Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Dear Toni, Without treatment your disease will become systemic. Neurosarcoidosis can kill you. I will contact my immunologist on Monday (He's back in the office then) and see if I can get some names of good people for you in Brissy. Many relationships can be destroyed with illness. Or they can become closer. Chronic illness takes it's toll regardless of the illness. It is essential that you both understand this is as serious as cancer. Would your spouse/partner be acting this way if you were diagnosed with cancer? There are books that can help you and your partner to cope, but I think a better approach might be to ask your doctor for a referal for you both to see a counsellor who deals with chronic illness. Even the best of us need a little help. I cannot offer help with kids, I am not fortunate to have any but I am sure there are others here who can help there. My love is with you. Aisha > Hi everybody > > I would like to throw a couple of questions to the vast experience of this group if that OK. > I appreciate the honesty of everyone here. > > The first question is: How often is it that without any treatment neurosarcoid goes into remission by itself and how long does it take? > > The second question is: How many relationships have been destroyed by this illness and if you have become a woman alone with kids, how do you cope with just the normal everyday running of the house and bringing up the kids on your own? > > Thank you all > Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Toni, there is a website, www.tenresolutions.org which has some great information on chronic illness & effects on family, including children. Rose in Indiana, USA Re: your expertise sought > Dear Toni, > > Without treatment your disease will become systemic. Neurosarcoidosis > can kill you. I will contact my immunologist on Monday (He's back in > the office then) and see if I can get some names of good people for > you in Brissy. > > Many relationships can be destroyed with illness. Or they can become > closer. Chronic illness takes it's toll regardless of the illness. It > is essential that you both understand this is as serious as cancer. > Would your spouse/partner be acting this way if you were diagnosed > with cancer? There are books that can help you and your partner to > cope, but I think a better approach might be to ask your doctor for a > referal for you both to see a counsellor who deals with chronic > illness. Even the best of us need a little help. > > I cannot offer help with kids, I am not fortunate to have any but I > am sure there are others here who can help there. > > My love is with you. > Aisha > > > > > Hi everybody > > > > I would like to throw a couple of questions to the vast experience > of this group if that OK. > > I appreciate the honesty of everyone here. > > > > The first question is: How often is it that without any treatment > neurosarcoid goes into remission by itself and how long does it take? > > > > The second question is: How many relationships have been destroyed > by this illness and if you have become a woman alone with kids, how > do you cope with just the normal everyday running of the house and > bringing up the kids on your own? > > > > Thank you all > > Toni > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > 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 2, 2004 Report Share Posted January 2, 2004 Faith makes all things possible,Love makes it easy! Janjanbovi@... Powered by Plaxo Want a signature like this? Add me to your address book... Toni, My name is Jan and I have had this illness as far as I know since 1989. The official diagnosis was in early 1990. I was on various levels of steroid treatment from 1990 til 1994 when my sarc went into remission. Granted at the time I only had pulmonary involvement so I can only speak from my opast experience. I went to see many specialist such as pulmonologist and had various test done and I had to stay on the regime I was on which was a maintanance of steroids dose every other day and when I was in a flare I was put on high doses then tapered down. I gained weight, ended up with high blood pressure, my blood sugars bottomed out on me several times cause I was hypoglycemic to begin with. I had gone to a allergist and was tested and started on allergy shots and this improved my breathing over a period of times actually it took almost a year to see real results. Then by 1994 I was in remission from the sarc and was able to come off all my medicine. As a matter of fact after the sarc went into remission the only thing i was worried with was migraines. Then in 2001 the sarc came back with a vegence it attacked my lungs and my whole body and now I see so many doctors it's hard to keep track of them all. But yes my husband got into trouble and I was faced with raising oue 3 girls all alone I didn't have anyone to help me with them, talk about an eye opener. If you'd ever like to talk to me please feel free to e-mail me. I hope I was of some help to you. God bless you. Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Toni, There isn't any info on spontaneous remission with NS. But I'm willing to be one of the lucky ones. The challenge with NS is that it effects so many body functions and organs and hormone function that we end up seeking help-- usually for something that has started to interfer with our "activities of daily living." For me, this meant that I could no longer do my job that required major "multi-tasking skills, problem solving, short-term memory recall, language, speech, eye sight, personality"-- these are the areas of my brain that's involved. I've also developed severe small nerve fiber neuropathy, along with peripheral neuropathy. My lung function has dropped so that I need supplemental oxygen to do anything "exerting." In answer to your question as to how many people loose their partners because of NS- or any other chronic medical condition-- WAY TOO MANY. I know for years, I was ready to let my husband go, so that he could have a life with someone that wasn't sick. He refused to leave. My guilt, my anger, my frustration, my depression, my illness- couldn't allow me to see that I was lovable. Fortunately, thru counselling and proper treatment with anti-depressants, combined with 's ironwill to show me that he wasn't giving up on us-- has made our relationship even stronger. (Yes, I thank God each day for him.) I know that this is so hard on relationships-- everything from the rolls we have in our household, to our personal identity of who we think we are-- are changed when chronic illness comes into play. It's like life becomes a test of everything we've ever known. There are many books on chronic illness- but the one I know helped us tremendously is "BEYOND CHAOS, ONE MAN'S JOURNEY ALONG SIDE HIS CHRONICALLY ILL WIFE." Another is the BUT YOU LOOK GOOD! available thru www.invisibledisabilities.com. These books gave us great insight on how to talk with each other. It makes me so sad when I hear of another person loosing their partner because the partner can't handle the changes of illness. My heart goes out to you. With compassion, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Rose, I checked out that website and it was very very good. It's ten resolutions on living with pain and/or chronic illness and I copied pages for an hour. hugs S.Rose wrote: Toni, there is a website, www.tenresolutions.org which has some greatinformation on chronic illness & effects on family, including children.Rose in Indiana, USA Re: your expertise sought> Dear Toni,>> Without treatment your disease will become systemic. Neurosarcoidosis> can kill you. I will contact my immunologist on Monday (He's back in> the office then) and see if I can get some names of good people for> you in Brissy.>> Many relationships can be destroyed with illness. Or they can become> closer. Chronic illness takes it's toll regardless of the illness. It> is essential that you both understand this is as serious as cancer.> Would your spouse/partner be acting this way if you were diagnosed> with cancer? There are books that can help you and your partner to> cope, but I think a better approach might be to ask your doctor for a> referal for you both to see a counsellor who deals with chronic> illness. Even the best of us need a little help.>> I cannot offer help with kids, I am not fortunate to have any but I> am sure there are others here who can help there.>> My love is with you.> Aisha>>> > > Hi everybody> >> > I would like to throw a couple of questions to the vast experience> of this group if that OK.> > I appreciate the honesty of everyone here.> >> > The first question is: How often is it that without any treatment> neurosarcoid goes into remission by itself and how long does it take?> >> > The second question is: How many relationships have been destroyed> by this illness and if you have become a woman alone with kids, how> do you cope with just the normal everyday running of the house and> bringing up the kids on your own?> >> > Thank you all> > Toni>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://www.elderwyn.com/neurosarcoidosis/chat.php>> 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 2, 2004 Report Share Posted January 2, 2004 Rose, I checked out that website and it was very very good. It's ten resolutions on living with pain and/or chronic illness and I copied pages for an hour. hugs S.Rose wrote: Toni, there is a website, www.tenresolutions.org which has some greatinformation on chronic illness & effects on family, including children.Rose in Indiana, USA Re: your expertise sought> Dear Toni,>> Without treatment your disease will become systemic. Neurosarcoidosis> can kill you. I will contact my immunologist on Monday (He's back in> the office then) and see if I can get some names of good people for> you in Brissy.>> Many relationships can be destroyed with illness. Or they can become> closer. Chronic illness takes it's toll regardless of the illness. It> is essential that you both understand this is as serious as cancer.> Would your spouse/partner be acting this way if you were diagnosed> with cancer? There are books that can help you and your partner to> cope, but I think a better approach might be to ask your doctor for a> referal for you both to see a counsellor who deals with chronic> illness. Even the best of us need a little help.>> I cannot offer help with kids, I am not fortunate to have any but I> am sure there are others here who can help there.>> My love is with you.> Aisha>>> > > Hi everybody> >> > I would like to throw a couple of questions to the vast experience> of this group if that OK.> > I appreciate the honesty of everyone here.> >> > The first question is: How often is it that without any treatment> neurosarcoid goes into remission by itself and how long does it take?> >> > The second question is: How many relationships have been destroyed> by this illness and if you have become a woman alone with kids, how> do you cope with just the normal everyday running of the house and> bringing up the kids on your own?> >> > Thank you all> > Toni>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://www.elderwyn.com/neurosarcoidosis/chat.php>> 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...
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