RE: (unknown)

[Guest guest]

Hi ,

My doctor is still trying to get me an appointment with an

endocrinologist to decide what to do with the thyroid. I am, however,

feeling less tired...not sure why, maybe just getting used to the feeling. I

have decided to go ahead and start one of the murals I'd committed to this

Monday morning. I will probably only work on it for half a day at a time to

see how it goes. Wish me luck, and thanks for asking how I am. Annette

(unknown)

Morning! oops- i mean afternoon. I got up very late today.Teddi, you

do get to stay inside with I hope AC? Ha- I've had blizzards,

tornadoes, hurricanes, heat, well minus 0 temps- most everything all

you guys have wherever you are- drought, floods, seems these last 10

or so years one never, ever knows what the weather will bring. Keeps

things from being boring.

Was there a HRT article here? I missed it--- Teddi, how long have you

been on Lipitor? Some people with myo cannot take it.

Annette, how's your thyroid? Anne-Marie, are you healing up, I hope?

I actually didn't feel too bad yesterday- had a long nap, so that

really helped. Later- <3

[Guest guest]

I've been on Lipitor at least 3 yrs.....it got my

cholestrol down from over 300 to 180.

Dr just took me off it and will check cholestrol

in 6 mo to see if I need to go back on it

Oh yes, I spend my summers in my recliner

in my AC house.......come to think of it...I

spend my winters there also...LOL

Teddi

mailto:teddifromok@...

[Guest guest]

Hi ... Gosh, that doctor almost sounds like the jerk I use to have

for years. Always talking down to me and

telling me nothing was wrong. Even when I couldn't breath... he just

told me to learn to live with it. Oh right! Now, I can talk to my

doctors, which I love. I think you have to go into a doctors office and

take charge. The first appt. will tell a lot. Ask questions and if

he's reluctant to answer, tell him that you're the type of person that

NEEDS TO KNOW the reasons behind you feeling ill. It's not in your

head. Take charge kiddo... it really works.

The other doctor you had was a clod! Doctors forget that other things

can go wrong which can be serious. This is what some doctors don't

understand about this disease, or they don't want to understand.

Yes, there are much worse diseases out there but does that mean that our

disease is just cast aside? I would like to see that doctor get this

disease for one week and see how he likes it. I think he would soon

change his toon. I also feel that a doctor that does and says things

like that doctor did is inexperienced with this type of disease and is

scared of doing the wrong thing. You're better off without him. Try

going to your friends doctor...see if he works out.

Take care and I hope you're doing much better today.

Vicki

[Guest guest]

Vicki, it sounds like 's doctor should be on your list of people who need a dose of myositis, don't you think? :-)

Take care,

--Connie

Re: (unknown)

Hi ... Gosh, that doctor almost sounds like the jerk I use to havefor years. Always talking down to me and telling me nothing was wrong. Even when I couldn't breath... he justtold me to learn to live with it. Oh right! Now, I can talk to mydoctors, which I love. I think you have to go into a doctors office andtake charge. The first appt. will tell a lot. Ask questions and ifhe's reluctant to answer, tell him that you're the type of person thatNEEDS TO KNOW the reasons behind you feeling ill. It's not in yourhead. Take charge kiddo... it really works.The other doctor you had was a clod! Doctors forget that other thingscan go wrong which can be serious. This is what some doctors don'tunderstand about this disease, or they don't want to understand.Yes, there are much worse diseases out there but does that mean that ourdisease is just cast aside? I would like to see that doctor get thisdisease for one week and see how he likes it. I think he would soonchange his toon. I also feel that a doctor that does and says thingslike that doctor did is inexperienced with this type of disease and isscared of doing the wrong thing. You're better off without him. Trygoing to your friends doctor...see if he works out. Take care and I hope you're doing much better today.Vicki

[Guest guest]

Connie..... You're absolutly right... s doctor along with s

Dr. Freak are on my list.... Now if I can only find a way to bottle it

up and send it to them. I know after a couple of weeks having this

they would really appreciate a myositis patient.

Take care,

Vicki

[Guest guest]

Gee Vicki.....coax me........you know how I

hate to share m beady passion (NOT)....lol

http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=425519 & f=0

http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=11076216 & f=0

Teddi

mailto:teddifromok@...

[Guest guest]

WOW Teddi!!!

Your beadwork is beautiful!!!!!! Is it by chance for sale? :-)

I can see why you really enjoy doing this artwork.

There's another DMer I know, by the name of Cathie and she lives in Canada. She absolutely loves fairies......and calls herself the fairy lady. I thought of her when I saw your fairy piece.

Hope you're having a great day in Okieland. Do you live anywhere near Tulsa or Broken Arrow? Labor Day weekend there's going to be a gathering of another auto-immune group......who have relapsing polychondritis. I don't know if I have it in addition to DM (one doc says yes, one says no) but I wish I could go there to their first reunion. Then I could visit you, too :-) As it is......the travel budget was just shot......I made reservations to go to Omaha to visit our son next week.......but it will be nice to visit with , so I'm not complaining :-)

Take care

Connie

Re: (unknown)

Gee Vicki.....coax me........you know how Ihate to share m beady passion (NOT)....lolhttp://albums.photopoint.com/j/AlbumIndex?u=59511 & a=425519 & f=0http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=11076216 & f=0Teddimailto:teddifromok@...

[Guest guest]

Hi :-)

Thanks for the update......we're pulling for you! Just maybe things will really start to improve for you.....with a nurse/practitioner who understands and a new rheumy to boot!

As for the fibro......maybe your doc put that down as sort of a catch-all for "pain in the muscles" type of description. Dr. Franco did tell me that I have/had fibro in addition to DM.....by pushing on those pressure points and watching me almost slug him back :-) So......who knows.......it's hard to tell the difference between fibro and myositis sometimes.

In any case......don't forget that Dr. Nicolson has found mycoplasma infections in fibro patients, too and he recommends the antibiotic treatment (AP) for it, too. So, if you are able to convince the rheumy to go for the AP, even if he has to categorize it as "rheumatiod arthritis" to satisfy the powers that be......you'll still get better. I've learned that it doesn't matter so much what name they put on the rheumatic diseases because the symptoms all overlap so much anyway.

Did the nurse/practitioner tell you to be careful with NSAIDs on your stomach? Even though we use them all of the time for lots of aches and pains, they're pretty destructive to our stomach linings.....even if we take them with food. For the first year and a half after I got sick I took regular NSAIDs.....Advil, then Relafen, mostly and sure enough, I developed stomach pains......just little gnawing pains, but it was enough to get my attention. Thankfully, the AP had kicked in and I was able to quit the Relafen, even though I felt like I had just lost my safety net, everything worked out OK.

I'm keeping my fingers crossed for you!!

Take care,

Connie

(unknown)

Good to see you again, Anne-Marie! Maybe the prednisone has slowed the bone healing process? Hope you can get that sinus infect. knocked out for good.- I've heard the same for quite a few people, including y stepmother and father- that the colonoscopy wasnt bad at all. We'll be holding your hand!I jsut got back from teh doctor's office re: my tummy. Saw the nurse=practitioner, who I liked. More blood drawn for more tests- to check for h.pylori infection which is the main cause of ulcers. If poitive, I will be treated with anitbiotics and will get rid of this! Alos given samples of the new prilosec to give me relief--- other things- AND I have the name of a different rheumatologist locally- imagine that! She told me I definitely need rheumy follow-up. This rheumy was in pracitice and did other things too- internal medicine. I ahve heard nothing but good things about him from people here- he "retired": or something for a while, but just now has opened back up to concentrate only on rheumatology, so I will give him a call. I happened to see a little bit of what my internist had written in my chart- the word fibromyalgia was there, as a possiblilty.... I dont know how I feel about that, but I have never considered myself as having fibro. Gotta go lay down- Ciao!

[Guest guest]

Teddi,

I just viewed your bead work. I'm impressed! How long have you been at

this business? Annette

Re: (unknown)

Gee Vicki.....coax me........you know how I

hate to share m beady passion (NOT)....lol

http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=425519 & f=0

http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=11076216 & f=0

Teddi

mailto:teddifromok@...

[Guest guest]

Connie,

What is polychondritis? I've never heard of it. Annette

-----Original Message-----From: JHACHE Sent: Thursday, June 28, 2001 3:57 PMTo: OurMyositis Subject: Re: (unknown)

WOW Teddi!!!

Your beadwork is beautiful!!!!!! Is it by chance for sale? :-)

I can see why you really enjoy doing this artwork.

There's another DMer I know, by the name of Cathie and she lives in Canada. She absolutely loves fairies......and calls herself the fairy lady. I thought of her when I saw your fairy piece.

Hope you're having a great day in Okieland. Do you live anywhere near Tulsa or Broken Arrow? Labor Day weekend there's going to be a gathering of another auto-immune group......who have relapsing polychondritis. I don't know if I have it in addition to DM (one doc says yes, one says no) but I wish I could go there to their first reunion. Then I could visit you, too :-) As it is......the travel budget was just shot......I made reservations to go to Omaha to visit our son next week.......but it will be nice to visit with , so I'm not complaining :-)

Take care

Connie

Re: (unknown)

Gee Vicki.....coax me........you know how Ihate to share m beady passion (NOT)....lolhttp://albums.photopoint.com/j/AlbumIndex?u=59511 & a=425519 & f=0http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=11076216 & f=0Teddimailto:teddifromok@...

[Guest guest]

Teddi,

Your work is beautiful. I had forgotten what great work you do.

The latest thing here in Augusta among all of my friends is to wear

personalized bead bracelets. A woman here in town has set hours where you

can go to her home and pick out your own beads and charms and then she puts

the bracelets together for you. She is making big $$$. Several of my

friends have them. They are all beautiful and unique to each person's

personality. Your work is exceptional. Do you sell the pieces that you

make?

Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Thu, 28 Jun 2001 14:32:57 -0500 (CDT)

>

>Gee Vicki.....coax me........you know how I

>hate to share m beady passion (NOT)....lol

>

>http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=425519 & f=0

>

>http://albums.photopoint.com/j/AlbumIndex?u=59511 & a=11076216 & f=0

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Annette

I have been beading for about 15 yrs with a

3yr out time when I was dx'd with DM....all

of my pieces are original

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Cari

thanks for the kind words......I know the

bracelets you are talking about......right

now I am doing a few of strung beads on

elastic but it's BORING and I'm going back

to the designed pieces......and yes, I do sell

my work and also do custom work....When

I lived on the Oregon Coast I had my stuff

in one of the galleries

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Connie

Thanks for the kind words (hanging head and

blushing)....yes I sell my work and also do

custom work......anything to support my habit!

I live in Oklahoma City which is about 2 hr

drive from Tulsa......I go over once in a while

to see a beader buddy.......usually spend the

night as I get too tired when I try to drive

both ways in one day.

How nice that you are going to get to see your

son.......my youngest son still lives in Florence,

Oregon.....got to see him last summer but

can't afford it this year........San Diego in Oct

is going to be my big indulgence........

Little thunder and less rain tonight.....we really

need the rain but NO nasty weather....It's

been in the 90's which is WAY too hot for me

Every summer I ask myself why I left the coast

Teddi

mailto:teddifromok@...

[Guest guest]

Way to go Miss Teddi.... Nice work! So that's how you get so rich...LOL

Take care,

Vicki

[Guest guest]

Ann-Marie.. Are you on any Calcium?

.... Hope the tests come back soon. When you said NEW Prilosec do

you mean Nexium? That's what they put me on to clear up my problem.

Take care,

Vicki

[Guest guest]

Well, that's really quite a talent. I'm happy you have this art work to do.

I know my life would be greatly diminished without my art and writing,

especially since the disease struck. Your work is just beautiful. Thanks for

sharing it. Annette

RE: (unknown)

Annette

I have been beading for about 15 yrs with a

3yr out time when I was dx'd with DM....all

of my pieces are original

Teddi

mailto:teddifromok@...

[Guest guest]

Teddi,

Would love to see some of your work in person. You need to bring a few

pieces to the conference.

Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Thu, 28 Jun 2001 22:33:02 -0500 (CDT)

>

>Hi Cari

>thanks for the kind words......I know the

>bracelets you are talking about......right

>now I am doing a few of strung beads on

>elastic but it's BORING and I'm going back

>to the designed pieces......and yes, I do sell

>my work and also do custom work....When

>I lived on the Oregon Coast I had my stuff

>in one of the galleries

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Yes, I'm on 1500mg. of calcium/day and just switched from daily to once a

week Fosamax (a good thing, since I often forgot to take it!!!)

Ann-Marie

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Cari... sounds like you have everything together.... Want to come out

here and put my life back on track? I CAN'T HEAR YOOOOOU....

Kidding aside, it does sound like you have all your chickens in a row...

Good for you and your hubby.

.... You're right, I go in for my Echocardiogram and HRCTscan on

Tuesday. She said this is going to be a different scan than I normally

have. No dye this time...

Hope you all are having a good weekend.

Vicki

[Guest guest]

... what tests are you having? I thought you were all done with

them.

Your stepmother and her sister both died in the same week? My gosh,

that is strange..... My grandmother use to tell me every thing comes in

three's....

... How's it going? Are you alright? Last thing we heard was

that you were drinking your cocktail. You didn't waste away did

you???????

Vicki

[Guest guest]

,

I understand where you are. For years Jeff ran Circuit City Superstores.

When the girls were little we would bring lunch into his office and picnic

on the floor. Otherwise a few days would go by before he would of seen them

awake. When Shelby, our oldest, was getting ready to start Kindergarten

Jeff decided he had to make a change. He had 14 years in with Circuit City

but his days off were always during the week when Shelby would now be at

school and he would be home on weekdays when she was gone. Jeff had to try

a few things before we found the business that we have now. It was very

rough and then was dx with JDMS. It was a very rough three years but

we are coming out of the fog. I too was used to being alone all the time,

handling all household decisions etc... It took some getting used to to

have him home on a regular basis and having to share the TV remote! Jeff

discovered he loves to cook and is quite good at it. He even cleans up

after himself. With children, it makes it even harder to divide up free

time for each other and for the children. Make sure you do so though. It

is so important.

Hugs,

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Sun, 01 Jul 2001 23:47:32 -0000

>

>Hi Everyone,

> Vicki, isn't your Cscan coming up soon? Keep us posted.

>Cari, you're doing better than we as far as speding time together.

>when my husband gets home at 1030 at night and has left by 8 am,

>forget any " quality " time. Most of these years in a sense I've flet

>pretty much on my own as far as raising the kids goes, and other

>stuff. Of course, he sure would like to have more time but when he

>does, he'd mostly rather play golf! Hope all had a good weekend and

>will have a safe, happy 4th of July.

>

>

_________________________________________________________________

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[Guest guest]

Vicki,

You made me laugh-out-loud. I have to tell you, the first time I was on a

horse it threw me and broke my arm. OUCH! It took me out of the swimming

state championships. I was in the eighth grade and devestated. Boo hoo.

My dad did make me get back on and ride for a short distance once the cast

came off. I don't believe I've been back on a horse since. I love to watch

horses but from several feet away. Call me chicken.

Hugs,

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Sun, 1 Jul 2001 17:39:01 -0700 (PDT)

>

>

>

>Cari... sounds like you have everything together.... Want to come out

>here and put my life back on track? I CAN'T HEAR YOOOOOU....

>

>Kidding aside, it does sound like you have all your chickens in a row...

>Good for you and your hubby.

>

>.... You're right, I go in for my Echocardiogram and HRCTscan on

>Tuesday. She said this is going to be a different scan than I normally

>have. No dye this time...

>

>Hope you all are having a good weekend.

>Vicki

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Vicki,

I am sure we will all be thinking of you tomorrow. Let us know when you get

home how it went.

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Sun, 1 Jul 2001 17:39:01 -0700 (PDT)

>

>

>

>Cari... sounds like you have everything together.... Want to come out

>here and put my life back on track? I CAN'T HEAR YOOOOOU....

>

>Kidding aside, it does sound like you have all your chickens in a row...

>Good for you and your hubby.

>

>.... You're right, I go in for my Echocardiogram and HRCTscan on

>Tuesday. She said this is going to be a different scan than I normally

>have. No dye this time...

>

>Hope you all are having a good weekend.

>Vicki

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Vicki,

I too know exactly what type of hand pain you are describing. It has this

sort of dull ache when you move your hands and even sometimes when they are

still, but then when you go to do something with them you get this horrible

pain. The pain is burning and pulling. It is very painful and very

disruptive to things like cooking or even taking a shower. It feels like

someone has wrapped your tendon around something and is tightening your

tendons with a screw driver.

Gentle hugs,

Fern