RE: Oh, No! Another Newbie Intro!

[Guest guest]

Hi Dianne,

Welcome to our group. Sorry for the reason that you had to find us. Make

sure to tell the rheumy about all of your symptoms and any meds or treatments

that made you feel any better or worse. I write mine down as I think of

them. If you don't understand or accept an answer that he/she gives you,

tell him/her. It is always best to be safe than sorry, and very important

that you understand what is going on. I hope you feel better soon.

Love and Hugs

Stacey in PA

[Guest guest]

Hi Diane, and welcome to the group! You'll find the most up to date

information courtesy of our wonderful moderators, and a. In

addition, you'll meet some of the greatest friends you can find. If you're

having a tough day, feel free to vent. We've all been there, and can

empathize.

It's encouraging that you're doing so well, and hopefully you'll get in with

a good rheumatologist and be doing even better. The medications to treat

RA have come a long way in the past 5 years.

Love and hugs,

Carol

[ ] Oh, No! Another Newbie Intro!

Hello, Everyone,

My name is Dianne. I am 56 and married for 35 years. My husband

and I make our home in the desert of California on the border with Arizona.

Yes, this is a great location if you have arthritis, which probably explains

part of the delay in getting to a diagnosis. No matter. I figured out what

was going on with me, then went and told my doctor about it. Ha ha!

All of this has been a slow progression beginning with my question,

" Could this be CFS or Fibromyalgia? " back in the early 80s. All of the

signs were present, but my doctors didn't get it, so little was done. In

1991 lab tests were done and the results were no surprise to me, but shocked

my doctors into action. Hashimoto's Thyroiditis was the diagnosis and

medication was prescribed. The medication did not help much. Eight years

later I was able to prevail upon a new doctor to change the medication. We

were both surprised at how quickly things began to get just a bit better.

The RA diagnosis was suspected for years, but was not confirmed

until this year. Funny thing is that the tests had been done earlier, but

there was no RA " marker " found. Now it is there. Does that mean something?

Periodically, but not on a predictable basis, I would become

" slightly " ill and have the early signs of coming down with the flu. The

flu was not the problem -- nobody catches the flu multiple times in the same

year. I was getting a weird rash on my face, but it would be gone before

the doctor saw me. Well, he got to see it this year and nearly fell over

himself apologizing to me for missing it. Lupus SLE is now added to the

list of active diagnoses.

I take two medications daily, Armour Thyroid and Celebrex (200 - 400

mg p. day, depending on the level of pain). they both work well, I guess,

but I am again at the point where the fatigue and pain are beyond what the

meds were helping with. I suspect that the Celebrex may be causing problems

with my digestive system, but the alternative to taking it is to take

steroids, which have way too many side affects on me. Weight gain is the

big one and I am already way over my ideal weight.

Added to the " mix " is Osteoarthritis. The osteo problems are in my

knees, spine, hips, feet, and ankles. The worst problems are with the knees

and result from multiple injuries and surgeries. An appointment is set for

11/14 for the MRI that will tell the doctors what is going on with the knees

now. The pain in the left knee is really slowing me down. A referral to an

orthopedic surgeon will follow. It is suspected that a piece of cartilage

is now " floating " in the left knee.

Overall, life is good! In spite of the problems, I can still do

pretty much what I want to do when I want to do it. at least that was true

until the past six months or so. I still do the usual things, but do them

slower and with more awareness of the pain.

My doctor will be referring my care for the RA and Lupus to a

Rheumatologist. I am not unhappy with that, but would like to know what to

expect and what questions I should ask him/her when I get there.

Any suggestions with regard to seeing the specialist would be

appreciated.

Thanks for you time,

Dianne

[Guest guest]

Hi Dianne,

Welcome, I'm pretty new myself and live in the Ca. desert, too (near

AFB). I spend most of my time reading everyone else's email and saying little

prayers for all. It sounds as though you have a very full plate. I can

understand the thing with the steroids, hopefully you will be put on a suitable

sub for the celebrex, if needed.

Good luck with your appointment.

[ ] Oh, No! Another Newbie Intro!

Hello, Everyone,

My name is Dianne. I am 56 and married for 35 years. My husband

and I make our home in the desert of California on the border with Arizona.

Yes, this is a great location if you have arthritis, which probably explains

part of the delay in getting to a diagnosis. No matter. I figured out what

was going on with me, then went and told my doctor about it. Ha ha!

All of this has been a slow progression beginning with my question,

" Could this be CFS or Fibromyalgia? " back in the early 80s. All of the

signs were present, but my doctors didn't get it, so little was done. In

1991 lab tests were done and the results were no surprise to me, but shocked

my doctors into action. Hashimoto's Thyroiditis was the diagnosis and

medication was prescribed. The medication did not help much. Eight years

later I was able to prevail upon a new doctor to change the medication. We

were both surprised at how quickly things began to get just a bit better.

The RA diagnosis was suspected for years, but was not confirmed

until this year. Funny thing is that the tests had been done earlier, but

there was no RA " marker " found. Now it is there. Does that mean something?

Periodically, but not on a predictable basis, I would become

" slightly " ill and have the early signs of coming down with the flu. The

flu was not the problem -- nobody catches the flu multiple times in the same

year. I was getting a weird rash on my face, but it would be gone before

the doctor saw me. Well, he got to see it this year and nearly fell over

himself apologizing to me for missing it. Lupus SLE is now added to the

list of active diagnoses.

I take two medications daily, Armour Thyroid and Celebrex (200 - 400

mg p. day, depending on the level of pain). they both work well, I guess,

but I am again at the point where the fatigue and pain are beyond what the

meds were helping with. I suspect that the Celebrex may be causing problems

with my digestive system, but the alternative to taking it is to take

steroids, which have way too many side affects on me. Weight gain is the

big one and I am already way over my ideal weight.

Added to the " mix " is Osteoarthritis. The osteo problems are in my

knees, spine, hips, feet, and ankles. The worst problems are with the knees

and result from multiple injuries and surgeries. An appointment is set for

11/14 for the MRI that will tell the doctors what is going on with the knees

now. The pain in the left knee is really slowing me down. A referral to an

orthopedic surgeon will follow. It is suspected that a piece of cartilage

is now " floating " in the left knee.

Overall, life is good! In spite of the problems, I can still do

pretty much what I want to do when I want to do it. at least that was true

until the past six months or so. I still do the usual things, but do them

slower and with more awareness of the pain.

My doctor will be referring my care for the RA and Lupus to a

Rheumatologist. I am not unhappy with that, but would like to know what to

expect and what questions I should ask him/her when I get there.

Any suggestions with regard to seeing the specialist would be

appreciated.

Thanks for you time,

Dianne

[Guest guest]

Hi, Stacey,

How did you fare with the weather problems back there? I pray that

everything is okay where you are.

I have been keeping a journal and will be doing a " summary " as you

suggested to take to the Rheumy with me. My family doctor has been treating

all of this and we have been doing quite well, but he and I think that it

has gotten beyond what he can deal with. His biggest concern is making sure

that I am getting the care I need, not just being sent to someone else to

" take over " , as he will still be coordinating my care. Yes, I really like

our family doctor. He has a heart, a conscience, and a brain and uses all

of them.

My mother had RA diagnosed when she was in her 30s and I am grateful

that I " escaped " having the problems that she had while trying to raise a

family. There was much less that could be done about it back then.

At this point, we know that there are a whole bunch of things going

on with me, but my knees are the priority so that I can walk and drive in

some degree of comfort. So, while both referrals will be made at the same

time, I will make it clear to the Rheumy that the orthopedic surgeon will be

dealing with the knees. I will expect the two of them to share what is

going on with each other and with my family doctor. They don't have to like

that. They will do that or be fired.

Medical care has been a problem area for me for years. Most of the

problems encountered had to do with our insurance through EPO and PPO

coverage (like an HMO but with a few great differences). Over the years, I

figured out how to make it work for me rather than just let the system

control things. It almost killed me (literally), but my husband and I made

them do what was right rather than what was expedient and cheap for the

insurance carrier.

At this point, I am disabled and receiving SSDI, so I now have three

insurance carriers. That used to be a paperwork nightmare, but it has

gotten better and I have a good system for tracking things.

I look forward to getting to know you. Maybe we will meet during

one of my trips around the country with hubby on his big truck.

Dianne/CA

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

From: <bintherdunit@...>

> Hi Dianne,

> Welcome to our group. Sorry for the reason that you had to find us. Make

> sure to tell the rheumy about all of your symptoms and any meds or

treatments

> that made you feel any better or worse. I write mine down as I think of

> them. If you don't understand or accept an answer that he/she gives you,

> tell him/her. It is always best to be safe than sorry, and very important

> that you understand what is going on. I hope you feel better soon.

> Love and Hugs

> Stacey in PA

>

>

[Guest guest]

Hi, Carol,

Thanks for the welcome! I don't usually do a lot of venting about

all of this, but there are days when I really want to! LOL!

My doctor and I discussed this at length during one of my visits.

His experience has been that the problems show up pretty early and that by

my age, one is running out of things to try. So, yes, up to this point, I

have been quite fortunate and thank God for that. However, there are some

odd circumstances that I have to deal with that are going to make things

difficult where medications are concerned. My doctor has warned me that

this is going to be an " adventure " . Hmmm...

I am going to be doing some more research on all of this and will

probably have scads of questions. So, you all keep your keyboards warmed

up! Ha ha!

Dianne

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

From: " Carol " <carol@...>

> Hi Diane, and welcome to the group! You'll find the most up to date

> information courtesy of our wonderful moderators, and a. In

> addition, you'll meet some of the greatest friends you can find. If

you're

> having a tough day, feel free to vent. We've all been there, and can

> empathize.

>

> It's encouraging that you're doing so well, and hopefully you'll get in

with

> a good rheumatologist and be doing even better. The medications to treat

> RA have come a long way in the past 5 years.

>

> Love and hugs,

>

> Carol

>

[Guest guest]

Hi Dianne and welcome. Your story of delayed diagnoses is all to common

around here. Sometimes it takes time to figure out what is going on with

autoimmune diseases. I¹m glad to hear that you¹re able to do what you want

and hope it continues to not limit you.

The rheumatologist will run tests, some will be a repeat of what your family

doctor has done. Based on a physical examination, your history and test

results, hopefully you¹ll get a diagnosis and thus, proper treatment.

Celebrex may help with the pain, but isn¹t doing anything to halt the

progression of the disease. Others on the list have given you great advise

as to what to ask the rheumatologist. Hope the appointment goes well.

a

> Hello, Everyone,

>

> My name is Dianne. I am 56 and married for 35 years. My husband

> and I make our home in the desert of California on the border with Arizona.

> Yes, this is a great location if you have arthritis, which probably explains

> part of the delay in getting to a diagnosis. No matter. I figured out what

> was going on with me, then went and told my doctor about it. Ha ha!

>

> All of this has been a slow progression beginning with my question,

> " Could this be CFS or Fibromyalgia? " back in the early 80s. All of the

> signs were present, but my doctors didn't get it, so little was done. In

> 1991 lab tests were done and the results were no surprise to me, but shocked

> my doctors into action. Hashimoto's Thyroiditis was the diagnosis and

> medication was prescribed. The medication did not help much. Eight years

> later I was able to prevail upon a new doctor to change the medication. We

> were both surprised at how quickly things began to get just a bit better.

>

> The RA diagnosis was suspected for years, but was not confirmed

> until this year. Funny thing is that the tests had been done earlier, but

> there was no RA " marker " found. Now it is there. Does that mean something?

>

> Periodically, but not on a predictable basis, I would become

> " slightly " ill and have the early signs of coming down with the flu. The

> flu was not the problem -- nobody catches the flu multiple times in the same

> year. I was getting a weird rash on my face, but it would be gone before

> the doctor saw me. Well, he got to see it this year and nearly fell over

> himself apologizing to me for missing it. Lupus SLE is now added to the

> list of active diagnoses.

>

> I take two medications daily, Armour Thyroid and Celebrex (200 - 400

> mg p. day, depending on the level of pain). they both work well, I guess,

> but I am again at the point where the fatigue and pain are beyond what the

> meds were helping with. I suspect that the Celebrex may be causing problems

> with my digestive system, but the alternative to taking it is to take

> steroids, which have way too many side affects on me. Weight gain is the

> big one and I am already way over my ideal weight.

>

> Added to the " mix " is Osteoarthritis. The osteo problems are in my

> knees, spine, hips, feet, and ankles. The worst problems are with the knees

> and result from multiple injuries and surgeries. An appointment is set for

> 11/14 for the MRI that will tell the doctors what is going on with the knees

> now. The pain in the left knee is really slowing me down. A referral to an

> orthopedic surgeon will follow. It is suspected that a piece of cartilage

> is now " floating " in the left knee.

>

> Overall, life is good! In spite of the problems, I can still do

> pretty much what I want to do when I want to do it. at least that was true

> until the past six months or so. I still do the usual things, but do them

> slower and with more awareness of the pain.

>

> My doctor will be referring my care for the RA and Lupus to a

> Rheumatologist. I am not unhappy with that, but would like to know what to

> expect and what questions I should ask him/her when I get there.

>

> Any suggestions with regard to seeing the specialist would be

> appreciated.

>

> Thanks for you time,

>

> Dianne

>

>

>

[Guest guest]

Hi Dianne,

We had some lightning and thunder with high winds, but not much more. We

were lucky. There was a tornado F2 in northwest PA that did some pretty bad

damage. But we did ok.

I am glad to hear that you are keeping a journal. When I was first

diagnosed, I was so confused and there was so much to keep track of, that I

thought I was going crazy. I called it TMI (too much input). The journal

helped a lot, because I could read the info when I was calm enough to know

what it meant. LOL. My knees were the first affected also, then the other

joints just joined the party. My grandmother had terrible RA. Back then

they just told her she had arthritis and left it at that. Her hands were so

gnarled and twisted. Now, I wonder how she did it. She only took aspirin

for pain. There wasn't much more than that back then. But she was a

wonderful, productive woman. She could cook the best tasting foods. And she

never measured anything. I miss her terribly. But I know that she is the

one looking over me and helping me to deal with this horrible disease.

Love and Hugs

Stacey in PA

[Guest guest]

By the way, if you ever plan to be in sw PA, let me know. I'd love to meet

you and your hubbie.

Love and Hugs

Stacey in PA

[Guest guest]

Hi, Stacey,

We kiddingly refer to my husband's driver manager as our " travel

agent " when I am on the truck. Last December we asked him to find us a trip

up to Idaho. He came back with three choices: New Jersey, Chicago, or

Atlanta. I hadn't seen snow since 1978, so we opted for New Jersey. We

never saw any snow all the way across the country on the eastbound leg, but

we did get to outrun a blizzard that was trying to bury Iowa when we got the

return trip back out to Fullerton, CA! Ha ha!

I have a laptop computer that can travel with me in the truck so I

can get my email. Isn't technology grand? I carry a cell phone (so does

hubby, but his is for work and mine is for " whatever " ). I will send the

contact information when we head out in December. That is assuming that I

will be able to go with him then.

Dianne

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

From: <bintherdunit@...>

> By the way, if you ever plan to be in sw PA, let me know. I'd love to

meet

> you and your hubbie.

> Love and Hugs

> Stacey in PA

>

>