Re: Help-Sad and sick

[Guest guest]

thxs

[Guest guest]

Oh, hon, if I knew how to help you, I would! Believe me that I want to......but I just don't have any answers other than that YES, we are here for you and I will be praying for you and hugging you tight!

A big hug for you..........((((((((((((((((((hugs)))))))))))))))

Darlene

Help-Sad and sick

Well guys, for the last week or so, I haven't seen much from anyone online--are you out there. This is a really hard time for me, I quit my diurgesic patches yesterday, I couldn't stand the constipation and the rash on my skin, plus they got ot expensive at the higher dose. I feel like shit, I've been running low grade fevers 100.2 to 99.6 for a week or so now, and I don't know what md to call. I don't know if this is withdrawal from the dirugesic patch, or if its related to last weeks hypoxia episode that landed me in er. i don't know if i have the flu. shit, I just don't know.I am haivng such a tough time accepting that in my kitchen is a bottle of ms contin, and for me to take it, I am going to be breaking a huge committment. All I can do about this is cry. I'm not sure I can handle breaking htis commitment even if it means I can lower the pain. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hey Tracie, I'm so sorry your not feeling well... I wish I had a blanket I could share and make us all feel better... especially you and Moo.... You take care of yourself and don't spend one min. of energy feeling guilty for using any thing that will give you any relief...

Love ya,

-- Help-Sad and sick

Well guys, for the last week or so, I haven't seen much from anyone online--are you out there. This is a really hard time for me, I quit my diurgesic patches yesterday, I couldn't stand the constipation and the rash on my skin, plus they got ot expensive at the higher dose. I feel like shit, I've been running low grade fevers 100.2 to 99.6 for a week or so now, and I don't know what md to call. I don't know if this is withdrawal from the dirugesic patch, or if its related to last weeks hypoxia episode that landed me in er. i don't know if i have the flu. shit, I just don't know.I am haivng such a tough time accepting that in my kitchen is a bottle of ms contin, and for me to take it, I am going to be breaking a huge committment. All I can do about this is cry. I'm not sure I can handle breaking htis commitment even if it means I can lower the pain. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Tracie, I don't know whether you should take the ms-contin or not. When I am totally lost about a decision, I ask God for what a friend calls "a smack-me-in-the-face burning bush," a sign of which way to go, and I tell him that it has to be really obvious. And you know what, Tracie? I always get an answer that feels right and leads me to peace. I am praying for you now, that God will send you a smack-you-in-the-face burning bush, and that if the message is that it's okay to take the ms-contin, it will be okay. I'm also praying for my own burning bush in regards to my daughter Ginny. She is the one in San with the chronic pancreatitis. Her boyfriend's father (who is 82) called me yesterday and told me that he thought Ginny should come up here "with her people" because she wasn't getting better down there. Ginny lives with her boyfriend & his parents. Now Ginny is all upset that they don't want her there & is talking about coming up here. My friends & my counselor are telling me to not even consider letting her stay with me; that I don't need the additional stress. Ginny is the one who didn't talk to me for 2 years after I confronted her about a phone bill that got me turned over to a collection agency. I understand where they are all coming from & intellectually I agree. But she is still my daughter, she's sick, and I'm not sure I can refuse to let her stay with me. The problem is that she will have no health insurance up here; I can't pay her medical costs and she is so sick, I don't think she can work enough hours to get insurance. So I'm turning this one over to the One with all the answers. I'm trusting that we will both receive comfort, wisdom, guidance, and peace. Love, Rose

Help-Sad and sick

Well guys, for the last week or so, I haven't seen much from anyone online--are you out there. This is a really hard time for me, I quit my diurgesic patches yesterday, I couldn't stand the constipation and the rash on my skin, plus they got ot expensive at the higher dose. I feel like shit, I've been running low grade fevers 100.2 to 99.6 for a week or so now, and I don't know what md to call. I don't know if this is withdrawal from the dirugesic patch, or if its related to last weeks hypoxia episode that landed me in er. i don't know if i have the flu. shit, I just don't know.I am haivng such a tough time accepting that in my kitchen is a bottle of ms contin, and for me to take it, I am going to be breaking a huge committment. All I can do about this is cry. I'm not sure I can handle breaking htis commitment even if it means I can lower the pain. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Tracie,

I’m

right there with Rose on this one.

I too ask God to give me a sign, and he comes through for me too. You just have to be aware to the signs,

but they always come. You know

yourself better then anyone else, remember that. Have you tried anything like Toradol

yet. I take that just about every

day, and it helps most the time, then every once in awhile I have to take a

vicodin with the toradol. The Toradol

is a non steroidal anti inflammatory drug, not a narcotic. I find it very helpful, so just a

thought.

Know

you are in my prayers and I will ask God to help you with an answer too, so

between Rose and I, you should be able to see it coming from the distance!

Praying

for you,

Marla

Re:

Help-Sad and sick

Tracie, I don't know whether you

should take the ms-contin or not. When I am totally lost about a

decision, I ask God for what a friend calls " a smack-me-in-the-face

burning bush, " a sign of which way to go, and I tell him that it has to be

really obvious. And you know what, Tracie? I always get an answer

that feels right and leads me to peace. I am praying for you now, that

God will send you a smack-you-in-the-face burning bush, and that if the message

is that it's okay to take the ms-contin, it will be okay. I'm also

praying for my own burning bush in regards to my daughter Ginny. She is

the one in San with the chronic pancreatitis. Her boyfriend's

father (who is 82) called me yesterday and told me that he thought Ginny should

come up here " with her people " because she wasn't getting better down

there. Ginny lives with her boyfriend & his parents. Now Ginny

is all upset that they don't want her there & is talking about coming

up here. My friends & my counselor are telling me to not even

consider letting her stay with me; that I don't need the additional

stress. Ginny is the one who didn't talk to me for 2 years after I

confronted her about a phone bill that got me turned over to a collection

agency. I understand where they are all coming from & intellectually

I agree. But she is still my daughter, she's sick, and I'm not sure I can

refuse to let her stay with me. The problem is that she will have no

health insurance up here; I can't pay her medical costs and she is so sick, I

don't think she can work enough hours to get insurance. So I'm turning

this one over to the One with all the answers. I'm trusting that we will

both receive comfort, wisdom, guidance, and peace. Love, Rose

Help-Sad and sick

Well guys,

for the last week or so, I haven't seen much from anyone online--are you out

there.

This is a really hard time for me, I quit my diurgesic patches yesterday,

I couldn't stand the constipation and the rash on my skin, plus they got ot

expensive at the higher dose.

I feel like shit, I've been running low grade fevers 100.2 to 99.6 for a week

or so now, and I don't know what md to call.

I don't know if this is withdrawal from the dirugesic patch, or if its related

to last weeks hypoxia episode that landed me in er. i don't know if i

have the flu. shit, I just don't know.

I am haivng such a tough time accepting that in my kitchen is a bottle of ms

contin, and for me to take it, I am going to be breaking a huge

committment. All I can do about this is cry. I'm not sure I can

handle breaking htis commitment even if it means I can lower the pain.

~~~~

*** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives and Digest Attachment Pictures:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant

messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Bookmarks:-

Add a website URL you have found useful.

http://groups.yahoo.com/group/Neurosarcoidosis/links

Personal Complaints or problems:-

Please email the moderators

mailto:Neurosarcoidosis-owner

Subscription Details:-

1) Individual email - means that every email sent

to the list you receive.

2) Daily Digest - sends you 25 messages in one

single email for you to browse. This is an excellent option if you receive alot

of email.

3) Web only/No mail - means that you can pop into

eGroups at your convenience and receive no email.

To modify your subscription settings please

visit:-

http://groups.yahoo.com/group/Neurosarcoidosis/join

To subscribe email

neurosarcoidosis-subscribe

To unsubscribe email neurosarcoidosis-unsubscribe

The moderators will not be doing it for you!

~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

~~~~ *** ~~~ *** ~~~ *** ~~~~

Your

use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives and Digest Attachment Pictures:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant

messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Bookmarks:-

Add a website URL you have found useful.

http://groups.yahoo.com/group/Neurosarcoidosis/links

Personal Complaints or problems:-

Please email the moderators

mailto:Neurosarcoidosis-owner

Subscription Details:-

1) Individual email - means that every email sent

to the list you receive.

2) Daily Digest - sends you 25 messages in one

single email for you to browse. This is an excellent option if you receive alot

of email.

3) Web only/No mail - means that you can pop into

eGroups at your convenience and receive no email.

To modify your subscription settings please

visit:-

http://groups.yahoo.com/group/Neurosarcoidosis/join

To subscribe email

neurosarcoidosis-subscribe

To unsubscribe email

neurosarcoidosis-unsubscribe

The moderators will not be doing it for you!

~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

~~~~ *** ~~~ *** ~~~ *** ~~~~

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Golly, Rose, that's a tough one! I'm praying for your

" smack-you-in-the-face-burning-bush " too! It's so nice when the messages are

clear!

Love,

Jeri

[Guest guest]

Hello, My name is Debby and this is the first time that I have

joined in on any of the converations in the group although I have

been reading off and on for the last couple of years. My eyes are

usually to bad to spend much time at my computer, so I have to do

things as I can. I was diagonsed with sarcoidoisis in 1997 but my

doctor felt that I had had it for a long time and my previous

doctors had not done any tests to see what was wrong, it started in

my lungs first then moved on to my eyes and then to my nervous

system. But through all that I have gone through in the last six

years I find myself very lucky for the love and support that I have

had from my family and friends. My husband has been with me at most

of my doctor appointments, hospital stays and takes wonderful care

of me when I am unable to do things on my own. He even lost his job

this year because of my illness, my medical bills were so high, that

the insurance company kept raising the rates and the company could

not get another policy as long as they had me on the policy, so his

boss terminated him so that they could get new insurnace. But

enough about me, that is not why I wrote,

Tracie, I wanted to reply to your letter about your pain, I too was

on the diurgesic patch and although it did work it was so expensive,

even with insurance, I also had taken oxycontin and some condine

medicines. When I went to my new pain doctor, I told him that I

couldn't afford the patch and needed a cheap pain medication that

also worked. He started me on methadone ane it worked for me right

away, And it is cheap, it is a generic and all I pay with my

insurnace is $7.00 a month. He started me on 60mg's a day and that

was too much, it made me sleep all of the time, so we worked on

lowering the dosage a little at at time, I am now down to 20 mg's a

day, 10 in the morning and 10 at night and along with 1800 mg's of

neurontin a day, I am almost pain free. Although it still has the

side affects of constipation, my doctor as put me on a stool softner

and fiber substutes that I take in pill form, but to be pain free I

can live with the constipation problem. If you are worried about

becoming addicted to it, methadone is a controlled substance and the

doctor can only write the prescription for as many as you need for

the month and you have to have a new script every month and it can

not be called it from the doctors office you must take the paper

scrit to have it filled each month, so your doctor as total control

over how many pills you get each month. I have never read about

anyone in this group that has been on methadone, but it has really

worked for me. I know what is like to be in constant pain, I use to

have days where I just sat in my chair and cried because the pain

was so bad and now with the medthadone, I can go out and do things

and just about never think about pain. You might want to talk to

your doctor and see if he thinks is would work for you. Well I have

rambled on long enough now, I seems that once I get started I can't

stop. Hope that this might help, not one should have to live in

constant pain. Debby

> Well guys, for the last week or so, I haven't seen much from

anyone

> online--are you out there.

>

> This is a really hard time for me, I quit my diurgesic patches

yesterday, I

> couldn't stand the constipation and the rash on my skin, plus they

got ot

> expensive at the higher dose.

>

> I feel like shit, I've been running low grade fevers 100.2 to 99.6

for a week

> or so now, and I don't know what md to call.

> I don't know if this is withdrawal from the dirugesic patch, or if

its

> related to last weeks hypoxia episode that landed me in er. i

don't know if i have

> the flu. shit, I just don't know.

>

> I am haivng such a tough time accepting that in my kitchen is a

bottle of ms

> contin, and for me to take it, I am going to be breaking a huge

committment.

> All I can do about this is cry. I'm not sure I can handle

breaking htis

> commitment even if it means I can lower the pain.

[Guest guest]

Hi Debbie

i've seen your name on our member list many times, but knew that you choose to be a closet sarcoidian--we have many--there's only about 15% of us how post regurally. I'm so glad you shared. Thank you, I am talking with my docs and seeing what to do next. I got a script for Xanax and took it a couple of times today, it seems to have helped some.

unforntunatly, I have the flu on top of this so I am not functioning. i hope you continue to drop in occassionaly.

Tracie

[Guest guest]

Hi Debbie

i've seen your name on our member list many times, but knew that you choose to be a closet sarcoidian--we have many--there's only about 15% of us how post regurally. I'm so glad you shared. Thank you, I am talking with my docs and seeing what to do next. I got a script for Xanax and took it a couple of times today, it seems to have helped some.

unforntunatly, I have the flu on top of this so I am not functioning. i hope you continue to drop in occassionaly.

Tracie

[Guest guest]

I feel for you, all I can say is you are in my prayers, and

regardless of your religious affiliation a prayer to what ever deity

each of us calles God it can't hurt, It only helps to know that

there are people out there that are thinking of you each day at our

respective hour of prayer and one of us has to pick the right one.

Stay strong and never give up, It only beets us when we stop

fighting. Much Love, Jeff---

In Neurosarcoidosis , tiodaat@a... wrote:

> Well guys, for the last week or so, I haven't seen much from

anyone

> online--are you out there.

>

> This is a really hard time for me, I quit my diurgesic patches

yesterday, I

> couldn't stand the constipation and the rash on my skin, plus they

got ot

> expensive at the higher dose.

>

> I feel like shit, I've been running low grade fevers 100.2 to 99.6

for a week

> or so now, and I don't know what md to call.

> I don't know if this is withdrawal from the dirugesic patch, or if

its

> related to last weeks hypoxia episode that landed me in er. i

don't know if i have

> the flu. shit, I just don't know.

>

> I am haivng such a tough time accepting that in my kitchen is a

bottle of ms

> contin, and for me to take it, I am going to be breaking a huge

committment.

> All I can do about this is cry. I'm not sure I can handle

breaking htis

> commitment even if it means I can lower the pain.

[Guest guest]

TRACIE,

I feel so bad about not answering sooner == my computer has been on and off

== mostly off, due to water in my crawl space,

Honey, I just love you oodles and hate to see what is so obviously just

plain pain weariness!

Please... I know it's too expensive to be on the patch, and that all the

alternatives would be considered " drugs " in the bad sense. Please, please,

please. You can take them and be responsible. The reasons are different

and you have a lot of support here. I'm sure when I scroll down the screen

I'll see more and better letters.

As for me, the switch from the patch to methadone has been bumpy. I'm back

to bed, but I had to respond to this.

Remember again, I love you, but pain can make you crazier than all of

everything else combined, and you know that. It wears you down!

Take care of you,