RE: (unknown)

[Guest guest]

Vicki,

I know exactly what you mean about not being able to hold unto things. I

let go of something my son handed me one day and he got mad at me for not

holding on. I tried to explain that my hand hurt so bad that I had to let

go, but of course he still didn't understand. I don't know why he got so

upset because I didn't break anything, oh well, one of those things.

I often drop things while I am cooking and the boys are always teasing me

for throwing things in the kitchen.

Gentle hugs,

Fern

[Guest guest]

... You hit the hand thing right on the head. It does feel like

it's my tendons. I am unable to make a closed fist. The tendons are

tight and really painful when I try. During the evening hours my hands

really hurt. But, I can't describe the pain. It's not throbbing...

this morning they really ache. The base of the thumbs are very sore and

if I hit it just right... You can hear me in New York. I'm really

fighting to stay awake again. Already took a 45 minute nap ....lol I

wouldn't mind so much if this was actually BEAUTY sleep. But, I wake

up the same old way.... I can't win.

... I'm waiting for you to get on here and praise your doctor.

At least I hope you're going to praise her. How did it go?

Take care,

Vicki

[Guest guest]

Vicki

Did you ever email re the hand.....the

tendons were what he had operated on....

if you have (gasp) lost his email addy write

me off list & I'll give it to you.

Teddi

mailto:teddifromok@...

[Guest guest]

I love her I love her I love her !!! Oh sorry, got carried away !!!

NEways..........I cant tell you how refreshing it was to actually get to sit ad "talk" to a doctor and be able to ask questions and know the doctor is listening !!!! My appointment began at 3:30 and I didnt get out of there until almost 5:00 !!! She asked the usual 1000 questions and when it came to the "You arent too fond of Dr. Sheikh?", I could only answer "Next question please !!!" She laughed as he isnt her most favorite person either and understood where I was coming from. That made me feel good !!! She did labs and scheduled me for a bone density test this coming Tuesday. She couldnt believe that Freak had not sent me for one before now but that is just typical for him as you all know. She is requesting all my prior records from all the doctors Ive seen and wants to see me again the 1st of August. I told her how much I despise the prednisone and she said that in her opinion, I should be back on the methotrextate (at a higher dose than Freak had me on) and that it can work with other drugs besides prednisone (which we will discuss next month). She also didnt agree with Freak regarding the exercise regime. She said that in her opinion, there is no reason that I cant resume my power walks as long as Im not flaring. Made my day as this tail end keeps getting wider by the day !!! I almost died when I got on those scales at her office. I havent weighed this much in my life (including at 9 months pregnant) !!!! Something just has to give and fast !!! I think I may just get a giant chip clip and place it right over my lips (as I finish the remaining Steak and Shake orange freeze that I had for dinner) !!!!! The best of weekends to all and to all a good night !!!!!

My cats knead me !!!!

[Guest guest]

Hi Fern.... You described the hand pain. I didn't think anyone else had

this problem but I guess it must be part of the myositis. I didn't have

it when I was on the higher dose of Prednisone... that make sense to me.

I don't want to go back on the Prednisone since I'm down to 5mgs. At

times the pain in my hands wakes me up in the middle of the night. I

went to pick up a coffee cup that was empty and I had to let it drop to

the ground.

Hope you had a good day and keep your chin up, it will get better.

Hugs

Vicki

[Guest guest]

Hi Teddi.... Yes I did write to and we talked about his hand

problems. He has the same thing I've been describing and he's been

operated on twice. But, sad to say it didn't help him. He did say he's

started taking a supplement vitamine and he would let me know if it does

any good.

How are you today? We just had a heck of a storm go through here.

Flash flood warning for the mountain areas... this was a true desert

storm. It dumped a lot of water in a short period of time. I still

have cloud cover so I'm enjoying this. People are asking when this rain

will end... Calif. crazy people.... I wish it would never end.

Take care,

Vicki

[Guest guest]

Vicki.....send me your storm....it is soooo dry

here......you would think that would lower the

humidity.....NOT.......our official temp in OKC

was 97 but know it was in the 100's other

places in the state and probably in OKC just

not at the airport.

I overdid last week so am back to square one

again.....not hurting real bad but mentally I

feel like death warmed over......guess I

shouldn't whine - snivel - & moan when I hear

what you all are going thru, but where else

could I do it???

Attention! I got to hold my brand new great

grandson Tues.....geez, it's been so long I

forgot how small they are at first....lol

Teddi

mailto:teddifromok@...

[Guest guest]

Thank goodness she was worth waiting for! So thrilled for you !

Hope this one is a keeper. Keep us up to date. Goodbye Freak!

Hugs,

Cari

>From: catzmeowz@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Fri, 6 Jul 2001 22:35:49 EDT

>

>I love her I love her I love her !!! Oh sorry, got carried away !!!

>NEways..........I cant tell you how refreshing it was to actually get to

>sit

>ad " talk " to a doctor and be able to ask questions and know the doctor is

>listening !!!! My appointment began at 3:30 and I didnt get out of there

>until almost 5:00 !!! She asked the usual 1000 questions and when it came

>to

>the " You arent too fond of Dr. Sheikh? " , I could only answer " Next question

>please !!! " She laughed as he isnt her most favorite person either and

>understood where I was coming from. That made me feel good !!! She did

>labs

>and scheduled me for a bone density test this coming Tuesday. She couldnt

>believe that Freak had not sent me for one before now but that is just

>typical for him as you all know. She is requesting all my prior records

>from

>all the doctors Ive seen and wants to see me again the 1st of August. I

>told

>her how much I despise the prednisone and she said that in her opinion, I

>should be back on the methotrextate (at a higher dose than Freak had me on)

>and that it can work with other drugs besides prednisone (which we will

>discuss next month). She also didnt agree with Freak regarding the

>exercise

>regime. She said that in her opinion, there is no reason that I cant

>resume

>my power walks as long as Im not flaring. Made my day as this tail end

>keeps

>getting wider by the day !!! I almost died when I got on those scales at

>her

>office. I havent weighed this much in my life (including at 9 months

>pregnant) !!!! Something just has to give and fast !!! I think I may just

>get a giant chip clip and place it right over my lips (as I finish the

>remaining Steak and Shake orange freeze that I had for dinner) !!!!! The

>best of weekends to all and to all a good night !!!!!

>

>My cats knead me !!!!

>

_________________________________________________________________

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

[Guest guest]

Great grandson! Congratulations Teddi. How sweet. I just love the smell

of a baby, don't you?

Hugs,

Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Fri, 6 Jul 2001 22:11:25 -0500 (CDT)

>

>Vicki.....send me your storm....it is soooo dry

>here......you would think that would lower the

>humidity.....NOT.......our official temp in OKC

>was 97 but know it was in the 100's other

>places in the state and probably in OKC just

>not at the airport.

>I overdid last week so am back to square one

>again.....not hurting real bad but mentally I

>feel like death warmed over......guess I

>shouldn't whine - snivel - & moan when I hear

>what you all are going thru, but where else

>could I do it???

>Attention! I got to hold my brand new great

>grandson Tues.....geez, it's been so long I

>forgot how small they are at first....lol

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

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

[Guest guest]

I know what you both mean.... I live in fear at the dinner table when

someone asks me to " pass the potatoes " ... there's no way I can pass anyone

anything but the salt and pepper! :-) Annette

Re: (unknown)

Vicki,

I know exactly what you mean about not being able to hold unto things. I

let go of something my son handed me one day and he got mad at me for not

holding on. I tried to explain that my hand hurt so bad that I had to let

go, but of course he still didn't understand. I don't know why he got so

upset because I didn't break anything, oh well, one of those things.

I often drop things while I am cooking and the boys are always teasing me

for throwing things in the kitchen.

Gentle hugs,

Fern

[Guest guest]

Hi ,

I'm so happy to hear that you've finally met a doctor who LISTENS and WORKS for you. Let's hope she can come up with some workable solutions for you. Annette

-----Original Message-----From: catzmeowz@... Sent: Friday, July 06, 2001 10:36 PMTo: OurMyositis Subject: Re: (unknown)I love her I love her I love her !!! Oh sorry, got carried away !!! NEways..........I cant tell you how refreshing it was to actually get to sit ad "talk" to a doctor and be able to ask questions and know the doctor is listening !!!! My appointment began at 3:30 and I didnt get out of there until almost 5:00 !!! She asked the usual 1000 questions and when it came to the "You arent too fond of Dr. Sheikh?", I could only answer "Next question please !!!" She laughed as he isnt her most favorite person either and understood where I was coming from. That made me feel good !!! She did labs and scheduled me for a bone density test this coming Tuesday. She couldnt believe that Freak had not sent me for one before now but that is just typical for him as you all know. She is requesting all my prior records from all the doctors Ive seen and wants to see me again the 1st of August. I told her how much I despise the prednisone and she said that in her opinion, I should be back on the methotrextate (at a higher dose than Freak had me on) and that it can work with other drugs besides prednisone (which we will discuss next month). She also didnt agree with Freak regarding the exercise regime. She said that in her opinion, there is no reason that I cant resume my power walks as long as Im not flaring. Made my day as this tail end keeps getting wider by the day !!! I almost died when I got on those scales at her office. I havent weighed this much in my life (including at 9 months pregnant) !!!! Something just has to give and fast !!! I think I may just get a giant chip clip and place it right over my lips (as I finish the remaining Steak and Shake orange freeze that I had for dinner) !!!!! The best of weekends to all and to all a good night !!!!! My cats knead me !!!!

[Guest guest]

Congrats on finally dropping Dr. Freak! It's great that you have a new Dr.

you feel you can count on. My favorite rhuemy just sent me a letter that he

is retiring. I am sad. The new one I have is alright, but I much prefer the

older, more experienced one. Anyway, I am very happy for you !!!!

D

[Guest guest]

Vicki: Surprised you don't remember this, we all had a whole week long chat

about hand pain over the holidays (December). A lot of people get that

weakness early especially, because we all use our hands so much.

I know I get the worst of it while working and while cooking. I couldn't bake

over the holidays because I couldn't mix dough, my hands would claw up and be

unusable. It was excruciating pain.

I am taking 5mg of the pred now and feel alright, but still weak and tired a

lot. No outward signs of flare, but I suspect one is coming.

Hope everyone has a pain free day!

D

[Guest guest]

Vicki, You've mentioned before about the " buffalo hump " ... is it the same as

what we used to call the " dowager's hump " ? If so, I've got one but I

thought it was just old age creeping on. Annette

(unknown)

Good Morning Everyone.....

Your welcome Ann in regards to the blood sugar article.... After

looking at that chart your 41 was very low....

Ann, refresh my poor memory... what is it that you have? I can

remember my days with the lovely moon face.... I still have the buffalo

hump...not as bad but it's still there.

Hope you have a great day...

Vicki

[Guest guest]

Hi Annette... You're right, it would be the same thing. I remember my

grandmother talking about it also. But, the Prednisone makes it feel

more like a large pocket of water. Mine is getting better because it

use to be HUGE. It's gone down about 2 " .... I have about an 1 " more

to go before my lower neck is normal again.. Before you went on

Prednisone did you have one?

Take care,

Vicki

[Guest guest]

Vicki,

I don't really remember if I had one before DM. I always thought it was

because of osteoporosis. It's not a good thing, is it? Ruins whatever

posture I used to have. Oh, well...complain, complain, complain, right? :-)

Annette

RE: (unknown)

Hi Annette... You're right, it would be the same thing. I remember my

grandmother talking about it also. But, the Prednisone makes it feel

more like a large pocket of water. Mine is getting better because it

use to be HUGE. It's gone down about 2 " .... I have about an 1 " more

to go before my lower neck is normal again.. Before you went on

Prednisone did you have one?

Take care,

Vicki

[Guest guest]

Hi Annette.... It does make for a very disturbing view from the side.

I can't wear any round neck tee shirts because it just makes the hump

look bigger. Don't you just love this new type of body we have????

NOT!! LOL

Vicki

[Guest guest]

,

I read somewhere that people with arthritis-related autoimmune diseases are often allergic to Sulfa drugs. I broke out in hives to beat the band (that was when I was 16!)..I haven't had any (obviously!) since!!!

Ann-MarieGet your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi ,

Advil seems to help me some. Can't take prescription pain pills, so I

just make do with the Advil. Sometimes take three at once, although I've

heard that shouldn't be done. Annette

(unknown)

Hey Vicki- I'm happy to find that I DO have at least SOME interest in

those matters left!!!! My best friend and I took a bunch of pix with

her camera. She has yet to send them to me. I had put foot padding

and bunion pads on my feet which helped with the shoes, and didn't

walk around too awfully much. I,too, never wear heels. My slippers

are my favs. I will for sure send you guys a pix or two- I tried to

do that some time ago but could not for the life of me make it work.

Thanks for the Celebrex vs Vioxx post. I have tried Celebrex,

and didnt realize it takes longer to work than Vioxx. Aside from

having a terrible, obvious reaction, how does one know for sure if

one has an allergy to sulfa??? I'd really like to know. Can some

tummy troubles be any indication?

A friend of mine with fibro was just put on 2 different meds by a

new doctor she has seen, a fibro expert. One of the drugs is normally

used for epilepsy, seizures and the other is normally used for

narcolepsy, or extreme drowsiness during the day. He told her he has

about 400 patients on this combo, and it helps them a lot with energy

and sleeping better at night. I'll have to get the names again from

her, but I did look them up. I havent heard from her as to how it's

working yet, but should soon. I need something badly myself. I may

try those kidney bean things as well.... also, can anyone tell me

what I can take for pain occassionally that will NOT upset my

stomach? Can't take naproxen, I stay away from ibuprofen now. Can one

take tylenol along with Vioxx or is there anything else out there?

I'm back on the glucosamine and other junk so am hoping it helps.

[Guest guest]

... I've also found the more I move around the worse I feel. I

tried walking every evening but after the second night I was dead and

couldn't do it another time. You would think that if you do something

every day, twice a day that it would be easy...right?....NOT! I feed

every day an it's hard as heck sometimes to get down there.

Vicki

[Guest guest]

Hi Fern.... good to hear you're having a great time. Look forward to

when you get back and we can get the whole scoop.

I read about the beauty of NH and where lives... wow, don't you

guys like dirt, dead bushes, dead grass, little water, little rain and

struggling to make anything grow? (why am I here?)

Have a good day...

Vicki

[Guest guest]

... I do hope you start to feel better soon. I hear you about the

no rain. Our last little spurt was wonderful and I could use that and

then some around here. I'm looking out the front window and keep

telling myself I need more trees. ..lOL

Have a great day.

Vicki

[Guest guest]

Normal is what we hoped for. Normal is good! We pray for normal.

Hugs,

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Sat, 11 Aug 2001 16:08:07 -0000

>

>Hi all-

> Just a short note. Things sound pretty normal so far for ,

>Cari. Thumbs up! Teddi, I hope the MDA can take care of you and you

>get a break from all this insurance mess one of these days soon.

> It's great you guys who are going to the MAA convention will be

>able to spend time together and have some fun! Wish I could join you.

>Here's hoping y'all have safe trips and smooth sailing and that you

>feel well during, before, and after!

> For some reason I had a fairly high temp. last night and felt

>quite uncomfortable. This morning my temp is below normal so far but

>I feel sick. Discouraged. Have so much to do, but am not up to it

>today. My husband and my son went to visit son University in

>upper NYS and stayed overnight. Wish I could have gone, but had to

>stay here to care for animals. Probably would have felt lousy anyway.

>Have a good weekend !!!! PS- Here at my house we got NO rain

>yesterday- very depressing

>

>

_________________________________________________________________

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[Guest guest]

,

If you are running out of steam and having the shakes after walking, then

you are going to fast and too far. Back off and try less or go every other

day to give your body time to recuperate from the exercise.

Not to take a thing away from this wonderful group, but you might want to

consider joining a fibro group. This might help you greatly understand what

you are just learning about and to answer a lot of your questions. I guess

you know I run a fibro group. If you are interested, it is

fibro-thrive

Gentle hugs,

Fern

[Guest guest]

HI :-)

Ah, rest....what is that!!?? LOL See.....I am looking at

all that I am NOT doing right now, and seeing what I AM doing as resting!!

I really have cut so much out, but call it obstinance and being stubborn

but there are just some things that I refuse to give up. Well.....atleast

until I don't have the option I guess. I really don't know where

I draw the line to be honest. What I FEEL is that the more I don't

move and use what I have, the more I lose.....and yet I KNOW from my reading

and talking with you all, that I could actually be doing more damage.....so

I am a confused puppy right now. Its not making sense. What

I have to go on for me personally is that when I was in the hospital the

first time, I walked the halls incessently because I just could not lay

in the bed for more than the absolute minimum. When I left the hospital,

walking distances was something I could still do quite well. I was

having trouble mainly with things that required lifting my legs (steps,

getting into the car, putting my pants on...yes, this is comical now days....LOL).

I was maintaining it at this level for the week or so I was home.

Then I went back in for the heart stuff and, in part because it was the

first I didn't really feel good (I really had not felt that bad during

all of this believe it or not), and in part because they had me on bedrest,

and in part because they were giving me things that were keeping me somewhat

subdued, I laid there for the three days other than going potty.

I came out doing half of what I had been able to before. So there

is part of me that is afraid to stop moving and stop doing because I might

lose the option if I do. I don't honestly know if I am doing more

harm than good and I have no clue where the line is between doing too much

and just enough to maintain the ability. UGH!!

Mom is helping a ton as she is driving me everywhere right now and is

there if I need her. I CAN drive, just not any real distance and

I don't feel 100% steady with it. Requires alot of keeping my arms

up which is difficult now, and its not long before my legs start feeling

like noodles pushing on the gas. I am managing the short trip alone,

but depending on mom for the big driving (and in Dallas thats a bit) and

really any driving where the kids are in the car. Its one thing to

be alone and find I cannot drive anymore, but another to have the kids

with me if that were to happen. So just playing it safe right now.

Thanks a ton for the feedback on the potassium and Calcium. I

am already taking the Potassium and will get on the docs to give me a script

for the Calcium this next week (will give me an excuse to call and nonchalantly

ask how my blood work looked and if he found anything interesting on my

biopsy slides...LOL....little do they (the docs) know I ALWAYS have an

ulterior motive<grin>).

I will get the cardiologist set up this next week and should hear on

the MRI this week too. I'll keep you all posted on the status of

all that. Kinda kicking myself now that I did not get the MRI done

they wanted a couple of years ago, just so they could have compared, but

ah well...ain't hindsight grand!!! I promise to be careful and to

keep you all updated....means a ton to me to have you all here.

BIG hugs,

gide672@... wrote:

Hi ,

You NEED TO REST- REST REST REST REST REST. I'm serious,

even with

the Pred buzz, take it easy!! I'm a good one to talk, since my

kids

don't have all the needs that yours do-- hope your mother can keep

helping you out. I don't know about your blood tests- or what exactly

they mean. I think a potassuium supplement, especially if indicated

by the doctor, would be worthwhile. Also the calcium supplemts-

calcinosis seems to be more of a problem with young people who

have

juvenile dermatomyositis, and most PM patients take calcium. I

hope

you get to the cardiologist first(soon) and get that brain MRI.

Those

things would need to be looked at carefully first, I'd think. Please

be careful and keep letting us know what is going on. You're in

my

thoughts and prayers.

Vicki, I had my walk and didnt go as far It was

pretty hard and

I again REALLY ran out of steam. couldnt keep up with my daughter.

Didn 't feel good. I did fix an easy supper and my arms and legs

were

very shaky. Been pretty much sitting the rest of the evening, kind

of

useless. Not in tons of pain at the moment, but am and will take

the

Vioxx. I don't think I will walk tomorrow Everyone have a good

night--- <3