RE: (unknown)

[Guest guest]

I wish your family could sit down with you an really listen to what your

saying. It has to be so frustrating for you. I know, how about

writing a letter to them... Ha, that would really stun them. Pour out

your heart in the letter....and MAIL it to them....it just might work.

I'm coming out of my flare... funny part is I ran out of Prednisone

three days ago and didn't notice that I wasn't taking it. I didn't have

any shakes. So I'm going to try to stay off of it as long as I can. I

have noticed that I'm stiff all day long. Guess that means I can't go

out dancing tonight.

Hope you had a good day.

Take care,

Vicki

[Guest guest]

,

Most nuns don't wear make up, however one of our older nuns who died

within the last year wore rouge all the time and was just who she was...She

was known to the kids in the high scholl where she taught German as the " nun

who wears make up " (This was when we were in full habit, too!!!!) I loved

her--Adelia was " unconventional!!!

Ann-Marie

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[Guest guest]

Way cool - a nun in jeans !!! I LOVE IT !!!!! I want to go shopping with you. We'd have a blast !!!!! I went to all you can eat crab legs tonight with hubby and by the time I was finished, I had to leave with my jeans unbuttoned !!! I just know that I wont be able to get them on for work tomorrow as I will be swelled five sizes !!! It was well worth it though !!!!

My cats knead me !!!!

[Guest guest]

, no, I am no longer in full habit. I am, as we speak, in jeans and

a sweatshirt. We all have our crucifix and ring as a sign of our

committment and try to wear clothes that are professional but still simple

(rats--no Armani!)! I LOVE to shop! Since I've had to explore several

sizes (HEMMMMMMMMMMMMMMMMMMMMM) liking to shop has been an asset!!!

Ann-Marie

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[Guest guest]

Dear ,

We do have quite a few nuns ministering in Florida. If I ever come down

(i may next summer to help three of them with a project), we've got a Mall

date. These three are in ville---how far is that from Orlando?

Clueless...

Ann-Marie

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[Guest guest]

ville is only about 1 1/2 hours from me. Its a straight shot and we

could meet halfway or something !! Let me know if you will be making the trip

and we'll plan for it !!

[Guest guest]

I am heading to Freak's office today at 2:30. I have all sorts of info that I

have printed out regarding the antibiotic therapy so Im considered armed and

dangerous !! He will either let me ry it or throw me out. Keep your fingers

crossed !!! BTW - my squirrels are NORMAL too - they live in trees !!!! Ive

never in my born days heard of one living underground !!! That would scare me

!!!

[Guest guest]

LOL... You guys crack me up! Don't talk about my little squirrels like

that.... they are just the sweetest looking critters to have romping

around. You have to remember that southern Calif. doesn't have that

many TREES... so I guess the squirrels never learned to climb the darn

things. I really love to watch them play. This was their home way

before I bought the property so the least I could do is to give them

there own little world.

.... you've got to let us know what Dr. Freak says. Since he's

such a charming man I'm sure he'll have a lot to say to you this time.

Good Luck!

Vicki

[Guest guest]

,

Congratulations on your son's wonderful achievement. I know you are so

proud!

Hugs,

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Wed, 04 Apr 2001 22:17:57 -0000

>

>Hi Group,

> Seems it's a bit quiet, so thought I'd jot down a few things. I was

>just outside raking driveway gravel off lawn area, to see if I could

>do it and how much I could do. I got a little done, with hours to go

>before I sleep........ wish my arms were as strong as they used to

>be - I'm sure my neck and back will be protesting a bit by tomorrow.

>Vicki, remember our little conversation re: fingers curving? I've

>been looking around a bit, and it seems to me that what's happening

>in my case is what the " experts " call ulnar drift.My fingers get just

>a bit puffy, too. Since they are thin to begin with, only I really

>notice. I'm a little concerned because from what I find in medical

>sites, this is an indication of rheumatoid arthritis- I haven't been

>able to find anywhere yet that says osteoarthritis causes this.And my

>carpal tunnel problem doesn't come from repetitive motions of

>injuries there, so I'm thinking it must come from something else- I

>can't blame the computer or typing or any other thing as I've had it

>to a degree before I ever got one.

>I have a little good off-topic news- my son was elected to the

>National Honor Society. We really didn't think he had a great chance

>becuase there were 230 eligible in his high school.... so he's happy

>and so am I ! He played his piano music just fine at the school

>program I went to last night- it really turned into a comedic routine

>and it was supposed to be in a more serious vein) and I had a lot of

>laughs. Take care all-

>

>

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[Guest guest]

isn't supposed to do a lot of jumping to try and avoid impact on his

hip joint but no other activity has been limited.

often complains of pain in his knee. I think it radiates down.

Hugs,

Cari and

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Sat, 07 Apr 2001 23:45:44 -0000

>

>Well, you know the doctors...

>

>The MRI showed signs of asceptic necrosis, so my evil rheumatologist

>grounded me immediately -- no more running. Then he set me up for a

>bone scan and tomographic scan of the hips. The results came in on

>Friday, and essentially confirm the MRI. What the analysis said was

>that, given the patient's (that's me) diagnosis and medications, it

>was likely asceptic necrosis. I expect I'll get a further scan in

>about six months or so, to see if the condition is worsening. If it

>isn't then I will probably be allowed to do some running. If it is

>getting worse, then I may end up setting off the metal detectors at

>airports in a few years.

>

>Glad to hear that upstate N.Y. is finally getting spring, too.

>

>Take care.

>

>Mike B

>

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[Guest guest]

Mike,

You cracked me up. I sat at my desk hysterical. Thanks for the good laugh.

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Thu, 12 Apr 2001 17:54:55 -0000

>

>Mike, I have nothing to say but if you could hear my laughter...

>Folks, I am very sick with a nasty, nasty cold, so will be reading

>some but maybe not posting much til later- <3

>

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[Guest guest]

Im hanging in there. Hubby left for NY City this morning and wont be home until Monday evening, WOOOOOHOOOOO !!! (Oops, did I say that??) I have kid duty all weekend (like that's anything new but I love it). Am taking tonight to clean my room in which I am doing very gingerly as there is no telling what I may find buried in here !!! Got in the mood today after I knocked the vent off the bottom of the refrigerator and thought "Hmmmmm maybe I should vacuum under there and get out all the furballs." Not only did I find plenty of them, I also discovered what must be the goal for the cats when they play hockey with their little furry mice toys. 10 count them 10 of the darn things under there !!! Needless to say, they are in kitty heaven tonight with their retrieved toys !!! Im sure it wont take long for them to slap them all back under there. Well I hope everyone has a splendid weekend !!!

I'll be spending tomorrow at the little league field and Sunday at a cat show and hopefully sneak some pool and sun time in there somewhere. Im off to change my sheets and check the score on the Braves game !!!!

My cats knead me !!!!

[Guest guest]

... It could be but what are you taking for pain? Do you take

advil or anything? Before you go out in the yard to work on

anything..... you really should take something first. Not after!

My hands do the same thing when I'm out working in the yard. I even get

swelling in the palm of my hands. I normally have slender boney

hands.... after doing any work with my hands it looks like I have a

baseball mit on. Sore as all get out. I take my Celebrex before I go

out. That way I can go longer.

Vicki

[Guest guest]

Could your finger and hand problem be Raynaud's syndrome? I know it comes

with most autoimmune diseases. Annette

(unknown)

Vicki and Annette, your subject lines are the reasons I never wanted

to live in CA! Visit, yes.

Hand/finger question: I've just been working outdoors a little,

slowly beginning to clean up my perennials. My fingers are puffy

enough that I can't budge my rings- usually they are too loose. On my

fingertips the skin is shiny and redder- comes and goes. Hands feel a

little stiff ( what part of me doesnt now? Is this the plain ol

osteo, Vicki? I've never really noticed this before. Oh, BTW,

Vicki, sure there are lots of muscles all along the esphagous and

digestive system, so myo causing the GERD to worsen makes sense to

me. Let us know if the doc tomorrow thinks so. Good luck.

[Guest guest]

... See if you can hook up a shoulder harness on your weed wacker.

That will take the pressure off your shoulders and arms. How do you

like the weight of your weed wacker?

Vicki

[Guest guest]

Hi ... Boy, did you hit the nail on the head.....

If I was very rich I'm sure I would hire out alot of things. When I was

married we did hire people to clean the barns and keep the horses

looking great. But even then, I found that I had to keep on top of them

all the time. Otherwise I would find them behind the barn or sleeping

in the stalls.

I do have friends that want to come out here to help me. But I know

that I would want to be out there with them so that wouldn't work. I am

VERY independent which has worked against me many times. It's a

curse!!! lol

When I had my lung biopsy they put clamps to close the incisions. There

was so much inflammation in my lungs they did it that way to be safe.

The clamps are about 1 " x1 " or so they appear on the xray to be that big.

I have three of them in my right lung.

I pick up the sleep monitor tomorrow and wear it though the night. It

records how much oxygen I'm taking in while I sleep. The first one I

ever had was amazing. It showed I was dropping all the way down to 40

at night. They like to have you stay around 90 at night. It also shows

how many times you wake up and take in a deep breath. The numbers go up

drastically. They are trying to figure out if my fatigue is due to lack

of oxygen during the night time, one reason for fatigue during the day.

They do a day time test while I'm at the clinic by walking me around the

building hooked up to the oxygen monitor. I seem to stay steady at 92.

They worry about the weak lung muscles and that's why they like to make

sure the sleep test at night is alright.

My doctor has already told me that if I fall below 80 she will want me

on oxygen at night again. Now that is a pain I hope I don't have to do.

I received the Rheumatology news and as I was going through it I found

the info on Vioxx. It's good info for all those who take Vioxx and

can't figure out why their blood pressure is going up.

, you could very well be allergic to the sulfa in Celebrex. It's

always something to consider. Have you ever had trouble with any other

drug containing sulfa?

Well, I'm going for a walk.... should be back inside in about 5

minutes....lol

Oh, I lost another pound. 4 more lbs and I'll be under 200 mark. I

can't wait. I know I could lose more if I had the energy to move

around.

Hope everyone is having a great day...

Take care,

Vicki

[Guest guest]

> Ralph- how's ?

Glad you asked! We just had a visit to Children's on Tuesday, and it

was good. 's strength has been 100% for more than 6 months, and

her labs have been normal for more than a year.

We started on ProTopic (topical tacrolimus ointment) a few months

ago as part of a study (they asked me not to write about it in the

Diary until the study is published, which it is about to be). The

stuff has done wonders! Her rash is clearing up nicely since she's

been using it (twice a day) - so much so that they are letting her

discontinue taking Quinacrine. One less pill to take is always a good

thing.

Quinacrine has few side effects, but it has made 's skin yellow.

So much so that she was visiting her grandfather in the hospital a

couple of weeks ago and she was mistaken as having jaundice. Anyway,

it will take several weeks for the stuff to work its way out of her

system, as it took several weeks for her skin to turn yellw when we

started on it 15 or so months ago.

We started Quinacrine because 2 years of Plaquenil was doing nothing

for her rash. Quinacrine (aka Atabrine) is popular in Europe, but is

hard to get here. In fact, we have to have it compounded.

Anyway, that's where we're at. Thanks for asking!

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

I agree ... Doctors need to take a long hard look at what they are

doing to their patients. With the use of the internet more and more

people will find out who to go to and who not to. Like with everything

else happening in this world, it will take us, the patients, to make

doctors become more responsible and take better care of their patients.

Wouldn't that be nice. No one is looking for a picture perfect doctor.

But, a doctor that shows compassion and is willing to do some research

is not to much to ask. It drives me nuts when a doctor reads one

article on myositis and matches everyone to that. As a doctor, he has a

responsibility to help people... not make them feel that they're going

crazy.... in which case an antidepressant is prescribed.

, After your done with your rain clouds can you PLEASE send them my

way. We're dying out here. It's in the upper 90° today. I never get

that hot until August. Oh gosh, I can hardly wait for the real heat to

hit. My water has been running for 4 straight days now. I'm trying to

plant my baby trees and keep them going.... some are already in the

ground and some are still in tubs. It's too hot to go outside until

sunset.... I know I'll have to leave the house once my food is all

gone....lol I keep asking myself why I live in the desert.... even

though it high desert.

Hope everyone had a great day.... and again, if anyone has any rain left

over...please send it my way.

Take care,

Vicki

[Guest guest]

Well geeez ... You're no fun...!!!!!

If I wait for my own rain.... it's going to be a long time... suppose

to have a cool down this weekend. Only in the 80°s

By the way.... YOU should also write a book... what a great mind you

have to think up those titles...

Take care...

Vicki (I need rain)

[Guest guest]

If anyone can get " Beyond Human Living Machine " , it's on PBS... The

Honda corp in Japan will show you the new robot they made. It's so darn

cool. They finally got it to walk up and down stairs....

Very interesting show.... something the kids would get a big kick out

of.

It's on 9 - 10 ... ok, right now.

Vicki

[Guest guest]

If anyone can get " Beyond Human Living Machine " , it's on PBS... The

Honda corp in Japan will show you the new robot they made. It's so darn

cool. They finally got it to walk up and down stairs....

Very interesting show.... something the kids would get a big kick out

of.

It's on 9 - 10 ... ok, right now.

Vicki

[Guest guest]

Hi :-)

I know what you were saying......about feeling decent one day and rotten the next. I remember it well.....it was frustrating because I was used to making plans, committing to projects, and appointments, etc and I really had to stop planning on anything because I couldn't guarantee that I would feel up to it when the time came. Eventually, as I got better, I was able to commit to various projects again....in the process I learned to say "no" more often, too :-)

Definitely mention to your dermatologist about your mouth sores. They, like all MDs are trained in a lot of basic information that will apply to lots of circumstances.

Take care, OK?

Connie

[Guest guest]

,

Yes, rest does seem to make some of us feel better. When I've overdone, I

sit until I feel the pain start to wane and my strength return. Hard to

understand, though, huh? Annette

(unknown)

Hi Fern and group,

Gosh, your sore mouth sounds similar to my ongoing problem, which

I " talked " with Sue about a while ago here. How are you, Sue?

My sore tongue, mouth, lips, etc comes in cycles realted very

definitly to my monthly. Problem is, my " monthly " has been occurring

every 2 weeks at this time, and it's all extremely frustrating. By

last night, the roof of my mouth near my front teeth was so sore...

but I still eat I think I'l try the peroxide for that myself.

Would this be soemthing to ask my dermatologist about tomorrow? Don't

recall if I have before-

Vicki, good news at least about the lungs. I get so fatigued, but

never where I fell asleep before I ate my food. Today I've felt

better than the last few days. Then again, I've done very little

physically today, or yesterday- NADA. Honestly, gals and guys, IS

it " normal " to feel rotten one day, then halfway normal the next or

at least part of the day, with rest? Napping and sitting seem to do

it for me, at least for a while. I would think that with myo or RA or

whatever, one would tend to be consistently " unwell " (in a manner of

speaking) whether one moved around or not ( of course, overdoing

physically would make one feel worse, but one wouldn't necessarily

feel " OK " when taking it easy.) Oh my- I have really butchered what

I was trying to say. We've discussed this before, too, I know. I'd

better go while the going it good! <3

[Guest guest]

Hi

LOL...I think I am an expert on the " yo-yo "

syndrom.....I have a good day and run

errands, groceries or (gasp) pick up a

little around the house.....then for the next

1 - 2 days I sleep or stay bonded to my

chair...... It's a bummer!...you had better

be sure that you are going to REALLY

enjoy your up time cause you know the

payback is coming

Teddi

mailto:teddifromok@...

[Guest guest]

Hi everyone... I've got to mention this. Yesterday I had to run into

town for some things. I was soooo hungry and it was already 3:00pm

and I hadn't eaten since 6:am. I stopped into our country restaurant

for some lunch. I know better than to do this but my stomach overrode

my mind. This morning I woke up to my tongue red and sore and sores

around the inside of my lips. First thing I thought of was you Fern....

I will get this at any restaurant that doesn't wash the dishes and

silverware good enough. When I would eat with my friends every week...

they wanted to go to one particular place and every time I would end up

with these sores. If we went to a different place, much nicer, I

wouldn't get the sores.

Now, I will go into a place only when it's very very slow.

Might be something you've come in contact with Fern. Have you eaten out

anywhere?

Take care,

Vicki