Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 This nurse just makes me feel ill!! When my kids get on there feet and myself....I am going to hit every school and help empower these school nurses about the truth on what Lyme n Co does to these children and there families .... Just pisses me off!! Like things are not hard enough on us!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 :0) The solidarity is so incredibly strengthening and comforting. Meanwhile, my daughter is trying gabapentin (again) and Cymbalta to try to control the pain. Hope everyone has a great weekend. I am planning the downfall of the nurse. ha! Natasha ________________________________ From: Diane Biel <dkbmama@...> Sent: Thu, October 7, 2010 5:34:35 PM Subject: Re: [ ] Re: what to expect? This nurse just makes me feel ill!! When my kids get on there feet and myself....I am going to hit every school and help empower these school nurses about the truth on what Lyme n Co does to these children and there families .... Just pisses me off!! Like things are not hard enough on us!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Natasha, Where do you live? What did your LLMD tell the nurse? This is sounding like my school district. On Thu, Oct 7, 2010 at 1:44 PM, Natasha Moiseyev <nmoiseyev@...>wrote: > > > My children, who are supposedly mostly well after 13 months of treatment > including a PICC line, are both lying in bed in pain again today after 3 > days in > school. I gnash my teeth but it is what it is. Oh, and the district nurse > just > stormed our LLMD's office unannounced to explain to him how to treat lyme > patients and that a few weeks of antibiotics and his malingering patients > should > be back in school. I wish that were true, and I wish she had late-stage > Lyme > and had people telling her to get her behind in to work and stop > malingering. > The world is not a fair place. > > I'm trying to get my daughters to start a facebook page for teen Lymies to > meet > and chat about life, the universe, Lyme and everything. But more than just > Lyme. Let me know if any of your children start one. > > Natasha > > ________________________________ > > From: speckofpepper <sandsure@... <sandsure%40bestmail.us>> > < %40> > Sent: Thu, October 7, 2010 5:41:47 AM > Subject: [ ] Re: what to expect? > > > Thank you so much to everyone for sharing your experiences with this med. > My > child is 14, congenital, breastmilk exposed and reinfected as a toddler and > > again about 3 years ago. Never treated appropriately with meds until a year > > ago. She is doing so much better, but is basically has to save all her > energy > and hope really hard that she can make it out of the house twice a week for > > classes. It seems like choosing days where she has time to " recover " from > the > meds before her scheduled out of the house days will be in order. I know > and > she knows that she will feel worse before she feels better...but it is so > hard, > right? It has been a long 3 years for her and to know that this phase of > treatment may be difficult is scary. Thank you all so much as the support > is > so important to me. Thinking of all the children and the parents that hold > them > up and keep them on course, even when they are often not well themselves. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Hi -- That is great of you. I just want to say that when I first found out that my kids had Lyme, I put together an entire packet, basically a mini research paper complete with footnotes, a bibliography, and a little ABCs of Lyme pamphlet that I downloaded. I also offered a copy of Under Our Skin, which a couple of teachers have watched. The attendance lady and school nurse (not to be confused with district nurse) watched it and have been beyond supportive of our girls. It is tough to deal with a condescending, uninformed woman who is clearly directing orders for every harassing phone call we get. I do try to advocate all the time so that people find out about it and don;t have to go through what we do. My daughter is holding the hand of her friend who is now where my daughter was a year ago -- they talk and hang out even just on the couch in the dark when that's all she can take. Natasha ________________________________ From: batikquilt <batikquilt@...> Sent: Thu, October 7, 2010 6:51:45 PM Subject: [ ] Re: what to expect? I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Do you by chance have something I can give to my daughters school nurse? Her father that has not been apart of her life but wanted child support dropped and I would not then went to the school nurse and made me out to be crazy and her llmd to be crazy - so now she thinks lyme is untrue!! I even had to get a CFS doctor to be able to help with her 504 plan at school because of her absentees....so sad...they look at me as I am a lier now and lyme disease doesn't do this to you and that the test from children's hosp says her wb is negative but it really says it unequivocal - and that doesn't mean negative - they don't understand. It's been pure hell - at least the courts now do not make my daughter see her father.......but he lingers on and tries to make me look like a crazy mom that just lets her daughter stay up all night and then stay home if she wants.........and my daughter LOVES school - she would be there everyday if she could!! Anyways, do you think you could email me something that you use as a handout or anything that would get her to try and understand again what my poor daughter lives with? Bless you for helping others as you do - I am so sorry for your daughter..........I have three girls that have lyme and myself.........it's been hard to say the least.......and when school is in the stress of being the bad people when me girls are home sick is such a terrible stress school systems put on us.............if only we had a magic wand.........Bless you!! ________________________________ From: batikquilt <batikquilt@...> Sent: Thu, October 7, 2010 8:51:45 PM Subject: [ ] Re: what to expect?  I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Diane, I honestly don't know how you are coping with all this. My heart and my utmost respect go out out you. Here is the link to the Lyme flier and the tick information that I use and hand out to people everywhere. They are written by a layperson, not a doctor, just to be aware. However, I have found these two things to have such a wealth of information and it's handily condensed down to something people may actually read. Click on the file attachments to read them. http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/14\ 39835-lyme-flyer-2010 I wish you the best of luck and healing for you and your children. Give one of these Lyme fliers to your kids' school nurse and their father. Maybe they'll both be a little more understanding. Kaethe ________________________________ From: Diane Biel <dkbmama@...> Sent: Thu, October 7, 2010 10:26:07 PM Subject: Re: [ ] Re: what to expect? Do you by chance have something I can give to my daughters school nurse? Her father that has not been apart of her life but wanted child support dropped and I would not then went to the school nurse and made me out to be crazy and her llmd to be crazy - so now she thinks lyme is untrue!! I even had to get a CFS doctor to be able to help with her 504 plan at school because of her absentees....so sad...they look at me as I am a lier now and lyme disease doesn't do this to you and that the test from children's hosp says her wb is negative but it really says it unequivocal - and that doesn't mean negative - they don't understand. It's been pure hell - at least the courts now do not make my daughter see her father.......but he lingers on and tries to make me look like a crazy mom that just lets her daughter stay up all night and then stay home if she wants.........and my daughter LOVES school - she would be there everyday if she could!! Anyways, do you think you could email me something that you use as a handout or anything that would get her to try and understand again what my poor daughter lives with? Bless you for helping others as you do - I am so sorry for your daughter..........I have three girls that have lyme and myself.........it's been hard to say the least.......and when school is in the stress of being the bad people when me girls are home sick is such a terrible stress school systems put on us.............if only we had a magic wand.........Bless you!! ________________________________ From: batikquilt <batikquilt@...> Sent: Thu, October 7, 2010 8:51:45 PM Subject: [ ] Re: what to expect? I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Natasha, Great of you to put together all that stuff. It takes an amazing amount of work to do that. I admire you, and my friend, whom I've come to know during our Lyme sagas, for all this work. I am just the lowly messenger who is trying like heck to spread awareness. Our three kids were all born in a highly endemic area. We checked them for ticks after every hike, and yet I shudder to think about how little we really knew at that time. Now we live in a " non-endemic " area, but one that is rapidly seeing more and more cases of Lyme. We have no idea where and when our daughter became infected. She tarted showing symptoms three years ago and has run the gamut of specialists, who told her it was all in her head. Same old story told countless times by Lyme sufferers. After she was diagnosed by a WB from Igenex, I sent out 21 letters to each health care professional who had seen her to make them aware of what she really had/has. I want everyone to know a little something at least, by handing out this information. If you are interested in looking at this, here is the link for my friend's fliers. Maybe there is something in there that can be helpful to someone along the way! http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/14\ 39835-lyme-flyer-2010 batikquilt ________________________________ From: Natasha Moiseyev <nmoiseyev@...> Sent: Thu, October 7, 2010 10:20:45 PM Subject: Re: [ ] Re: what to expect? Hi -- That is great of you. I just want to say that when I first found out that my kids had Lyme, I put together an entire packet, basically a mini research paper complete with footnotes, a bibliography, and a little ABCs of Lyme pamphlet that I downloaded. I also offered a copy of Under Our Skin, which a couple of teachers have watched. The attendance lady and school nurse (not to be confused with district nurse) watched it and have been beyond supportive of our girls. It is tough to deal with a condescending, uninformed woman who is clearly directing orders for every harassing phone call we get. I do try to advocate all the time so that people find out about it and don;t have to go through what we do. My daughter is holding the hand of her friend who is now where my daughter was a year ago -- they talk and hang out even just on the couch in the dark when that's all she can take. Natasha ________________________________ From: batikquilt <batikquilt@...> Sent: Thu, October 7, 2010 6:51:45 PM Subject: [ ] Re: what to expect? I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Bless your heart for sending me this info.......I have to take the time to sit down and print out so much stuff again - I did it last year before all the craziness started and put everything aside for a bit - I also have in-laws that do not believe my disease and there grandchildren disease.......its pure hell!! They think I am lazy and should get a full time job and for Gods sake - make those children go to school - education is important!! I had to leave my dream of college twice when I was so sick never got to go back.....had to sell my beauty salon due to this disease and they look down on me because I do not have a college degree and I job with a title.............its been pure hell - but I have my mother who is my rock and all of you who support me and let me know I am not alone with this struggle..........you are all angels to me.........you not only are saving yourself, your children, other and by being a part of this lyme posting......you have also saved my life.......I truly am not alone and never will be again with this terrible disease.........Bless you all!!!!!!! Diane ________________________________ From: Kaethe <batikquilt@...> Sent: Mon, October 11, 2010 9:11:47 AM Subject: Re: [ ] Re: what to expect?  Diane, I honestly don't know how you are coping with all this. My heart and my utmost respect go out out you. Here is the link to the Lyme flier and the tick information that I use and hand out to people everywhere. They are written by a layperson, not a doctor, just to be aware. However, I have found these two things to have such a wealth of information and it's handily condensed down to something people may actually read. Click on the file attachments to read them. http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/14\ 39835-lyme-flyer-2010 I wish you the best of luck and healing for you and your children. Give one of these Lyme fliers to your kids' school nurse and their father. Maybe they'll both be a little more understanding. Kaethe ________________________________ From: Diane Biel <dkbmama@...> Sent: Thu, October 7, 2010 10:26:07 PM Subject: Re: [ ] Re: what to expect? Do you by chance have something I can give to my daughters school nurse? Her father that has not been apart of her life but wanted child support dropped and I would not then went to the school nurse and made me out to be crazy and her llmd to be crazy - so now she thinks lyme is untrue!! I even had to get a CFS doctor to be able to help with her 504 plan at school because of her absentees....so sad...they look at me as I am a lier now and lyme disease doesn't do this to you and that the test from children's hosp says her wb is negative but it really says it unequivocal - and that doesn't mean negative - they don't understand. It's been pure hell - at least the courts now do not make my daughter see her father.......but he lingers on and tries to make me look like a crazy mom that just lets her daughter stay up all night and then stay home if she wants.........and my daughter LOVES school - she would be there everyday if she could!! Anyways, do you think you could email me something that you use as a handout or anything that would get her to try and understand again what my poor daughter lives with? Bless you for helping others as you do - I am so sorry for your daughter..........I have three girls that have lyme and myself.........it's been hard to say the least.......and when school is in the stress of being the bad people when me girls are home sick is such a terrible stress school systems put on us.............if only we had a magic wand.........Bless you!! ________________________________ From: batikquilt <batikquilt@...> Sent: Thu, October 7, 2010 8:51:45 PM Subject: [ ] Re: what to expect? I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and removal tips " for my students to take and read. I am trying to educate everyone in the school where I work about Lyme disease and co-infections. My friend put this informative sheet together as well as a " Lyme Flyer " , which lists symptoms and resources, web pages and other helpful tips. It is exactly what I wished I had when I started this journey when my daughter became ill. I keep a supply of both printouts in my over-sized purse and hand them out to everyone I come across whether they want them or not! Well, that might be a slight exaggeration, but I would do anything to help anyone from going though what my poor daughter has gone through, and continues to endure. I have even given them to complete strangers in the checkout line at Target. Fond thoughts to all who are supporting those who are suffering from Lyme and co-infections, especially those caregivers who are ill themselves. May all find comfort and health. batikquilt Quote Link to comment Share on other sites More sharing options...
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