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Post by sadsack on Feb 21, 2009 15:05:01 GMT -5
Someone on another board posted that he called Dr. Staninger to see about becoming a patient. She told him (according to the poster) that she is accepting very few new patients, only ones that she can see at least once, and who have a local doctor he or she can coordinate with.
The reason she gave is that SHE IS WRITING A BOOK ON MORGELLONS THAT WILL INCLUDE PROTOCOLS, ETC.
Does anyone know anything about this? I think it is very exciting and am so looking forward to it.
anewday
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Post by ccooks2 on Feb 24, 2009 13:21:44 GMT -5
Hi anewday. Haven't heard about that, but how exciting, indeed. A friend, two days ago, did advise me to google Joni Mitchell and Morgellons--looks like Joni admits to have this and being presently treated for it, though I doubt that is truly possible. But how good it would be for us little people if famous people with the same start admitting to having it too, and perhaps advocating. Just thought I'd mention it to you, since I see nothing about Joni on here yet.
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Post by sadsack on Mar 4, 2009 22:25:19 GMT -5
ccooks2 - It is true. She made the information available in an interview with Billboard Magazine. I'm sure it was well thought out; the interview was about oe of her projects, and it wasn't until the end where it says she is being treated for Morgellons, and all her work is being put aside for the time being because of it. There are more out there who could come forward, but it is easy to see why they would be afraid to. I hope they get the courage and go for it. It helps so, so many just to be validated that way. My brother has not really believed me for a year and a half (though he saw me covered with lesions, too sick to eat, and brought to an appt with an Infectious Disease doc. Just couldn't bring himself to believe it. Then I sent him the article...and he said something like "Poor Joni...after all that YOU went through" YAY!!! anewday
PS - the info has worked it's way into her Wiki bio.
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Post by ccooks2 on Mar 20, 2009 5:57:28 GMT -5
Hello again, Anewday. Well, several weeks have passed since the news about Joni Mitchell and Morgellons. I don't think that I'm imagining what I've noticed since then: a drastic increase in the volume of serious Morgellons discussion and articles and, even better, a drastic change in the nature of those discussions and articles: it's as if the stunned world suddenly now believes us. One new article that I was very pleased to recently find, "Morgellons: Terrifying New Disease Reaching Pandemic Status," is precisely what we need more of. That one minor, passing Morgellons comment in that Billboard article about Joni could do as much as I think it's actually done: wow! Somehow, I'll be sending Joni a great big thank you, and for more reasons than one.
Joni's news, which has given Morgellons the credibility boost that we desperately needed, also happened to come at an especially, even crucially, good time for me. During the last week of January, I had an innocuous, or so I thought, girl chat about beauty salons with a new colleague--we are both new this year to our Middle Eastern place of employment. Anyway, she got talking about pedicures and highly recommended that I get one, when she learned I've never had one, because they're "better than an orgasm." Well, at that point I figured I could trust her enough to explain why I can allow no one to work on any of my nails. She asked, I answered, going into certain details like Dr. Staninger's studies and nanotechnology findings. My colleague seemed justifiably shocked, since she'd never heard of this, but empathetic--she even wrote down the name Morgellons, saying that she'd look it up on the net over the weekend. End of chat, and off I went to work, never giving it another thought. Well, three days later I suddenly found myself in a crazy Kafkaesque world, which I refer to as my torturous month-long Medieval nightmare, with my sanity suddenly very seriously doubted and my new job and life that I love so much in serious jeopardy: the witch reported me to my immediate boss as frighteningly insane, and an apparent danger to myself and others! In fact, she lied, concocted a weird story about how I'd said that the Canadian government had put microchips under my skin to track my every movement and that I'm literally ripping off my flesh trying to dig out the microchips so that I can no longer be monitored!!! She must have said/invented much more, but this is the only thing that I know for certain that she said, because it, specifically, is what led to my nightmare. My boss told her to leave the issue with him, that he'd look into it, but she couldn't wait to have me dealt with--no, she ran to another colleague, the only other known troublemaker in our department, and they called in the company nurse. Whatever the two of them told her, besides the microchip story, must have been really juicy and terrifying, because the nurse was apparently trembling in fear of the very idea of me and immediately called the president to warn him about me. He, in turn, called the vice-president who called my immediate boss to have me "dealt with" pronto. To make a very long story short, even though nothing in my demeanour, behaviour, performance, or known personality justified any of this being taken seriously, it was. After all, I'm new here and the bottom line, according to my boss, is that he really doesn't know me, which he doesn't. He therefore informed me that the new condition of my continued employment was that I submit to psychiatric and medical evaluations by company-appointed doctors, with full disclosure to my employers, which I of course willingly submitted to but nonetheless resented having to submit to, since I had to do so only because of lies told by someone who's likely much crazier than she made me out to be, someone new like me whom my boss also doesn't really know. Getting the medical appointments, however, took time--two weeks for the shrink and three for the generalist--so my entire month of February was lived in fear, outrage, shock, horror, anger, impotence, creeped-outness, sadness, depression, frustration, desperation, you name it, along with high blood pressure, a loss of appetite, and an inability to concentrate on my work, though I never missed a day. My session with the psychologist was bizarre, almost entirely focussed on detecting whether or not I might want to hurt others, but she concluded what everyone who knows me knows: that I'm a nice, normal, sane woman. As for the generalist--wow--for the first time ever I was able to have a two-way conversation with a doctor who is very knowledgeable about Morgellons and the controversy, as she put it, and who believes that it is a real condition that will one day be understood and medically acknowledged. She, in fact, likened it to other once controversial but now medically accepted conditions like fibromyalgia: wow. She saw no need for tests since, as we both know, tests will reveal nothing. Even better, she noted that unfortunately people misjudge others like me with unrecognized conditions, and she apologized for my having to go through all this. Wow, wow, wow. To relate this back to Joni Mitchell, my ex emailed me that news the day after my visit with the psychologist, the same day that I'd be taking the bill for the visit to my boss, so I printed a copy of the article and gave it to him along with the bill that I refused to pay for, but which my company thought that I should pay for! Talk about adding insult to injury. Since my boss is American and my age, 50, he of course knows who Joni is, so it was my pleasure to hand him the printout and say that, while they here haven't heard of Morgellons, it is nonetheless something that we do know about back home. So Joni gave not only Morgellons credibility, but me as well. And if my new doctor hadn't heard of Morgellons prior to having to learn about it because of me, well, she thankfully learned about it AFTER Joni made the news and changed the level of discussion. Anyway, a week and a half ago, finally, the medical reports came in: I am sane and harmless, and I can keep my new life and job. Ahhhhhhhh. Talk about hard-earned vindication, though! While I deserved none of this, I must say that many good things came out of it, like finding a Morgellons-receptive doctor here, discovering the full support of my other colleagues who have come to know me well enough in 5 months to know the absurdity of my crazy colleague's allegations and who streamed into my boss' office for two days in outrage, etc. to say that my colleague, not I, is the crazy one, and in fact solidifying my new friendships. Apparently, there were supposed to be two parts to my investigation: first me, then her. I'm waiting. If my nightmare simply gets swept under the proverbial carpet, then MY "work" on this isn't done, not by a long-shot. I will not allow this to happen to anyone else here, and she will go after someone else, eventually--I was not the first colleague that she's reported as "weird." I'm just the only one that got taken seriously because she took her allegations outside of our department. As an endnote, I did have a long talk with my crazy colleague, once I was told that my job here was secure, mainly to break the ice and to put an end to the creepiness at work with her there, avoiding me, and us not talking. That was a whole other bizzarely interesting conversation, during which I of course took the opportunity to confront and question her about certain specifics. She either denied/lied or didn't answer my very pointed questions. Her bottom line is that she did all that she did, which she ackowledges as a serious error in judgement, because she "cares" about me: I told her to never care about me again. I further asked her if she ever did look up Morgellons on the net: no, of course not. She ran with her ignorance and fear, despite the fact that she has a Ph.D. and is 45 years old, old enough to know far better. The end result of our conversation: she thanked me for teaching her this very valuable lesson about the evils of gossip. Her final comment was that she'd be going home to do good karma--good karma for only herself, no doubt. Yeesh. My only hope is that karma finds her, as it should and will. Anyway, all is finally well with me, and will only get better. Moreover, I've learned the value of unyielding strength, of keeping your head held high no matter what, and of not giving in to the negatives no matter how negative. I advise you all to hang onto the same, because that is how we can have hope and prevail, maybe even one day find ourselves cured: unashamed, dignified pride and conviction in what we know to be true, no matter how frightening that may be to those who don't. One of my new colleagues, early on in my Medieval nightamere, told me that I'm their shining beacon of strength, something to aspire to, since she felt that no one else would have kept going into work as I did, for the entire torturous month. And she was no doubt right. That's what we need to do, people, all of us.
So take care, and be strong, ccooks2
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Post by crystalriver on Mar 20, 2009 11:26:31 GMT -5
Hi ccooks,
Message on the personals for you--the story you wrote gave me an idea but I seek permission.
Many Blessings, CrystalRiver
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