Re: Checking in with you all...........

[Guest guest]

Hello everyone,

I have been MIA for awhile, I just have been so depressed and sick. the rheumy has increased my methatrexate 3 times .. I have a 1/3 of my hair left. the Neuro gave a new med. and i had allergic reaction .

even on the steriods..

Just wanted to ck in and leave everyone i am still around, just not on internet much.

many hugs and will chk in again soon

i think of u all everyday and wish u all a pain free day.

[Guest guest]

I am here and doing ok Val A Tn.

Subject: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 6:30 PM

Hi everyone,I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes. Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.Sending lots of hugs and well wishes.DarleneNS Co-Owner/Moderator__________________________________________________

[Guest guest]

I am here and doing about the same Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 6:30 PM

Hi everyone,I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes. Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.Sending lots of hugs and well wishes.DarleneNS Co-Owner/Moderator__________________________________________________

[Guest guest]

Hi. Just trying to get over the shock of our setback. My son has been fighting

Sarcoidosis for a few years now, and after several different medications, a

round of Kemo and various other things, he was said to be in 'remission', that

is to say, the 'tumors' in his brain were shrinking to tiny spots and the ones

in his lungs were clearing, then we turned around and suddenly everything seems

to be back where they were (no different than at the height of the illness). We

were so happy, then our happiness was shattered. Currently, we are at a lower

ebb than when we didn't know where to go.

Hopefully, doctors are researching this malady and are soon to find a cure.

Keep us in your prayers.

Squire Will, father of the victim

>

> Hi everyone,

> I have been checking the messages several times a day and we have not had a

message for two days! That is unbelieveable with 600 members!

> I sincerely hope that you are all busy and NOT ill! How about checking in and

letting us know you are ok....we really do care and worry when we do not hear

from you. You do not have to write a book......just send a note and say, " I am

here and doing ok " ......or if you are really ill, let us know and we will keep

you in our prayers or send get well wishes.

> Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also

ill and fighting to get back on her feet. Keep her in your thoughts and

prayers.

> I am doing ok......have a bad day and a good day....you all know how that

is, I am sure. Please take care and stay as well as you can.

> Sending lots of hugs and well wishes.

> Darlene

> NS Co-Owner/Moderator

>

[Guest guest]

Wishing you better days. Take care. MattSubject: Re: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 9:54 PM

Hello everyone,

I have been MIA for awhile, I just have been so depressed and sick. the rheumy has increased my methatrexate 3 times .. I have a 1/3 of my hair left. the Neuro gave a new med. and i had allergic reaction .

even on the steriods..

Just wanted to ck in and leave everyone i am still around, just not on internet much.

many hugs and will chk in again soon

i think of u all everyday and wish u all a pain free day.

[Guest guest]

HI EVERYONE,I RECENTLY SAW A NEW NEUROLOGIST.AFTER HAVING A BAD EXPERIENCE WITH A NEW ONE I WAS SENT TO FOR A SECOND OPINION,I FEEL GOOD ABOUT THIS ON.TONIGHT I AM IN PAIN FROM MY SARCOID ARTHRITIS,MAINLY MY ANKLES AND BOTH RISK,I LOST MY HEARING I MY LEFT EAR WHILE HOSPITALIZED. MEDICARE AND BLUE CROSS BLUE SHIELD REFUSE TO PAY FOR A HEARING AID I NEED FOR BOTH EARS.DOES ANYONE IN THE COMMUNITY HAVE ANY ADVICE FOR ME.I CAN'T AFFORD TO PAY $3.300 FOR THE HEARING AID MY ENT RECOMMENDED.i PRAY ALL IS WELL FOR ALL OF YOU.AS YOUR DAY SO MAY YOUR STRNGTH BE.HELENSubject: Re: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 6:08 PM

I am here and doing ok. Fighting family problems but I can handle that.

You are all still in my thoughts and prayers. Get well those of you are

sick and stay well those of you who aren't.

Jackie

Checking in with you all......... ..

> Hi everyone,

> I have been checking the messages several times a day and we have not

> had a message for two days! That is unbelieveable with 600 members!

> I sincerely hope that you are all busy and NOT ill! How about checking in

> and letting us know you are ok....we really do care and worry when we do

> not hear from you. You do not have to write a book......just send a note

> and say, "I am here and doing ok"......or if you are really ill, let us

> know and we will keep you in our prayers or send get well wishes.

> Our Moderators are all ill at the moment and my Co-Owner (Tracie) is

> also ill and fighting to get back on her feet. Keep her in your thoughts

> and prayers.

> I am doing ok......have a bad day and a good day....you all know how

> that is, I am sure. Please take care and stay as well as you can.

> Sending lots of hugs and well wishes.

> Darlene

> NS Co-Owner/Moderator

>

>

>

> ------------ --------- --------- ------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....

>

> Message Archives:-

> http://groups. yahoo.com/ group/Neurosarco idosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups. yahoo.com/ group/Neurosarco idosis/database

>

>

[Guest guest]

JESSICA I PRAY THAT YOU FEEL BETTER SOON AND FIND SOME PEACE IN THE MIST OF YOUR DEPRESSION."AS YOUR DAY SO MAY YOUR STRENGTH BE".HELENSubject: Re: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 8:54 PM

Hello everyone,

I have been MIA for awhile, I just have been so depressed and sick. the rheumy has increased my methatrexate 3 times .. I have a 1/3 of my hair left. the Neuro gave a new med. and i had allergic reaction .

even on the steriods..

Just wanted to ck in and leave everyone i am still around, just not on internet much.

many hugs and will chk in again soon

i think of u all everyday and wish u all a pain free day.

[Guest guest]

SQUIRE, I PRAY YOUR SON BE GIVE BETTER NEWS SOON.MAY GOD FOREVER KEEP YOUR FAMILY IN HIS ARMS.BE ENCOURAGED.HELENSubject: Re: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 8:54 PM

Hi. Just trying to get over the shock of our setback. My son has been fighting Sarcoidosis for a few years now, and after several different medications, a round of Kemo and various other things, he was said to be in 'remission', that is to say, the 'tumors' in his brain were shrinking to tiny spots and the ones in his lungs were clearing, then we turned around and suddenly everything seems to be back where they were (no different than at the height of the illness). We were so happy, then our happiness was shattered. Currently, we are at a lower ebb than when we didn't know where to go.

Hopefully, doctors are researching this malady and are soon to find a cure. Keep us in your prayers.

Squire Will, father of the victim

>

> Hi everyone,

> I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!

> I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes.

> Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.

> I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.

> Sending lots of hugs and well wishes.

> Darlene

> NS Co-Owner/Moderator

>

[Guest guest]

Hi everyone, just went thorough some of the emails, thanks for checking in, I know Darlene's having some bad days too.  I thought I was doing pretty good, handling my husbands heart attack and going to all his check ups, but I hit the wall on Friday, just thought I would

go crazy, like I wanted to crawl out of my skin, it was just on fire, and I didn't have any energy, taking naps but not sleeping well, so called my doc and he put me on Prednisone you know that love/hate drug, but right now I am loving it, it will hold

me over until I get my Remicade on Wed. and now my Son is dropping out of college, telling me his been doing drugs, and that not just one, but that he had such a terrible experience, said that God took him to hell,

then should him heaven, so now he feels a calling to do Gods will. (ok I guess I don't understand why that means you can't do his work and stay in college)  more stress, I have to say my husbands seems to be handling it well, I hope he's not holding it in.

Your prayers would be so appreciated.  and know That I pray for all of you all the time, I know it's very difficult to think your in remission or told, and then the walls come falling down around you, been there too. 

So lets take it one day at a time, yesterday is gone, tomorrow never comes, we only have today, right now. We can do it, just one day at  a time, if I didn't remind myself of that, I wouldprobably drive myself crazy. 

Blessings to all, Darlene I hope you start having more good days then bad. Marla

 

Hi everyone,

I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!

I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, " I am here and doing ok " ......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes.

Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.

I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.

Sending lots of hugs and well wishes.

Darlene

NS Co-Owner/Moderator

[Guest guest]

Thanks for asking Darlene. Down in the dumps lately so trying to focus on

non-sarc related stuff. Got the heave-oh from the neuro...your scans are clean

so not much we can do for you unless you get show neuro symptoms again. Based

upon symptoms (significant pain & overwhelming fatigue), they are thinking I

might have fibromyalgia in addition to sarc & alopecia...sigh. They gave me a

referral to a rheumy whom I'm still trying to get an appointment with. Rheumy's

office is waiting on the paperwork. In the meantime, I'm off any meds pain or

otherwise so they can see the symptoms.

Hope everyone is doing OK.

Peace, Tony

[Guest guest]

Hi to all

I have read the check in posts and was sad to hear we are all down and experiencing rough times. You are all, as always, in my prayers. If He brings you to it He will bring you through it.

Hope all have a better day with more to come.

Jackie

Re: Checking in with you all...........

Hi everyone, just went thorough some of the emails, thanks for checking in, I know Darlene's having some bad days too. I thought I was doing pretty good, handling my husbands heart attack and going to all his check ups, but I hit the wall on Friday, just thought I would go crazy, like I wanted to crawl out of my skin, it was just on fire, and I didn't have any energy, taking naps but not sleeping well, so called my doc and he put me on Prednisone you know that love/hate drug, but right now I am loving it, it will hold me over until I get my Remicade on Wed. and now my Son is dropping out of college, telling me his been doing drugs, and that not just one, but that he had such a terrible experience, said that God took him to hell,then should him heaven, so now he feels a calling to do Gods will. (ok I guess I don't understand why that means you can't do his work and stay in college) more stress, I have to say my husbands seems to be handling it well, I hope he's not holding it in. Your prayers would be so appreciated. and know That I pray for all of you all the time, I know it's very difficult to think your in remission or told, and then the walls come falling down around you, been there too. So lets take it one day at a time, yesterday is gone, tomorrow never comes, we only have today, right now. We can do it, just one day at a time, if I didn't remind myself of that, I wouldprobably drive myself crazy. Blessings to all, Darlene I hope you start having more good days then bad. Marla

Hi everyone,I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes. Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.Sending lots of hugs and well wishes.DarleneNS Co-Owner/Moderator

[Guest guest]

Will keep you in our prayers. Went through that this summer with my wife and as a result a change in meds...and I am still not so sure it is for the better. Take care. Hoep for brighter & better daysMattSubject: Re: Checking in with you all...........To: Neurosarcoidosis Date: Sunday, September 20, 2009, 9:54 PM

Hi. Just trying to get over the shock of our setback. My son has been fighting Sarcoidosis for a few years now, and after several different medications, a round of Kemo and various other things, he was said to be in 'remission', that is to say, the 'tumors' in his brain were shrinking to tiny spots and the ones in his lungs were clearing, then we turned around and suddenly everything seems to be back where they were (no different than at the height of the illness). We were so happy, then our happiness was shattered. Currently, we are at a lower ebb than when we didn't know where to go.

Hopefully, doctors are researching this malady and are soon to find a cure. Keep us in your prayers.

Squire Will, father of the victim

>

> Hi everyone,

> I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!

> I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes.

> Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.

> I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.

> Sending lots of hugs and well wishes.

> Darlene

> NS Co-Owner/Moderator

>

[Guest guest]

Check with your local adult rehab in your area, I know here in Alabama they help with needs like that. I hope you can get the help you need. God Bless,

Alice

From: jackie <shadowme810@ verizon.net>Subject: Re: Checking in with you all......... ..To: Neurosarcoidosis@ yahoogroups. comDate: Sunday, September 20, 2009, 6:08 PM

I am here and doing ok. Fighting family problems but I can handle that..You are all still in my thoughts and prayers. Get well those of you are sick and stay well those of you who aren't.Jackie Checking in with you all......... ..> Hi everyone,> I have been checking the messages several times a day and we have not > had a message for two days! That is unbelieveable with 600 members!> I sincerely hope that you are all busy and NOT ill! How about checking in > and letting us know you are ok....we really do care and worry when we do > not hear from you. You do not have to write a book......just send a note > and say, "I am here and doing

ok"......or if you are really ill, let us > know and we will keep you in our prayers or send get well wishes.> Our Moderators are all ill at the moment and my Co-Owner (Tracie) is > also ill and fighting to get back on her feet. Keep her in your thoughts > and prayers.> I am doing ok......have a bad day and a good day....you all know how > that is, I am sure. Please take care and stay as well as you can.> Sending lots of hugs and well wishes.> Darlene> NS Co-Owner/Moderator>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

darleneI have been so lucky since my diagnosis that I thought that I was going to get by with a really mild case. I had not had a flare up in months so my Dr. stopped my Remicade treatments. well, all hell as broken loose. i have a spot on my lung being investigated and a muscle in my heart that the cardiologist says isn't working and is probably related to the sarcoid. sed rates are up, inflamation markers are up and I blew out my knee. I feel like the pitts. I have lost 35 pounds, can't eat; am nauseous and throw up everything 3 out of 7 days per week. Does this sound like the progression that sarcoid takes once it becomes more active or serious? The docs don't want to discourage me but I need some straight answersThanks for your help!Debbie

Tschoepetschod@...From: teddybear89_dd2 To: Neurosarcoidosis Sent: Sunday, September 20, 2009 5:30:46 PMSubject: Checking in with you all...........

Hi everyone,

I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!

I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes.

Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.

I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.

Sending lots of hugs and well wishes.

Darlene

NS Co-Owner/Moderator