Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 In a message dated 11/30/99 2:40:30 PM Eastern Standard Time, jder@... writes: << If it is disrespectful to go as a tick, to other patients, please let me know. Jeannine >> I like it....but I hope ya aren't gonna dress till you get to Penn Station gonna take the train in??? I am...b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 ps my daughter was sent to an eye dr...she has an eye appt next week...will let you know if the good Dr. is clueless or not b Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 In a message dated 11/30/1999 11:53:54 AM Pacific Standard Time, BratDet@... writes: << I like it....but I hope ya aren't gonna dress till you get to Penn Station gonna take the train in??? I am...b >> LOL! I dare you to ride the train " dressed " ! In NYC no one would probably notice?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 In a message dated 11/30/99 3:40:27 PM EDT, jder@... writes: << Can I go as a tick? Will anyone be offended >> thats pretty neat. It wouldnt offend me in the least. I actually love the idea. Just don't blame us if we beat up on you , or attack you with tweezers! LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 In a message dated 11/30/99 4:19:28 PM EDT, DenimLD@... writes: << In NYC no one would probably notice?? Aint that the truth ! di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Hi IM LISA, DR ORENS NURSE. I AGREE, DRESSING LIKE A TICK WOULD BE A FUN WAY TO GET SOME ATTENTION. BUT BE CAREFUL NO ONE SQUASHES YOU LOL. i WILL BRING A CAMERA. BUT PLEASE IF YOU FEEL COMFORTABLE DOING IT, GO FOR IT. THANKS AND SEE YOU THERE. LISA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Hi Jeannine, I am not able to go to the protest, but if I could I would go as a tick with labels of all the disease it causes us, with LYME as the biggest. You go girl connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Well I finally figured out how to post to this list even with low-lying brain fog today. I get up at 6 a.m. to get 4 kids off to 4 different schools on buses (drive the last), My M-in=Law w/Alz./ off to Daycare on her bus, husband off, and then I am left - the worst shape of all of them - and they depend on me, scary. I have been training them for years to be independent thanks to 5 pints of contaminated blood in 1984 and my fears of an early death. So this lyme terror of premature death leavinig them behind is nothing new to me, just a damn little more poignant as I thought I was finally o.k. after years of anonymous AIDS testing. It is also more poignant as for a variety of reasons I have been everybody's caregiver, foster mother, etc for years and now that I need some care I have this vicious disease which no one can understand and there is no one other than my kids, who do not always understand, for me and I am damned mad about it, let me tell you. I have never ranted, but I feel one coming on so probably should get off. I just asked my husband to go to the protest with me in case I am arrested as I have brain scans the next day and an arrest would be sooooooo inconvenient for my date book. (humor kicking in). He told me he has some important meetings, you know, the printing color on packages and stuff. Not exactly stopping the war or with heads of state but nevertheless important in his corporate culture, while his wife goes down the tubes and he doesn't even know my doctor's name or my medication (easy, easy). As a " glam fashion statement, " I want to go dressed as a tick to the protest. Does anybody mind? I am pissed off. Nobody takes me seriously. Maybe they will take me seriously as a tick. I dressed 2 kids as Black Widows one year, all in black, stuffed long black mens socks attached to their trunks, and to their hands with long transparent fishing line. I gave them top hats. I am trying to figure how how to do the saw-looking tick mouth I saw at Bard Conference. I am now " round " enough to be a tick, thanks to Lyme and 50 pounds weight gain. Can I go as a tick? Will anyone be offended. I am so mad, at everything. I had to give up a part-time job which I liked, creampuff salary, make my own hours, as a watershed administrator as I just can not do it and also creative differences with one individual, stress unbearable with lyme. You all have your challenges and mine, most days are not as bad as some, but today, am mad. If it is o.k., I think a tick would add a little street drama to the protest. It might get a little more notice? Somoeone has suggested someone go as Kermit, with the slogan " Its not easy being (Lyme) green. " But I would like to go as a tick. I am glad it is thought a permit is not necessary. I was referred all over yesterday in several calls. There is an " office of street activity " which I could only reach through several transferred calls each time and no one knew the direct number and it only had a recording and no one ever called me back. If it is disrespectful to go as a tick, to other patients, please let me know. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Hi Jeannine, Your story is so sad...but at least you found us! We'll keep those spirits up! I don't know about anybody else, but I think it would be GREAT if you dressed as a tick. Just think of all the attention it would get for our cause! Wishing my " round " body could be disguised too... Joan LI NY 1st Known Deer Tick Bites & Sx: '85 1st (Neg): '89 Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands: 4/99 Late Neuro-LD Dx: 6/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Dear Jeannie & Members, Please know that I had no clue that I had Lyme most of my life and would never have harmed anyone knowingly by giving what is supposed to be the gift of life, blood donations. But, because our nation's blood supply is NOT checked for Lyme or other tick-borne diseases, people give everyday never knowing they are spreading the Lyme and who knows what else. Please accept my apology as a sister with Lyme, who may even have gotten it through blood transfusions folloing near fatal car wreck 1970. I am pretty down today as the American Express self insured employer I worked for who used Aetna U S Healthcare and my policy was 80/20, major medical, something not seen anymore, but I had less recourse than someone with HMO coverage. My State Senator sent my complaint along with his suggestion to the State Insurance Board. I got a reply back the other day with no inquiry by phone or otherwise or input other than email to the Senator. I was told by the clerk at Ins. Board that due to the federal law ERISA they could not help me. Excuse me, what is the point of thier existence if all they are going to do is rubber stamp what Aetna and American Express want? As far as I'm concerned, they have no reason for existence. Apparently in 1988089 when we had a female gov. who wanted a piece of the pie, many ins. companies pulled out of Texas rather than play patty cake. So we were left with the game players, team members, who would play patty cake, for a piece of the action. Nice huh! Like I didn't know before I contacted the Senator's office who contacted the State Board of Insurance that ERISA existed! Please, spare me. I don't fault the lone Senator, but I do fault the great state of Texas for taking a piece of the pie that could be used to provide the necessary medical care I need instead of to line other's pockets. Vent over for moment. Wishing us all health and freedom from pain, both physical and emotional - swsftwtx@... jder@... wrote: > I have been training them for years to be independent thanks to 5 pints of > contaminated blood in 1984 and my fears of an early death. So this lyme > terror of premature death leavinig them behind is nothing new to me, just a > damn little more poignant as I thought I was finally o.k. after years of anonymous AIDS testing. It is also more > poignant as for a variety of reasons I have been everybody's caregiver, foster mother, etc for years and now that > I need some care I have this vicious disease which no one can understand and there is no one other than my kids, > who do not > always understand, for me and I am damned mad about it, let me tell you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 For sure, if you also wore a sign stating that you carried Lyme Disease as a constant companion, people would give you wide berth! - DenimLD@... wrote: > From: DenimLD@... > > In a message dated 11/30/1999 11:53:54 AM Pacific Standard Time, > BratDet@... writes: > > << I like it....but I hope ya aren't gonna dress till you get to Penn Station > > gonna take the train in??? > I am...b >> > > LOL! I dare you to ride the train " dressed " ! In NYC no one would probably > notice?? > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Jeannine, I think it would be a great statement if you came as a tick, it sure would be an attention getter. Glad you got the post off to us too....your story is so poignant, many of us have so much to deal with at home, families, children who are ill too. I cannot possibly imagine the fear you had all those years worrying about AIDS, and now you have Lyme disease....what a shame. Personally, I hate the Kermit, Lyme idea, I just hate to think of this disease as funny, and Kermit makes me laugh. Big hugs for you, Marta NJ >From: jder@... > >Well I finally figured out how to post to this list even with low-lying brain fog >today. I get up at 6 a.m. to get 4 kids off to 4 different schools on buses > (drive the last), My M-in=Law w/Alz./ off to Daycare on her bus, husband off, and >then I am left - the worst shape of all of them - and they depend on me, scary. > >I have been training them for years to be independent thanks to 5 pints of >contaminated blood in 1984 and my fears of an early death. So this lyme >terror of premature death leavinig them behind is nothing new to me, just a >damn little more poignant as I thought I was finally o.k. after years of anonymous >AIDS testing. It is also more poignant as for a variety of reasons I have >been everybody's caregiver, foster mother, etc for years and now that I need >some care I have this vicious disease which no one can understand and there is >no one other than my kids, who do not always understand, for me and I am >damned mad about it, let me tell you. > >I have never ranted, but I feel one coming on so probably should get off. >I just asked my husband to go to the protest with me in case I am arrested as >I have brain scans the next day and an arrest would be sooooooo inconvenient >for my date book. (humor kicking in). He told me he has some >important meetings, you know, the printing color on packages and stuff. Not >exactly stopping the war or with heads of state but nevertheless important >in his corporate culture, while his wife goes down the tubes and he doesn't >even know my doctor's name or my medication (easy, easy). > >As a " glam fashion statement, " I want to go dressed as a tick to the protest. > Does anybody mind? > >I am pissed off. Nobody takes me seriously. Maybe they will take me seriously >as a tick. I dressed 2 kids as Black Widows one year, all in black, stuffed >long black mens socks attached to their trunks, and to their hands with long >transparent fishing line. I gave them top hats. I am trying to figure how how >to do the saw-looking tick mouth I saw at Bard Conference. I am now " round " > enough to be a tick, thanks to Lyme and 50 pounds weight gain. > >Can I go as a tick? Will anyone be offended. I am so mad, at everything. >I had to give up a part-time job which I liked, creampuff salary, make my own >hours, as a watershed administrator as I just can not do it and also creative >differences with one individual, stress unbearable with lyme. You all have >your challenges and mine, most days are not as bad as some, but today, am mad. > >If it is o.k., I think a tick would add a little street drama to the protest. >It might get a little more notice? > >Somoeone has suggested someone go as Kermit, with the slogan " Its not easy being >(Lyme) green. " But I would like to go as a tick. I am glad it is thought a >permit is not necessary. I was referred all over yesterday in several calls. >There is an " office of street activity " which I could only reach through several >transferred calls each time and no one knew the direct number and it only >had a recording and no one ever called me back. > >If it is disrespectful to go as a tick, to other patients, please let me know. > >Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Has anyone checked out this site? Its one person's web page all about his/her fight with Lyme Disease, and explains ERISA very well. I think (haven't read it for a while) there are suggestions and examples how to fight it. But its an old law, and I don't think there is much chance in changing it. But still this site is pretty informative. Vicki, Md http://www.angelfire.com/biz/romarkaraoke/ >From: <swsftwtx@...> > >Dear Jeannie & Members, > I was told by the clerk at Ins. Board >that due to the federal law ERISA they could not >help me. Excuse me, what is the point of thier >existence if all they are going to do is rubber stamp >what Aetna and American Express want? As far >as I'm concerned, they have no reason for existence. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 i would love to see u as a tick....go for it i say Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 may be i could get some horns and come as " steere " or a weasel suit and come as sigal??????? Reid Quote Link to comment Share on other sites More sharing options...
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