Re: New to the group, but not to RA

September 13, 2006

Welcome . I was about your age when I was diagnosed. I'm now

52. So glad you found us but sorry for the reasons you're here.

This is a very active group and has many wonderful and compassionate

members.

a

On Sep 13, 2006, at 1:15 AM, CHRISTINE BALLADARES wrote:

> Hello,

> I am 33 years old and was diagnosed with RA when I was 27. I

> thought I could handle it alone.....I am glad to know that there

> are other people out there that can relate to me. Thanks for any

> replies I may get.

>

September 14, 2006

Hi :

Welcome to the group! It is so great to be able to

come to this group and have people to talk with who

really understand where you are coming from, and can

relate to the pain, fatigue, and frustration that we

feel. You are not alone any longer! I have been in

the group for about 4 years now, and have learned so

much, and made many good friends, and I am sure you

will get a lot out of being here too!

Are you taking any medications for your RA? I sure

hope so because early aggressive treatment is the

best. I credit that to my still being able to live a

quality of life I enjoy. Not to say there is no more

pain, I have pain to a degree in some joint or another

daily, but it is so much better than it was. I also

have fibro and take meds for that which have really

helped with all that fibro brings to my life.

I am 52, married for 24 years to my best friend, and

have two great kids, a son 22, and a daughter 19.

They are the joy of my life. We live on a small farm

in southern california with horses, various fowl,

dogs, and I simply love it! They get me up in the

morning and keep me from simply sitting on my couch or

bed, which on some days is much more appealing that

getting up and hobbling around my back yard! I have

had RA for 7 years, and have also since been diagnosed

with Raynaud's (which I know was there long before the

RA), OA, and Fibromyalgia.

I hope to learn more about you - take care and we are

very happy to have you with us, but sorry for the

reason you are here.....

Kathe in CA

--- CHRISTINE BALLADARES <cbaldy32@...> wrote:

> Hello,

> I am 33 years old and was diagnosed with RA when I

> was 27. I thought I could handle it alone.....I am

> glad to know that there are other people out there

> that can relate to me. Thanks for any replies I may

> get.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

September 15, 2006

Thank you Kathe for such a great welcome.

This is the first group I have ever contacted. And just reading through some

of the messages has made me realize that I can still hang in there and keep

going.

Because even during the really bad days I know that there is someone else that

will understand.

I have been on every medication available. I am on Prednisone, methotrexate,

Humira,

Vicodin. The Humira is not working so I am going to be starting an Orencia

infusion treatment in two weeks. I've already tried Enbrel, Remicade and gold

shots....no help.

So we'll see what happens....I am keeping my hopes up. About three years ago I

had scleritis. I was told I would eventually be blind. The RA was eating away at

my eyes. The only way to stop it was to do chemotherapy for 7 months So I did

and thank God I still have my eyesight. So I figure it has to get better. At

least that is what I keep telling myself!

I am have been married for almost 14 years. We have a great 12 year old son

and a six year old daughter. A lot of times I find myself trying to hide how bad

I feel from them. I don't want them to see me hurting. I live in Southern

California as well.

I work full time and am a soccer mom 4 days a week. I think that a lot of

times I push myself very hard to try to be " normal " and not let my RA get to me.

My rheumy tells me that I am in denial and don't want to admit that I have a

disease. He is probably right.

I look forward to getting to know you better.Thanks for letting me ramble on

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi :

Welcome to the group! It is so great to be able to

come to this group and have people to talk with who

really understand where you are coming from, and can

relate to the pain, fatigue, and frustration that we

feel. You are not alone any longer! I have been in

the group for about 4 years now, and have learned so

much, and made many good friends, and I am sure you

will get a lot out of being here too!

Are you taking any medications for your RA? I sure

hope so because early aggressive treatment is the

best. I credit that to my still being able to live a

quality of life I enjoy. Not to say there is no more

pain, I have pain to a degree in some joint or another

daily, but it is so much better than it was. I also

have fibro and take meds for that which have really

helped with all that fibro brings to my life.

I am 52, married for 24 years to my best friend, and

have two great kids, a son 22, and a daughter 19.

They are the joy of my life. We live on a small farm

in southern california with horses, various fowl,

dogs, and I simply love it! They get me up in the

morning and keep me from simply sitting on my couch or

bed, which on some days is much more appealing that

getting up and hobbling around my back yard! I have

had RA for 7 years, and have also since been diagnosed

with Raynaud's (which I know was there long before the

RA), OA, and Fibromyalgia.

I hope to learn more about you - take care and we are

very happy to have you with us, but sorry for the

reason you are here.....

Kathe in CA

--- CHRISTINE BALLADARES <cbaldy32@...> wrote:

> Hello,

> I am 33 years old and was diagnosed with RA when I

> was 27. I thought I could handle it alone.....I am

> glad to know that there are other people out there

> that can relate to me. Thanks for any replies I may

> get.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

September 15, 2006

Thank you a,

I am sure that there is still a lot for me to learn and I appreciate the

openess that you all have. , I was wondering if you don't mind my asking what

medications that you are on?

Do you follow any kind of diet that has seemed to work for you. I just

recently gave up drinking diet soda and coffee and although that may not be very

helpful to RA I figure that it can't hurt.

a Papola <a54@...> wrote:

Welcome . I was about your age when I was diagnosed. I'm now

52. So glad you found us but sorry for the reasons you're here.

This is a very active group and has many wonderful and compassionate

members.

a

On Sep 13, 2006, at 1:15 AM, CHRISTINE BALLADARES wrote:

> Hello,

> I am 33 years old and was diagnosed with RA when I was 27. I

> thought I could handle it alone.....I am glad to know that there

> are other people out there that can relate to me. Thanks for any

> replies I may get.

>

September 16, 2006

:

Where in southern california do you live? I am in a

small unincorporated area in Riverside county between

Lake Elsinore and Murrieta, called Wildomar. I have

made a friend here through the group named and

she lives up in the Sun City area. We have met once

and talk often by phone. You can make some great

friends here in this group. There is also another

person in this group I write to, and one I write and

talk to occasionally who lives further away, or I

would be trying to get together with her too! It's

great to have people nearby who you can actually talk

with rather than just email - makes it so much more

meaningful.

Sounds like you have your hands full! You are a very

busy lady with your children. That is great - carry

on as long as you can. That is wonderful that you

were able to save your eyesight. I have cataracts

which my opthalmolgist attributes to Prednisone use

primarily, one has been repaired, and the other might

need it next year. I am only 52 so this was not

something I was prepared for, but it is another RA

related problem.

Denial is a problem we all struggle with - this is a

hard thing to accept - a lifelong illness with no

cure, and possible disability? Not exactly what any

of us hand in mind to go through in our lives. You

say you push yourself to remain " normal " which is

great, but do get the rest you need as well, okay?

You can run yourself into the ground, suffer a flare,

and be out of commission for a few days. Take it easy

if possible, and pace yourself. Adjust and adapt, as

Dennis says, is the best way to live with RA.

I will be keeping you in my prayers that the Orencia

is your miracle drug! I think you will be among the

first of our group to be trying this new biologic, and

I look forward to hearing how it goes with you. Who

knows if my Enbrel will someday poop out, and that

might be an option for me. Take care and hang in

there -

Kathe in CA

--- CHRISTINE BALLADARES <cbaldy32@...> wrote:

> Thank you Kathe for such a great welcome.

> This is the first group I have ever contacted. And

> just reading through some of the messages has made

> me realize that I can still hang in there and keep

> going.

> Because even during the really bad days I know

> that there is someone else that will understand.

> I have been on every medication available. I am on

> Prednisone, methotrexate, Humira,

> Vicodin. The Humira is not working so I am going

> to be starting an Orencia infusion treatment in two

> weeks. I've already tried Enbrel, Remicade and gold

> shots....no help.

> So we'll see what happens....I am keeping my hopes

> up. About three years ago I had scleritis. I was

> told I would eventually be blind. The RA was eating

> away at my eyes. The only way to stop it was to do

> chemotherapy for 7 months So I did and thank God I

> still have my eyesight. So I figure it has to get

> better. At least that is what I keep telling myself!

> I am have been married for almost 14 years. We

> have a great 12 year old son and a six year old

> daughter. A lot of times I find myself trying to

> hide how bad I feel from them. I don't want them to

> see me hurting. I live in Southern California as

> well.

> I work full time and am a soccer mom 4 days a

> week. I think that a lot of times I push myself very

> hard to try to be " normal " and not let my RA get to

> me.

> My rheumy tells me that I am in denial and don't

> want to admit that I have a disease. He is probably

> right.

> I look forward to getting to know you

> better.Thanks for letting me ramble on

>

> Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi :

>

> Welcome to the group! It is so great to be able to

> come to this group and have people to talk with who

> really understand where you are coming from, and can

> relate to the pain, fatigue, and frustration that we

> feel. You are not alone any longer! I have been in

> the group for about 4 years now, and have learned so

> much, and made many good friends, and I am sure you

> will get a lot out of being here too!

>

> Are you taking any medications for your RA? I sure

> hope so because early aggressive treatment is the

> best. I credit that to my still being able to live a

> quality of life I enjoy. Not to say there is no more

> pain, I have pain to a degree in some joint or

> another

> daily, but it is so much better than it was. I also

> have fibro and take meds for that which have really

> helped with all that fibro brings to my life.

>

> I am 52, married for 24 years to my best friend, and

> have two great kids, a son 22, and a daughter 19.

> They are the joy of my life. We live on a small farm

> in southern california with horses, various fowl,

> dogs, and I simply love it! They get me up in the

> morning and keep me from simply sitting on my couch

> or

> bed, which on some days is much more appealing that

> getting up and hobbling around my back yard! I have

> had RA for 7 years, and have also since been

> diagnosed

> with Raynaud's (which I know was there long before

> the

> RA), OA, and Fibromyalgia.

>

> I hope to learn more about you - take care and we

> are

> very happy to have you with us, but sorry for the

> reason you are here.....

>

> Kathe in CA

>

> --- CHRISTINE BALLADARES <cbaldy32@...>

> wrote:

>

> > Hello,

> > I am 33 years old and was diagnosed with RA when I

> > was 27. I thought I could handle it alone.....I am

> > glad to know that there are other people out there

> > that can relate to me. Thanks for any replies I

> may

> > get.

> >

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

> > removed]

> >

>

> __________________________________________________

>

September 28, 2006

Have you tried " wax therapy " for your hands, it did wonders for me when I had

trouble many years ago. You can find it at most major pharmacies, or maybe even

Walmart. It's an electric warmer and you heat up wax, dip your hands in it

quickly, several times over until there is a thick coating of wax on your hands,

then wrap them in plastic wrap, or the cheapo gloves that come with the warmer.

Relax and let the heat penetrate. It can't hurt to try, it's not terribly

expensive. Just be VERY careful around children, it can get hot enough to burn

their delicate sking.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

----- Original Message -----

September 28, 2006

Hi :

Yep, we are neighbors! I am also in touch with

another member of our group, who lives in Sun City,

and have even gotten to meet her once. We have plans

to meet again next week, if all goes well. Maybe we

can all get together sometime! If you would like my

phone number so we can talk, email me privately and I

will give it to you. Hope that today is a better day

for you -

Kathe in CA

--- CHRISTINE BALLADARES <cbaldy32@...> wrote:

> Hi Kathe,

> I am sorry that I have not responded sooner. I

> have been feeling really down the last couple of

> weeks and completely ignored my computer. I hope

> that you are feeling as well as can be expected.

> I actually live in Riverside county. We moved here

> about 2 years ago. I live in Murrieta and I know

> that is really close to Wildomar.

> I have 1 sister and 2 brothers and my

> father.....my mom died a long time ago from cancer.

> I was 17 when she passed away. It's really hard to

> talk to my family about RA.

> They think that it is mind over matter and if I

> really wanted to cure myself then I could. My dad is

> always reading about natural remedies that will cure

> me and when i try them and I still feel bad and I

> can't use my hands he tells me that I must really

> want to be sick and that I am not trying hard

> enough. So I have made myself over the years hide as

> much of the pain as I can and not let anyone see

> what I go through. Sometimes in the morning I have

> to be at work by 8:00 am so I will wake up at 4:30

> am so I can run my hands in hot water for half an

> hour to loosen them up (not really working at this

> point) but I gives me a few hours to walk around and

> loosen up.

> I go in for my first infusion of Orencia this

> Friday. I am very nervous about it as I have had an

> allergic reaction to another infusion I tried about

> 3 years ago (It was a drug called Remicade) and I

> actually stopped breathing. very scary.

> Thank you for letting me vent and sorry that this

> is so long.

> God bless you,

>

> Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> :

>

> Where in southern california do you live? I am in a

> small unincorporated area in Riverside county

> between

> Lake Elsinore and Murrieta, called Wildomar. I have

> made a friend here through the group named and

> she lives up in the Sun City area. We have met once

> and talk often by phone. You can make some great

> friends here in this group. There is also another

> person in this group I write to, and one I write and

> talk to occasionally who lives further away, or I

> would be trying to get together with her too! It's

> great to have people nearby who you can actually

> talk

> with rather than just email - makes it so much more

> meaningful.

>

> Sounds like you have your hands full! You are a very

> busy lady with your children. That is great - carry

> on as long as you can. That is wonderful that you

> were able to save your eyesight. I have cataracts

> which my opthalmolgist attributes to Prednisone use

> primarily, one has been repaired, and the other

> might

> need it next year. I am only 52 so this was not

> something I was prepared for, but it is another RA

> related problem.

>

> Denial is a problem we all struggle with - this is a

> hard thing to accept - a lifelong illness with no

> cure, and possible disability? Not exactly what any

> of us hand in mind to go through in our lives. You

> say you push yourself to remain " normal " which is

> great, but do get the rest you need as well, okay?

> You can run yourself into the ground, suffer a

> flare,

> and be out of commission for a few days. Take it

> easy

> if possible, and pace yourself. Adjust and adapt, as

> Dennis says, is the best way to live with RA.

>

> I will be keeping you in my prayers that the Orencia

> is your miracle drug! I think you will be among the

> first of our group to be trying this new biologic,

> and

> I look forward to hearing how it goes with you. Who

> knows if my Enbrel will someday poop out, and that

> might be an option for me. Take care and hang in

> there -

>

> Kathe in CA

>

> --- CHRISTINE BALLADARES <cbaldy32@...>

> wrote:

>

> > Thank you Kathe for such a great welcome.

> > This is the first group I have ever contacted. And

> > just reading through some of the messages has made

> > me realize that I can still hang in there and keep

> > going.

> > Because even during the really bad days I know

> > that there is someone else that will understand.

> > I have been on every medication available. I am on

> > Prednisone, methotrexate, Humira,

> > Vicodin. The Humira is not working so I am going

> > to be starting an Orencia infusion treatment in

> two

> > weeks. I've already tried Enbrel, Remicade and

> gold

> > shots....no help.

> > So we'll see what happens....I am keeping my hopes

> > up. About three years ago I had scleritis. I was

> > told I would eventually be blind. The RA was

> eating

> > away at my eyes. The only way to stop it was to do

> > chemotherapy for 7 months So I did and thank God I

> > still have my eyesight. So I figure it has to get

> > better. At least that is what I keep telling

> myself!

> > I am have been married for almost 14 years. We

> > have a great 12 year old son and a six year old

> > daughter. A lot of times I find myself trying to

> > hide how bad I feel from them. I don't want them

> to

> > see me hurting. I live in Southern California as

> > well.

> > I work full time and am a soccer mom 4 days a

> > week. I think that a lot of times I push myself

> very

> > hard to try to be " normal " and not let my RA get

> to

> > me.

> > My rheumy tells me that I am in denial and don't

> > want to admit that I have a disease. He is

> probably

> > right.

> > I look forward to getting to know you

> > better.Thanks for letting me ramble on

> >

> > Kathe Sabetzadeh <lv2ryd@...> wrote:

> >

> > Hi :

> >

> > Welcome to the group! It is so great to be able to

> > come to this group and have people to talk with

> who

> > really understand where you are coming from, and

> can

> > relate to the pain, fatigue, and frustration that

> we

> > feel. You are not alone any longer! I have been in

> > the group for about 4 years now, and have learned

> so

> > much, and made many good friends, and I am sure

> you

> > will get a lot out of being here too!

> >

> > Are you taking any medications for your RA? I sure

> > hope so because early aggressive treatment is the

> > best. I credit that to my still being able to live

> a

> > quality of life I enjoy. Not to say there is no

> more

> > pain, I have pain to a degree in some joint or

> > another

> > daily, but it is so much better than it was. I

> also

> > have fibro and take meds for that which have

> really

> > helped with all that fibro brings to my life.

> >

> > I am 52, married for 24 years to my best friend,

> and

> > have two great kids, a son 22, and a daughter 19.

> > They are the joy of my life. We live on a small

> farm

> > in southern california with horses, various fowl,

> > dogs, and I simply love it! They get me up in the

> > morning and keep me from simply sitting on my

> couch

> > or

> > bed, which on some days is much more appealing

> that

> > getting up and hobbling around my back yard! I

> have

> > had RA for 7 years, and have also since been

> > diagnosed

> > with Raynaud's (which I know was there long before

> > the

> > RA), OA, and Fibromyalgia.

> >

> > I hope to learn more about you - take care and we

> > are

> > very happy to have you with us, but sorry for the

> > reason you are here.....

> >

> > Kathe in CA

> >

> > --- CHRISTINE BALLADARES <cbaldy32@...>

> > wrote:

> >

> > > Hello,

> > > I am 33 years old and was diagnosed with RA when

> I

> > > was 27. I thought I could handle it alone.....I

> am

> > > glad to know that there are other people out

> there

> > > that can relate to me. Thanks for any replies I

> > may

> > > get.

> > >

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

> > > removed]

> > >

> >

> > __________________________________________________

> >

September 29, 2006

Hi everyone,

I don't remember who asked, but yes I do have RA, none of the other

immune suppressant diseases though. I think being paralyzed and

having RA is enough!!!

Many people here have talked about relationships and RA. My story

goes like this:

I was in a relaitonship for 4 yrs and was the emotional and physical

bedrock of the relationship. I am a people-pleaser to the core and I

did it all in the relationship. Yep, I had a full-time job as a

counselor/case manager and I did the majority of the cleaning,

laundry, cooking and shopping - all while

being in a wheelchair. I did this for 4 years and then the fatigue

began. I had suffered from tendonitis in my shoulders and carpal

tunnel in my hands(from pushing my

chair for 15 years no doubt) the new aches and the fatigue were

different though. I would come home and pretty much fix dinner, eat

and collapse. I squeezed all of

the other things in on the weekends, my partner was of no help. If

things didn't get done, she didn't pick up the slack. It was so hard

for me to let things go so I pushed

myself. This was no liife for me. It lasted about 1 yr before I

finally had a breakdown, cried uncontrollably every morning before

work. Then I took two weeks of disability leave. Went to the Dr,

went to other Dr's and as I've mentioned here was misdiagnosed, so I

had no reason for the pain and fatigue other than hypothyroid and

chronic pain from life in a wheelchair. Finally I went to another

rheumatologist because my primary Dr. thought maybe it was

fibromyalgia. Then I was diagnosed finally.

But I'm getting ahead of myself. I and others blamed my condition on

life in a wheelchair, this really bothered me as I saw plenty of

other people with spinal cord injury who lived and worked for many

more years than myself. I felt so inadequate, and my partner felt I

was inadequate. I was no longer the caregiver, housecleaner, cook

etc...She got very resentful and angry at me. Even after my dx, she

wasn't any better, didn't learn about RA, never picked up the slack.

She simply wasn't able to step up to the plate and fill the role of

caregiver and nurturer. Some people just can't do that. It's very

hard for me to give up control and let myself be taken care of.

After I left work permanently, I started my jewelry business.

Everyone around me interpreted this wrongly. From their perception

it seemed like I left my job, went on disability and pursued what I

really wanted to do. After all who hasn't dreamt of working from

home at their " hobby " ?

Eventually things got so bad that she hit me; after months of

therapy, she had another explosion while I was on the phone with a

friend who heard it all. I was on the phone looking for someone to

help me setup for my art show that weekend. My partner told me last

minute that she wasn't going to do it. She yelled into the phone

" AWWWW are you calling someone to feel sorry for you? " My friend

helped convince me that I was being abused emotionally. I decided

that even if I had to eat ramen noodles day and night I had to get

out of there.

The rest is history. I have an incredible partner now. She would do

anything for me and I her. I count my blessings daily. Today we

celebrate 4 years together.

People change when you get sick, you change too. Old roles are

tested, most people deal with it and trade roles, some are just

unable to handle the new life. This is an unfortunate fact and

devastating to everyone.

I apologize if I've been too frank, I suppose that's the counselor

talking.

Peace & Love,

River

September 29, 2006

River:

Had to write back to you and tell you how your struggle touched me. Although

I am not physically disabled, my first husband was physically and mentally

abusive. He was also neglectful of his family responsibilities. I have always

carried the weight. Always worked, always there for my kids (4 of them), so I

understand how hard it is to ask for help.

But like you, God sent a wonderful person into my life who had some problems

of his own (insulin dependent diabetic, etc.). I had to learn about all his

needs and try to help him. Then, when I was diagnosed with all my

immuno-suppressive junk, he, with all his health problems, stepped up to the

plate and now we spend our time caring for each other. It's wonderful to be

with someone who truly loves you the way you love them and is willing to give of

themselves for you!

I am sorry that you went through such a tough time...I know the pain, but

looking back, it has made us appreciate the beautiful people we share our lives

with now. I thank God just about every day for my husband. We've been married

almost nine years now. Our adoption hearing is in November (he's adopting all 4

of my kids) and we'll finally and legally be a family.

Have a blessed day!

in Texas

River Wolfe <river61@...> wrote: