Re: Happy Holidays

[Guest guest]

Glad to hear from you but sorry you are not

doing as well as you had hoped. Just hang

in there.....it does get better but it takes time

.....lots of time. Resting is good. It gives your

muscles a chance to heal. Remember we

are all going thru the same thing or have

been there/done that so feel free to ask

questions, gripe, or share good news.

It's funny how you don't miss the little things

until they are gone. One of my best " steps

forward " was when I could take a shower

by myself (and of course the walker) For

several months my son who was taking

care of me had to help me bathe. Very

embarressing for the poor guy (age 35)

but we both got thru it......LOL

Teddi

mailto:teddifromok@...

[Guest guest]

Hi and Happy Holidays to you, too. I remember being very worried

about getting no exercise when I first got sick. (As you know, it's really

impossible to exercise...it's almost impossible to get out of a chair!) I

was introduced to Tai Chi during my physical therapy sessions, and I really

liked it. However, I don't know if it really helped with strength, etc. The

prednisone is a big help, but it isn't really a " cure " ...we all just have to

hang in there and try our best to keep things going. Improvement takes a

while, but it will come, . My legs feel like cement weights by

afternoon, so I just stop what I'm doing and give myself some rest. I think

the shakes are from the prednisone dosage. I remember it from my time on

high doses. Things will get better. Annette

Happy Holidays

Dear Everyone,

First and foremost I want to wish everyone a Happy

Hanukkah and Merry Christmas. I hope that we all have

a healthier New Year filled with good things to come.

I don't write much but I am an avid reader and you

guys are truly a stitch. I admire your humor and

tenacity. Maybe someday we could organize our own

" conference " . Wish I could have joined the lunch

bunch. Sounded like lots of fun. I live in Cleveland

Ohio, Snowbelt, which of course we have no snow this

year, and I am heartbroken. Really love the snow.

Very strange weather here.

These past two months have been very difficult for me.

I still can't believe I have this disease and how

badly it has incapacitated me. I am still on 60mg. of

prednisone and my CPK has dropped from 20K to 6K, so

has my liver gone into the mid 200's and my aldolase

has come down. Still not normal so they won't lower

the pred.yet. My face is getting round, and I think I

have put on some pounds. But what I find most

frustrating is my level of fatigue. Why am I so shaky

and tired all the time. I would say that 75% of time

is spent sleeping/resting. My legs feel like they

weigh 200lbs each. I think I should be improving and

that really scares me.

I used to feel blessed that it was only PM, and not MS

or some other diseases, but now I wonder if we aren't

as bad as they are? I want to go back to working,

back to my old life and perhaps that is not going to

happen?

It is like a catch-22. I am being told to rest, not

move, and I think that is making me weaker. Any

suggestions or thoughts?

Please bring me up to speed on everyone? Vicki, how

are you doing, what are your days like? Ed, when are

you going into the hospital? Did anyone have any

thoughts about the restless leg syndrome and iron

deficiencies?

Hope to hear from you guys,

__________________________________________________

[Guest guest]

,

So good to hear from you. I grew up in Minnesota so I know all about snow,

snow, snow. I always loved the first snow. Come February I was over it but

something very magical about the big, first snowfall that left everything in

a blanket of white. Perhaps you will have snow for Christmas. I'll cross

my fingers for you.

's CPK level was in the normal range for a few months before his

muscles caught on. He showed fast improvement with the prednisone but the

CPK level was normal long before his muscles were.

Hang in there!

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: ourmyositis

>Subject: Happy Holidays

>Date: Tue, 11 Dec 2001 23:05:07 -0800 (PST)

>

>Dear Everyone,

>

>First and foremost I want to wish everyone a Happy

>Hanukkah and Merry Christmas. I hope that we all have

>a healthier New Year filled with good things to come.

>

>I don't write much but I am an avid reader and you

>guys are truly a stitch. I admire your humor and

>tenacity. Maybe someday we could organize our own

> " conference " . Wish I could have joined the lunch

>bunch. Sounded like lots of fun. I live in Cleveland

>Ohio, Snowbelt, which of course we have no snow this

>year, and I am heartbroken. Really love the snow.

>Very strange weather here.

>

>These past two months have been very difficult for me.

> I still can't believe I have this disease and how

>badly it has incapacitated me. I am still on 60mg. of

>prednisone and my CPK has dropped from 20K to 6K, so

>has my liver gone into the mid 200's and my aldolase

>has come down. Still not normal so they won't lower

>the pred.yet. My face is getting round, and I think I

>have put on some pounds. But what I find most

>frustrating is my level of fatigue. Why am I so shaky

>and tired all the time. I would say that 75% of time

>is spent sleeping/resting. My legs feel like they

>weigh 200lbs each. I think I should be improving and

>that really scares me.

>

>I used to feel blessed that it was only PM, and not MS

>or some other diseases, but now I wonder if we aren't

>as bad as they are? I want to go back to working,

>back to my old life and perhaps that is not going to

>happen?

>

>It is like a catch-22. I am being told to rest, not

>move, and I think that is making me weaker. Any

>suggestions or thoughts?

>

>Please bring me up to speed on everyone? Vicki, how

>are you doing, what are your days like? Ed, when are

>you going into the hospital? Did anyone have any

>thoughts about the restless leg syndrome and iron

>deficiencies?

>

>Hope to hear from you guys,

>

>

>

>__________________________________________________

>

[Guest guest]

Ellen,

Thanks for the christmas wishes. I don't usually post messages but I have

been reading the group for about 2 years. I am in permanent AF but it is

not as bad as some people report. I have never been to ER.

It is only when I rest that I feel the heart jumping around in my chest. Of

course I can't do any vigorous exercise but I do a lot of walking.

merry christmas to everyone from sunny Australia.

regards

Hans

Happy Holidays

> Happy Holidays everyone! Hope you enjoy the Christmas card. Click below

> and be sure to include the sound!

>

> http://holidays.blastcomm.com

>

> Ellen

> (7 days till Xmas)

>

>

>

> Web Page - http://groups.yahoo.com/group/AFIBsupport

> FAQ -

http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> For more information: http://www.dialsolutions.com/af

> Unsubscribe: AFIBsupport-unsubscribe

> List owner: AFIBsupport-owner

> For help on how to use the group, including how to drive it via email,

> send a blank email to AFIBsupport-help

>

> Nothing in this message should be considered as medical advice, or should

be acted upon without consultation with one's physician.

>

>

>

[Guest guest]

In a message dated 12/19/2003 4:19:02 PM Pacific Standard Time,

geottobeilz@... writes:

<< I am in permanent AF but it is

not as bad as some people report. I have never been to ER.

It is only when I rest that I feel the heart jumping around in my chest. Of

course I can't do any vigorous exercise but I do a lot of walking.

>>

Hans,

My brother, who has been in permanent afib for at least twenty to thirty

years, says that he usually is not aware of symptoms. He does not feel the

" jumping " sensation in the chest unless he overeats and goes to bed too soon.

Unlike me, however, he can eat anything he chooses and has no problems. He

reports

that the only time he is aware of being in permanent afib is when he does

strenuous exercise like chopping wood. He then feels sensations of weakness in

his arms and legs but no sensations in his heart. He is always surprised to

see how irregular his heart beat is when he is hooked up to a monitor, for

example, after surgery. He has no sensation of the irregularity.

However, he says that when he was still paroxysmal on the way to permanent

afib, he had the continuous " jumping " sensations in the chest that many of us

experience. Those sensations would keep him awake for nights at a time, but he

didn't know what the problem was. He just went on with his life under great

difficulty. He actually feels better now that he is in permanent afib. I'm

sure this isn't true of everyone, however; but at least some people may

actually feel better in permanent afib than when experiencing paroxysmal afib

with

its usual symptoms.

in sinus in Seattle

[Guest guest]

Subject: Re: Happy Holidays

Merry Christmas and Happy New Year to Hans and all Afibbers in sunny

Australia from sunny, but cold, Wisconsin.

Irene

> Ellen,

>

> Thanks for the christmas wishes. I don't usually post messages but I have

> been reading the group for about 2 years. I am in permanent AF but it is

> not as bad as some people report. I have never been to ER.

> It is only when I rest that I feel the heart jumping around in my chest.

Of

> course I can't do any vigorous exercise but I do a lot of walking.

>

> merry christmas to everyone from sunny Australia.

>

> regards

> Hans

> Happy Holidays

>

>

> > Happy Holidays everyone! Hope you enjoy the Christmas card. Click

below

> > and be sure to include the sound!

> >

> > http://holidays.blastcomm.com

> >

> > Ellen

> > (7 days till Xmas)

> >

> >

> >

> > Web Page - http://groups.yahoo.com/group/AFIBsupport

> > FAQ -

> http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm

> > For more information: http://www.dialsolutions.com/af

> > Unsubscribe: AFIBsupport-unsubscribe

> > List owner: AFIBsupport-owner

> > For help on how to use the group, including how to drive it via email,

> > send a blank email to AFIBsupport-help

> >

> > Nothing in this message should be considered as medical advice, or

should

> be acted upon without consultation with one's physician.

> >

> >

> >

[Guest guest]

I'd like to send out a heartfelt Happy Holidays to all!

A big Congratulations to all who have had transplants over the past year.

A huge Thank You to all your donors for their gift of life.

And a Humungous Thank You to everyone here for all the support and help you

have all given me as I work my way thru the early stages of diagnosis. You

all have been a lifesaver in some very desperate hours, Thank You Pierre for

all you have done to bring this group into existence.

May you Holidays be Joyous!

Blessed Be,

Amy