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Post by beckybailey on Mar 2, 2007 15:56:17 GMT -5
No one needs to spend money flying anywhere, if we all show up to our state capital, or whatever is closest and protest on the SAME DAY. The news would be everywhere, especially when they find out there are protests all over the country. We could have some of the same chants, same posters, etc. so they will know it was an organized effort. MARCH IN MARCH! No time to waste.
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Post by heyjewde on Mar 4, 2007 11:48:13 GMT -5
ho-yea!!!i've been ready for a year--(except for the month i just spent on hell's front porch!!--think i'm on my way back home -in control-now tho and what great timing!!!...got so excited i skipped 2 pgs to get to respond!!!--whole lot of catching up to do--and just glad to be able to!
so....i'm ready for a march in march!! and i think a monday is a good day to start things...being unencumbered and not looking forward to another az summer,i might be sitting on their front door step for a month or however long it takes!!!finances suck but that's the norm--so no problem...i'm sure there are shelters in atlanta-aren't there?--boy-mass quantities of morgies converging on atlanta shelters and transit stations and parks should get SOMEONE'S attention--one would think....
becky--that kind of protest would work well--if only our numbers were greater--a handful of people are so easily dismissedby those who's attention we would get--remember it's those people who are maintaining that they are totally oblivious to this whole issue--it's THOSE people who have labelled us delusional,seriously mentally ill,or drug abusers(evidenced by the lesions -common to tweekers and junkies...) ya know,the REAL bummer is that here in phx, over half of the psych community's population ARE morgies ...but being unaware that the physical maladies they experience are real and shared by others-globally-they've been brolen and convinced to accept the SMI diagnosis they've been labelled with...(and the doctors know very well what's what--it's just a money making industry) it's been over 5 yrs now that i've been affilliated with these people-only a little over 2 yrs that i found MRF(gratefully)and only about a year that i finally got the balls to start speaking up to the so called professionals----and speaking out to fellow members letting them know that we are all a part af a much bigger picture--unclear as it may be...on a personal level i'm just beginning o get the acceptance of the people in charge--but that's just in my center (clinic)---in a public arena,the few of us that are here would just be taken off to the "hospital" --and i've already HAD a vacation at desert vista behavioral health resort and spa(ha ha!!!)
sorry if i'm ramblin'---just so glad to be back-missed you all--and i'm jazzed about an atlanta trip--business trip---there's work to be done and i'm definaterly itchin to get back to work!
later jude
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Post by heyjewde on Mar 7, 2007 9:27:44 GMT -5
computer's been down for 2 days(morg-gremlins strike again!) thought this was sent already but not so!!! ...and i'm still way out of sorts...it's a long trip back from hell...sorry and thx for patience...jude
just went back and read pg 2
bananny and life---make it to phoenix and we'll hitch----that's probably how i'll get there if the cost of transportation is not within my ability
rs--i dont think there's anything to worry about re: the law as long as one is peaceful and doesn't block normal flow of traffic or sidewalks...does anyone know how big the offices of CDC are??--like are they large enough to have their own building or are they in a building with other govt organizationalso wondering if the building is a public one or is it secured??my thoughts were that if it is public,then it's not against the law to enter with the purpose in mind being to obtain information about or assistance with a symptoms that seem to confound the average doctor. so it's a fact finding-or help/ information seeking mission,right?--so no problem--unless there were 500 of us and they take issue with the size of the crowd...which is still no problem--some of us just have to wait outside--and talk to the passers by -one on one about our dilema -until it's out turn to go inside...could take quite a while if there are a lot of us there!!! if the building is secured then it turns into a sit in and as long as thru-ways are not blocked and all is peaceful they can't really arrest someone for standing or sitting in fornt of a building--especially if we deny that we came there together as a group(!!!)what a coincidence that bunches of us showed up there looking for help ...daily...for many days...(!!!)they're gonna arrest us because of coincidence?i sincerely think not and believe that a lot depends on the manor (manner?) in which we present ourselves.
quite frankly i would have no problem going to jail on this issue---my(our)human rights are being violatedas long as we are sick and in pain and are seeking medical attention and continue to have doors slammed in our faces by the doctors who took an oath to help us. is this not genocide(sp?) i would gladly go to jail in defense of my right to seek help...it would also be 3 hots and a cot(!)solving the housing issue!!===but all things considered,they might want to think twice before they risk their own health by bringing us into their environment!!!
ooohhhhh----I AM SOOOOO READY!!
jude
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Post by ppy18 on Mar 14, 2007 0:11:58 GMT -5
sorry i have been out of the loop. took a bad turn and just now getting back on my feet. i know that few will actually be able to make the trip here to Atlanta, so organizing protest at each state capitol on the designated date would work to our benefit as well. i can get at least 100 morgies and supporters to protest at the cdc. how many could we get to show in each state is questionable. it doesn't have to be just morgies, friends and family can help make a strong impact. any ideas about how we could organize this effort?
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Post by microdot on Mar 14, 2007 20:08:26 GMT -5
How about the Crawford technique? People are using it and getting attention. It would save on hotel exposure, and bills, and if they can do it so can we! www.nytimes.com/2007/03/13/washington/13pelosi.html?_r=2&oref=slogin&oref=sloginMarch in March and CAMP OUT until….. the CDC makes a public statement that they will finally do something other than stall. Hunger strike anyone??? Could work. May I suggest the focus remains on one or two areas of the country instead of each state. The numbers will get the medias attention, we don’t have enough people in one state that are organized enough or willing to participate in this type of involvement , yet. Poster slogan possibilities: “Please tell me if I am contagious or not already!” “Our kids attend the same school. Are you sure it’s not contagious?” “Morgellons makes AIDS look like a walk in the park!” “Got Fibers?” “The silent epidemic is no longer silent!” “It’s not lint azzwhole!” “We demand the CDC do their job!” “Is anyone counting our dead other than us?” “Denial is infecting our country” “Forsaken by the Medical community” “ I am being refused medical treatment for Morgellons/Fiber Disease” “HELP!” “God Help Us All” microdot
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Post by lydski on Mar 14, 2007 21:41:45 GMT -5
I tend to agree with microdot on the numbers will get the media attention. Maybe some could agree on another area besides Atlanta to meet and march (of course simutaneoulsy with the march at the cdc). I also think we really really.. REALLY... should go ahead with this ASAP. Maybe it will be our LAST REQUEST for some help and answers from the cdc. Afterall it is their place to come through and help the united states. You'd think they would put their own country and people first.
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Post by microdot on Mar 15, 2007 9:29:18 GMT -5
Thank you lydski. Don’t you also agree that only one day in Atlanta may not be enough? I mean think about it, if we plan a one day protest then the CDC will assume that we are just going to go away after one day. I have been thinking and we may not even have to camp out or anything like that because we have something else going for us, this crap is contagious and we need to start to use this fact to our advantage! I feel it is vital that this march represent the beginning of something much, much bigger that refuses to go away until they finally begin to do their jobs. I suggest that on the day of protest we simultaneously launch a snail mail campaign to have sufferers send samples in the mail directly to the CDC EVERY STINKIN DAY they continue to stall or pacify us. What would happen if the CDC suddenly became bombarded with thousands of letters daily/weekly from all over the world containing samples from thousands of morgies? This would serve to provide a voice for sufferers that would be unable to attend the march, it would show the CDC that we are not going to just go away after one day, and it would allow us to utilize that ONE day protest to its maximum potential by being representave of the things to follow. That one day is only the beginning! I think this idea could have great potential. How many letters containing samples to send per day or week is up to the individual, it’s inexpensive, and the samples themselves are disturbing to look at so I think it would be fair to say this could be very impactual! So, how long do we need to organize this? Should we wait or go ahead? I say do it ASAP! Realistically we need two weeks to make travel arrangements to get the best air fare or bus fair. How soon can we get donations together? I suggest we send contributions directly to ppy as to bypass red tape, extra work and expedite possible delays. Some folks may need to request a day or two off from work. How much time in advance do they need to make this request from their employer? After taking all of the above into consideration I think that the quickest we can conceivably get this thing set for is approximately three weeks. After viewing my calendar three weeks would put us at the week of April 9th –the 13th. What day do you guys want to do this? The 13th in April falls on a Friday ;D. This is a very symbolic day and could be a very unlucky and memorable one for the CDC this year! What do you guys say? I would love to have 4/13 as the set day to do this!!!! Friday the 13th is very doable! Comments anyone? microdot
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Post by lydski on Mar 15, 2007 10:17:06 GMT -5
My son was born on Fri the 13th. So I have always considered this day a 'GOOD' luck day for ME. So far so good...
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Post by junebook on Mar 20, 2007 20:22:29 GMT -5
Don't know if anyone remembers or not, but a couple of months ago, I spoke of a documentary about three sisters that I'd watched, and how moving it was. Jenifer (35) was diagnosed with Lou Gehrig's disease in 1997. Doctor's told her nothing could be done She disagreed. Along with her two sisters, Meredith, a fashion buyer, and Valerie, an advertising executive, Jenifer started a campaign that has revolutionized ALS research and serves as a model for how outsiders can force radical change in the scientific establishment. The monies they had to raise blew me away This month, Jenifer's memoir, Tales From the Bed: On Living, Dying, and Having It All, which she wrote literally from her bed, hits stores. And an HBO documentary, Three Sisters: Searching for a Cure, airs May 19. Please read the article below, and try to watch the documentary. jcgi.pathfinder.com/fortune/subs/article/0,15114,632579,00.html
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Post by junebook on Mar 20, 2007 20:31:05 GMT -5
By the way, please don't misinterpret my intent. I'm not suggesting for a second that what that family did is what we should attempt to do. I am saying, however, that what that family did, undoubtedly proves a common, age-old saying. "Money Talks."
Junebook
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Post by junebook on Mar 21, 2007 15:07:18 GMT -5
we have something else going for us, this crap is contagious and we need to start to use this fact to our advantage! Microdot ==================================================================
It is contagious? Is that for sure, Microdot? Where did you hear or see this information? Certainly is an added burden for me to carry, that's for sure. Everyone else, too, right? Enough, Lord, enough."
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Post by Roberta Louise on Jul 19, 2007 7:05:37 GMT -5
Hi there everyone once again I am encroaching on some one elses post. I am sorry it is the only way I can work out to post a message. Today I had two friends who visit me frequently two or three times a week and they ARE BOTH SICK WITH AN INFECTION My case worker Averil has a badly infected leg that she thought was a bite or sting she is off work for a week and the Doctor said that she was lucky that she wasn't put in hospital and she is a trained nurse. The second friend Terry came around yesterday with a terribly infected finger. It was soooooo bad that he had to cut his wedding ring off with a cutter and his finger looks terrible!!!!!!!!! And I SAW THE BLACK SPECKS IN HIS INFECTED FINGER!!!!!!! I didn't say anything to him as I know that he would think that I was bonkers, but I scraped three out with my finger nail pretending I was massaging it. And I have just recalled that another very very good friend of mine Rebecca who used to visit me everyday about nine months ago she came out in this very very nasty rash. I took one look at it and saw the black specks and was horrified. I didn't say anything to Rebecca I didn't want to upset her. She has now moved out of Auckland New Zealand and moved further South. Well Rebecca rang me the other night and said that she had come out in this terrible rash again!!!!!!! I never ever believed that this was contagious because when my daughter, her partner and my husband were living with me they never showed any signs of this "thing" Now I do believe that it is contagious and I honestly and truely believe that it takes a long period of time for this thing to invade the body and breed!!!!!!!! But it does and it can take up to one year to present it self. I have a habit (which now I think is very very bad) Of hugging people and kissing them on the cheek! Which I won't do anymore and all these people were in close contact with my dog Kyra. Now this is too much of a coincidence and I have to be a bit stand offish. I think that we can all learn from this me most of all and I can report back to you what happens to people that I am in contact with. And that brings me back to something else that has just come to mind. My daughter has been sick for a year. With migraine headaches fevers itches lethargy painful back you name it and (Christine) my daughter has had it over the last year. I didn't think of this "thing" i just thought she was stressed and tired. She is in a managerial position and has had toooo much time off work because of illness!!!!!!!!! and I always hug and kiss Christine. She is my only daughter and the love of my life!!!!!!!!!! and now I think that she has been affected by this, Christine always pats and plays with Kyra when she comes around to see us. This is starting to frighten me that all who come in contact with me get sick!!!!!!!!!! Quite a few times on another board I said that I didn't think that this was contagious AND I WAS VERY VERY WRONG!!!!!!! And I am soooo very very sorry for misleading people!!!!! I don't know how to rectify this monumental mistake!!!! All I can think of is that this Administration contact Morgellons and both boards to make some sort of statement that you think that this is contagious and can take up to one year to manifest itself, on the other hand it can appear in two weeks like it did with me when I got Ayla one of my other dogs from the Humane Society. Ayla was in a terrible condition when she came to me, bald patches dull coat itching and just a wreck of a dog. I bathed and cleaned her up took her to the Vet for some shots and she really improved but two weeks after she came to live with me. I got the wretched itches and I went through HELL!!! In the end I had to give up work But my three best friends Rita, Gloria and Florence will still tell you that my itches started a couple of weeks after Ayla came to live with me. I think that, that says a lot!!!! But my Doctor and Vet didn't believe me. What was the verdict? DOP!!!!!! Hope I haven't bored you all. It is soooo good to know that you are all out there. Much love to all. Roberta Louise
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Post by Roberta Louise on Jul 28, 2007 1:51:22 GMT -5
Dear prevenge please help me my computer is playing up but has started up again but now I cann't get on to the ymebusters board until I log in or register. Before I just clicked home and hey Roberta Louise came up and I was a full member with three stars. Even tho I don't know what they mean. I am sosssss very very down. I cann't send any emails so I cann't contact Patti, Ant or Sidney or anyone else for that matter. My daughter has ben rushed to hospital but is okay but that and then loosing access to tis board has just shattered me and I truely feel like topping my self but wont today or tmorrrow. Can you please give this message to Patti,Sidney and Ant and ask them if the can help me get back on the board. I still find it terribly hard to find a reply button. Hope all is going well with you prevenge. Love and best wishes. Roberta Louise
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Post by Roberta Louise on Jul 28, 2007 2:18:40 GMT -5
R4W2H9LDear Patti, SIDNEY AND Ant i AM HAVING SOOOOOO MUCH TROUBLE WITH THE COMPUTER AND GETTING ON TO THE BOARD, IT KEEPS WANTING ME TO LOGIN OR REGISTER WHICH IN THE PAST AS SOON AS i HIT HOME IT SAYS hEY rOBERTA lOUISE ETC ETC i AM A NERVOUS WRECK MY DAUGHTER HAS BEEN RUSHED TO HOSPITL THANK tHE LORD THAT SHE IS OKAY but i am not!!!!!!! fOR THE FIRST TIME IN THREE YEARS i FEEL LIKE TOPPING MYSELF. i JUST CAN NOT HANDLE PROBLEMS ANYM ORE i HAVE JUST HAD TOOOOO MANY PROBLEMS AND i AM WORN OUT. i HAVE BEEN TRYING SOOOO HARD FOR HOURS AND HOURS THE LAST TWO DAYS TO GET ON TO THE BOARD. i CANN'T SEND YOU EMAILS OR RECEIVE EMAILS. tHE ONLY CONTACT I HAVE IS THROUGH LYMEBUSTERS MESSAGE BOARD i APOLOGISE SOO MUCH FOR THE CAPIALS i DIDN'T REALIZE THAT IT WAS HAPPENING i WAS looking AT THE KEY BOARD. lOVE AND BEST WISHES TO ALL. I could do with a few prayers if anyone has the time. Much love again. Roberta Louise
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Post by robertalouise26 on Jul 29, 2007 2:45:54 GMT -5
Dear Patti sorry to encroach into someone elses territory but before3 all this upset with thisd d d d m computer I was a full member with three stars. Can it be changed back? It was just a boost to my ego I guess. I AM MOST THANKFUL THAT I AM BACK ON THE BOAARD. Much much love to you Sidney and Ant. Roberta.
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Post by robertalouise26 on Jul 29, 2007 2:51:45 GMT -5
To Junebook you are so right about this being infectious and it can be used to our advantage with the right people handling the information and putting it out to the public. I made a very very big mistake a few years ago thinking that it wasn't contagious and I was proved very very wrong, but it can take from two weeks to two years to really present itself in the human body. Good thinking. Thank you for your post. Best wishes. Roberta.
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Post by roberta26 on Jul 29, 2007 4:36:48 GMT -5
Hi everyone I am soooo very very sorry to be such a nuisance but know after everythng has changed user name password etc the computer has gone back to guest and I cann't get anywhere. I am really exhausted and disappointed. I cannot afford to pay anymore money for the man to come back and look at the computer for a third time. Is there anyway Patti Sidney Ant that yu can help me from your end// Love and very best wishes. Roberta.
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Post by roberta Louise on Jul 29, 2007 4:52:54 GMT -5
Dearest Pati Sidney and Ant you must be sick to death of me. I am absoluely worn out sitting at the computer trying to get back on the board I hae paid Derek who came down twice this weekend to fix the computer $40 and I am out of money so cann't get hi back again. For a few hours lymebusters accepted my new user name roberta26 and pass word kyra26 now it won't accept it and I just don't know what to do. Before it was so easy I just went to google and typed in lymeboard message board and then clicked home and the board said hey roberta26 and everything was okay. Before that I was Roberta Louise as user name and password Kyra26 and I am at my wits end. This board means soooooooo much to me and all you people on it. If you can help me from your end it would be most appreciated I know that Patti and Sidney you have tried and tried to help me and I appreciate yur help sooo much but I am not having much success. Look forward to hearing from you. I think that I can still receive and send emails. Much love and best wishes. Roberta.
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Post by Patti on Jul 29, 2007 10:52:48 GMT -5
Roberta, not to worry, we are going to figure this out. I have been emailing and PMing you but I am thinking for some reason you don't see the complete board functions like we do. You still have my email addresses don't you? Please send me your phone number (I believe it was taken out of that one post) and I will call you, then we will walk through it step by step.....assuming you do not have dial-up internet service? If you can't find my email, please send it to Sid and she will forward. You concentrate on taking care of your daughter and we'll take care of helping with your computer problems. We are going to do all we can to help you. Hugs! Roberta, something just occurred to me........check the internal date on your computer and see if it's current.
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Post by Roberta Louise on Jul 29, 2007 19:03:20 GMT -5
Dear Patti I am absoluely shattered have spent the last 36 hours at the computer. Some times it works and some times it doesn't. I don't care sooo much about emails BUT I DO CARE SOOO MUCH on not being able to get on the lymebusters board. Do you think that the computer is getting confused because Derek (who tried to fix the computer) changed my user name to robbie26. Do yu think that it would be better if I changed both my user name and pass word? To something completely different like chris26 and pass word premier55? . I don't want to rock the boat as the computer is a lot better but how long that will last heavens only knows. I felt SO ISOLATED when I couldn't get on the board and I couldn't email you or Sidney so I lost all contact You must not spend money ringing me Patti my phone number is 09-8466057. I don't know the code for NZ but the operator would be able to tell you. The only thing is that my phone doesn't reach to be able to view the screen at the same time. That is soooo kind of you!!!!!!!! Let us give it one more day and night. I have emailed Derek who came to fix the computer and told him that I will be able to pay him next Tuesday when I get paid if he would come back and look at the computer again. The poor man he must be fed up with me and the computer. I was able to payhim some money and gave him a lovely pair of diamone erings and four packets of biscuittes and a block of choclate that had been given to me. I do like tp pay my way. I am not a sponger Patti. I look forward sooooo much to the day when I can get back on the board for good!!!!! Much much loe Roberta.
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