Re: another new person to the group (((((())))))) warning, long post

[Guest guest]

Hi :

You have come to a group of the most caring and

supportive people I have ever known, and our

moderators search and search the internet to find

medical information for us, before, I think, even are

doctors are sometimes aware of it. I have had RA for

8 years now, and also Raynaud's, OA and Fibro, dx

after the RA.

Yes, welcome to the wacky world of auto immune

disease. It is a very confusing, frustrating, scary,

aggravating world, and you are beginning to understand

all of that. It can be very overwhelming at first,

but hang in there. Because many of the diseases

involved mimic each other's symptoms, or overlap

symptoms, it can be very difficult to nail down the

exact disease sometimes. It takes time.

Actually, I was lucky, because when I was first dx, it

was through positive RA blood work and my physical

presentation, as well as family history of RA. My

doctor also began aggressive treatment of the RA right

away with Plaquenil, and for that I credit my lack of

bony deformities and that I am still as active as I

am, although over the 8 years with RA that has changed

to less active than I once was. But I am 52, older

than you are by quite a bit, and that makes a

difference too.

I am glad that your doctor has already started you on

a treatment program, Prednisone works so well on the

pain and inflammation, but you don't want to take it

for too long, and Methotrexate is well accepted and

one of the oldest treatments for RA. Make sure to

take Folic Acid with it - it will help with the side

effects. I take mine on Friday night, after dinner,

and before bed, so that I sleep through any nausea.

The next day I usually am very tired, and need more

rest. I have been on Mtx for about 4 years now, and

have had good result with it, but I am also on Enbrel

now which is helping me even more. I have been on

many other meds too, but these seem to be the best for

me. Sometimes it takes a while to get to the right

med/combo of meds, so be patient. Give the Mtx at

least 3 months to really kick in, maybe less, but it

does take time to build up in your system.

Yes, it does turn your world upside down so to speak,

but my husband and my children (19 and 22 now) are

very supportive of me, we stick together, through good

and bad. No, not everyone will understand, and some

never will. I hope that your other family members will

be supportive of you. I used to send my husband

emails on RA information, as he was more likely to

read about it rather than sit and have me read or talk

to him about it. Knowledge is power, read all you can

about your disease and the treatments offered.

There are people here who have RA, and have had

children after dx, and I am sure they will speak with

you on that issue. Don't think that your entire life

will crumble and there will be no future, because

there will be. It may not be exactly what you

expected, and there will be compromises, but, all in

all, with the improved meds, things are actually

looking up for those dx with RA and other diseases. I

can't tell you what RA (if that is your dx) will do to

your life, nor can anyone tell you the path the

disease process will take, everyone is different, and

so nobody can tell you absolutely how RA will affect

you. But, don't give up.

My best advice for you is to keep positive, don't give

up your dreams, keep fighting. I know that it is hard

to do this right now when you are in so much pain, but

there is so much hope, and I don't want you to forget

that. I hope this " novel " has helped you. Hang in

there - any further questions, just go ahead and ask

away.

Kathe in CA

--- <melissahull_1975@...> wrote:

> I am new to the group and new to the wonderful world

> of autoimmune

> disease. I still have not been definitively

> diagnosed but it

> currently seems the suspicion is RA or lupus. All I

> know is that my

> body is in a world of hurt, I feel angry at people

> and the world for

> not understanding, and afraid that my life is going

> to change

> irreversibly for the worse. I have had pain here

> and there since

> last year with a flare in the fall and one big flare

> currently. My

> blood work pretty much comes back normal except for

> my sed rate going

> up. Indomethacin worked for a while but now I am on

> prednisone and I

> start methotrexate next week. I basically feel

> confused about what

> is wrong with me, why nobody can tell me what is

> wrong with me and

> what I should do about it. I am at the point with

> the pain that I

> just want it to go away but the bigger questions of

> what this all

> means for me, my husband and what I hoped would be

> our long healthy

> life together. I'm 30 years old, I haven't had

> children yet and there

> are so many other future things that I feel like are

> disappearing

> from the realm of possibility.

>

> Sorry for the drama but things feel hopeless right

> now. Can anybody

> tell me what I can expect from all this? How do you

> deal with the

> pain? How do you deal with spouses, family and

> friends moving a

> whole lot faster than you? How do you deal with all

> this medication?

>

> Thanks,

>

>

>

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

>

>

> Hi :

>

> You have come to a group of the most caring and

> supportive people I have ever known,

I just find that comment sort of funny because I wrote this long, heart

felt e mail to this group, and did not receive even ONE response, or

one welcome. I was feeling a bit sad by it, but I guess I will get

over it. (Or maybe find another group)

sandy

[Guest guest]

Thanks ...Hey, I am in WI too! Cold here, hey?

Sandy

> --- In , Kathe Sabetzadeh <lv2ryd@>

wrote:

> >

> >

> > Hi :

> >

> > You have come to a group of the most caring and

> > supportive people I have ever known,

>

> I just find that comment sort of funny because I wrote this long,

heart

> felt e mail to this group, and did not receive even ONE response,

or

> one welcome. I was feeling a bit sad by it, but I guess I will get

> over it. (Or maybe find another group)

>

>

> sandy

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Pat =)=)=)

Sandy

> Sandy, I am so sorry that you felt ignored by the group. It was

not intentional or personal. I can't say with any certainty what

happened but please accept my apology and give us another chance.

>

> Hugs

> June

> ----- Original Message -----

> From: sandradee_200340

>

>

> --- In , Kathe Sabetzadeh <lv2ryd@>

wrote:

> >

> >

> > Hi :

> >

> > You have come to a group of the most caring and

> > supportive people I have ever known,

>

> I just find that comment sort of funny because I wrote this long,

heart

> felt e mail to this group, and did not receive even ONE response,

or

> one welcome. I was feeling a bit sad by it, but I guess I will

get

> over it. (Or maybe find another group)

>

>

> sandy

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I have been offline all weekend so I am just now getting back to the

group. Thanks, Kathe. Your " novel " has indeed helped. Everyone's

responses have made me feel welcome and not alone with all this. Not

feeling alone with this right now seems to be my primary emotional need.

I have read a couple places now about taking folic acid with

methotrexate. How much do I take or is it an individual thing? What

else should I know about dealing with taking methotrexate?

I read the short-term disability thread happening earlier today. I am

also considering this while my meds get under control and I'm more

comfortable. I can't believe that I am doing my body any good by

working all day in pain and coming home in even worse pain and

physically and emotionally exhausted on top of it. I just struggle

with my New England Protestant work ethic guilt complex. I feel

guilty leaving the attorneys that I support but why should I?

Thanks again, Kathe for your very nice response to my first posting.

I appreciate it.

>

> > I am new to the group and new to the wonderful world

> > of autoimmune

> > disease. I still have not been definitively

> > diagnosed but it

> > currently seems the suspicion is RA or lupus. All I

> > know is that my

> > body is in a world of hurt, I feel angry at people

> > and the world for

> > not understanding, and afraid that my life is going

> > to change

> > irreversibly for the worse. I have had pain here

> > and there since

> > last year with a flare in the fall and one big flare

> > currently. My

> > blood work pretty much comes back normal except for

> > my sed rate going

> > up. Indomethacin worked for a while but now I am on

> > prednisone and I

> > start methotrexate next week. I basically feel

> > confused about what

> > is wrong with me, why nobody can tell me what is

> > wrong with me and

> > what I should do about it. I am at the point with

> > the pain that I

> > just want it to go away but the bigger questions of

> > what this all

> > means for me, my husband and what I hoped would be

> > our long healthy

> > life together. I'm 30 years old, I haven't had

> > children yet and there

> > are so many other future things that I feel like are

> > disappearing

> > from the realm of possibility.

> >

> > Sorry for the drama but things feel hopeless right

> > now. Can anybody

> > tell me what I can expect from all this? How do you

> > deal with the

> > pain? How do you deal with spouses, family and

> > friends moving a

> > whole lot faster than you? How do you deal with all

> > this medication?

> >

> > Thanks,

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>