Re: Hi. I'm newly diagnosed and scared witless

[Guest guest]

Hang in there, , the beginning of the journey is the worst part. You need

a good doc and a good medication routine. Get situated with a good

rheumatologist who can be your partner in fighting RA. Someone who gets the

psychological part of the disease can really be your ally and make you feel like

you're in it together. My first fab rheumatologist saw me through diagnosis,

weird side effects from meds, worrying I was developing an anti-TNF MS syndrome,

infertility and a miscarriage. This group is a great source of support too,

hugs, Kate F

[ ] Hi. I'm newly diagnosed and scared witless

My name is , I live in Greenville,TX. I'm 31 and have had

lifelong epilepsy, chronic back and joint pain and was diagnosed with

RA just two and a half weeks ago.I don't know what to do really. All I

can think of is what I'll never do. I know I'm feeling sorry for

myself and of course like anything in life there will be adjustments.

At least I've been told sooo many times before. I hate cliches but I

could really use some right now. I am so scared and don't really have

any friends that understand anything about this. I wonder if I'd just

never gone to the doctor if I would still be this messed up right now.

I don't know. I apologize if this is not the type of stuff to be

posting here. I just need to talk to someone who at least understands

a little.

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[Guest guest]

,

I did the same thing when I first got diagnosed. I focused on the

negative and what will never be able to do again. You will get

through this. If you never had gone to the doctor, yeah you wouldn't

have this diagnosis...but your rheumatlogist needs to know what your

going through to figure out what is the best medication regimne for

you. What works for one person may not work for you. You need to be

honest w/ your rheumatlogist...they are there to help.

This support system online is great...it really helps hearing from

others who know what you are going through and not just empathy. Just

know that you have friends through this support sytem. Hang in there.

--- In , " sea_angell_99 " <twistednoof@...>

wrote:

>

> My name is , I live in Greenville,TX. I'm 31 and have had

> lifelong epilepsy, chronic back and joint pain and was diagnosed with

> RA just two and a half weeks ago.I don't know what to do really. All

I

> can think of is what I'll never do. I know I'm feeling sorry for

> myself and of course like anything in life there will be adjustments.

> At least I've been told sooo many times before. I hate cliches but I

> could really use some right now. I am so scared and don't really

have

> any friends that understand anything about this. I wonder if I'd just

> never gone to the doctor if I would still be this messed up right

now.

> I don't know. I apologize if this is not the type of stuff to be

> posting here. I just need to talk to someone who at least understands

> a little.

>

[Guest guest]

> I don't know what to do really. All I

> can think of is what I'll never do. I know I'm feeling sorry for

> myself and of course like anything in life there will be adjustments.

>

If it's any consolation, I deal better with the pain now than I did when I

was younger. You actually get used to living your life in pain and it usually

just becomes background noise in a fulfilling life. Sort of mind over matter.

I spent years trying to get docs to diagnose me correctly and years getting

on disability. Then I had to turn around and instead of proving how disabled I

was, it was time to see what I COULD do. I was an avid backpacker so I became

a vehicle camper. It hurt to walk too much in the woods, so I got a 4WD ATV. I

loved to garden so I converted to raised beds. It's a constant thinking and

rethinking of how to do what you really want.

I'm sorry you have RA. The good news is now you know why you hurt and it can

be more effectively treated.

the Wanderer

On the road in an ancient RV and also living in a (GASP) apartment in Florida

http://wendyusuallywanders.wordpress.com/

You give but little when you give of your possessions.

It is when you give of yourself that you truly give.

**************

Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

I go to see a Rheumatologist on the 5th of February. Since he does not

take Medicaid, I will have to be seen on a study basis. I have no idea

of what to expect. I volunteer for a local hospice and a nurse I met

there use to be a nurse for this Dr. and sh got me the appointment. I

realize it is very important for me to see a rheumatologist ASAP. This

just doesn't feel real yet. I mean the pain is real, which is good to

know, I guess. I thought it was in my head or something and worrying

about it made it worse. I'm sure it didn't help, but at least I know

I'm not crazy. I just mean this hasn't really sunk in yet and in those

moments when it does click, I just feel hopeless. I just keep

thinking that I've not really done anything with my life and now it

feels like it's spinning out of control towards an abrupt stop.

> >

> > My name is , I live in Greenville,TX. I'm 31 and have had

> > lifelong epilepsy, chronic back and joint pain and was diagnosed with

> > RA just two and a half weeks ago.I don't know what to do really. All

> I

> > can think of is what I'll never do. I know I'm feeling sorry for

> > myself and of course like anything in life there will be adjustments.

> > At least I've been told sooo many times before. I hate cliches but I

> > could really use some right now. I am so scared and don't really

> have

> > any friends that understand anything about this. I wonder if I'd just

> > never gone to the doctor if I would still be this messed up right

> now.

> > I don't know. I apologize if this is not the type of stuff to be

> > posting here. I just need to talk to someone who at least understands

> > a little.

> >

>

[Guest guest]

hi. i understand about the things you won't be able to do. it took me awhile

to realize mourning you old life holds you back from enjoying your life now. i

try to do as much as i can and what i can no longer do find something new.

there are lots of ways to do different things you just use your imagenation.

take care God bless

sea_angell_99 <twistednoof@...> wrote: My name is , I live

in Greenville,TX. I'm 31 and have had

lifelong epilepsy, chronic back and joint pain and was diagnosed with

RA just two and a half weeks ago.I don't know what to do really. All I

can think of is what I'll never do. I know I'm feeling sorry for

myself and of course like anything in life there will be adjustments.

At least I've been told sooo many times before. I hate cliches but I

could really use some right now. I am so scared and don't really have

any friends that understand anything about this. I wonder if I'd just

never gone to the doctor if I would still be this messed up right now.

I don't know. I apologize if this is not the type of stuff to be

posting here. I just need to talk to someone who at least understands

a little.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

Yes, it is VERY scary when you get diagnosed w/ something like this when you are

young. Many of us on here were diagnosed (or dealing with it and NOT diagnosed

until later) and understand your fear. Having the diagnosis DOESN'T make it

worse, it will hopefully help you deal with it. It is worse when you don't have

a diagnosis and you wonder what is WRONG with you. You know you feel bad, but

nobody can tell you why and what to do about it. At least now you know the

devil you are dancing with.

Understand that getting the diagnosis does NOT make the disease worse. It

means now you know what you have and you and your health providers can make a

" game plan " on how to deal with it. Your fear is normal. Read about grief and

the stages people go through. You will go through all of these, more than once.

You will rage at the disease, at your parents,at God, etc. You will get

depressed. You will get scared again and again. This is ALL normal.

Don't be afraid to post these feelings on here. That's what we are all here

for. We've all been through it, are going through it, will go through it.

My disease became much worse about two to three years ago when my mother

developed lung cancer. I am trying to figure out how to keep my business going

and also deal with the fact that my version is no longer under control and that

the medications are too hard on me.

I go back and forth too through all these stages--and will again, even tho'

I've dealt w/this since I was a teenager.

Read what others have to say, get on and rant, vent, cry, whatever you need to

online.

The folks on here understand.

Be kind to yourself, and take care of yourself.

sea_angell_99 <twistednoof@...> wrote:

My name is , I live in Greenville,TX. I'm 31 and have had

lifelong epilepsy, chronic back and joint pain and was diagnosed with

RA just two and a half weeks ago.I don't know what to do really. All I

can think of is what I'll never do. I know I'm feeling sorry for

myself and of course like anything in life there will be adjustments.

At least I've been told sooo many times before. I hate cliches but I

could really use some right now. I am so scared and don't really have

any friends that understand anything about this. I wonder if I'd just

never gone to the doctor if I would still be this messed up right now.

I don't know. I apologize if this is not the type of stuff to be

posting here. I just need to talk to someone who at least understands

a little.

---------------------------------

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[Guest guest]

Hi Angel!

It's completely normal for you to be feeling the way

that you do! I'm 36 and have had CFS diagnosed at 19.

Then in my late 20's I became very ill and they

couldn't figure out what was causing it. After

several tests and specialists and physical therapy

where I could not stand to be touched due to pain, I

was diagnosed with Fibromyalgia and myofascia pain

syndrome. A couple of years after that, my knees

began bothering me and I had trouble walking. My

local doctors could see the swelling and feel the

warmth of the joints. Yet usually by the time I got

to the specialist, this would be gone. My doctor here

diagnosed inflammatory arthritis. My rheumatologist

was hesitant because I had bilateral patella femoral

syndrome. She sent me to a sports med/ and then an

ortho doc. They all did tests, withdrew fluid from

the knee when it finally became present at those

visits. ALl the tests were negative. Finally xrays

then an MRI showed joint effusions bilaterally. My

SED, ESR, WESTGREN and anti CCP became elevated. They

finally began treating for inflammatory arthritis.

With this disease though, it doesn't necessarily mean

you will be disfigured/or end up in a wheel chair.

The treatments today are quite effective and they are

learning more every day! I know its hard just try to

keep that positive aspect in mind! It will really

help! This group is a great place to vent, meet others

like you, to learn more and to educate yourself.

Welcome to the group:)

--- sea_angell_99 <twistednoof@...> wrote:

> My name is , I live in Greenville,TX. I'm 31

> and have had

> lifelong epilepsy, chronic back and joint pain and

> was diagnosed with

> RA just two and a half weeks ago.I don't know what

> to do really. All I

> can think of is what I'll never do. I know I'm

> feeling sorry for

> myself and of course like anything in life there

> will be adjustments.

> At least I've been told sooo many times before. I

> hate cliches but I

> could really use some right now. I am so scared and

> don't really have

> any friends that understand anything about this. I

> wonder if I'd just

> never gone to the doctor if I would still be this

> messed up right now.

> I don't know. I apologize if this is not the type

> of stuff to be

> posting here. I just need to talk to someone who at

> least understands

> a little.

>

>

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[Guest guest]

I was poking around the internet and found this video about RA. There are

lots more! They help get a feel for what we are up against and what can be

done....

http://tinyurl.com/2m7oza

the Wanderer

On the road in an ancient RV and also living in a (GASP) apartment in Florida

http://wendyusuallywanders.wordpress.com/

You give but little when you give of your possessions.

It is when you give of yourself that you truly give.

**************

Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Hi, Angel,

I had a diagnosis of lupus by a GP, which sent me to a rheumatologist,

who diagnosed mixed connective tissue disease, but that rheumatologist

was not simpatico with me, so I went to another, who reminded me he

had diagnosed fibro 7 years ago (which I had immediately ignored and

forgot ASAP in the intervening years), and he diagnosed RA & fibro.

That feels right, as far as a dx. So I guess I'm just saying that

your diagnosis might change, for one.

As far as joining a clinical study, this could be good but may not.

You'll just have to see what you learn. Mostly what I know of studies

is from my husband having prostate cancer. There, the studies were

*years* behind actual current therapies. Although most RA studies

I've seen are combinations of Mex & some other drug; that's probably

good IF you can take methotrexate (which I can't. I turned into a

hysterical wreck over several months, that went away within a week of

stopping mex.)

Anyway, you might go ahead and make an appointment with a 2nd

rheumatologist who takes Medicare. It will take months to get in; if

you like this doc and thrive under his care you can always cancel that

other appt.

As far as your life being over, I imagine you had pain for years. Now

that its identified you have an opportunity to get treated and your

quality of life may very well go up into something you had even

forgotten how it could be. I remember the day I woke up with NO

muscle pain (and it lasted all day)--I was shocked! Thrilled! Amazed!

Hopeful! I haven't had another of those days yet but now I know what

I'm shooting for. I am not at all saying not to have your despair and

fear; do. I just want to remind you that this will leave room for

other feelings and the benefits are here in this disease, or at least

in having a good diagnosis.

Also I am not sure why it feels like a death sentence. That would be

interesting to explore. Did you know someone who was terribly

disabled by this disease? I don't think that is the way it goes these

days.

Your cliche: What doesn't kill us makes us stronger!

love,

laurel

[Guest guest]

Hi , I am 27 and I was doggoned in July 2007. So I know exactly what you

are feeling. I use to cry almost every day and tell myself that I am too young.

Nobody in my family has RA, so I couldn't relate to anyone. On top of all of

this, I had a baby a few months before I was diagnosed. Every time I would see

the doctor, I would tell him I need to be able to take care of my son. I think

I was waiting for him to pull out a magic wand and say Poof the RA disappeared.

But of course none of that happened, but he did give me medication that helps

me get through the day. Now that I have had RA for a total of 6 months, I know

that positive thinking and support helps. So I am here if you need a friend

sea_angell_99 <twistednoof@...> wrote:

My name is , I live in Greenville,TX. I'm 31 and have had

lifelong epilepsy, chronic back and joint pain and was diagnosed with

RA just two and a half weeks ago.I don't know what to do really. All I

can think of is what I'll never do. I know I'm feeling sorry for

myself and of course like anything in life there will be adjustments.

At least I've been told sooo many times before. I hate cliches but I

could really use some right now. I am so scared and don't really have

any friends that understand anything about this. I wonder if I'd just

never gone to the doctor if I would still be this messed up right now.

I don't know. I apologize if this is not the type of stuff to be

posting here. I just need to talk to someone who at least understands

a little.

---------------------------------

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[Guest guest]

Hey angela,

I pass thru greenville almost every other weekend. We're close in age

and I have RA too. So your not alone. Oh, and I'm a lady, there's

been a little confusion bout that. So we probably have a lot in

common. I'd be glad to chat if you want.

--- In , " sea_angell_99 " <twistednoof@...>

wrote:

>

> My name is , I live in Greenville,TX. I'm 31 and have had

> lifelong epilepsy, chronic back and joint pain and was diagnosed with

> RA just two and a half weeks ago.I don't know what to do really. All I

> can think of is what I'll never do. I know I'm feeling sorry for

> myself and of course like anything in life there will be adjustments.

> At least I've been told sooo many times before. I hate cliches but I

> could really use some right now. I am so scared and don't really have

> any friends that understand anything about this. I wonder if I'd just

> never gone to the doctor if I would still be this messed up right now.

> I don't know. I apologize if this is not the type of stuff to be

> posting here. I just need to talk to someone who at least understands

> a little.

>

[Guest guest]

--- In , " sea_angell_99 " <twistednoof@...>

wrote:

>

> My name is , I live in Greenville,TX. I'm 31 and have had

> lifelong epilepsy, chronic back and joint pain and was diagnosed with

> RA just two and a half weeks ago.I don't know what to do really. All I

> can think of is what I'll never do. I know I'm feeling sorry for

> myself and of course like anything in life there will be adjustments.

> At least I've been told sooo many times before. I hate cliches but I

> could really use some right now. I am so scared and don't really have

> any friends that understand anything about this. I wonder if I'd just

> never gone to the doctor if I would still be this messed up right now.

> I don't know. I apologize if this is not the type of stuff to be

> posting here. I just need to talk to someone who at least understands

> a little.

>

,my name is Melynda im 38 & have had RA since i was 5.I live in

Corpus Christi,Tx.I use to feel sorry 4 myself as well but i did what i

needed to do.Ive had several surgeries & rehab. Ive come a long way

since then.Im married to a woderful man & have a beautiful lil

girl,Alyssa.Be tough dont give up & be true to yourself no matter what

anyone says.You can do anything u put your mind to.Do what u can do

right now & dont think of what u may not b able to do later!!!

Melynda<mapgamez@...

[Guest guest]

, we are neighbors, I am in Wills Point,!

I am 39

I got my diagnosis approx. 7 years ago and not much has changed.

I was at the doctor being treated and tested regularly before just like now.

I have different meds and some better days because of them, that's about it.

Not sure if that is very consoling but its true none the less

I have also been able to associate some of my preexisting problems with the

RA

It gives some explanation and somehow that helps. I am usually a lurker

here, but decided to join in a day or so ago and ask a question.

Its nice to meet you.

From: [mailto: ] On

Behalf Of mapgamez

Sent: Monday, January 28, 2008 9:17 PM

Subject: [ ] Re: Hi. I'm newly diagnosed and scared witless

--- In <mailto: %40> ,

" sea_angell_99 " <twistednoof@...>

wrote:

>

> My name is , I live in Greenville,TX. I'm 31 and have had

> lifelong epilepsy, chronic back and joint pain and was diagnosed with

> RA just two and a half weeks ago.I don't know what to do really. All I

> can think of is what I'll never do. I know I'm feeling sorry for

> myself and of course like anything in life there will be adjustments.

> At least I've been told sooo many times before. I hate cliches but I

> could really use some right now. I am so scared and don't really have

> any friends that understand anything about this. I wonder if I'd just

> never gone to the doctor if I would still be this messed up right now.

> I don't know. I apologize if this is not the type of stuff to be

> posting here. I just need to talk to someone who at least understands

> a little.

>

,my name is Melynda im 38 & have had RA since i was 5.I live in

Corpus Christi,Tx.I use to feel sorry 4 myself as well but i did what i

needed to do.Ive had several surgeries & rehab. Ive come a long way

since then.Im married to a woderful man & have a beautiful lil

girl,Alyssa.Be tough dont give up & be true to yourself no matter what

anyone says.You can do anything u put your mind to.Do what u can do

right now & dont think of what u may not b able to do later!!!

Melynda<mapgamez@... <mailto:mapgamez%40>

[Guest guest]

,

I am sorry for your diagnosis, but yes there is still hope so never

give up hope. There are a lot of more options out there these

days. The key is just finding the right therapy for you and most

times it is a combination therapy.

You will have bad days and good days. Hopefully, with a therapy that

works for you, there will be more good than bad. Be very grateful

for the good days and try to still do some of the things you enjoy

during those times. Even without a disease life itself has its ups

and downs and waves of problems that somtimes seem worse than a

disease.

I was diagnosed in 1996 and I still have days where I am just tired

of the pain and limitations, especially when there is a new

adjustment I have to make, like not being able to drive or pump gas

or, etc. Then i have days where I am ready to make the changes and

adaptations to survive this condition.

Living means different things to different people. Some want to

live a long life at all costs. Some want to live a quality life

even if for a short time. I believe you should have both. So will

always fight the disease as long as I am functioning and independent

enough to do so but at the same time preparing for whatever else may

happen.

Losing your health is a loss and like with any other loss you grieve

the loss. The trick is to try not to get stuck in your grief of

losing who you once were or your image of who you were.

Some seek out counseling to help with this, some meditate, pray,

whatever it takes to stay positive, stress gives you a flare and

makes the condition worse, so the less stress the better. At least

stress has been one of the exacerbating factors for me with RA flare-

ups. Can't get too upset, angry, into arguments, any extreme

emotion causes a reaction that usually results in a flare. So try

to keep it simple as much as I can. blowing off steam for short

periods as needed, so as not to explode all at once. It's mind,

body, and soul. The docs take of the body, you have to take care of

the rest.

Hope things are better today.

Hugs,

Ebony