Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi , I was diagnosed with Sarc in my lungs back in 1997 after a 3 year nightmare of visiting Doctors. I think I have had Sarc since early childhood or maybe even was born with it. I know what you are going through and not being able to plan ahead for things is one of my biggest problem. It seems like every time I plan something, I am in a flare when that time comes. It is very frustrating. I have had to give up going places alone and for me, that was BIG. I am afraid to drive by myself. I can get up in the morning feeling somewhat ok and by noon, I can be deathly sick! VERY hard to accept. Just know that you are NOT alone in this...........we have 600+ members and there are a lot who are able to help and WILL help. First hand knowledge is the best........I have found that unless the Doctors have had Sarc or has Sarc in the family, they don't really know what all Sarc does! For the past few months, my Doctor has told me I was in remission and that is a laugh! Once you have Sarc, you are able to tell completely when you are in a flare and when you are not...........Just hang in there and know that we are here for you and most of all, WE DO CARE! Hugs, Darlene NS Co-Owner/Moderator Getting back to life > Havent been on this sight for a while. I have been really sick. I just > found out that not only do i have sarcoids in my brain butr also in my > lungs now. Just got on some new meds and am able to function on some > days. I have a new Dr at the cleveland clinic sarcoid center. I didnt > knoiw they had one but i am sure glad they do. Wondered if anyh one goes > to their suport group in Euclid. I would like to find out more about it. > I miss chating with all of you and would love to share stories and listen > to other peoples experiences. I want to plan for things to come but i > don't think that is posible. Sarcoids seems to have its own adjenda and > plans and i never know what i will be able to do and what i wont. > Thanks for this place to share and huggs to all > karen > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Seems that is the way this illness works. has the same issues as well. Feeling good one moment & crappy the next. You are so correct it makes it so hard to plan anything. Take care of yourself. We will keep you in our prayers.MattSubject: Re: Getting back to lifeTo: Neurosarcoidosis Date: Sunday, January 10, 2010, 5:37 AM Hi , I was diagnosed with Sarc in my lungs back in 1997 after a 3 year nightmare of visiting Doctors. I think I have had Sarc since early childhood or maybe even was born with it. I know what you are going through and not being able to plan ahead for things is one of my biggest problem. It seems like every time I plan something, I am in a flare when that time comes. It is very frustrating. I have had to give up going places alone and for me, that was BIG. I am afraid to drive by myself. I can get up in the morning feeling somewhat ok and by noon, I can be deathly sick! VERY hard to accept. Just know that you are NOT alone in this........ ...we have 600+ members and there are a lot who are able to help and WILL help. First hand knowledge is the best........ I have found that unless the Doctors have had Sarc or has Sarc in the family, they don't really know what all Sarc does! For the past few months, my Doctor has told me I was in remission and that is a laugh! Once you have Sarc, you are able to tell completely when you are in a flare and when you are not......... ..Just hang in there and know that we are here for you and most of all, WE DO CARE! Hugs, Darlene NS Co-Owner/Moderator Getting back to life > Havent been on this sight for a while. I have been really sick. I just > found out that not only do i have sarcoids in my brain butr also in my > lungs now. Just got on some new meds and am able to function on some > days. I have a new Dr at the cleveland clinic sarcoid center. I didnt > knoiw they had one but i am sure glad they do. Wondered if anyh one goes > to their suport group in Euclid. I would like to find out more about it. > I miss chating with all of you and would love to share stories and listen > to other peoples experiences. I want to plan for things to come but i > don't think that is posible. Sarcoids seems to have its own adjenda and > plans and i never know what i will be able to do and what i wont. > Thanks for this place to share and huggs to all > karen > > > > ------------ --------- --------- ------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010  Thanks, Matt.....all prayers are appreciated. Please tell hello and give her a hug from me......... Hugs,DarleneNS Co-Owner/Moderator Getting back to life> Havent been on this sight for a while. I have been really sick. I just > found out that not only do i have sarcoids in my brain butr also in my > lungs now. Just got on some new meds and am able to function on some > days. I have a new Dr at the cleveland clinic sarcoid center. I didnt > knoiw they had one but i am sure glad they do. Wondered if anyh one goes > to their suport group in Euclid. I would like to find out more about it. > I miss chating with all of you and would love to share stories and listen > to other peoples experiences. I want to plan for things to come but i > don't think that is posible. Sarcoids seems to have its own adjenda and > plans and i never know what i will be able to do and what i wont.> Thanks for this place to share and huggs to all> karen>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> 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>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 HI KAREN,I WANT TO SPEAK PEACE TO YOUR SOUL AND SPIRIT.I HAD SARC IN MY LUNGS BEFORE IT MOVED TO MY EYES,BONES(ARTHRITIS) AND BRAIN.I PRAY THAT YOU HAVE THE STRENGTH TO PLAN AND FOLLOW THROUGH ON SOME OF THE THINGS YOU WANT AND NEED TO DO.THE BATTLE WITH THE SARC ISN'T YOURS IT'S THE LORD.PRAY ABOUT IT AND COMMUNICATE WITH THE GROUP WHEN YOU FEEL DOWN,BAD AND WHEN YOU FEEL GOOD.THIS GROUP IS A GREAT COMFORT FOR ME.BE ENCOURAGED.HELENFrom: kap2569 Subject: Getting back to lifeTo: Neurosarcoidosis Date: Saturday, January 9, 2010, 11:44 PM Havent been on this sight for a while. I have been really sick. I just found out that not only do i have sarcoids in my brain butr also in my lungs now. Just got on some new meds and am able to function on some days. I have a new Dr at the cleveland clinic sarcoid center. I didnt knoiw they had one but i am sure glad they do. Wondered if anyh one goes to their suport group in Euclid. I would like to find out more about it. I miss chating with all of you and would love to share stories and listen to other peoples experiences. I want to plan for things to come but i don't think that is posible. Sarcoids seems to have its own adjenda and plans and i never know what i will be able to do and what i wont. Thanks for this place to share and huggs to all karen Quote Link to comment Share on other sites More sharing options...
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