Re: another new person to the group

[Guest guest]

In a message dated 3/3/2006 1:50:02 PM Central Standard Time,

melissahull_1975@... writes:

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,

Welcome ! I'm , 27yrs old from Pittsburgh PA. yes i am young,

but have had RA over 2 yrs now. You have found the right place for support

here. Please dont apologize for writing. We all have been where you are at one

point or another in our lives. Being diagnosed with an autoimmune disease is a

learning process. Knowlege is power. At first you may be shocked, depressed,

angry, ect. Early treatment is very important. Pain management is an everyday

thing. Some days will be better than others, but you will get into a

routine. Medication and heat therapy help achey joints...I hope you and your

husband

will be able to have children someday. Luckily i was able to have 2

wonderfull kids before being diagnosed. After learning my grandfather had RA,

i'm

wondering if i passed it to them :(Who knows. Medication is another thing you

just get used to. Are you taking the oral or the injectible Methotrexate?

Again welcome. Sorry I have to go pick my son up from school. hugs

from PA

[Guest guest]

Hi ,

I'm quite a bit older than you (51) and, thankfully, I've already

had my kids (15 and 13 year old sons). But in terms of RA, I'm at

close to the same point you are. As best I can pinpoint them, my RA

symptoms started in September. It wasn't until December that they

became severe enough and long-lasting enough that I knew something

was very wrong. By that point, I was also not feeling well

generally, and thought I might have Lyme disease. (one of our horses

had it last summer)

I went to my PCP, who, after doing some preliminay blood work which

ruled out Lyme and a couple of other options, referred me to a

rheumatologist. By that time my symptoms had quickly become severe

and unrelenting. After many more tests, I got the dx of RA.

Like you, I am on prednisone and Diclofenac, waiting for other drugs

to kick in. I've been on methotrexate for 3 doses now, after a

short, failed attempt at Plaquenil. The rheumatologist has also

injected my hand, shoulder and both hips with cortisone, and has

started me in PT & OT. Even with the meds I'm on, there are many

nights and some days when I have to take pain killers (Tramodol) to

get through.

Like you, I'm having a really hard time coming to grips with this

disease. Life feels so totally out of control. I have always been

a very physically active person. Now, as I read about RA, I hear

that we must " exercize " , but also " respect the pain " and not do too

much. How do you know what is too much when EVERYTHING hurts? The

exercize routines I've seen suggested are such a huge step down from

where I am physically that they WON'T keep me anywhere near my

regular level of fitness. Just keeping track of all the pills is a

chore in itself.

I worry how this will affect my life and that of my whole family.

Half the time I'm feeling sorry for myself, the other half I decided

I'm being a baby, and I'm not going to let this keep me down.

I know that doesn't answer any of your questions, but at least know

you are not alone. There are other people struggling with the same

issues you are. I'm starting to think the term " misery loves

company " was made for people with RA!

--- In , " " <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,

>

>

[Guest guest]

Thanks everyone for your support. It really does help to know that I

am not alone in this or experiencing anything that many haven't

already been through.

> >

> > 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,

> >

> >

>

[Guest guest]

Hi Everyone,

My name is Sandy and I have just been reading up on some of the posts

here, and feel that I could have written many. I am (in 2 days I will

be) 43 and have had RA for about 8 years now. I have just recently

changed Rhum. Drs. because my Dr. had to quit, and I love this new Dr.

I started out as many here have, with the initial diagnosis, which

scared the living daylights out of me. I was sure I was going to either

A. Die or B. Become a cripple in a wheelchair. At first it hurt

soooooooooo bad, but in time, the Dr. tried and found the correct

medications for me to be 'comfortable.' I am never without pain, but at

times it is manageable at best. I have been on Prednisone for about 6

years now...that and Diclofonec, aka Voltaran (I think that is the

spelling). My new Dr. has me off the Diclofonec, down to 5 mg. of

Prednisone (Gosh I love that stuff!) and I have just finished my first

injection of Humira. (That was scary, but I did it!) I was wondering

if anyone else here is on Humira, and how it is helping them, if it is.

My own Dr. is on it as she has some pretty wicked RA herself.

I also want to tell those who have been recently diagnosed, especially

those with small childeren who depend on them, to HANG IN THERE and work

closely with your Dr. to get on the right meds. It takes time, and

patience to say the least. If you feel like your meds aren't working,

call the Nurse, they are (usually) very understanding and caring, and

they know what you are going through. I remember wanting to die, and I

would get soooooooo bad, then I would call the Drs office and the nurse

would listen to me crying, and we would work on another solution. It is

a trial and error disease, but it can become 'liveable' if you stay on

top of it.

One more thing...Don't listen to the horror stories...they will just

intensify your fear and for nothing!

Sorry this became a novel, but I soooooooooo feel the pain here. And

let me know about the Humira thing please.

Sandy

> >

> > 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,

> >

> >

>