Just joined the group

April 1, 2006

Hi Vivian!

I am located in ville....where are you?

They aren't doing anything at this point. The neurosurgeon was supposed to call

me back, but they have not. I am currently in the Shands healthcare system, but

I am going to change docs because I am getting very inferior care.

I think because I also have DDD and I can still function they are dismissive of

how much this has affected my everyday life. Any suggestions would be most

welcome. What is your story?

Annette

Message: 11

Date: Wed, 29 Mar 2006 19:27:20 -0800 (PST)

From: Vivian Harkness <vivianharkness@...>

Subject: Re: Just joined the group

What part of NE Florida? I am in SE Georgia!

Domino effect auto accidents are never fun and the mechanism of injury always

much worse for the people in the middle of it.

What does your doctor say about all of this? Any plans on what may be in the

future?

Symptoms always seem to vary as does the pain levels.

Glad you joined us!!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Annette M. Jaeger

NE FL ARPH Rep/ Home

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

" Life is not measured by the number of breaths we

take, but by the moments that take our breath away. "

May 8, 2009

Hello everyone. My name is Susie Bartholow and I was diagnosed with RA last

week. I live in the Ft. Worth, Texas area with my husband and 2 little

Chihuahuas. I have lots of questions and probably more as time goes by. I also

have Fibromyalgia, severe osteoporosis, DDD, DJD, IBS and now RA.

Here is my first question. My rheumatologist performed tons of blood tests

before diagnosing me. He told me that all of my signs and symptoms and MRIs,

CTs and x-rays showed me to have RA, but that my blood work showed negative for

RA. So he said what I actually have is " sero-negative " RA. So I have done some

research on this and what I read said that this was the kind of RA to have, if

you have it. However, I also read that when a person has sero-positive RA that

they need to be very concerned about the possibility of having Lupus.

This is all new to me, the RA thing. So could someone please explain to me if

the symptoms are different with sero-negative RA, can it turn into sero-positive

RA and what about the Lupus thing. What do I need to watch for.

I am really looking forward to learning more about RA and meeting people that

have it.

Thanks,

May 8, 2009

Welcome to the group, Susie. I'm sorry about all of your health problems.

I'm not sure where you read that information about lupus, but it isn't

true. People with RA don't have to worry about developing lupus. It's

actually very uncommon to have both diseases.

It is possible to go from seronegative RA to seropositive RA.

Not an MD

On Fri, May 8, 2009 at 5:41 PM, susbartholow <susbartholow@...> wrote:

>

> Hello everyone. My name is Susie Bartholow and I was diagnosed with RA last

> week. I live in the Ft. Worth, Texas area with my husband and 2 little

> Chihuahuas. I have lots of questions and probably more as time goes by. I

> also have Fibromyalgia, severe osteoporosis, DDD, DJD, IBS and now RA.

>

> Here is my first question. My rheumatologist performed tons of blood tests

> before diagnosing me. He told me that all of my signs and symptoms and MRIs,

> CTs and x-rays showed me to have RA, but that my blood work showed negative

> for RA. So he said what I actually have is " sero-negative " RA. So I have

> done some research on this and what I read said that this was the kind of RA

> to have, if you have it. However, I also read that when a person has

> sero-positive RA that they need to be very concerned about the possibility

> of having Lupus.

>

> This is all new to me, the RA thing. So could someone please explain to me

> if the symptoms are different with sero-negative RA, can it turn into

> sero-positive RA and what about the Lupus thing. What do I need to watch

> for.

>

> I am really looking forward to learning more about RA and meeting people

> that have it.

>

> Thanks,

May 8, 2009

I was posting to this message and " lost my message " if it posted with no

name, I am Deb from Ohio and wasn't done typing, I finally had

" positive bloodwork " about 3 years after I was originally diagnosed

--- In , " susbartholow " <susbartholow@...>

wrote:

>

> Hello everyone. My name is Susie Bartholow and I was diagnosed with RA

last week. I live in the Ft. Worth, Texas area with my husband and 2

little Chihuahuas. I have lots of questions and probably more as time

goes by. I also have Fibromyalgia, severe osteoporosis, DDD, DJD, IBS

and now RA.

>

> Here is my first question. My rheumatologist performed tons of blood

tests before diagnosing me. He told me that all of my signs and symptoms

and MRIs, CTs and x-rays showed me to have RA, but that my blood work

showed negative for RA. So he said what I actually have is

" sero-negative " RA. So I have done some research on this and what I read

said that this was the kind of RA to have, if you have it. However, I

also read that when a person has sero-positive RA that they need to be

very concerned about the possibility of having Lupus.

>

> This is all new to me, the RA thing. So could someone please explain

to me if the symptoms are different with sero-negative RA, can it turn

into sero-positive RA and what about the Lupus thing. What do I need to

watch for.

>

> I am really looking forward to learning more about RA and meeting

people that have it.

>

> Thanks,

>

May 9, 2009

Hi Doreen:

Yes, we were on the same group at one time, just can't remember which one

(isn't that awful, but that is the fibro fog). Yes, I have the Fibro to go

along with everything else. You have given me great info here, especially

about the meds. I hate the way they drug me, and make me gain weight. I

could stand a little weight gain, but not 20 pounds in 2 months and that is

what happened to me on the Elavil the first time I was on it. I will check

with my doctor about the injections. I already have to take injections for

my osteoporosis, so that is not a big issue to me. I explained to the

doctor how the med made me gain weight so fast and his response was, " Well

you could use a few pounds " . But my thought on that is what about 6 to 8

months down the road, when you start telling me that I need to " lose " some

weight. I don't want to even go that way.

Yes, pain is pain, is pain. This RA thing in my opinion is sort of like

fibro...no matter where you hurt and even though others can't see it, it is

still pain. I always knew that I had arthritis, but never thought about it

being RA. So now I am having to get used to the idea that has now become a

part of me with everything else. I guess one of my biggest fears is ending

up in an wheelchair, but if that happens, I will learn how to deal with it

then.

Thanks for the info and glad to run across you again. I think it was a

fibro group that we were one.

On Sat, May 9, 2009 at 8:00 AM, Mimi <mimi212@...> wrote:

> Welcome to the group, Susie!! I think I remember you from another group. I

> have sero-negative RA, too. I was diagnosed about 3 years ago. Because I

> don't have health insurance, I've been limited to what I can afford for

> medication and the online Rx cards help with discounts. I take MTX

> injections once a week and Sulfasalazine twice a day. I quit the Prednisone

> and backed off on the Neurontin (I also have FM) because of severe weight

> gain. I have degenerative changes in my spine and now in my foot that have

> been giving me a fit for quite a while now. I recently signed on with

> Enbrel's patient assistance program and look forward to starting it soon.

>

> I don't know about the differences between the two - all I know is how I

> feel. And from what I've read - pain is pain is pain - whether you're

> positive or negative. Perhaps those with RA+ have quicker joint destruction

> than those of us that are RA-, I don't know. As far as what to watch out

> for, I would just take it one day at a time. Work closely with your Rheumy

> and if you are experiencing something different or more severe, call them

> and see what they think.

>

> We are all more than willing to share our experiences and answer questions

> as best we can. I look forward to hearing more from you.

>

> Take care and God Bless.....Doreen

>

> Susie B - Texas

>

May 10, 2009

Hi Susie - Glad my memory hasn't totally failed me *lol* I pray you get the help

you need to deal with all of this RA and FM stuff without the weight gain. The

main thing is to find the right " cocktail " for you. Sometimes it takes a lot of

trial and error, but I pray eventually we all will find it. I KNOW there is a

" cocktail " for me and I'm praying this Enbrel will be the icing on this cake.

Something in your post made me think about this - have you ever heard about " The

Spoon Theory " ? http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

This story has become a mantra of sorts to me. It is so true and I have to

constantly remind myself. But, it helps so much!

Have a blessed day - good to see you again.....Doreen

>

> Hi Doreen:

>

> Yes, we were on the same group at one time, just can't remember

> which one (isn't that awful, but that is the fibro fog). Yes, I

> have the Fibro to go along with everything else. You have given me

> great info here, especially about the meds. I hate the way they

> drug me, and make me gain weight. I could stand a little weight

> gain, but not 20 pounds in 2 months and that is what happened to me

> on the Elavil the first time I was on it. I will check

> with my doctor about the injections. I already have to take

> injections for my osteoporosis, so that is not a big issue to me.

> I explained to the doctor how the med made me gain weight so fast

> and his response was, " Well you could use a few pounds " . But my

> thought on that is what about 6 to 8 months down the road, when you

> start telling me that I need to " lose " some weight. I don't want

> to even go that way.

>

> Yes, pain is pain, is pain. This RA thing in my opinion is sort of

> like fibro...no matter where you hurt and even though others can't

> see it, it is still pain. I always knew that I had arthritis, but

> never thought about it being RA. So now I am having to get used to

> the idea that has now become a part of me with everything else. I

> guess one of my biggest fears is ending up in an wheelchair, but if

> that happens, I will learn how to deal with it then.

>

> Thanks for the info and glad to run across you again. I think it

> was a fibro group that we were on.

May 10, 2009

Doreen:

Yes, I have read the Spoon story, but had forgotten how strong it related

what we go through. I read it again this morning and it really hit home

this time, as my symptoms have worsened since I read it the first time. This

is such a great way to explain to people how we have to spend our day. I

also knew that I had arthritis and the fibro, but getting the news of having

RA hit me a little harder this past two weeks. With each new pain I get I

seem to ask myself, " Is this from fibro, RA, osteoporosis, the DDD or the

DJD or just a " getting old " symptom. I never know the answer and probably

never will before the next new pain hits, but I know that I will just have

to learn to deal with...or in this case, watch my spoon count carefully.

Thanks for reminding me of this story, it is an excellent tool.

Hope you have a wonderful Mother's Day today. I will be spending this

afternoon with 2 of our 5 kids, the other 3 all live out of town. I am

blessed for having 5 wonderful, beautiful, healthy and caring kids....that's

the best Mother's Day present anyone could give me.

Love you all,

On Sun, May 10, 2009 at 7:41 AM, Mimi <mimi212@...> wrote:

> Hi Susie - Glad my memory hasn't totally failed me *lol* I pray you get the

> help you need to deal with all of this RA and FM stuff without the weight

> gain. The main thing is to find the right " cocktail " for you. Sometimes it

> takes a lot of trial and error, but I pray eventually we all will find it. I

> KNOW there is a " cocktail " for me and I'm praying this Enbrel will be the

> icing on this cake.

>

> Something in your post made me think about this - have you ever heard about

> " The Spoon Theory " ?

> http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf This

> story has become a mantra of sorts to me. It is so true and I have to

> constantly remind myself. But, it helps so much!

>

> Have a blessed day - good to see you again.....Doreen

>

> Susie B - Texas

>

May 11, 2009

Susie - I'm so happy that The Spoon Theory has give you the validation you

needed for our symptoms as well as the tools we all need to remember to get

through each and every day.

My Mother's Day was truly blessed as well. We spent the early part of the day

with hubby's mother (76) and grandmother (99) - they are such a joy. The heat

got to me though (98º) and I had to go home and rest for a while. Then the

evening was spent with my two youngest daughters (25, 16) - the older three

weren't able to make it. The girls gave me some very nice gifts (butterflies &

elephants - my favs), we ordered in pizza, watched AFV and thoroughly enjoyed

each others' company. I too, feel blessed with my family. God has been so good

to me.....Doreen

>

> Doreen:

>

> Yes, I have read the Spoon story, but had forgotten how strong it

> related what we go through. I read it again this morning and it

> really hit home this time, as my symptoms have worsened since I

> read it the first time. This is such a great way to explain to

> people how we have to spend our day. I also knew that I had

> arthritis and the fibro, but getting the news of having RA hit me a

> little harder this past two weeks. With each new pain I get I

> seem to ask myself, " Is this from fibro, RA, osteoporosis, the DDD

> or the DJD or just a " getting old " symptom. I never know the

> answer and probably never will before the next new pain hits, but I

> know that I will just have to learn to deal with...or in this case,

> watch my spoon count carefully.

> Thanks for reminding me of this story, it is an excellent tool.

>

> Hope you have a wonderful Mother's Day today. I will be spending

> this afternoon with 2 of our 5 kids, the other 3 all live out of

> town. I am blessed for having 5 wonderful, beautiful, healthy and

> caring kids....that's the best Mother's Day present anyone could

> give me.

>

> Love you all,

May 11, 2009

Hi Doreen,

I love reading your posts as they are always so upbeat and positive. I also

loved reading that spoon theory, doesn't that just say and describe RA to a T.

You are such an inspiration and a lovely giving person. I am so happy you had

such a lovely Mothers Day.

Love and hugs

From: Mimi <mimi212@...>

Subject: [ ] Re: Just joined the group

Date: Monday, 11 May, 2009, 12:35 PM