Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 my name is sophie i am 8 months pregnant, i have neurosarcoidosis, i quit all treatment about 3 some years ago. i been doing great, but now im scared. will i die when this baby is born. does anyone out there know anything on this subject. i have this since2004 this destryoyed my mind body and marriage, so i just quit treatment. mind over matter has worked for me, i have 2 b strong 4 my kids but now a new baby will be here in 3 weeks. my mind is begining 2 b week.any one out there i just need 2 face this head on i need 2 know the truth Subject: Check inTo: neurosarcoidosis Date: Monday, December 1, 2008, 3:44 AM So how is everyone doing? Did ya all survive Thanksgiving weekend? I was able to go to Chico and spend the day with my sisters and my parents. It is weird with the extended, extended-- kids now have their own spouses, families and it's making it harder to get it all together. Christmas will also be interesting, as we're going to wait until the 28th or so to celebrate so that the gang from Oregon can come down. My mom is showing more and more signs of dementia, and my dad has Parkinsons which has really progressed this last year. It is so hard to watch him go from being so on top of everything, to having to explain all of the choices and such that he has with his Medicare and insurance options. They just dont' get it anymore. To top it off, he's so hard of hearing (aids won't work on his loss) so he only catches half of what is said. Mom never understood any of it, and she really doesn't get it now.. So we just keep loving them, appreciating the time we have left. I do hope that everyone has paced themselves, and that the hangover fatigue isn't too severe. Here's hoping to hear from you all, share your stories and let us know how you are doing. Hugs, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 HI Sophie, I"m so glad you found us. NO--YOU'RE NOT GOING TO DIE!!!! Sarc is a challenging disease, and yet many people have it for a very long time--- and learn to adjust to it. You will need to pace yourself, and I know that is going to be hard with a new baby. But get as much rest as possible. Listen to your body, and learn to ask for help. Mind over matter is great, so don't go putting these thoughts of dying into the picture-- you need to focus on the beauty and joy that is coming your way! If you ended up needing treatment of some kind, you may have to cut short on breast feeding your baby, but then again-- many have had good success iwht pregnancy and sarc going into remission-- so maybe it's a hormone thing our wonderful bodies can do! You can't pass the sarc on to your baby, so don't worry about that. So much of this disease is learning to pace- rest when needed, and getting proper nutrition and hydration. Know we're here for you, and we'll be looking forward to having a new mom in the group!! (I'm old enough to be a grandma, but my son thinks he needs to be in love first--LOL!) Blessings to you, Tracie NS Co-owner/moderator Subject: Check inTo: neurosarcoidosis Date: Monday, December 1, 2008, 3:44 AM So how is everyone doing? Did ya all survive Thanksgiving weekend? I was able to go to Chico and spend the day with my sisters and my parents. It is weird with the extended, extended-- kids now have their own spouses, families and it's making it harder to get it all together. Christmas will also be interesting, as we're going to wait until the 28th or so to celebrate so that the gang from Oregon can come down. My mom is showing more and more signs of dementia, and my dad has Parkinsons which has really progressed this last year. It is so hard to watch him go from being so on top of everything, to having to explain all of the choices and such that he has with his Medicare and insurance options. They just dont' get it anymore. To top it off, he's so hard of hearing (aids won't work on his loss) so he only catches half of what is said. Mom never understood any of it, and she really doesn't get it now.. So we just keep loving them, appreciating the time we have left. I do hope that everyone has paced themselves, and that the hangover fatigue isn't too severe. Here's hoping to hear from you all, share your stories and let us know how you are doing. Hugs, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 doing ok,dealing with the death of my childhood friend.who died of brain cancer two weeks ago.dealing with another friend that had to be place in a nursing home due to her illness from brain cancer and several strokes.having flare up with my sarcoid arthritis.hope all is well despite our disease. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 nHELEN----- Forwarded Message ----To: Neurosarcoidosis Sent: Sun, November 8, 2009 7:52:58 AMSubject: check in doing ok,dealing with the death of my childhood friend.who died of brain cancer two weeks ago.dealing with another friend that had to be place in a nursing home due to her illness from brain cancer and several strokes.having flare up with my sarcoid arthritis.hope all is well despite our disease. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Helen, My heart goes out to you. I know how hard it is to lose close friends, and maintain balance so that you can take care of yourself. Remember to be kind to yourself-- Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sun, November 8, 2009 12:18:09 PMSubject: Fw: check in n HELEN ----- Forwarded Message ----To: Neurosarcoidosis Sent: Sun, November 8, 2009 7:52:58 AMSubject: check in doing ok,dealing with the death of my childhood friend.who died of brain cancer two weeks ago.dealing with another friend that had to be place in a nursing home due to her illness from brain cancer and several strokes.having flare up with my sarcoid arthritis.hope all is well despite our disease. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 THANK YOU TRACIE FOR YOUR KIND WORDS.CONTINUE TO TAKE CARE OF YOUR SELF ALSO. HELENTo: Neurosarcoidosis Sent: Sun, November 8, 2009 8:11:17 PMSubject: Re: Fw: check in Helen, My heart goes out to you. I know how hard it is to lose close friends, and maintain balance so that you can take care of yourself. Remember to be kind to yourself-- Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sun, November 8, 2009 12:18:09 PMSubject: Fw: check in n HELEN ----- Forwarded Message ----To: Neurosarcoidosis Sent: Sun, November 8, 2009 7:52:58 AMSubject: check in doing ok,dealing with the death of my childhood friend.who died of brain cancer two weeks ago.dealing with another friend that had to be place in a nursing home due to her illness from brain cancer and several strokes.having flare up with my sarcoid arthritis.hope all is well despite our disease. HELEN Quote Link to comment Share on other sites More sharing options...
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