis " . When asked, I now say the reason I

am in pain is because of an autoimmune disease that

affects my joints. That they seem to get. When you

say rheumatoid " arthritis " , their mind just goes to

those commercials on Aleve, where one pill can take

care of all that nasty arthritis pain, yeah, I wish.

Getting others to understand is hard when they hook

onto that word, " arthritis " , at which point they

complain about their arthritis in their knee or

something. Frustrating.

Anyway, it does take time to come to grips with it

all, and there is definately a grief component to

dealing with RA or any other disease that changes your

life as you have know it, and changes your future so

drastically sometimes. Grief for what we loose of our

lives, changes in our image of who we are. You are

lucky to be able to work at home, and control your

hours to cope with how you are doing from day to day.

Hopefully, the meds will allow you to continue

working, and when you begin to get control of the RA,

you will have more energy to do more. Not to say the

fatigue will just disappear, it doesn't, but it gets

to be tolerable.

I am hoping that if this med combo begins working well

for you, you will have more " upbeat " days too. Being

positive is hard to do when you are in pain, but I

find a good sense of humor helps, as do people in your

life who understand and comfort you. It's great that

your husband and kids are supportive of you.

As far as not complaining here, don't ever minimize

your pain or what dx you have or do not have, we do

not judge here, we are all here for the simple reason

that we have been dx with an autoimmune disease,

mostly RA, and are trying to deal with it as best we

can, and support is so very important. The people

here have given me more than I could ever say, and I

am sure you will feel the same way. So, vent away -

we all do!

Hang in there -

Kathe in CA

--- <kyrik@...> wrote:

> Okay, I guess it's finally time for me to write my

> novel now :-)

>

> I've been lurking now for several weeks, posting

> occasionally and

> getting comfort and insight from you all.

>

> I was diagnosed about a month ago, but only after my

> primary care

> physician, after the most cursory of examinations,

> said, " Oh, you're

> lucky, what you have is slow-growing and not

> painful, you should be

> fine. Just take glucosamine. " To her credit she did

> run the blood work

> and took x-rays which all came back negative. But by

> then I was in so

> much pain that I knew there was no way it could be

> " fine. " For me, too,

> the symptoms appeared almost literally overnight,

> although there were

> warning signs. For a year or so I've had trouble

> holding a coffee cup

> and writing has become difficult, but I just brushed

> that off.

>

> Luckily, I found an excellent rheumatologist who

> diagnosed me me after

> about six weeks and who takes me seriously. He put

> me on Arava right

> away, plus prednisone, muscle relaxers, pain pills

> and sleep meds. I'm

> also doing physical therapy for a herniated disk and

> severe cervical

> spine pain. I've only been on the Arava for about

> three weeks and have

> noticed a difference but it's still hard.

>

> Like all of you, I have extreme fatigue and never

> ending pain and am

> having to deal with the fact that things will never

> be the same. Just a

> few months ago I was playing the guitar, gardening

> and going out with

> friends to play foosball and now everything has

> changed. I get so

> depressed because, at 44, with my kids in their

> teens, I was starting to

> feel like maybe life was beginning to take a turn

> for the better. I've

> actually been sick for a long time (which, in

> retrospect was probably

> the beginning of RA) but was feeling pretty good.

> Financially things

> were getting better, but now I'm having to face the

> fact that they may

> start getting worse. I have bouts of depression and

> I lose hope a lot

> but, on the other hand, my husband and friends are

> supportive and so are

> my kids, mostly :-)

>

> It is so frustrating, though, I feel like I lose

> half my day in that I

> need more sleep, I get really tired after working

> for just a few hours,

> and I have to rest so much. It's ridiculous. Plus,

> since I write and do

> web design for a living, my work is cut in half,

> too. I can only go for

> so long before the pain becomes unbearable and the

> fatigue sets in.

>

> I know that you've all been there before and so many

> of you have it

> worse than me - so far I've *only* got OA, epilepsy,

> bone spurs, a

> herniated disk and RA - so I can't really

> complain, but it is hard

> coming to grips with all of this. The fact that so

> many people think

> that it's *just* arthritis, that I'm unable to do so

> many of the things

> that I could do just a few months ago, that I'll

> never be 100%, that

> some days I'll be lucky to be even 50%, etc. Just

> the general stages of

> grief, I guess.

>

> I'm trying to readjust my work schedule and I'm

> lucky that I work at

> home so that I have more freedom, but am worried

> about the future.

> Hopefully my Arava will work and things will get

> better soon, but it is

> hard to keep a positive attitude. I'm impressed that

> so many of you are

> so upbeat.

>

> As an aside, before I was diagnosed with RA, I was

> diagnosed with an

> immune system reaction to mold. The symptoms mirror

> that of RA (except

> for the joint pain) and I found that getting rid of

> the mold in my house

> (especially the carpets) helped that. Cats are bad,

> too, since they

> excrete something similar (Candida) to the mold that

> I'm sensitive to.

> So I need to keep the bedroom area especially clean

> since they spend a

> lot of time in here with me. Apparently one in seven

> people has this

> immune system reaction and, given its similar

> symptoms, I wanted to

> bring it up since maybe others of you might be

> sensitive as well.

>

> So, thanks for all the support so far, I'm thinking

> of all of you even

> though I'm not posting much.

>

> Take care :-)

>

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

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