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

[Guest guest]

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

>

>

>

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>

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[Guest guest]

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]

Debbie,

Did your docs consider that the reason you were doing so well was because of the Remicade. This is not a disease where we get to "stop" treatment-- it's the treatment that keeps it at bay. Take away the treatment and the sarc comes back-- and seems to add other body "systems" to it's program.

Get them to get you back on the Remicade-- NOW. They can still check out the heart stuff and the "spot" on your lung-- while you are getting infusions.

I so wish this was a disease that when we're better, we stop whatever meds we've been on-- but the meds don't cure anything-- they just help make life livable.

Take care and get those docs onboard-- no treatment is a prescription for a serious rebound in your immune system attacking you-- and that is what's happening.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Monday, September 21, 2009 2:22:30 PMSubject: Re: Checking in with you all...........

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 (AT) sbcglobal (DOT) net

To: Neurosarcoidosis@ yahoogroups. comSent: 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.DarleneNS Co-Owner/Moderator

[Guest guest]

Thanks Tracie,We get routine MRI's and the granulomas in the brain are the cause of these incidents when they seem to occur. It usually means the med is not working. I have notified the doctors and asked about the cellcept. They are reviewing the last MRII and will decide if a curren tone is needed and then go from there. I will keep the thought of going to the ER in mind if I need it, especially if I begin to think the docs are dragging anchor.Take careMatt

From: squire_will <squire_will@ yahoo.com>Subject: Re: Checking in with you all......... ..To: Neurosarcoidosis@ yahoogroups. comDate: 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]

I have been very ill. Over the past 12 months I have had 10 hospitalizations.

So I have not had the energy or concentration to check in. I am sorry to hear

that our moderators are also ill. This appears to have been a hard year. Today

is physically and mentally clear day so I have been going through my 7000+

emails. Sorry for the delay in replying, maybe most of the group is feeling

better by now.

>

> 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

>