Tracie update

[Guest guest]

Tracie - As I told Darlene, don't worry about the list, take care of yourself right now. All that smoke does not sound good for you at all. Try and not think of the list here. I know I haven't been around either a lot. I'm sorry, but I have been having gastro issues, breathing issues and gyno issues myself the past month or so. I am trying to get back up to speed now, so I will try and be on as much as possible. So try and rest up and get well , don't worry about the list. OK? Luv, Debbie T. Co-Moderator PS - thanks for your help too.tiodaat@... wrote: I've been to Sacramento and this week, seeing the

Rheumi and Neuro. I'm upping the dosage of my Remicade to the top of the allowed amount-- and i'm not that excited about the idea. I've been having problems with my lungs again since we had some horrible forest fires in our area- and we were directly down the canyon from them-- so we got the smoke for 3 wks. I'm just plain having a hard time right now--- and am so very exhausted. I know Darlene is with her daughter who is going to make Darlene a grandma again!! She needs our prayers- both granny and mom. The baby is early and has a congenital heart defect that may require surgery right away. This is a long- long wait for this child-- the parents have waited 13 long years. So please keep them in your prayers. Rosie I know you're headed for the conference this weekend, do pace yourself my friend. We don't need more of us down.

Debbie-- check in-- and we'll see what we all need to do tag-teaming here. I know will be around-- so I'll be checking in for short periods of time. I wish I had more energy to share with all of you, but I'm shorted out right now. We are looking into how my thyroid may be effecting my sarc and energy and balance issues. Neuro wants me to see the Endo-- which I requested to see 14 months ago. ... Now it's up to me to follow up--not sure what to do... Love to all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage.

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[Guest guest]

Tracie, what a heavy load you are carrying right now. Don't worry about the list; that will lighten it a little. Actually, the Indy conf. isn't until 10/12-13, but thanks for remembering. You are in my thoughts & prayers every day.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: NSMods ; Neurosarcoidosis From: tiodaat@...Date: Wed, 3 Oct 2007 02:20:35 -0400Subject: Tracie update

I've been to Sacramento and this week, seeing the Rheumi and Neuro. I'm upping the dosage of my Remicade to the top of the allowed amount-- and i'm not that excited about the idea.

I've been having problems with my lungs again since we had some horrible forest fires in our area- and we were directly down the canyon from them-- so we got the smoke for 3 wks.

I'm just plain having a hard time right now--- and am so very exhausted. I know Darlene is with her daughter who is going to make Darlene a grandma again!! She needs our prayers- both granny and mom. The baby is early and has a congenital heart defect that may require surgery right away. This is a long- long wait for this child-- the parents have waited 13 long years. So please keep them in your prayers.

Rosie I know you're headed for the conference this weekend, do pace yourself my friend. We don't need more of us down.

Debbie-- check in-- and we'll see what we all need to do tag-teaming here. I know will be around-- so I'll be checking in for short periods of time.

I wish I had more energy to share with all of you, but I'm shorted out right now. We are looking into how my thyroid may be effecting my sarc and energy and balance issues.

Neuro wants me to see the Endo-- which I requested to see 14 months ago. ... Now it's up to me to follow up--not sure what to do...

Love to all,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

[Guest guest]

You know, it seems like God, or the universe, or whatever, looks out for us. When one or more moderators are too sick to be active on the list, somebody else is feeling spiffy enough to take up the slack. And often, some of the group members kick in with their wisdom & experience. So, those who struggling a lot now, truly put yourselves first. Your NS family will be okay.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rozebudz36@...Date: Wed, 3 Oct 2007 07:57:08 -0700Subject: Re: Tracie update

Tracie - As I told Darlene, don't worry about the list, take care of yourself right now. All that smoke does not sound good for you at all. Try and not think of the list here. I know I haven't been around either a lot. I'm sorry, but I have been having gastro issues, breathing issues and gyno issues myself the past month or so. I am trying to get back up to speed now, so I will try and be on as much as possible. So try and rest up and get well , don't worry about the list. OK? Luv, Debbie T. Co-Moderator

PS - thanks for your help too.tiodaat (AT) aol (DOT) com wrote:

I've been to Sacramento and this week, seeing the Rheumi and Neuro. I'm upping the dosage of my Remicade to the top of the allowed amount-- and i'm not that excited about the idea.

I've been having problems with my lungs again since we had some horrible forest fires in our area- and we were directly down the canyon from them-- so we got the smoke for 3 wks.

I'm just plain having a hard time right now--- and am so very exhausted. I know Darlene is with her daughter who is going to make Darlene a grandma again!! She needs our prayers- both granny and mom. The baby is early and has a congenital heart defect that may require surgery right away. This is a long- long wait for this child-- the parents have waited 13 long years. So please keep them in your prayers.

Rosie I know you're headed for the conference this weekend, do pace yourself my friend. We don't need more of us down.

Debbie-- check in-- and we'll see what we all need to do tag-teaming here. I know will be around-- so I'll be checking in for short periods of time.

I wish I had more energy to share with all of you, but I'm shorted out right now. We are looking into how my thyroid may be effecting my sarc and energy and balance issues.

Neuro wants me to see the Endo-- which I requested to see 14 months ago. ... Now it's up to me to follow up--not sure what to do...

Love to all,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your Homepage.

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

[Guest guest]

I'm 1000 miles north of LA, and we are inudated with smoke-- so the fact that Denver is getting it doesn't surprise me. That is a huge amount of land that is burning, and the smoke had to go somewhere.

I'm having to be on my oxygen again-- pretty much 24/7 since the fires that were up in Lassen County just 60 miles north of us came in last month. The air quality cleared up for a week, then they gave the rice farmers the ok to burn the rice stubble, and LA caught on fire. Not much of a loss-- except the homes.

Torey's ex-girlfriend sent him an email that said her grandparents lost their home - a small $2 million dollar mansion near San Diego. Her Jeep is gone to the fire-- it was being stored there-- so she's out a car. Which is good, she just got out of long-term alcholol abuse facility, and isn't ready to be part of the world yet. I just keep praying she'll find her way- and stay sober.

LA is scary-- now that a lot of it has burnt, and it does this every summer when the Santaanna winds kick in-- the next problem will be the landslides. The whole area is desert- and everything is built on sanddunes. So take away the plants, and the rains make for quicksand-- sliding down the hillsides. So many say they love the city-- I sure didn't see anything that impressed me. I'll take my pines anyday.

Actually, I have to cool my jets-- we live in an area that has one main road in and out. They've not let the Forestry service do any control burns in so long-- that we are a disaster waiting to happen also.

My guys are trained in Emergency Response, so if a fire ever did take off, they'd be trying ot get people out and to safe zones. We keep the family pictures and all in an old chest-- so it would be to grab the gnome collection and pictures and animals-- and kiss it goodbye.

We're a "retirement" community, and during the last snow storm last year, a bunch of seniors always decide that they need to get their meds and groceries, and ended up on the only bridge across the reservoir-- and ended up stuck. So they locked their cars -- left them on the bridge, and hiked up the road. No one could get in or out-- and what should have been a 30 min drive across the dam in that condition-- ended up a 5 hr delay while they got towtrucks and broke into the cars to get them out of the way. As athe retirees die off, they are replaced by those of us that are working age-- so slowly it's becoming a bedroom community. Such fun...

I've been struggling lately-- I do think it's the poor air quality. I find myself sleeping more than not. My pain is under control-- thankfully. It the lungs and fatigue that have me down.

I'm still kind of taking a leave of absence, and your wonderful moderators are holding down the fort-- and doing great!! Thanks guys, you know you're loved.

Anyway, that is my story, and Ron's sticking to it. (Ok, Ron-- it's a challenge, take your best shot :-)!!!

BLessings,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I'm 1000 miles north of LA, and we are inudated with smoke-- so the fact that Denver is getting it doesn't surprise me. That is a huge amount of land that is burning, and the smoke had to go somewhere.

I'm having to be on my oxygen again-- pretty much 24/7 since the fires that were up in Lassen County just 60 miles north of us came in last month. The air quality cleared up for a week, then they gave the rice farmers the ok to burn the rice stubble, and LA caught on fire. Not much of a loss-- except the homes.

Torey's ex-girlfriend sent him an email that said her grandparents lost their home - a small $2 million dollar mansion near San Diego. Her Jeep is gone to the fire-- it was being stored there-- so she's out a car. Which is good, she just got out of long-term alcholol abuse facility, and isn't ready to be part of the world yet. I just keep praying she'll find her way- and stay sober.

LA is scary-- now that a lot of it has burnt, and it does this every summer when the Santaanna winds kick in-- the next problem will be the landslides. The whole area is desert- and everything is built on sanddunes. So take away the plants, and the rains make for quicksand-- sliding down the hillsides. So many say they love the city-- I sure didn't see anything that impressed me. I'll take my pines anyday.

Actually, I have to cool my jets-- we live in an area that has one main road in and out. They've not let the Forestry service do any control burns in so long-- that we are a disaster waiting to happen also.

My guys are trained in Emergency Response, so if a fire ever did take off, they'd be trying ot get people out and to safe zones. We keep the family pictures and all in an old chest-- so it would be to grab the gnome collection and pictures and animals-- and kiss it goodbye.

We're a "retirement" community, and during the last snow storm last year, a bunch of seniors always decide that they need to get their meds and groceries, and ended up on the only bridge across the reservoir-- and ended up stuck. So they locked their cars -- left them on the bridge, and hiked up the road. No one could get in or out-- and what should have been a 30 min drive across the dam in that condition-- ended up a 5 hr delay while they got towtrucks and broke into the cars to get them out of the way. As athe retirees die off, they are replaced by those of us that are working age-- so slowly it's becoming a bedroom community. Such fun...

I've been struggling lately-- I do think it's the poor air quality. I find myself sleeping more than not. My pain is under control-- thankfully. It the lungs and fatigue that have me down.

I'm still kind of taking a leave of absence, and your wonderful moderators are holding down the fort-- and doing great!! Thanks guys, you know you're loved.

Anyway, that is my story, and Ron's sticking to it. (Ok, Ron-- it's a challenge, take your best shot :-)!!!

BLessings,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Tracie, I've been worried about you with all that smoke. Do you have air-cleaners or purifiers? Just lay low and rest and watch some funny movies and know that this too will pass. That's what I tell myself in the middle of yet another painful flare. Smoke smell is the worst for me...I can't even stand my sister burning wood in their house. Makes me sick after 20-30 minutes. Thank God for the oxygen. Take care and hugs

S.tiodaat@... wrote: I'm 1000 miles north of LA, and we are inudated with smoke-- so the fact that Denver is getting it doesn't surprise me. That is a huge amount of land that is burning, and the smoke had to go somewhere. I'm having to be on my oxygen again-- pretty much 24/7 since the fires that were up in Lassen County just 60 miles north of us came in last month. The air quality cleared up for a week, then they gave the rice

farmers the ok to burn the rice stubble, and LA caught on fire. Not much of a loss-- except the homes. Torey's ex-girlfriend sent him an email that said her grandparents lost their home - a small $2 million dollar mansion near San Diego. Her Jeep is gone to the fire-- it was being stored there-- so she's out a car. Which is good, she just got out of long-term alcholol abuse facility, and isn't ready to be part of the world yet. I just keep praying she'll find her way- and stay sober. LA is scary-- now that a lot of it has burnt, and it does this every summer when the Santaanna winds kick in-- the next problem will be the landslides. The whole area is desert- and everything is built on sanddunes. So take away the plants, and the rains make for quicksand-- sliding down the hillsides. So many say they love the city-- I sure didn't see anything that impressed me.

I'll take my pines anyday. Actually, I have to cool my jets-- we live in an area that has one main road in and out. They've not let the Forestry service do any control burns in so long-- that we are a disaster waiting to happen also. My guys are trained in Emergency Response, so if a fire ever did take off, they'd be trying ot get people out and to safe zones. We keep the family pictures and all in an old chest-- so it would be to grab the gnome collection and pictures and animals-- and kiss it goodbye. We're a "retirement" community, and during the last snow storm last year, a bunch of seniors always decide that they need to get their meds and groceries, and ended up on the only bridge across the reservoir-- and ended up stuck. So they locked their cars -- left them on the bridge, and hiked up the road. No one could get in or out-- and what

should have been a 30 min drive across the dam in that condition-- ended up a 5 hr delay while they got towtrucks and broke into the cars to get them out of the way. As athe retirees die off, they are replaced by those of us that are working age-- so slowly it's becoming a bedroom community. Such fun... I've been struggling lately-- I do think it's the poor air quality. I find myself sleeping more than not. My pain is under control-- thankfully. It the lungs and fatigue that have me down. I'm still kind of taking a leave of absence, and your wonderful moderators are holding down the fort-- and doing great!! Thanks guys, you know you're loved. Anyway, that is my story, and Ron's sticking to it. (Ok, Ron-- it's a challenge, take your

best shot :-)!!! BLessings, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Tracie, I've been worried about you with all that smoke. Do you have air-cleaners or purifiers? Just lay low and rest and watch some funny movies and know that this too will pass. That's what I tell myself in the middle of yet another painful flare. Smoke smell is the worst for me...I can't even stand my sister burning wood in their house. Makes me sick after 20-30 minutes. Thank God for the oxygen. Take care and hugs

S.tiodaat@... wrote: I'm 1000 miles north of LA, and we are inudated with smoke-- so the fact that Denver is getting it doesn't surprise me. That is a huge amount of land that is burning, and the smoke had to go somewhere. I'm having to be on my oxygen again-- pretty much 24/7 since the fires that were up in Lassen County just 60 miles north of us came in last month. The air quality cleared up for a week, then they gave the rice

farmers the ok to burn the rice stubble, and LA caught on fire. Not much of a loss-- except the homes. Torey's ex-girlfriend sent him an email that said her grandparents lost their home - a small $2 million dollar mansion near San Diego. Her Jeep is gone to the fire-- it was being stored there-- so she's out a car. Which is good, she just got out of long-term alcholol abuse facility, and isn't ready to be part of the world yet. I just keep praying she'll find her way- and stay sober. LA is scary-- now that a lot of it has burnt, and it does this every summer when the Santaanna winds kick in-- the next problem will be the landslides. The whole area is desert- and everything is built on sanddunes. So take away the plants, and the rains make for quicksand-- sliding down the hillsides. So many say they love the city-- I sure didn't see anything that impressed me.

I'll take my pines anyday. Actually, I have to cool my jets-- we live in an area that has one main road in and out. They've not let the Forestry service do any control burns in so long-- that we are a disaster waiting to happen also. My guys are trained in Emergency Response, so if a fire ever did take off, they'd be trying ot get people out and to safe zones. We keep the family pictures and all in an old chest-- so it would be to grab the gnome collection and pictures and animals-- and kiss it goodbye. We're a "retirement" community, and during the last snow storm last year, a bunch of seniors always decide that they need to get their meds and groceries, and ended up on the only bridge across the reservoir-- and ended up stuck. So they locked their cars -- left them on the bridge, and hiked up the road. No one could get in or out-- and what

should have been a 30 min drive across the dam in that condition-- ended up a 5 hr delay while they got towtrucks and broke into the cars to get them out of the way. As athe retirees die off, they are replaced by those of us that are working age-- so slowly it's becoming a bedroom community. Such fun... I've been struggling lately-- I do think it's the poor air quality. I find myself sleeping more than not. My pain is under control-- thankfully. It the lungs and fatigue that have me down. I'm still kind of taking a leave of absence, and your wonderful moderators are holding down the fort-- and doing great!! Thanks guys, you know you're loved. Anyway, that is my story, and Ron's sticking to it. (Ok, Ron-- it's a challenge, take your

best shot :-)!!! BLessings, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Well, this has been a week. The neurologist has decided since there are no

granulomas showing in my brain that I don't have NS. I do have muscle and nerve

involvement, but it's not in my brain. I think I should be elated-- but I know

he's out to lunch.

As for today's cardiology appt-- I do have pulmonary hypertension-- and need to

see the pulmonologist. I do have an aortic valve that is sticking-- but no signs

of infarct (heart attack) and no conduction problems at this point. So that is

good-- however, we know that both the valve issues and the PH is caused by the

sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any

emergency before then.

I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is

seriously whacked out-- if we get that under control-- these other issues may

mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked

for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be

losing some of my " cool " when I do see the GP in the next week or so.

Last time I saw her-- she told me " you must be a very very pactient person--

well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious

depression and weight gain this whole time-- and I'm now pissed. How many

letters from the other docs does it take to get me into someone that can help

with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as

hell won't come from any of them.

Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors

house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next

few days-- I'm tired.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Well, this has been a week. The neurologist has decided since there are no

granulomas showing in my brain that I don't have NS. I do have muscle and nerve

involvement, but it's not in my brain. I think I should be elated-- but I know

he's out to lunch.

As for today's cardiology appt-- I do have pulmonary hypertension-- and need to

see the pulmonologist. I do have an aortic valve that is sticking-- but no signs

of infarct (heart attack) and no conduction problems at this point. So that is

good-- however, we know that both the valve issues and the PH is caused by the

sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any

emergency before then.

I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is

seriously whacked out-- if we get that under control-- these other issues may

mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked

for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be

losing some of my " cool " when I do see the GP in the next week or so.

Last time I saw her-- she told me " you must be a very very pactient person--

well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious

depression and weight gain this whole time-- and I'm now pissed. How many

letters from the other docs does it take to get me into someone that can help

with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as

hell won't come from any of them.

Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors

house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next

few days-- I'm tired.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Hang in there Girlfriend.. I know your pain, your anger, your hurt.. haven't thought about throwing tomatoes.. but may give it a try myself.. I know I can hit my neighbors house..which might prompt them to pay me a visit.. which I don't want.. grrrr.. in my younger years I would have gone out and chopped down a tree..lol

I have no trees left in my yard, soooo I guess.. I'll just sit here and dream about what do I/we do next..

Somebody stop this train.. I want OFF!!

LOL<HUTS<

Tracie update

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.5/1356 - Release Date: 4/2/2008 4:14 PM

[Guest guest]

Hang in there Girlfriend.. I know your pain, your anger, your hurt.. haven't thought about throwing tomatoes.. but may give it a try myself.. I know I can hit my neighbors house..which might prompt them to pay me a visit.. which I don't want.. grrrr.. in my younger years I would have gone out and chopped down a tree..lol

I have no trees left in my yard, soooo I guess.. I'll just sit here and dream about what do I/we do next..

Somebody stop this train.. I want OFF!!

LOL<HUTS<

Tracie update

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.5/1356 - Release Date: 4/2/2008 4:14 PM

[Guest guest]

Tracie,

You take care of YOURSELF! Do not worry about us. You need to rest,

rest, and rest.................we are doing fine. I understand how you feel and most

of those of us on the list probably understand also..........Like you, I am happy to

hear the Dr said you did not have NS, but also like you, I wonder ???????? My

Dr is doing me much the same way......he has it in his mind that I am in remission

and wants to take me off the Imuran and then the Sporonox and once again, I

said "No", so he is going to wait another 6 months before he wants to try it again.

I may be looking for another Dr.............. I do believe that we (all of us with Sarc)

have to teach these Dr's about our disease. For some reason, none seem to feel

that it is serious and that we really ARE very sick. I know that WE know more

about our own body that a Dr does, but it really irks me to go to a Dr and pay

him those high prices for him to ask How Am I Doing? I want to yell..............

THAT'S WHAT I AM HERE FOR......TO FIND OUT HOW I AM DOING!

Sorry about the vent...........but.........anyway, I am doing ok right now and am

here so you do what you need to do to take care of yourself and DO NOT

WORRY ABOUT US! We are fine --- is here a lot and now Marla

is so I have lots of help. Please let us know how you are doing but please do

take care of yourself and take the time you need.

Love ya,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Tracie,

You take care of YOURSELF! Do not worry about us. You need to rest,

rest, and rest.................we are doing fine. I understand how you feel and most

of those of us on the list probably understand also..........Like you, I am happy to

hear the Dr said you did not have NS, but also like you, I wonder ???????? My

Dr is doing me much the same way......he has it in his mind that I am in remission

and wants to take me off the Imuran and then the Sporonox and once again, I

said "No", so he is going to wait another 6 months before he wants to try it again.

I may be looking for another Dr.............. I do believe that we (all of us with Sarc)

have to teach these Dr's about our disease. For some reason, none seem to feel

that it is serious and that we really ARE very sick. I know that WE know more

about our own body that a Dr does, but it really irks me to go to a Dr and pay

him those high prices for him to ask How Am I Doing? I want to yell..............

THAT'S WHAT I AM HERE FOR......TO FIND OUT HOW I AM DOING!

Sorry about the vent...........but.........anyway, I am doing ok right now and am

here so you do what you need to do to take care of yourself and DO NOT

WORRY ABOUT US! We are fine --- is here a lot and now Marla

is so I have lots of help. Please let us know how you are doing but please do

take care of yourself and take the time you need.

Love ya,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Tracie,

I am soooooo sorry you are having such a tough time. My first thought was how we can we get back at these creeps but the right thing to do is to pray for you and them. Please just take care of yourself. You are so important to all of us and we hate to see you being stressed out.

Take a big deep breath and then throw those tomatoes.

Terri G.>> Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.> As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. > So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. > I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. > I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. > Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. > I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.> Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????> > Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.> > Sincerely,> Tracie> NS Co-owner/moderator>

[Guest guest]

Tracie,

I am soooooo sorry you are having such a tough time. My first thought was how we can we get back at these creeps but the right thing to do is to pray for you and them. Please just take care of yourself. You are so important to all of us and we hate to see you being stressed out.

Take a big deep breath and then throw those tomatoes.

Terri G.>> Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.> As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. > So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. > I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. > I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. > Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. > I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.> Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????> > Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.> > Sincerely,> Tracie> NS Co-owner/moderator>

[Guest guest]

Tracie, I'm sorry to hear all this, I know what you're saying, I am losing it as far as waiting to start the Remicade my husband said we could just pay for it, but they had big drama this week at work and that put everything else behind including me, so I am feeling pretty down too, a friend called and asked me to lunch so will do that, and go to the bank, and of course pick up the medications that are really not helping so much any more. Well Tracie, too bad we weren't closer we could have a contest see who throws the tomato the farthest!

I hope some blessings come your way soon, always thinking of you, Marla

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.

As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then.

I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my " cool " when I do see the GP in the next week or so.

Last time I saw her-- she told me " you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.

Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.

Sincerely,

Tracie

NS Co-owner/moderator

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Tracie, I'm sorry to hear all this, I know what you're saying, I am losing it as far as waiting to start the Remicade my husband said we could just pay for it, but they had big drama this week at work and that put everything else behind including me, so I am feeling pretty down too, a friend called and asked me to lunch so will do that, and go to the bank, and of course pick up the medications that are really not helping so much any more. Well Tracie, too bad we weren't closer we could have a contest see who throws the tomato the farthest!

I hope some blessings come your way soon, always thinking of you, Marla

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.

As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then.

I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my " cool " when I do see the GP in the next week or so.

Last time I saw her-- she told me " you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.

Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.

Sincerely,

Tracie

NS Co-owner/moderator

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!! Cathytracie feldhaus wrote: Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't

have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the

next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

[Guest guest]

Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!! Cathytracie feldhaus wrote: Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't

have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the

next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

[Guest guest]

HI Cathy,yes it was me that said that, I have 2 third cousins with sarc, however I don't think the doctors there know much more, as one cousin is already in a wheel chair and the other one is pretty sick too, I just know my Mom told me when she was over there visiting and you said Sarcoidosis, everyone knew what you were talking about, kind of like MS here, my Mom has it too, but she is one of the ones that have not had any problems with it, she was dx in her 70's now she is in her 80's and still doing great. well that's all I know, not very helpful I know. blessings, Marl a

Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't

have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my " cool " when I do see the GP in the

next week or so. Last time I saw her-- she told me " you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

HI Cathy,yes it was me that said that, I have 2 third cousins with sarc, however I don't think the doctors there know much more, as one cousin is already in a wheel chair and the other one is pretty sick too, I just know my Mom told me when she was over there visiting and you said Sarcoidosis, everyone knew what you were talking about, kind of like MS here, my Mom has it too, but she is one of the ones that have not had any problems with it, she was dx in her 70's now she is in her 80's and still doing great. well that's all I know, not very helpful I know. blessings, Marl a

Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't

have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension-- and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't.

So back in a year for ongoing echocardiograms-- and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also.

I'm tired of being the " birdie " in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my " cool " when I do see the GP in the

next week or so. Last time I saw her-- she told me " you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement.

I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????

Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Sadly, we are now in the middle of several huge fires going on all around us. We are on possible evacuation notice, so may be told to get out.

We had some nasty, nasty thunder and lightening last Sat that started over 27 fires in our neck of the woods-- and they haven't been able to get the 2 major ones out. This is rugged, rugged country, we live on a series of ridge tops, and on both sides of the one we live in, we have a major fire. The smoke has been too bad to allow for air strikes, and it is lava fields and piers up the sides of the canyons, so you can't just climb down. It hasn't burned since 1972-- and the ground cover of manzanita is so dense-- and it burns super hot. It's impossible to get tractors or anything down there-- so we're at the mercy of firemen on foot. They are having a time with the updrafts and such in the canyons-- and so it is dangerous stuff for them.

I'm literally praying we don't get the reverse 911 call that says evacuate. AAARGHHH.

Now-- for you and the hoarseness-- Remicade can give you sinus problems-- slight infections-- and that can be the reason for the hoarseness. Are you using the Sinus Rinse? I found that was the best way for me to handle the added congestion. I also use Humibid 600mg nightly-- as that keeps the mucus from building up in my lungs and sinuses.

I'll try to check in more this week, I know you've got your infusion tomorrow, so will try to be here. If you don't see me online-- it'll mean we probably had to head out.

Love to all,

Tracie

Re: ScienceDaily: Potential New Way To Block Inflammation In Autoimmune Disease Discovered

Hey Tracie, see you are still hanging in there, are the fires all put out, I keep hearing about the fires all over Calif. Hope your feeling well, I go in for dose 2, looking forward to it. Take care, Blessings, Marla

tracie (Tiodaat@...) has sent you a link to the following page on ScienceDaily:Potential New Way To Block Inflammation In Autoimmune Disease Discoveredhttp://www.sciencedaily.com/releases/2008/06/080619120657.htmResearchers have identified a promising new target for autoimmune disease treatment -- a cell-surface receptor called DR3. Their research in mice, published in Immunity, suggests that blocking this receptor could slow or stop the damaging inflammation characteristic of autoimmune diseases, potentially without leaving the body vulnerable to serious infections, as many current therapies do.* Note: the sender's email address has not been verified.-- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope

[Guest guest]

Well glad to hear it was not your heart tracie........that's good news. but i know any severe pain is not fun. just rest up for your treatment..

Many Blessings and Hugs Abouhamama

I've been having some severe chest pain the last couple of nights, and ended up in ER today. They ran all the tests, and decided it was my fibromyalgia- so they loaded me up on Toradol and sent me home.

I'm exhausted, Wed is Remicade -- so I won't be around the next couple of days.

I gave Marla a longer description of what was happening, so if she wants she can forward it on to you.

Thanks

Tracie

NS Co-owner/moderator

PS. I know we have a couple of newbies-- Marla will answer what she can, and I know Debbie and Darlene are out there somewhere-- so please be patient, we'll tag team it-- and make sure you're questions get response. Rose is still dealing the all the stuff with her mom's estate, and is feeling quite overwhelmed-- so keep her in your thoughts.

thx

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