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Ok gang,

It's time for roll-call. the list has been quiet lately, and we're wondering what's up with everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback.

I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there.

and Rose, hows the carpal tunnel sx healing? Ron, I know you've been going thru some personal stuff-- I do hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you?

Debbie, Quint, Rose, Connie, it's good to see all of you post.

We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter.

As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you.

Joan, check in my friend, I hope you're doing ok.

To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so know that if you do have questions-- fire them at us. WE'll get to them within a day or so. We are still here for all of you.

With compassion and empathy for all of us,

Tracie

NS co-owner/moderator

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How about ? Has anyone heard from her

Terri

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

wondering

> what's up with everyone. Have ya all gone to the chat rooms? How do

you

> like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of us

> have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> place to ask questions, get some support and let out some frustration

or share

> some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so it's

> antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever---- let

> us know. Rose and Debbie and I are holding down the fort until Darlene

can

> be back-- so know that if you do have questions-- fire them at us.

WE'll get

> to them within a day or so. We are still here for all of you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

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Share on other sites

Marla,

Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland

infections. What a terrible location to deal with. I hope it is better

soon and you have my complete sympathy.

Terri G.

>

> Hi Tracie,

>

> I am battling an infection myself, one of my bartholin gland became

> infected, and having an infection just wipes us out, I've been

sleeping

> more, etc.. You know. I am now on antibiotics and hot baths, and its

> improving, if it didn't then Incise and drain was the next step, can't

say

> that sounds like fun! My body sure tells me when I overdue as I did in

Aug.

> taught a class for the Medical Assisting dept, on office training and

I

> loved it, although way too much time, it was intense for four weeks.

Now I'm

> back to somewhat normal two classes, but just a couple hours at a

time.

>

> I'm sorry I was out of the loop but seating for long periods of time

is

> still a little difficult so I'm way behind in emails. And will try to

do

> some catching up.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

> Sent: Saturday, September 02, 2006 11:18 PM

> To: neurosarcoidosis

> Subject: Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

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Share on other sites

Hi

Tracie,

I am battling

an infection myself, one of my bartholin gland became infected, and

having an infection just wipes us out, I’ve been sleeping more, etc.. You

know. I am now on antibiotics and hot baths, and its improving, if it

didn’t then Incise and drain was the next step, can’t say that

sounds like fun! My body sure tells me when I overdue as I did in Aug. taught

a class for the Medical Assisting dept, on office training and I loved it,

although way too much time, it was intense for four weeks. Now I’m back

to somewhat normal two classes, but just a couple hours at a time.

I’m

sorry I was out of the loop but seating for long periods of time is still a

little difficult so I’m way behind in emails. And will try to do

some catching up.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Saturday, September 02, 2006

11:18 PM

To:

neurosarcoidosis

Subject: Check

in time!

Ok gang,

It's time for roll-call. the list has been quiet lately, and we're

wondering what's up with everyone. Have ya all gone to the chat

rooms? How do you like the chats-- we could use some feedback.

I know that for the last bit, we had a shortage of chat hosts-- to many of us

have been to sick or recovering from surgery to be there.

and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been going thru some personal stuff-- I do hope you're ok. I saw that

you'll be back at the chats now. Thank you. Marla, what is up with

you? How are you?

Debbie, Quint, Rose, Connie, it's good to see all of you post.

We are up to 420+ members, and for the " newbies " -- welcome.

You've found a place to ask questions, get some support and let out some

frustration or share some joy and laughter.

As for me, I'm finding it takes a few days longer to bounce back after my

infusions, and this time I ended up with a whopper of a sinus infection- so

it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you.

Joan, check in my friend, I hope you're doing ok.

To all the others, please if you've got questions, concerns, whatever---- let

us know. Rose and Debbie and I are holding down the fort until Darlene

can be back-- so know that if you do have questions-- fire them at us.

WE'll get to them within a day or so. We are still here for all of

you.

With compassion and empathy for all of us,

Tracie

NS co-owner/moderator

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Share on other sites

Thanks

Terri, I’m trying to get caught up on emails, but have to take breaks and

get off this chair! J

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1

Sent: Sunday, September 03, 2006

7:07 PM

To: Neurosarcoidosis

Subject: Re:

Check in time!

Marla,

Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland

infections. What a terrible location to deal with. I hope it is better

soon and you have my complete sympathy.

Terri G.

>

> Hi Tracie,

>

> I am battling an infection myself, one of my bartholin gland became

> infected, and having an infection just wipes us out, I've been

sleeping

> more, etc.. You know. I am now on antibiotics and hot baths, and its

> improving, if it didn't then Incise and drain was the next step, can't

say

> that sounds like fun! My body sure tells me when I overdue as I did in

Aug.

> taught a class for the Medical Assisting dept, on office training and

I

> loved it, although way too much time, it was intense for four weeks.

Now I'm

> back to somewhat normal two classes, but just a couple hours at a

time.

>

> I'm sorry I was out of the loop but seating for long periods of time

is

> still a little difficult so I'm way behind in emails. And will try to

do

> some catching up.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf Of tiodaat@...

> Sent: Saturday, September 02, 2006 11:18 PM

> To: neurosarcoidosis

> Subject: Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

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Share on other sites

Hi all, I haven't been around for the past few days because I had a fall down the stairs in my house and hit my head good on the railing. I was diagnosed with a concussion. Boy, I would never wish that pain on anyone. It feels better when I sit up straight rather than lay down. So I will be around more. I am on some pain meds. Just wanted to check in...... DebbiePS I have been very unlucky mlately first my wrist and than this.tiodaat@... wrote: Ok gang, It's time for roll-call. the list has been quiet lately, and we're wondering what's up with

everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback. I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there. and Rose, hows the carpal tunnel sx healing? Ron, I know you've been going thru some personal stuff-- I do hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you? Debbie, Quint, Rose, Connie, it's good to see all of you post. We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter. As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you. Joan, check in my friend, I hope you're doing ok. To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so know that if you do have questions-- fire them at us. WE'll get to them within a day or so. We are still here for all of you. With compassion and empathy for all of us, Tracie NS co-owner/moderator __________________________________________________

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Hello Everyone,

This

is the other Terrie () I’m still here. The Sarcoidosis has been

kicking my body bad. I have the VNA & Meals on wheels to help me now. My

motorized wheelchair and hospital bed are real life savers. The meds aren’t

working again so they’re planning on keeping the Steroids, Cellcept and

Remicade but changing the IV to ever 4 weeks instead of 8 weeks. The Imuran,

Cytoxan (po), Plaqinel, methotrexate etc. haven’t been working. I’ve

never had a remission since my diagnosis in December 1998. For those who have

had a remission do you still have to take the meds? I’ve been on steroids

for 6 ½ years and unable to get off, every time they start to lower the dose

the Sarcoidosis flares real bad. Enough of my babbling on.

  I’ve

tried to get into chat but the Sarcoidosis brain caused me to be unable to

figure it out. If I’m awake at the next chat time I’ll try again. I

don’t post very often but I try to read all the emails.  My best wishes

to all of you and hope for a pain free day. Those who are still able to work pace

your self and good luck. Before I ended up in the wheelchair due to my bone Sarcoidosis

in my hip & knees I was a Nurse for over 25 years.  I really miss working

and being independent. When I have a bad seizure and wet the bed, I’m at

my lowest because my husband has to change it. It’s hard for him to deal

with, he has said to the MD’s the hardest thing is watching someone you

love dying in front of you and your unable to do anything. Today’s a hard

day for me; I’ve been crying and feeling down. But enough of my pity

party. Take Care everyone and I’ll try to post more often. Love to all

Terrie

PS

Congrats on your upcoming Marriage , I’m very happy for you

Check

in time!

Ok gang,

It's time for roll-call. the list has been quiet lately, and we're

wondering what's up with everyone. Have ya all gone to the chat

rooms? How do you like the chats-- we could use some feedback.

I know that for the last bit, we had a shortage of chat hosts-- to many of us

have been to sick or recovering from surgery to be there.

and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been going thru some personal stuff-- I do hope you're ok. I saw that

you'll be back at the chats now. Thank you. Marla, what is up with

you? How are you?

Debbie, Quint, Rose, Connie, it's good to see all of you post.

We are up to 420+ members, and for the " newbies " -- welcome.

You've found a place to ask questions, get some support and let out some

frustration or share some joy and laughter.

As for me, I'm finding it takes a few days longer to bounce back after my

infusions, and this time I ended up with a whopper of a sinus infection- so

it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you.

Joan, check in my friend, I hope you're doing ok.

To all the others, please if you've got questions, concerns, whatever---- let

us know. Rose and Debbie and I are holding down the fort until Darlene

can be back-- so know that if you do have questions-- fire them at us.

WE'll get to them within a day or so. We are still here for all of

you.

With compassion and empathy for all of us,

Tracie

NS co-owner/moderator

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Debbie, what are you doing, trying to slide down the banister? You probably wouldn't get hurt as bad if you were skateboarding! (But please don't try it.)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Check in time!Date: Mon, 4 Sep 2006 09:50:11 -0700 (PDT)

Hi all, I haven't been around for the past few days because I had a fall down the stairs in my house and hit my head good on the railing. I was diagnosed with a concussion. Boy, I would never wish that pain on anyone. It feels better when I sit up straight rather than lay down. So I will be around more. I am on some pain meds. Just wanted to check in...... DebbiePS I have been very unlucky mlately first my wrist and than this.tiodaat (AT) aol (DOT) com wrote:

Ok gang,It's time for roll-call. the list has been quiet lately, and we're wondering what's up with everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback.I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there. and Rose, hows the carpal tunnel sx healing? Ron, I know you've been going thru some personal stuff-- I do hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you?Debbie, Quint, Rose, Connie, it's good to see all of you post. We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter.As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg. Kuwaiti Kim, are you out there? We're worried about you. Joan, check in my friend, I hope you're doing ok. To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so know that if you do have questions-- fire them at us. WE'll get to them within a day or so. We are still here for all of you.With compassion and empathy for all of us,TracieNS co-owner/moderator

__________________________________________________

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Hi, Terrie. I'm sorry to hear you've had such a struggle. Bless your husband for being so caring & outspoken. Do the doctors respond, or just shrug?

Don't apologize for having a pity party--just remember to invite the rest of us!

What time zone are you in, Terrie? Let us know which day you want to try the chatroom & somebody will help you.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: Check in time!Date: Mon, 4 Sep 2006 14:34:30 -0400

Hello Everyone,

This is the other Terrie () I’m still here. The Sarcoidosis has been kicking my body bad. I have the VNA & Meals on wheels to help me now. My motorized wheelchair and hospital bed are real life savers. The meds aren’t working again so they’re planning on keeping the Steroids, Cellcept and Remicade but changing the IV to ever 4 weeks instead of 8 weeks. The Imuran, Cytoxan (po), Plaqinel, methotrexate etc. haven’t been working. I’ve never had a remission since my diagnosis in December 1998. For those who have had a remission do you still have to take the meds? I’ve been on steroids for 6 ½ years and unable to get off, every time they start to lower the dose the Sarcoidosis flares real bad. Enough of my babbling on.

I’ve tried to get into chat but the Sarcoidosis brain caused me to be unable to figure it out. If I’m awake at the next chat time I’ll try again. I don’t post very often but I try to read all the emails. My best wishes to all of you and hope for a pain free day. Those who are still able to work pace your self and good luck. Before I ended up in the wheelchair due to my bone Sarcoidosis in my hip & knees I was a Nurse for over 25 years. I really miss working and being independent. When I have a bad seizure and wet the bed, I’m at my lowest because my husband has to change it. It’s hard for him to deal with, he has said to the MD’s the hardest thing is watching someone you love dying in front of you and your unable to do anything. Today’s a hard day for me; I’ve been crying and feeling down. But enough of my pity party. Take Care everyone and I’ll try to post more often. Love to all Terrie

PS Congrats on your upcoming Marriage , I’m very happy for you

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat (AT) aol (DOT) comSent: Sunday, September 03, 2006 2:18 AMTo: neurosarcoidosis Subject: Check in time!

Ok gang,It's time for roll-call. the list has been quiet lately, and we're wondering what's up with everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback.I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there. and Rose, hows the carpal tunnel sx healing? Ron, I know you've been going thru some personal stuff-- I do hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you?Debbie, Quint, Rose, Connie, it's good to see all of you post. We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter.As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg. Kuwaiti Kim, are you out there? We're worried about you. Joan, check in my friend, I hope you're doing ok. To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so know that if you do have questions-- fire them at us. WE'll get to them within a day or so. We are still here for all of you.With compassion and empathy for all of us,TracieNS co-owner/moderator

Check the weather nationwide with MSN Search: Try it now!

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Terrie,

I’m sorry to hear you are having such a hard time, glad you’re

getting some help. I’ve had two remissions since diagnosed in 94, both

times I was able to get off all drugs, but I was only on steroids then, now I’ve

been “active” for about 6 years but am very blessed as plaquanil

and Methotrexate seem to keep me good. I was also blessed with a “partial”

spiritual healing last Nov. so I can’t complain, but I sure can pray for

you or send you positive feelings which ever you prefer just know you are in my

thoughts.  I have been in nursing for the past 30 years, first as a Med. 

Assist. Then went back and got my RN, was L & D nurse for years loved it, but

I can’t take the 12 or even 8 hour shifts at the hospital any more, so I teach

part time at a community college, nursing pre req. and in their M.A. program,

and I sell Kay, so my hours are flexible and I don’t have to do any

long hours at one time any more.  Glad you checked in, and know positive

thoughts are here for you Terrie, I hope tomorrow is a better day, and each one

after that just gets better for you.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Terrie & Tarbox

Sent: Monday, September 04, 2006

11:35 AM

To: Neurosarcoidosis

Subject: RE:

Check in time!

Hello

Everyone,

This

is the other Terrie () I’m still here. The Sarcoidosis has been

kicking my body bad. I have the VNA & Meals on wheels to help me now. My

motorized wheelchair and hospital bed are real life savers. The meds

aren’t working again so they’re planning on keeping the Steroids,

Cellcept and Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

The Imuran, Cytoxan (po), Plaqinel, methotrexate etc. haven’t been

working. I’ve never had a remission since my diagnosis in December 1998.

For those who have had a remission do you still have to take the meds?

I’ve been on steroids for 6 ½ years and unable to get off, every time

they start to lower the dose the Sarcoidosis flares real bad. Enough of my

babbling on.

I’ve

tried to get into chat but the Sarcoidosis brain caused me to be unable to

figure it out. If I’m awake at the next chat time I’ll try again. I

don’t post very often but I try to read all the emails. My best

wishes to all of you and hope for a pain free day. Those who are still able to

work pace your self and good luck. Before I ended up in the wheelchair due to

my bone Sarcoidosis in my hip & knees I was a Nurse for over 25 years.

I really miss working and being independent. When I have a bad seizure and

wet the bed, I’m at my lowest because my husband has to change it.

It’s hard for him to deal with, he has said to the MD’s the hardest

thing is watching someone you love dying in front of you and your unable to do

anything. Today’s a hard day for me; I’ve been crying and feeling

down. But enough of my pity party. Take Care everyone and I’ll try to

post more often. Love to all Terrie

PS

Congrats on your upcoming Marriage , I’m very happy for you

-----Original

Message-----

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of tiodaat (AT) aol (DOT) com

Sent: Sunday, September 03, 2006

2:18 AM

To: neurosarcoidosis

Subject: Check

in time!

Ok gang,

It's time for roll-call. the list has been quiet lately, and we're

wondering what's up with everyone. Have ya all gone to the chat

rooms? How do you like the chats-- we could use some feedback.

I know that for the last bit, we had a shortage of chat hosts-- to many of us

have been to sick or recovering from surgery to be there.

and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been going thru some personal stuff-- I do hope you're ok. I saw that

you'll be back at the chats now. Thank you. Marla, what is up with

you? How are you?

Debbie, Quint, Rose, Connie, it's good to see all of you post.

We are up to 420+ members, and for the " newbies " -- welcome.

You've found a place to ask questions, get some support and let out some

frustration or share some joy and laughter.

As for me, I'm finding it takes a few days longer to bounce back after my

infusions, and this time I ended up with a whopper of a sinus infection- so

it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you.

Joan, check in my friend, I hope you're doing ok.

To all the others, please if you've got questions, concerns, whatever---- let

us know. Rose and Debbie and I are holding down the fort until Darlene

can be back-- so know that if you do have questions-- fire them at us.

WE'll get to them within a day or so. We are still here for all of

you.

With compassion and empathy for all of us,

Tracie

NS co-owner/moderator

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Debbie I

am sorry to hear about your fall, I do hope you are recovering good to hear

from you. Take care and take it slow.

Blessings,

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Monday, September 04, 2006

9:50 AM

To: Neurosarcoidosis

Subject: Re:

Check in time!

Hi all,

I haven't been around

for the past few days because I had a fall down the stairs in my house and hit

my head good on the railing. I was diagnosed with a concussion.

Boy, I would never wish that pain on anyone. It feels better when I

sit up straight rather than lay down. So I will be

around more. I am on some pain meds. Just wanted to check

in...... Debbie

PS I have been very unlucky mlately first my wrist and than this.

tiodaat (AT) aol (DOT) com

wrote:

Ok gang,

It's time for roll-call. the list has been quiet lately, and we're

wondering what's up with everyone. Have ya all gone to the chat

rooms? How do you like the chats-- we could use some feedback.

I know that for the last bit, we had a shortage of chat hosts-- to many of us

have been to sick or recovering from surgery to be there.

and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been going thru some personal stuff-- I do hope you're ok. I saw that

you'll be back at the chats now. Thank you. Marla, what is up with

you? How are you?

Debbie, Quint, Rose, Connie, it's good to see all of you post.

We are up to 420+ members, and for the " newbies " -- welcome.

You've found a place to ask questions, get some support and let out some frustration

or share some joy and laughter.

As for me, I'm finding it takes a few days longer to bounce back after my

infusions, and this time I ended up with a whopper of a sinus infection- so

it's antibiotic time. Uggg.

Kuwaiti Kim, are you out there? We're worried about you.

Joan, check in my friend, I hope you're doing ok.

To all the others, please if you've got questions, concerns, whatever---- let

us know. Rose and Debbie and I are holding down the fort until Darlene

can be back-- so know that if you do have questions-- fire them at us.

WE'll get to them within a day or so. We are still here for all of

you.

With compassion and empathy for all of us,

Tracie

NS co-owner/moderator

__________________________________________________

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Share on other sites

I know I am getting too old for that stuff !!!Rose wrote: Debbie, what are you doing, trying to slide down the banister? You probably wouldn't get hurt as bad if you were skateboarding! (But please don't try it.) Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Check in time!Date: Mon, 4 Sep 2006 09:50:11 -0700 (PDT) Hi all, I haven't been around for the past few days because I had a fall down the stairs in my house and hit my head good on the railing. I was diagnosed with a concussion. Boy, I would never wish that pain on anyone. It feels better when I sit up

straight rather than lay down. So I will be around more. I am on some pain meds. Just wanted to check in...... DebbiePS I have been very unlucky mlately first my wrist and than this.tiodaat (AT) aol (DOT) com wrote: Ok gang,It's time for roll-call. the list has been quiet lately, and we're wondering what's up with everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback.I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there. and Rose, hows the carpal tunnel sx healing? Ron, I know you've been going thru some personal stuff-- I do

hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you?Debbie, Quint, Rose, Connie, it's good to see all of you post. We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter.As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg. Kuwaiti Kim, are you out there? We're worried about you. Joan, check in my friend, I hope you're doing ok. To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so know that if you do have questions-- fire them at us. WE'll get to them

within a day or so. We are still here for all of you.With compassion and empathy for all of us,TracieNS co-owner/moderator __________________________________________________

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Hi Terrie,

This is the other Terri. I am glad you posted. I am sorry to hear that

you are having such a problem. Don't worry about the pity party - we

all have them. Do the best you can and keep fighting girl.

Terri

>

> Hello Everyone,

>

> This is the other Terrie () I'm still here. The Sarcoidosis

has been

> kicking my body bad. I have the VNA & Meals on wheels to help me now.

My

> motorized wheelchair and hospital bed are real life savers. The meds

aren't

> working again so they're planning on keeping the Steroids,

Cellcept and

> Remicade but changing the IV to ever 4 weeks instead of 8 weeks. The

Imuran,

> Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

I've never

> had a remission since my diagnosis in December 1998. For those who

have had

> a remission do you still have to take the meds? I've been on

steroids for 6

> ½ years and unable to get off, every time they start to lower the

dose the

> Sarcoidosis flares real bad. Enough of my babbling on.

>

> I've tried to get into chat but the Sarcoidosis brain caused me to

be

> unable to figure it out. If I'm awake at the next chat time

I'll try again.

> I don't post very often but I try to read all the emails. My best

wishes to

> all of you and hope for a pain free day. Those who are still able to

work

> pace your self and good luck. Before I ended up in the wheelchair due

to my

> bone Sarcoidosis in my hip & knees I was a Nurse for over 25 years. I

> really miss working and being independent. When I have a bad seizure

and wet

> the bed, I'm at my lowest because my husband has to change it.

It's hard for

> him to deal with, he has said to the MD's the hardest thing is

watching

> someone you love dying in front of you and your unable to do anything.

> Today's a hard day for me; I've been crying and feeling down.

But enough of

> my pity party. Take Care everyone and I'll try to post more often.

Love to

> all Terrie

>

>

>

> PS Congrats on your upcoming Marriage , I'm very happy for

you

>

>

>

>

>

>

>

> Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

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Share on other sites

Oh Marla, I am so sorry your sick. Those things are horrible, & gravy are they painful; as if you didn't know. Ouhhh, bless your heart, I will be praying for a quick resolve. I do understand your pain from past history. Thank goodness from way past history. Please take care, that kind of pain wears on your body, & frets the living daylights out of you.............Gentle Hugs & a really soft virtual chair....ConnieMarla wrote:

Thanks Terri, I’m trying to get caught up on emails, but have to take breaks and get off this chair! J Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1Sent: Sunday, September 03, 2006 7:07 PMTo: Neurosarcoidosis Subject: Re: Check in time! Marla,Poor you! I worked OB/Gyn and have seen some terrible Bartholin glandinfections. What a terrible location to deal with. I hope it is bettersoon and you have my complete sympathy.Terri G.>> Hi Tracie,>> I am battling an infection myself, one of my bartholin gland became> infected, and having an infection just wipes us out, I've beensleeping> more, etc.. You know. I am now on antibiotics and hot baths, and

its> improving, if it didn't then Incise and drain was the next step, can'tsay> that sounds like fun! My body sure tells me when I overdue as I did inAug.> taught a class for the Medical Assisting dept, on office training andI> loved it, although way too much time, it was intense for four weeks.Now I'm> back to somewhat normal two classes, but just a couple hours at atime.>> I'm sorry I was out of the loop but seating for long periods of timeis> still a little difficult so I'm way behind in emails. And will try todo> some catching up.>> Marla>>>> _____>> From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...> Sent: Saturday, September

02, 2006 11:18 PM> To: neurosarcoidosis > Subject: Check in time!>>>> Ok gang,>> It's time for roll-call. the list has been quiet lately, and we're> wondering what's up with everyone. Have ya all gone to the chat rooms?How> do you like the chats-- we could use some feedback.>> I know that for the last bit, we had a shortage of chat hosts-- tomany of> us have been to sick or recovering from surgery to be there.>> and Rose, hows the carpal tunnel sx healing? Ron, I know you'vebeen> going thru some personal stuff-- I do hope you're ok. I saw thatyou'll be> back at the chats now. Thank you. Marla, what is up with you? How are> you?>> Debbie, Quint, Rose, Connie, it's good to see all of you post.>> We are

up to 420+ members, and for the "newbies"-- welcome. You'vefound a> place to ask questions, get some support and let out some frustrationor> share some joy and laughter.>> As for me, I'm finding it takes a few days longer to bounce back aftermy> infusions, and this time I ended up with a whopper of a sinusinfection- so> it's antibiotic time. Uggg.>> Kuwaiti Kim, are you out there? We're worried about you.>> Joan, check in my friend, I hope you're doing ok.>> To all the others, please if you've got questions, concerns,whatever----> let us know. Rose and Debbie and I are holding down the fort untilDarlene> can be back-- so know that if you do have questions-- fire them at us.> WE'll get to them within a day or so. We are still here for all ofyou.>> With compassion and empathy for all of us,> Tracie> NS

co-owner/moderator>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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Debbie, I'm glad to hear your going to be OK. I know your trying, but please be extra careful - stairs are the pits anyway. My thoughts, hugs & prayers are headed your way///ConnieDebbie wrote: Hi all, I haven't been around for the past few days because I had a fall down the stairs in my house and hit my head good on the railing. I was diagnosed with a concussion.

Boy, I would never wish that pain on anyone. It feels better when I sit up straight rather than lay down. So I will be around more. I am on some pain meds. Just wanted to check in...... DebbiePS I have been very unlucky mlately first my wrist and than this.tiodaat (AT) aol (DOT) com wrote: Ok gang,It's time for roll-call. the list has been quiet lately, and we're wondering what's up with everyone. Have ya all gone to the chat rooms? How do you like the chats-- we could use some feedback.I know that for the last bit, we had a shortage of chat hosts-- to many of us have been to sick or recovering from surgery to be there. and Rose, hows the carpal tunnel sx

healing? Ron, I know you've been going thru some personal stuff-- I do hope you're ok. I saw that you'll be back at the chats now. Thank you. Marla, what is up with you? How are you?Debbie, Quint, Rose, Connie, it's good to see all of you post. We are up to 420+ members, and for the "newbies"-- welcome. You've found a place to ask questions, get some support and let out some frustration or share some joy and laughter.As for me, I'm finding it takes a few days longer to bounce back after my infusions, and this time I ended up with a whopper of a sinus infection- so it's antibiotic time. Uggg. Kuwaiti Kim, are you out there? We're worried about you. Joan, check in my friend, I hope you're doing ok. To all the others, please if you've got questions, concerns, whatever---- let us know. Rose and Debbie and I are holding down the fort until Darlene can be back-- so

know that if you do have questions-- fire them at us. WE'll get to them within a day or so. We are still here for all of you.With compassion and empathy for all of us,TracieNS co-owner/moderator __________________________________________________

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Share on other sites

Marla, you might try using a partially-inflated kids swim ring (less than a dollar at Walmart, if they still have them) to sit on. A firm ring or donut (lots of bucks) isn't good because it can put too much pressure, reducing the blood flow. Mine looks like it's almost flat, but when I sit on it there is just enough air to soften the ride. I first used it at least a year ago to cushion my right hip (bursitis), then recently when I fell & landed on my tailbone. The first time I bought a donut at a medical supplies store for about $20; it worked fine but began deflating in a couple of weeks. So I tried the cheapees at Walmart & they worked just fine & mostly last for months. The downside is that they are usually bright pink or yellow with flowers or fish on them. This last time I even carried it in to doctor's appts., etc. because it was just too painful to sit. Hope you are feeling better soon. Are you using epson salts to soak?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re: Check in time!Date: Tue, 5 Sep 2006 15:08:53 -0700 (PDT)

Oh Marla,

I am so sorry your sick. Those things are horrible, & gravy are they painful; as if you didn't know. Ouhhh, bless your heart, I will be praying for a quick resolve. I do understand your pain from past history. Thank goodness from way past history.

Please take care, that kind of pain wears on your body, & frets the living daylights out of you.............Gentle Hugs & a really soft virtual chair....ConnieMarla <mebramer (AT) gmail (DOT) com> wrote:

Thanks Terri, I’m trying to get caught up on emails, but have to take breaks and get off this chair! J

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1Sent: Sunday, September 03, 2006 7:07 PMTo: Neurosarcoidosis Subject: Re: Check in time!

Marla,Poor you! I worked OB/Gyn and have seen some terrible Bartholin glandinfections. What a terrible location to deal with. I hope it is bettersoon and you have my complete sympathy.Terri G.>> Hi Tracie,>> I am battling an infection myself, one of my bartholin gland became> infected, and having an infection just wipes us out, I've beensleeping> more, etc.. You know. I am now on antibiotics and hot baths, and its> improving, if it didn't then Incise and drain was the next step, can'tsay> that sounds like fun! My body sure tells me when I overdue as I did inAug.> taught a class for the Medical Assisting dept, on office training andI> loved it, although way too much time, it was intense for four weeks.Now I'm> back to somewhat normal two classes, but just a couple hours at atime.>> I'm sorry I was out of the loop but seating for long periods of timeis> still a little difficult so I'm way behind in emails. And will try todo> some catching up.>> Marla>>>> _____>> From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...> Sent: Saturday, September 02, 2006 11:18 PM> To: neurosarcoidosis > Subject: Check in time!>>>> Ok gang,>> It's time for roll-call. the list has been quiet lately, and we're> wondering what's up with everyone. Have ya all gone to the chat rooms?How> do you like the chats-- we could use some feedback.>> I know that for the last bit, we had a shortage of chat hosts-- tomany of> us have been to sick or recovering from surgery to be there.>> and Rose, hows the carpal tunnel sx healing? Ron, I know you'vebeen> going thru some personal stuff-- I do hope you're ok. I saw thatyou'll be> back at the chats now. Thank you. Marla, what is up with you? How are> you?>> Debbie, Quint, Rose, Connie, it's good to see all of you post.>> We are up to 420+ members, and for the "newbies"-- welcome. You'vefound a> place to ask questions, get some support and let out some frustrationor> share some joy and laughter.>> As for me, I'm finding it takes a few days longer to bounce back aftermy> infusions, and this time I ended up with a whopper of a sinusinfection- so> it's antibiotic time. Uggg.>> Kuwaiti Kim, are you out there? We're worried about you.>> Joan, check in my friend, I hope you're doing ok.>> To all the others, please if you've got questions, concerns,whatever----> let us know. Rose and Debbie and I are holding down the fort untilDarlene> can be back-- so know that if you do have questions-- fire them at us.> WE'll get to them within a day or so. We are still here for all ofyou.>> With compassion and empathy for all of us,> Tracie> NS co-owner/moderator>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

Call friends with PC-to-PC calling -- FREE

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Rose,

I am

doing much better the Antibiotics really helped, Epson salts darn I couldn’t

think of that to save me, I told my husband there is something I should be

soaking in and I can’t think of, so I just took hot baths that helped a

lot too.  I hate when I can’t think of something I know so well.  My doc

thinks I should have it removed, I’m not sure I’m up for that, the

last time it bothered me was at least 25 years ago, but he thinks it will be

more of a problem now, I told him I would think about it!  Thanks for the

advice Rose!

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Wednesday, September 06,

2006 2:58 AM

To: Neurosarcoidosis

Subject: RE:

Re: Check in time!

Marla, you might try using a partially-inflated kids

swim ring (less than a dollar at Walmart, if they still have them) to sit

on. A firm ring or donut (lots of bucks) isn't good because it can put

too much pressure, reducing the blood flow. Mine looks like it's almost

flat, but when I sit on it there is just enough air to soften the ride. I

first used it at least a year ago to cushion my right hip (bursitis), then

recently when I fell & landed on my tailbone. The first time I bought

a donut at a medical supplies store for about $20; it worked fine but began

deflating in a couple of weeks. So I tried the cheapees at Walmart &

they worked just fine & mostly last for months. The downside is that

they are usually bright pink or yellow with flowers or fish on them. This

last time I even carried it in to doctor's appts., etc. because it was just too

painful to sit. Hope you are feeling better soon. Are you using

epson salts to soak?

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: RE: Re: Check in

time!

Date: Tue, 5 Sep 2006 15:08:53 -0700 (PDT)

Oh Marla,

I am so sorry your sick. Those things are horrible,

& gravy are they painful; as if you didn't know. Ouhhh, bless your

heart, I will be praying for a quick resolve. I do understand your pain

from past history. Thank goodness from way past history.

Please take care, that kind of pain wears on your body,

& frets the living daylights out of you.............Gentle Hugs &

a really soft virtual chair....Connie

Marla <mebramer (AT) gmail (DOT) com>

wrote:

Thanks

Terri, I’m trying to get caught up on emails, but have to take breaks and

get off this chair! J

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1

Sent: Sunday, September 03, 2006

7:07 PM

To: Neurosarcoidosis

Subject: Re:

Check in time!

Marla,

Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland

infections. What a terrible location to deal with. I hope it is better

soon and you have my complete sympathy.

Terri G.

>

> Hi Tracie,

>

> I am battling an infection myself, one of my bartholin gland became

> infected, and having an infection just wipes us out, I've been

sleeping

> more, etc.. You know. I am now on antibiotics and hot baths, and its

> improving, if it didn't then Incise and drain was the next step, can't

say

> that sounds like fun! My body sure tells me when I overdue as I did in

Aug.

> taught a class for the Medical Assisting dept, on office training and

I

> loved it, although way too much time, it was intense for four weeks.

Now I'm

> back to somewhat normal two classes, but just a couple hours at a

time.

>

> I'm sorry I was out of the loop but seating for long periods of time

is

> still a little difficult so I'm way behind in emails. And will try to

do

> some catching up.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf Of tiodaat@...

> Sent: Saturday, September 02, 2006 11:18 PM

> To: neurosarcoidosis

> Subject: Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome.

You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

Yahoo! Messenger with Voice. Make

PC-to-Phone Calls to the US

(and 30+ countries) for 2¢/min or less.

Call

friends with PC-to-PC calling -- FREE

Link to comment
Share on other sites

Thanks

Connie, I am doing much better, I’m still on Antibiotics and I think they

did the trick, now just need to decide if I get the darn thing removed, or take

a chance it won’t bother me for a long time again.  Time will tell.

Hope you

are having a good week.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis

Sent: Tuesday, September 05, 2006

3:09 PM

To: Neurosarcoidosis

Subject: RE:

Re: Check in time!

Oh Marla,

I am so sorry your sick. Those things are horrible, & gravy

are they painful; as if you didn't know. Ouhhh, bless your heart, I will

be praying for a quick resolve. I do understand your pain from past

history. Thank goodness from way past history.

Please take care, that kind of pain wears on your body, & frets the

living daylights out of you.............Gentle Hugs & a really soft

virtual chair....Connie

Marla <mebramer (AT) gmail (DOT) com>

wrote:

Thanks

Terri, I’m trying to get caught up on emails, but have to take breaks and

get off this chair! J

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of mosaicgirl1

Sent: Sunday, September 03, 2006

7:07 PM

To: Neurosarcoidosis

Subject: Re:

Check in time!

Marla,

Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland

infections. What a terrible location to deal with. I hope it is better

soon and you have my complete sympathy.

Terri G.

>

> Hi Tracie,

>

> I am battling an infection myself, one of my bartholin gland became

> infected, and having an infection just wipes us out, I've been

sleeping

> more, etc.. You know. I am now on antibiotics and hot baths, and its

> improving, if it didn't then Incise and drain was the next step, can't

say

> that sounds like fun! My body sure tells me when I overdue as I did in

Aug.

> taught a class for the Medical Assisting dept, on office training and

I

> loved it, although way too much time, it was intense for four weeks.

Now I'm

> back to somewhat normal two classes, but just a couple hours at a

time.

>

> I'm sorry I was out of the loop but seating for long periods of time

is

> still a little difficult so I'm way behind in emails. And will try to

do

> some catching up.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf Of tiodaat@...

> Sent: Saturday, September 02, 2006 11:18 PM

> To: neurosarcoidosis

> Subject: Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome.

You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

 

Yahoo! Messenger with Voice. Make

PC-to-Phone Calls to the US

(and 30+ countries) for 2¢/min or less.

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Share on other sites

Marla, I gotta confess that I had been rooting around under the bathroom sink & found a box of epsom salts that I didn't even remember was there. If I hadn't just seen that box, I doubt I would remember the name either. Heck, last night I had an awful time going to sleep because I was trying to remember either somebody from tv or movies, or something somebody had said. Anyway, I couldn't get it out of my head, but I didn't want to get up & look it up either. I finally got to sleep about 5am; woke up at 9am & couldn't remember what it was I was trying to remember! But the fact that I couldn't remember it is still bugging me. I want to reply to more messages, but my eyes are tired & burning, so I think I'll buzz off for now. Hope everyone gets some sleep (well, except for & Sherif. )

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: Re: Check in time!Date: Thu, 7 Sep 2006 21:27:11 -0700

Rose,

I am doing much better the Antibiotics really helped, Epson salts darn I couldn’t think of that to save me, I told my husband there is something I should be soaking in and I can’t think of, so I just took hot baths that helped a lot too. I hate when I can’t think of something I know so well. My doc thinks I should have it removed, I’m not sure I’m up for that, the last time it bothered me was at least 25 years ago, but he thinks it will be more of a problem now, I told him I would think about it! Thanks for the advice Rose!

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Wednesday, September 06, 2006 2:58 AMTo: Neurosarcoidosis Subject: RE: Re: Check in time!

Marla, you might try using a partially-inflated kids swim ring (less than a dollar at Walmart, if they still have them) to sit on. A firm ring or donut (lots of bucks) isn't good because it can put too much pressure, reducing the blood flow. Mine looks like it's almost flat, but when I sit on it there is just enough air to soften the ride. I first used it at least a year ago to cushion my right hip (bursitis), then recently when I fell & landed on my tailbone. The first time I bought a donut at a medical supplies store for about $20; it worked fine but began deflating in a couple of weeks. So I tried the cheapees at Walmart & they worked just fine & mostly last for months. The downside is that they are usually bright pink or yellow with flowers or fish on them. This last time I even carried it in to doctor's appts., etc. because it was just too painful to sit. Hope you are feeling better soon. Are you using epson salts to soak?

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re: Check in time!Date: Tue, 5 Sep 2006 15:08:53 -0700 (PDT)

Oh Marla,

I am so sorry your sick. Those things are horrible, & gravy are they painful; as if you didn't know. Ouhhh, bless your heart, I will be praying for a quick resolve. I do understand your pain from past history. Thank goodness from way past history.

Please take care, that kind of pain wears on your body, & frets the living daylights out of you.............Gentle Hugs & a really soft virtual chair....ConnieMarla <mebramer (AT) gmail (DOT) com> wrote:

Thanks Terri, I’m trying to get caught up on emails, but have to take breaks and get off this chair! J

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1Sent: Sunday, September 03, 2006 7:07 PMTo: Neurosarcoidosis Subject: Re: Check in time!

Marla,Poor you! I worked OB/Gyn and have seen some terrible Bartholin glandinfections. What a terrible location to deal with. I hope it is bettersoon and you have my complete sympathy.Terri G.>> Hi Tracie,>> I am battling an infection myself, one of my bartholin gland became> infected, and having an infection just wipes us out, I've beensleeping> more, etc.. You know. I am now on antibiotics and hot baths, and its> improving, if it didn't then Incise and drain was the next step, can'tsay> that sounds like fun! My body sure tells me when I overdue as I did inAug.> taught a class for the Medical Assisting dept, on office training andI> loved it, although way too much time, it was intense for four weeks.Now I'm> back to somewhat normal two classes, but just a couple hours at atime.>> I'm sorry I was out of the loop but seating for long periods of timeis> still a little difficult so I'm way behind in emails. And will try todo> some catching up.>> Marla>>>> _____>> From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...> Sent: Saturday, September 02, 2006 11:18 PM> To: neurosarcoidosis > Subject: Check in time!>>>> Ok gang,>> It's time for roll-call. the list has been quiet lately, and we're> wondering what's up with everyone. Have ya all gone to the chat rooms?How> do you like the chats-- we could use some feedback.>> I know that for the last bit, we had a shortage of chat hosts-- tomany of> us have been to sick or recovering from surgery to be there.>> and Rose, hows the carpal tunnel sx healing? Ron, I know you'vebeen> going thru some personal stuff-- I do hope you're ok. I saw thatyou'll be> back at the chats now. Thank you. Marla, what is up with you? How are> you?>> Debbie, Quint, Rose, Connie, it's good to see all of you post.>> We are up to 420+ members, and for the "newbies"-- welcome. You'vefound a> place to ask questions, get some support and let out some frustrationor> share some joy and laughter.>> As for me, I'm finding it takes a few days longer to bounce back aftermy> infusions, and this time I ended up with a whopper of a sinusinfection- so> it's antibiotic time. Uggg.>> Kuwaiti Kim, are you out there? We're worried about you.>> Joan, check in my friend, I hope you're doing ok.>> To all the others, please if you've got questions, concerns,whatever----> let us know. Rose and Debbie and I are holding down the fort untilDarlene> can be back-- so know that if you do have questions-- fire them at us.> WE'll get to them within a day or so. We are still here for all ofyou.>> With compassion and empathy for all of us,> Tracie> NS co-owner/moderator>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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Rose I can

so relate, some one told me to keep a piece of paper and pencil at bedside, so

we can write down the things that are driving us nuts, go to sleep and be able

to check on them the next morningJ

mb

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Thursday, September 07, 2006

10:59 PM

To: Neurosarcoidosis

Subject: RE:

Re: Check in time!

Marla, I

gotta confess that I had been rooting around under the bathroom sink &

found a box of epsom salts that I didn't even remember was there. If I

hadn't just seen that box, I doubt I would remember the name either.

Heck, last night I had an awful time going to sleep because I was trying to

remember either somebody from tv or movies, or something somebody had

said. Anyway, I couldn't get it out of my head, but I didn't want to get

up & look it up either. I finally got to sleep about 5am; woke up at 9am

& couldn't remember what it was I was trying to remember! But the

fact that I couldn't remember it is still bugging me. I want to reply to

more messages, but my eyes are tired & burning, so I think I'll buzz off

for now. Hope everyone gets some sleep (well, except for &

Sherif. )

Ramblin' Rose

Moderator

From: " Marla " <mebramer (AT) gmail (DOT) com>

Reply-To: Neurosarcoidosis

To: <Neurosarcoidosis >

Subject: RE: Re: Check in

time!

Date: Thu, 7 Sep 2006 21:27:11 -0700

Rose,

I am doing much better the Antibiotics really

helped, Epson salts darn I couldn’t think of that to save me, I told my

husband there is something I should be soaking in and I can’t think of,

so I just took hot baths that helped a lot too. I hate when I can’t

think of something I know so well. My doc thinks I should have it

removed, I’m not sure I’m up for that, the last time it bothered me

was at least 25 years ago, but he thinks it will be more of a problem now, I

told him I would think about it! Thanks for the advice Rose!

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of Rose

Sent: Wednesday, September 06,

2006 2:58 AM

To: Neurosarcoidosis

Subject: RE:

Re: Check in time!

Marla,

you might try using a partially-inflated kids swim ring (less than a dollar at

Walmart, if they still have them) to sit on. A firm ring or donut (lots

of bucks) isn't good because it can put too much pressure, reducing the blood

flow. Mine looks like it's almost flat, but when I sit on it there is

just enough air to soften the ride. I first used it at least a year ago

to cushion my right hip (bursitis), then recently when I fell & landed on

my tailbone. The first time I bought a donut at a medical supplies store

for about $20; it worked fine but began deflating in a couple of weeks.

So I tried the cheapees at Walmart & they worked just fine & mostly

last for months. The downside is that they are usually bright pink or

yellow with flowers or fish on them. This last time I even carried it in

to doctor's appts., etc. because it was just too painful to sit. Hope you

are feeling better soon. Are you using epson salts to soak?

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: RE: Re: Check in

time!

Date: Tue, 5 Sep 2006 15:08:53 -0700 (PDT)

Oh Marla,

I am so

sorry your sick. Those things are horrible, & gravy are they painful;

as if you didn't know. Ouhhh, bless your heart, I will be praying for a

quick resolve. I do understand your pain from past history. Thank

goodness from way past history.

Please take

care, that kind of pain wears on your body, & frets the living daylights

out of you.............Gentle Hugs & a really soft virtual

chair....Connie

Marla <mebramer (AT) gmail (DOT) com>

wrote:

Thanks Terri, I’m trying to get caught up on

emails, but have to take breaks and get off this chair! J

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of mosaicgirl1

Sent: Sunday, September 03, 2006

7:07 PM

To: Neurosarcoidosis

Subject: Re:

Check in time!

Marla,

Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland

infections. What a terrible location to deal with. I hope it is better

soon and you have my complete sympathy.

Terri G.

>

> Hi Tracie,

>

> I am battling an infection myself, one of my bartholin gland became

> infected, and having an infection just wipes us out, I've been

sleeping

> more, etc.. You know. I am now on antibiotics and hot baths, and its

> improving, if it didn't then Incise and drain was the next step, can't

say

> that sounds like fun! My body sure tells me when I overdue as I did in

Aug.

> taught a class for the Medical Assisting dept, on office training and

I

> loved it, although way too much time, it was intense for four weeks.

Now I'm

> back to somewhat normal two classes, but just a couple hours at a

time.

>

> I'm sorry I was out of the loop but seating for long periods of time

is

> still a little difficult so I'm way behind in emails. And will try to

do

> some catching up.

>

> Marla

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ]

On Behalf Of tiodaat@...

> Sent: Saturday, September 02, 2006 11:18 PM

> To: neurosarcoidosis

> Subject: Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat rooms?

How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome.

You've

found a

> place to ask questions, get some support and let out some frustration

or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after

my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at us.

> WE'll get to them within a day or so. We are still here for all of

you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

Yahoo!

Messenger with Voice. Make

PC-to-Phone Calls to the US

(and 30+ countries) for 2¢/min or less.

Call friends with PC-to-PC

calling -- FREE

Get

real-time traffic reports with Windows Live Local Search

Link to comment
Share on other sites

Hi,

I am new to your group and have been reading all of your messages to see how

they relate

to me. Thank you so much for sharing and being so open. Being newly diagnosed

with

neuro the question in my mind is if the doctors are giving us medicine why are

we still

getting worse or having more symptoms? Or at least that is the way it seems to

me by

reading messages in this support group and articles on the internet. I am a 47

female,

have sarcoid in my lungs (which was diagnosed last summer) and in my spinal

fluid (which

was diagnosed last month). Right now I am taking 60 mg of Prednisone every day

and will

take it for a total of 3 weeks before going down to 60 mg. every other day. Last

year I was

on Plaquinel for six months and when I got off of it that is when the neuro

really kicked in

and I had to go through a whole summer of tests and severe hurting before a

spinal tap

showed it in my spinal fluid. My blood work is okay except for the bilirubin,

which is high

at the moment. Thanks for any input anyone wants to give.

Cornflowerbluebarb

Arkansas

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're wondering

> what's up with everyone. Have ya all gone to the chat rooms? How do you

> like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to many of us

> have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know you've been

> going thru some personal stuff-- I do hope you're ok. I saw that you'll be

> back at the chats now. Thank you. Marla, what is up with you? How are you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've found a

> place to ask questions, get some support and let out some frustration or share

> some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back after my

> infusions, and this time I ended up with a whopper of a sinus infection- so

it's

> antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns, whatever---- let

> us know. Rose and Debbie and I are holding down the fort until Darlene can

> be back-- so know that if you do have questions-- fire them at us. WE'll get

> to them within a day or so. We are still here for all of you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

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Share on other sites

Marla, It's funny that you should mention that. I have done that myself - jumped up at night remembering things and writing them down so I wouldn't forget the next day. Usually stuff about the kids, appointments, etc. I forget everything unless I write it down. DebbieMarla wrote: Rose I can so relate, some one told me to keep a piece of paper and pencil at bedside, so we can write down the things that are driving us nuts, go to sleep and be able to check on them the next morningJ mb From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Thursday, September 07, 2006 10:59 PM To: Neurosarcoidosis Subject: RE: Re: Check in time! Marla, I gotta confess that I had been rooting around under the bathroom sink & found a box of epsom salts that I didn't even remember was there. If I hadn't just seen that box, I doubt I would remember the name either. Heck, last night I had an awful time going to sleep because I was trying to remember either somebody from tv or movies, or something somebody had said. Anyway, I couldn't get it out of my head, but I didn't want to get up & look it up either. I finally got to sleep about 5am; woke up at 9am

& couldn't remember what it was I was trying to remember! But the fact that I couldn't remember it is still bugging me. I want to reply to more messages, but my eyes are tired & burning, so I think I'll buzz off for now. Hope everyone gets some sleep (well, except for & Sherif. ) Ramblin' Rose Moderator From: "Marla" <mebramer (AT) gmail (DOT) com> Reply-To: Neurosarcoidosis To: <Neurosarcoidosis > Subject: RE: Re: Check in time! Date: Thu, 7 Sep 2006 21:27:11 -0700 Rose, I am doing much better the Antibiotics really helped, Epson salts darn I

couldn’t think of that to save me, I told my husband there is something I should be soaking in and I can’t think of, so I just took hot baths that helped a lot too. I hate when I can’t think of something I know so well. My doc thinks I should have it removed, I’m not sure I’m up for that, the last time it bothered me was at least 25 years ago, but he thinks it will be more of a problem now, I told him I would think about it! Thanks for the advice Rose! Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Wednesday, September 06, 2006 2:58 AM To: Neurosarcoidosis Subject: RE: Re: Check in time! Marla, you might try using a partially-inflated kids swim ring (less than a dollar at Walmart, if they still have them) to sit on. A firm ring or donut (lots of bucks) isn't good because it can put too much pressure, reducing the blood flow. Mine looks like it's almost flat, but when I sit on it there is just enough air to soften the ride. I first used it at least a year ago to cushion my right hip (bursitis), then recently when I fell & landed on my tailbone. The first time I bought a donut at a medical supplies store for about $20; it worked fine but began deflating in a couple of weeks. So I tried the cheapees at Walmart & they worked just fine &

mostly last for months. The downside is that they are usually bright pink or yellow with flowers or fish on them. This last time I even carried it in to doctor's appts., etc. because it was just too painful to sit. Hope you are feeling better soon. Are you using epson salts to soak? Ramblin' Rose Moderator From: Connie Griffis <conaugusta (AT) yahoo (DOT) com> Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re: Check in time! Date: Tue, 5 Sep 2006 15:08:53 -0700 (PDT) Oh Marla, I am so sorry your sick. Those things are horrible, & gravy are they painful; as if you didn't know. Ouhhh, bless your heart, I will be praying for a quick resolve. I do understand your pain from past history. Thank goodness from way past history. Please take care, that kind of pain wears on your body, & frets the living daylights out of

you.............Gentle Hugs & a really soft virtual chair....Connie Marla <mebramer (AT) gmail (DOT) com> wrote: Thanks Terri, I’m trying to get caught up on emails, but have to take breaks and get off this chair! J

Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1 Sent:

Sunday, September 03, 2006 7:07 PM To: Neurosarcoidosis Subject: Re: Check in time! Marla, Poor you! I worked OB/Gyn and have seen some terrible Bartholin gland infections. What a terrible location to deal with. I hope it is better soon and you have my complete sympathy. Terri G. > > Hi Tracie, > > I am battling an infection myself, one of my bartholin gland

became > infected, and having an infection just wipes us out, I've been sleeping > more, etc.. You know. I am now on antibiotics and hot baths, and its > improving, if it didn't then Incise and drain was the next step, can't say > that sounds like fun! My body sure tells me when I overdue as I did in Aug. > taught a class for the Medical Assisting dept, on office training and I > loved it, although way too much time, it was intense for four weeks. Now I'm > back to somewhat normal two classes, but just a couple hours at a time. > > I'm sorry I was out of the loop but seating for long periods of time is > still a little difficult so I'm way behind in emails. And will try to do > some catching up. > > Marla > > > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... > Sent: Saturday, September 02, 2006 11:18 PM > To: neurosarcoidosis > Subject: Check in time! > > > > Ok gang, > > It's time for roll-call. the list has been quiet lately, and we're > wondering what's up with everyone. Have ya all gone to the chat rooms? How > do you like the chats-- we could use some feedback. > > I know that for the last bit, we had a shortage of chat hosts-- to many of > us have been to sick or recovering from surgery to be there. > > and Rose, hows the carpal tunnel sx healing? Ron, I know you've

been > going thru some personal stuff-- I do hope you're ok. I saw that you'll be > back at the chats now. Thank you. Marla, what is up with you? How are > you? > > Debbie, Quint, Rose, Connie, it's good to see all of you post. > > We are up to 420+ members, and for the "newbies"-- welcome. You've found a > place to ask questions, get some support and let out some frustration or > share some joy and laughter. > > As for me, I'm finding it takes a few days longer to bounce back after my > infusions, and this time I ended up with a whopper of a sinus infection- so > it's antibiotic time. Uggg. > > Kuwaiti Kim, are you out there? We're worried about you. > > Joan, check in my friend, I hope you're doing ok. > > To all the others, please if you've got questions, concerns, whatever---- > let us know. Rose and Debbie

and I are holding down the fort until Darlene > can be back-- so know that if you do have questions-- fire them at us. > WE'll get to them within a day or so. We are still here for all of you. > > With compassion and empathy for all of us, > Tracie > NS co-owner/moderator > Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Call friends with PC-to-PC calling -- FREE Get real-time traffic reports with Windows Live Local Search __________________________________________________

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Cornflower Blue,

What part of Arkansas do you live in? is from Bebe and I

graduated from Warren High in Warren. Warren is in Bradley County.

Are you still able to work? How long did it take you to get your

diagnosis.

Thanks. Terri G.

> >

> > Ok gang,

> >

> > It's time for roll-call. the list has been quiet lately, and we're

wondering

> > what's up with everyone. Have ya all gone to the chat rooms? How do

you

> > like the chats-- we could use some feedback.

> >

> > I know that for the last bit, we had a shortage of chat hosts-- to

many of us

> > have been to sick or recovering from surgery to be there.

> >

> > and Rose, hows the carpal tunnel sx healing? Ron, I know

you've been

> > going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> > back at the chats now. Thank you. Marla, what is up with you? How

are you?

> >

> > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> >

> > We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> > place to ask questions, get some support and let out some

frustration or share

> > some joy and laughter.

> >

> > As for me, I'm finding it takes a few days longer to bounce back

after my

> > infusions, and this time I ended up with a whopper of a sinus

infection- so it's

> > antibiotic time. Uggg.

> >

> > Kuwaiti Kim, are you out there? We're worried about you.

> >

> > Joan, check in my friend, I hope you're doing ok.

> >

> > To all the others, please if you've got questions, concerns,

whatever---- let

> > us know. Rose and Debbie and I are holding down the fort until

Darlene can

> > be back-- so know that if you do have questions-- fire them at us.

WE'll get

> > to them within a day or so. We are still here for all of you.

> >

> > With compassion and empathy for all of us,

> > Tracie

> > NS co-owner/moderator

> >

>

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