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Vicki,

Glad to finally hear from you. I think we were all

really starting to worry. So sorry to hear that you

are still fighting that cold. has had it for 3

weeks now. One day he seems like he is better and the

next day, as bad as ever. Do take care of yourself.

Try to check in as often as possible.

Hugs,

Cari and - JDMS

-- anzavic@... wrote:

>

> Hello everyone... I'm still alive and kicking but I

> tell you, this is

> my second time around for this head cold. I can

> handle the cold but the

> headaches are the pits. I've taken Cari's advice

> about the massaging my

> head and it does work. I've also resorted to

> icepacks on the head and

> neck. We're in a serious energy crunch in So.

> Calif. and with this

> horrible heat wave, we're unable to turn on the AC.

> The ice packs along

> with filling up the tub and sitting in there works

> wonders. I have a

> small 13 " color tv that I brought in the bathroom

> with me...that way I

> could watch tv while sitting in the tub cooling off.

> Don't worry... the

> vanity is far away from the tub so I don't mess up

> and electrocute

> myself.

>

> Ann-Marie... wonderful news about your lab tests. I

> have to agree with

> Ralph on the Prednisone. Especially when you get to

> 10mg a day.

> Dropping from there should be 1/2 to 1 mg every two

> weeks to a month.

> Also, I don't know how you do it ... teaching kids

> is hard work....if

> that were me... I would be the one to climb into the

> locker...of course

> it would have to be a very large locker.

>

> Hope everyone is doing better. I also hope that our

> HELEN is ok and

> that she's just busy having some fun or laying on

> the beach.

>

> Take care,

> Vicki-pm

>

>

__________________________________________________

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  • 2 weeks later...

Vicki,

Sorry to hear you are having such a bad time today.

Maybe you should think about getting one of those pill

holder things. You know, the ones that have a

ompartment for each part of each day. They sell

different size ones at our trusty Wal-Mart. Fill it up

each morning and then if you are unsure if you have

taken a pill you can just look in the compartment.

When was on so many meds I had them all lined up

on the counter each day, ready to go. It was the only

way I could remember from one day to the next if I had

remembered to give them to him at the right times.

's cold turned into a sinus infection and he has

been on antibiotics since Monday and is doing fine.

Shelby and I are on Antibiotics for strep throat.

That is the thing I dread being exposed to the

most. But, he was already on antibiotics before

Shelby and I came down with it. His strep test came

back negative. Since 4 of us are on anti-biotics I

have a chart on the refrigerator. I cross off each

dose as it is taken. It is the only way I can keep

track!!!

Hope you are feeling better soon!

Hugs,

Cari and - JDMS

--- anzavic@... wrote:

>

> Hi Everyone...

>

> Ann-Marie.... I'm going to tell you again, I don't

> know how you do

> it.... your little ones sound so darn cute. How do

> you keep a straight

> face when something like that happens on an ever day

> basis? Am I making

> sense?

>

> I didn't sleep well at all last night and I couldn't

> remember if I took

> my pills... so I just suffered through it and was

> awake all night long.

> Tonight will be different, you can bet that. My

> tummy is so swollen

> today that it hurts...actually everything hurts. I

> had to stop an think

> if there was any one moment last night that I went

> out and laid down on

> the road.....I sure feel like I've been run over and

> put away wet.

>

> Teddi, I want to thank you for the info... It's

> going to be hard to find

> a supplemental that will take a person under 65.

>

> Jim, did you receive my check yet? You should have

> by now....it got

> mailed out last Friday.

>

> Cari, hope is doing well and has gotten over

> his cold. Mine

> seems to come and go so I was wondering if had

> the same problem.

>

> Jax, did you ever hear from the gal that lives in

> Portland?

>

> Helen, I hope your doing better. Please drop us a

> line... I'm worried

> about you.

>

> Ev, and how are you doing on your new meds? Are you

> starting to feel

> better. Just coming down off the Prednisone will

> make you feel like a

> million bucks. Take care....

>

> And to all the rest of you... I hope you all are

> doing well..... and

> I've just drawn a HUGE blank as to the

> names...OMGosh, this is crazy....

>

> I hope that everyone is doing well today and you all

> have a great

> weekend planned.

>

> Take care,

> Vicki

>

>

__________________________________________________

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Hi Cari.... OMGosh, you have a houseful of sick people. I hope all of

you get better real soon.

I do have two pill containers but they are overflowing.... I have three

pills that won't fit in...guess it's time to go get a third one.

I did take all my pills last night and slept like a baby. I feel much

better this morning but my calf muscles are not only sore but weak.

Can't understand that... it's the muscles on the back side... the

muscles in the front have been sore for a long time. My eye muscles

feel better today also.

Today is going to be warm but we have a cool breeze blowing. I would

love to get out there and do something wonderful in the yard but I

can't....

Please give and your girls a hug from me and I do hope they all

start feeling better very soon.

Take care,

Vicki-pm

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We are all feeling better today Vicki, thank you.

Glad to hear you got a good nights sleep. That does

seem to help things. Your calves hurt? That must be

one way PM and DM are different. At least, it seems

with JDMS it is more the muscles in the hip joints and

the shoulder joints, then it seems to radiate out from

there. Glad you are having good weather. It is

starting to feel a little bit like fall here in

Georgia. Much more agreeable weather for . He

can play outside and not wilt. Happy Sunday to all!

Cari and - JDMS

--- anzavic@... wrote:

>

>

> Hi Cari.... OMGosh, you have a houseful of sick

> people. I hope all of

> you get better real soon.

>

> I do have two pill containers but they are

> overflowing.... I have three

> pills that won't fit in...guess it's time to go get

> a third one.

> I did take all my pills last night and slept like a

> baby. I feel much

> better this morning but my calf muscles are not only

> sore but weak.

> Can't understand that... it's the muscles on the

> back side... the

> muscles in the front have been sore for a long time.

> My eye muscles

> feel better today also.

>

> Today is going to be warm but we have a cool breeze

> blowing. I would

> love to get out there and do something wonderful in

> the yard but I

> can't....

>

> Please give and your girls a hug from me and I

> do hope they all

> start feeling better very soon.

>

> Take care,

> Vicki-pm

>

>

__________________________________________________

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  • 3 weeks later...

Hi Vicky,

I sent this e-mail on a telephone number, I found in our local paper,

earilier, maybe it didn,t get thru. The number to call is --,

which after calling, they will ask a few questions and send you some

brochures. The name of the Program is " The Medicine Program " After you get

approved, your Medicine is only $5.00 each Prescription. I sent my

prescriptions in with a check for each one. It takes 3--4 weeks to get

approved. I hope this isn,t too good to be true!! By the way the Medicine

has to go to the Drs. office and you can pick it up there--I ask my Dr. if he

would accept it and he was willing to do it. Let me know later how you come

out.

Your drug bill, is something else!! Anyone else that wants to call the

number above are certainly welcome.

Love, Ev.

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Oh Ev.... gosh, my mind is like mush. I do remember you sending that

out and I saved it... then forgot all about it. Thank you sooooooo much

for sending it out again... I'll get right on it and see what happens.

Hope your feeling much, much better.

Take care,

Hugs

Vicki-PM

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  • 4 weeks later...

> I wrote to the MDA to ask a question. Today I received there

> response...they answered every question I didn't ask and never

> answered the question I did ask... but they did send the page for

> the MAA Outlook. Since we might have some people that have not

> read it, I put it on my web site. I was unable to retreve the URL

> they sent since I'm on Webtv but this will work.

>

> http://www.angelfire.com/in2/mandy2/MAALetter.html

If you chop off the " MAALetter.html " part of that URL, you get Vicki's

home page. I hadn't seen it before! You tell your story very well.

Thanks for the link to 's Diary.

Ralph

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

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

Will Juggle for Food. RKBA!

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Dear Vicki,

This article is FANTASTIC... Thank you for putting it

on your website and posting the link on this list.

I am sorry that you did not get the information that

you wanted from them, though. At least this article

makes what could have been a negative experience

sort of worthwhile.

God Bless you, my friend.

Elaine

“Come, let us sing for joy to the Lord;

let us shout aloud to the Rock of our salvation.

Let us come before him with thanksgiving

and extol him with music and song.” Psalm 95:1-2

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Thank you Ralph, the other site I made will also have 's Diary on

it as well. I'm just not happy with the set up of the table so I'm

trying to figure out how to make it easier to add to.

Vicki

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  • 2 years later...
Guest guest

Welcome, I know that you will find solice in this group, bit I am sorry you have

the need to join. Let us know haw things are going along the way.

Hello

Hello everyone,

I am a new member of this group and just wanted to say

hello to everyone. I was diagnosed with Iga Neph in January,after a

biopsy, although the specialsit thought I had had it for a few years.

I have around 50% kidney function left and are taking blood pressure

medication to slow down the process. I live in Sheffield, UK, male,

and 29 years old.

Darren

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Guest guest

Hi Darren,

Welcome to the group. Sorry to hear that you've been diagnosed with IgAN. I'm

25, and was diagnosed almost 2 years ago. Sounds a bit like that the sort of

blood pressure medication you are on is what's called an ACE inhibitor, as this

particular type of BP med is known to help slow the process down. Anyway,

welcome once again.

Jennie

darrenlath wrote:Hello everyone,

I am a new member of this group and just wanted to say

hello to everyone. I was diagnosed with Iga Neph in January,after a

biopsy, although the specialsit thought I had had it for a few years.

I have around 50% kidney function left and are taking blood pressure

medication to slow down the process. I live in Sheffield, UK, male,

and 29 years old.

Darren

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  • 4 years later...
Guest guest

Angel give your Mom a big hug from us and tell her we're praying for her. Feel better soon.

Please keep us posted.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

hello this is marilyns daughter angel... marilyn wanted me to let you

all no she is in the hospital and will not be able to talk to you for a

little will... she is sorry.. and will talk to you all when she gets

home...

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Hi Angel,

You take good care of your mom and let us know how she is doing. Give her a hug for me and tell her that I am saying a prayer for her.

Hugs, Joyce D.

Pulmonary Fibrosis/ Lupus 1997 Bronchiectasis 2004 Indiana >> Angel give your Mom a big hug from us and tell her we're praying for her.> Feel better soon.> Please keep us posted.> Love and Prayers, Peggy 9/04 ipf Florida "Worry looks around, Sorry> looks back, Faith looks up"> > hello this is marilyns daughter angel... marilyn wanted me to let you> all no she is in the hospital and will not be able to talk to you for a> little will... she is sorry.. and will talk to you all when she gets> home...>

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Marilyn,

Welcome home. Hope you are getting good care. This is a hard road that we travel but you gotta keep walking. Try to get rest before May 5. Let us know what the doc says then.

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA >> I got out of hospital today it was long this is getting to much for me > Got to go to wedding tho beautiful thin keept getting worse so went in > thay found some spots the DR. sead we would talk in his office the 5 of > May what now lungs not letting heart get nuff oxigen keep having > congestif heart failur but God gives me stringth to go on an your > prayers help oh has eneyone herd about the lung transplant in Phinex > Az. I live in Apache Jct. Az. an never herd till it was in the Paper > hope it helps a lot of people in this earea well got to go God bless > all your all in my prayers . IPF May 2006 or longer GODS > STRINGTH KEEPS ME GOING>

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Guest guest

Marilyn, Glad to hear you are out of the hospital. Thanks to your daughter for letting us know you were in. Is she the one who just got married? Rest up and take care. Kerry IPF '01 S. INmarilyn hill wrote: I got out of hospital today it was long this is getting to much for me Got to go to wedding tho beautiful thin keept getting worse so went in thay found some spots the

DR. sead we would talk in his office the 5 of May what now lungs not letting heart get nuff oxigen keep having congestif heart failur but God gives me stringth to go on an your prayers help oh has eneyone herd about the lung transplant in Phinex Az. I live in Apache Jct. Az. an never herd till it was in the Paper hope it helps a lot of people in this earea well got to go God bless all your all in my prayers . IPF May 2006 or longer GODS STRINGTH KEEPS ME GOING

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

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Guest guest

! so good to hear from you. I wish I could be there to hold you close for a minute.

We won't forget you . You have shared yourself with us during the harder parts of our disease. Sharing always brings us closer to each other.

We pray for you dear-heart to be comforted. I think you are surrounded with God's angels all the time~~~

Sher ipf 3-06 OR."Don't worry about tomorrow, God is already there"

hello

hello everyone

Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I get real scared, I envison Him right there with me, holdig me close. it help.

To the new people...just hang on......have faith.

Vicky....email me.

gonna plead with my husband to call a different hospice.

please dont forget me

L.

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Guest guest

Lentz,

Of course you are not forgotten! I think of you so often and wonder how you are doing and if you know how much you mean to all of us. You have been so brave to try to keep in touch with us. It is so meaningful to hear from you. I am just so sorry that you are having to fight this fight.

Remember, , that God is faithful. He loves you more than you can even know.

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA >> hello everyone> Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I get real scared, I envison Him right there with me, holdig me close. it help. > To the new people...just hang on......have faith.> Vicky....email me.> > gonna plead with my husband to call a different hospice.> > please dont forget me> > L.>

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Guest guest

,

I have thought about you many many times and thought you had moved..

I am glad you are still with us. YES the Father has a plan. When you feel so frustrated just

close your eyes and FEEL the presents of the Lord with you. The Angles are holding you,

hovering around you. .

I am praying now in tears but they are tears of strength for you and peace for you

Oh my God please remove the fear, We know the devil is a liar. I know you are going to get

your reward . I can close my eyes and see me sitting beside the Father, Son and Holy Ghosts

presents. I can only imagine.

God be with you..

Love and Prayers, Peggy 9/04 ipf Florida

" Worry looks around, Sorry looks back, Faith looks up "

hello everyone

Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I get real scared, I envison Him right there with me, holdig me close. it help.

To the new people...just hang on......have faith.

Vicky....email me.

gonna plead with my husband to call a different hospice.

please dont forget me

L.

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L.

Very Glad to hear from you. Just wanted you to know that I am praying for you. I know God is there holding your hand. Take care of yourself.

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> hello everyone> Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I get real scared, I envison Him right there with me, holdig me close. it help. > To the new people...just hang on......have faith.> Vicky....email me.> > gonna plead with my husband to call a different hospice.> > please dont forget me> > L.>

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Hi Jane, just wondering if the smoke is bothering you ? I haven't stuck my head out the door for three days.

It is really stinky.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

L.

Very Glad to hear from you. Just wanted you to know that I am praying for you. I know God is there holding your hand. Take care of yourself.

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> hello everyone

> Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I g

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Guest guest

I guess I should let everyone know there are wildfires in Ga, and the wind is blowing the smoke all the way to us in middle Fl. It was heavy for the past two days. Better today.

Love and Prayers, Peggy 9/04 ipf Florida

" Worry looks around, Sorry looks back, Faith looks up "

Hi Jane, just wondering if the smoke is bothering you ? I haven't stuck my head out the door for three days.

It is really stinky.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

L.

Very Glad to hear from you. Just wanted you to know that I am praying for you. I know God is there holding your hand. Take care of yourself.

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> hello everyone

> Its been long time. Guess you thought I had probably died or somoething. Well, I am still home. on Hosice.; Mostof the time I am not in my right mind. I take a whole lot of morpmhine and antivan. I try to fight taking this medeine but someone I always lose and then I am out of it again. My life consists of sleeping and being told to swallow this medecine. I do have outbreaks (which are bed). I pray to be the next person to die from this. I try not to complain but only to remember that once I was a vibrant, smart happy individiual. I have had this disease for almost 6 years, so I have beat the odds. And eben this morning, being on the computer is something special. Just all pray hard that I can be strong. That I can swallawthose pills.and find some contenment in life. I dont understand any of t but God has promised.....and I do believe. When I g

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