Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Thtas true. My other half of nine years had the police remove me from his home as he couldnt stand me sick and crazy so he says anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Thanks, I don't know what I would do without him!!!!!!!! At least your husband is on your side..... not all husbands are like that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Other than this group you can count your friends on one hand and have a lot left over!!!!!! Some people are polite and ask how you are but when you try explain the illness they just shut down!!They don't EVEN TRY to understand It just makes me want to scream!!!!!! Sue Dr D, who is doing fine now, tells me being fired not only helped get her out of that bad place quicker, but it also opened her eyes about the true nature of people she thought were her friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Serena, Everything you said is so very true. I'll try to use some of what you said to the next eye roller I meet!! Sue found that the best thing for me to do in social or business situations is to use the proper name for the illness. If I say I got sick from toxic mold, or say CFS or fibromylagia or SBS, I get the pleasure of dealing with responses ranging from, " That's just a phoney illness, " (true story!) to " I don't believe in that " (huh?) to " Yeah, I'm tired, too " (bet me!) to the ever-so subtle Rolling of the Eyes (subtle like you tossed a stink bomb into the room, that is). So, people are rude and sometimes mean. I can't change that.om writes: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 I've found that the best thing for me to do in social or business situations is to use the proper name for the illness. If I say I got sick from toxic mold, or say CFS or fibromylagia or SBS, I get the pleasure of dealing with responses ranging from, " That's just a phoney illness, " (true story!) to " I don't believe in that " (huh?) to " Yeah, I'm tired, too " (bet me!) to the ever-so subtle Rolling of the Eyes (subtle like you tossed a stink bomb into the room, that is). So, people are rude and sometimes mean. I can't change that. OTOH, if I say matter-of factly, " I have mycotoxicosis. There's no cure, but I'm fighting hard and doing the best I can. Don't worry, it's a genetic thing and it's not at all contagious. " The whole social landscape changes. The uninvited judgement and commentary disappears, because the listener hasn't got a clue what I'm talking about. Some people will change the subject rather than risking hearing about something as complicated and nasty-sounding as " mycotoxicosis " . Some people will ask what that is, and I'll give them only an ultra-brief description and stop right there unless more questions are asked. If any doubt is expressed (hardly ever) I just tell them they can google it or I can give them my doctor's number. I'm not snappish about it, but I'm not taking any bull, either. I didn't become a less worthy human being when I got sick. I think I've finally reached a point where I don't feel like I owe any explanations to anyone at all. I didn't ask for this, and I don't have to justify it. This illness makes us reach deep and find out some things about ourselves. On the flip side, it also shows us some things about other people we might rather not have known - especially when it comes to friends and loved ones. That hurts, no getting around it. There isn't any cutesy silver lining in all this that makes that hurt worthwhile. But we can acquire new strengths along the way, and I think for me, the best place to start was to stop trying to justify myself in the eyes of others. No great wisdom there - I finally quit doing from sheer exhaustion. For what I spent energy-wise on this or that blockhead, I could have gotten food or maybe even some clean laundry. Barring dealing with the courts or the insurers, I'm not obligated to go places that are bad for me, eat things I can't digest, attend events that put me in situations that are bad for me, or interact with people who are even more toxic than the mold is. So I don't. I don't have to defend or explain. I don't have time or energy to clean up other people's messes or have those kinds of conversations that are supposedly about one thing, but are really about something else entirely (all married people have had these - you know the drill). So in that sense, I've finally found some new strength out of all the physical weakness. Anyway, that's what's working for me right now. Hope it's of some use. Take care out there! Serena There is no such thing as an anomaly. Recheck your original premise. ...Ayn Rand, paraphrased --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 That is just wrong..........don't worry, I believe in Karma...it will come back to him. That is just SAD!!!!! I am sorry that happened to you. Sincerely, Marcie Gingersnap1964@... wrote: Thtas true. My other half of nine years had the police remove me from his home as he couldnt stand me sick and crazy so he says anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Serena, I am sitting in the library reading your post and crying like a baby. You are fantastic with words. It is what I want to say but my brain does not work as well as yours right now. THANK YOU.......THANK YOU......THANK YOU!!!!! Marcie SERENA EDWARDS <pushcrash@...> wrote: I've found that the best thing for me to do in social or business situations is to use the proper name for the illness. If I say I got sick from toxic mold, or say CFS or fibromylagia or SBS, I get the pleasure of dealing with responses ranging from, " That's just a phoney illness, " (true story!) to " I don't believe in that " (huh?) to " Yeah, I'm tired, too " (bet me!) to the ever-so subtle Rolling of the Eyes (subtle like you tossed a stink bomb into the room, that is). So, people are rude and sometimes mean. I can't change that. OTOH, if I say matter-of factly, " I have mycotoxicosis. There's no cure, but I'm fighting hard and doing the best I can. Don't worry, it's a genetic thing and it's not at all contagious. " The whole social landscape changes. The uninvited judgement and commentary disappears, because the listener hasn't got a clue what I'm talking about. Some people will change the subject rather than risking hearing about something as complicated and nasty-sounding as " mycotoxicosis " . Some people will ask what that is, and I'll give them only an ultra-brief description and stop right there unless more questions are asked. If any doubt is expressed (hardly ever) I just tell them they can google it or I can give them my doctor's number. I'm not snappish about it, but I'm not taking any bull, either. I didn't become a less worthy human being when I got sick. I think I've finally reached a point where I don't feel like I owe any explanations to anyone at all. I didn't ask for this, and I don't have to justify it. This illness makes us reach deep and find out some things about ourselves. On the flip side, it also shows us some things about other people we might rather not have known - especially when it comes to friends and loved ones. That hurts, no getting around it. There isn't any cutesy silver lining in all this that makes that hurt worthwhile. But we can acquire new strengths along the way, and I think for me, the best place to start was to stop trying to justify myself in the eyes of others. No great wisdom there - I finally quit doing from sheer exhaustion. For what I spent energy-wise on this or that blockhead, I could have gotten food or maybe even some clean laundry. Barring dealing with the courts or the insurers, I'm not obligated to go places that are bad for me, eat things I can't digest, attend events that put me in situations that are bad for me, or interact with people who are even more toxic than the mold is. So I don't. I don't have to defend or explain. I don't have time or energy to clean up other people's messes or have those kinds of conversations that are supposedly about one thing, but are really about something else entirely (all married people have had these - you know the drill). So in that sense, I've finally found some new strength out of all the physical weakness. Anyway, that's what's working for me right now. Hope it's of some use. Take care out there! Serena There is no such thing as an anomaly. Recheck your original premise. ...Ayn Rand, paraphrased --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Marcie, you give me a lot of inspiration to keep kicking. I'm the one who should thank you. Sometimes I have words, but not always. When I do, what they say is about what I learn from you and from the others here. Marcie McGovern <marcie1029@...> wrote: Serena, I am sitting in the library reading your post and Serena There is no such thing as an anomaly. Recheck your original premise. ...Ayn Rand, paraphrased --------------------------------- Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 Thank you Marcie...I was scared and upset and devasteated thatr he had me removed from his house and said I belonged in an instsitution. That was at thew beginning and I didnt know what to do aboyut what is wrong with me. After 9 years together. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 Janet, He is just glad I did not witness that.....talk about opening up a can of Whoop A-- on someone. You hang in there...remember, it's his loss! Marcie * my ex-husband divorced me after i was diagnosed with MS in 1989.he said it was not fair to him if i ended up in a wheelchair later in life. like i said...it was his loss! :-) Gingersnap1964@... wrote: Thank you Marcie...I was scared and upset and devasteated thatr he had me removed from his house and said I belonged in an instsitution. That was at thew beginning and I didnt know what to do aboyut what is wrong with me. After 9 years together. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2006 Report Share Posted January 24, 2006 Serena, Have you or any of your relatives experienced any difficulty in getting health or life insurance or finding or retaining employment as a result of 'your genetic illness'? This is an important question. Quote Link to comment Share on other sites More sharing options...
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