Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 > > Hi, > > I read your other posts,between chores, sorry about the cynicism comment. I think the notes may be given for different reasons. I am still clueless as to the " top 2000. Any idea how many of these competitions there are in a year and or how many people enter? > > C , Now I just read this post but I just sent a reply to the earlier one. Anyway, I heard that their are around a couple/few hundred thousand that enter but only 6% or so actually finish the 12 weeks. That means around 20 tho 30 thousand finish. I know this because I called the EAS 800 number and asked when I began my challenge last year. I think that there are 7 or 8 groups that make up a whole years worth of entries based on the challenge dates they give on the web site. Still red faced-- ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Miss red face, I know the feeling......I had to wait to reply cause my hubby was standing next to me and I don't want to get him down about " The note " So are there (thirty thousand) that finish all together or for each of the eight groups? This is my first challenge so I wouldn't be in any top anything, except maybe top heavy..... C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 > > Miss red face, > > I know the feeling......I had to wait to reply cause my hubby was standing next to me and I don't want to get him down about " The note " > > So are there (thirty thousand) that finish all together or for each of the eight groups? > > This is my first challenge so I wouldn't be in any top anything, except maybe top heavy..... > > C I'm sorry, I don't really know any more information. They said the info. they gave me was just a ball park and that every year the numbers change. I would think the 30 thousand or so is a ball park number of finishers for the whole year. They may have all of the numbers in at this time for 2002. I don't know. Sorry-- .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 No, Just very sleepy but they could wake me enough to follow commands. I don't remember anything at all about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 When you were given the sedation, were you asleep during the biospy? I thought you had to be awake to hold your breath as they pass through the rib. I'm suppose to get another biospy within one year and I dread the thought of it. This next time I'm demanding something or I just won't do it. It's a quick procedure but I don't think people should have to feel that kind of pain!. -NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hey , If you find out let me know. I don't know either. I guess you and I are not to "Net Savvy". Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 , I didn't know what a mangle was either. I'm still trying to figure out what BTW is. Thank God Marty asked what LOL was! That one pretty much drove me crazy. -NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 BTW means by the way, OOT I know I've used before is out-of town, OOP means out of pocket. You may know all this by now. Bert introduced ROFL roll on floor laughing. Patty Re: [ ] - , I didn't know what a mangle was either. I'm still trying to figure out what BTW is. Thank God Marty asked what LOL was! That one pretty much drove me crazy. -NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 , I probably have lived in Millville at least 15 years of my life. My Dad's whole side of the family all live in Millville. I never considered Millville to be small, but, being you live in LA I can see how you would see it as that. When I graduated in Bridgeton from High school there were 1200 students graduating with me. To me that's big. I now live in a very small town called Walpole (New Hampshire). Graduation class in 100 students and that includes many small towns surrounding Walpole. When I first saw your name on the posts, I thought your name was very familiar to me. How is your work based in Millville and what kind of work do you do? I am curious that I might just just know you. I don't miss NJ at all. I just miss family. Hoping to go for a visit Labor Day Weekend. Take care! -NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Hi : I don't think it was Atlantic City boardwalk , i went to. It was a small one- not far from Milville-- wish i rembered the name. Do you know where Old Sturbridge Village is? of course, it is in Sturbridge... hahha... We live 5 min from there. Cliff had an aunt that lived in Milford-- are you close to Lynn , Mass- the border??? I will have to check out the map. Maybe , someday we can meet... Are you married? I think I read you have children. We do not have childrem. Just a spoiled cat- we had 2, but, she had to put to sleep 2 yrs in Oct. had cancer-(inner ear) it was rare. Anyways, hope you have a great Labor Day weekend. Also, how old are you? do you mind me asking.? I am 47. Cliff is 43. Thanks for listening---- Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hi , I read your post to nne. So sorry you are having such a hard time. I was having problems with the ammiona. I beleive it is a liver thing. When my enzymes are high I notice it more. I haven't noticed it when I cry but I notice it on my PJ's when I wake up. Unfortunatly this illness actually has depression as a symptom. I hated Effexor! It made me feel screwy. I take Lexapro and Serquil even though I am not schizophrenic. I do have a major depressive disorder and PTSD, aside from the liver stuff. I have found the meds really help. What do you actually do at work? You said that you need computer skills. I teach computer skills as one of my hats I wear. Is there anything I can do to help you learn more about computers??? If you have any questions please E me. Sirkotbe@... will try to help the best I can. I know it is so hard to have to work come home and function. I can't do it lately either. I just lay around waiting till bed time. I have had to change my schedule especially this week my energy really sucks. I haven't been able to get out of bed till 1:00pm. I am a total dish rag. My first job isn't as flexable as my second one so I am waiting to get called in on my absents. Hope you are feeling better, Sherry in VA. Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry >From: Nocera-NH@... >Reply- > >Subject: Re: [ ] nne in hot Pensacola >Date: Wed, 30 Jul 2003 18:53:40 -0400 > > >nne, Right now even though I hate my hot weather, I am happy to >say, that I am not in Florida at this time. Not even for a vacation! Is >that normal to smell ammonia when you cry? Maybe you should just ask >your doctor. I cry quite a bit. Many times I cry myself asleep. I'm >depressed whether I take a anti depressant or not. Even though I think my >liver is in a bit better shape than some and I go to work everyday I feel >like it's over. I live alone too,but, that really doesn't bother me. What >bothers me is will I be able to support myself for the rest of my life. >After working all day and always feeling tired I also don't have any >energy to even do the things I have always wanted to do. These projects >are very important to me. I can't even get a easier type of job because I >know nothing about computers. All office work now is computers. Besides >I make more money doing what I do now. Can't afford to take classes. I >am hoping my energy level will get better. I am working on arranging my >schedule so I can at least have one day off a week. My daughter and >son-in-law are taking over my checkbook to help get me straightened out >and hopefully be on a budget and schedule that will allow me to maybe do >some things I want. I was always a positive person, but, since the liver, >I'm not anymore. I took paxil mainly to help me sleep. It knocked me out >pretty good. Now I'm on effexor XR. I'm getting use to it, but, can't >sleep. It does nothing for me in that area. Doc wants me on it at least >two more weeks. I hate it. Are you on any kind of anti-depressant? We >have two nne's. Not sure who is who. I think it's OK to cry. It's >good for us. I think handling stress is much harder on us! Take Care >-NH Add photos to your e-mail with MSN 8. Get 2 months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 : Yes, we do live in Southbridge, Ma--- I did check mapquest--- Walpole, did not appear Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Please send me the info on Acupressure. Thanks, Joyce M. Dávila Mamá de Verónica Marie Puerto Rico ----- Original Message ----- 12. Re: Best NAET treatment From: " , Jen, rarely " <cannesdo@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 OMG, , it just makes me want to scream when doctors are so freaking stupid! where do you live, ? we can help you find a doctor who will help you. how long ago were you last tested? do you have a copy of the results that you can post? they probably didn't even do all the right tests. this happened to my good friend. She went for years and years with symptoms and knew she was hypothyroid, but her doctor kept telling her that her tests were coming back normal. Finally it was like 10 years later and her TSH jumped up enough that she was put on medication. my mom also suffered with symptoms and her doc would not treat her. she lives in the country so it's very hard to changes docs. anyway, she finally has found a doc and is being treated. Maybe we can help you find one. I certainly don't want you to suffer the rest of your life. Hugs, Sheila wendy Biettchert <wendylvnv@...> wrote: you arevery fortunate to have been helped...i have been trying to tell health care professionals for 27 yrs that i have a hypothyroid problem, but it never shows up on the tests ...so, i have been on antidepressants for over 18 yrs, and dont feel any better..a naturopathic dr did eav testing and said that my thyroid and adrenals were working at 15 percent compacity and that is why i am always forgetful, fatigued and stressed/depressed, but that she cant get me anything strong like i need because she isnt a medical dr...so i tried 2 medical drs ...one laughed at me and the other ran tests and of course nothing turns up on paper...he doesnt believe me so i cant even ask for any other kind of testing..guess i have to go thru the next 27 years miserable and feeling crazy and forgetfull and the rest of the symptoms i have...thanks for listening >From: Aprilcupcake@... >Reply-hypothyroidism >hypothyroidism >Subject: Re: Am I going crazy or what???????? >Date: Wed, 21 Jan 2004 22:18:04 EST > >Hi, killroy. Sounds very similar to what I went through about six years >ago. >I don't know if you are female or male, but I had a condition known as >Postpartum Thyrotoxicosis. My thyroid gland function would fluctuate >between hyper and hypo. I was HYper when I was having major anxiety >attacks. My doctor then did NOT run thyroid function tests. He assumed >because I had given birth six months prior, that It was a classic case of >depression.... >There was nothing classic about it! Anyway, I too was put on >antidepressants >of all names and doses, and it only made me worse! >That's because when your thyroid gland is not functioning properly, you >cannot process any of those drugs. They just stay in your body and >poison you. My first dose of Paxil at 40mg put me in the emergency >room. They assumed I had taken too many because my pupils were >dilated and I was unresponsive. I was admitted to the psychiatric unit >of the hospital and kept for seven days. >Upon admission however, they did run a thyroid panel and a C A T scan. >Neither of them were ever read. Just stuck in my file and that was that. >After I was released, I continued to have problems and when I finally got >down to 85lbs and was looking for a train to jump in front of... >I decided to throw away all of the pills and start over! >It took me a good eight months to rid myself of all of the drugs, >But, after that I found someone to listen to me, and the mystery was >solved rather quickly. I am considered HYpothyroid now and I take >100mcg of synthroid everyday never to have those anxiety or depressive >symtoms return! >Many of the first signs of thyroid disfunction are emotional and cognitive. >If you know this is not normal for you... seek help right away. Don't get >sucked into the psychiatric trap. > >Happy to help you in any way! >. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 hi, well, i live in las vegas, nv...i had the most recent test done last week...free3 free4 and about 3 more for thyroid and one cortisol..i dont have the report..i would need to get it..i'm starting to feel llike it is all in my head, but i know it is not!!!! >From: Kemal Kalajdzic <kemalandsheila@...> >Reply-hypothyroidism >hypothyroidism >Subject: Re: - >Date: Thu, 22 Jan 2004 03:57:12 -0800 (PST) > >OMG, , it just makes me want to scream when doctors are so freaking >stupid! > >where do you live, ? we can help you find a doctor who will help you. > >how long ago were you last tested? do you have a copy of the results that >you can post? they probably didn't even do all the right tests. > >this happened to my good friend. She went for years and years with symptoms >and knew she was hypothyroid, but her doctor kept telling her that her >tests were coming back normal. > >Finally it was like 10 years later and her TSH jumped up enough that she >was put on medication. > >my mom also suffered with symptoms and her doc would not treat her. she >lives in the country so it's very hard to changes docs. anyway, she finally >has found a doc and is being treated. > >Maybe we can help you find one. I certainly don't want you to suffer the >rest of your life. Hugs, Sheila > > >wendy Biettchert <wendylvnv@...> wrote: >you arevery fortunate to have been helped...i have been trying to tell >health care professionals for 27 yrs that i have a hypothyroid problem, but >it never shows up on the tests ...so, i have been on antidepressants for >over 18 yrs, and dont feel any better..a naturopathic dr did eav testing >and >said that my thyroid and adrenals were working at 15 percent compacity and >that is why i am always forgetful, fatigued and stressed/depressed, but >that >she cant get me anything strong like i need because she isnt a medical >dr...so i tried 2 medical drs ...one laughed at me and the other ran tests >and of course nothing turns up on paper...he doesnt believe me so i cant >even ask for any other kind of testing..guess i have to go thru the next 27 >years miserable and feeling crazy and forgetfull and the rest of the >symptoms i have...thanks for listening > > > >From: Aprilcupcake@... > >Reply-hypothyroidism > >hypothyroidism > >Subject: Re: Am I going crazy or what???????? > >Date: Wed, 21 Jan 2004 22:18:04 EST > > > >Hi, killroy. Sounds very similar to what I went through about six years > >ago. > >I don't know if you are female or male, but I had a condition known as > >Postpartum Thyrotoxicosis. My thyroid gland function would fluctuate > >between hyper and hypo. I was HYper when I was having major anxiety > >attacks. My doctor then did NOT run thyroid function tests. He assumed > >because I had given birth six months prior, that It was a classic case of > >depression.... > >There was nothing classic about it! Anyway, I too was put on > >antidepressants > >of all names and doses, and it only made me worse! > >That's because when your thyroid gland is not functioning properly, you > >cannot process any of those drugs. They just stay in your body and > >poison you. My first dose of Paxil at 40mg put me in the emergency > >room. They assumed I had taken too many because my pupils were > >dilated and I was unresponsive. I was admitted to the psychiatric unit > >of the hospital and kept for seven days. > >Upon admission however, they did run a thyroid panel and a C A T scan. > >Neither of them were ever read. Just stuck in my file and that was that. > >After I was released, I continued to have problems and when I finally got > >down to 85lbs and was looking for a train to jump in front of... > >I decided to throw away all of the pills and start over! > >It took me a good eight months to rid myself of all of the drugs, > >But, after that I found someone to listen to me, and the mystery was > >solved rather quickly. I am considered HYpothyroid now and I take > >100mcg of synthroid everyday never to have those anxiety or depressive > >symtoms return! > >Many of the first signs of thyroid disfunction are emotional and >cognitive. > >If you know this is not normal for you... seek help right away. Don't get > >sucked into the psychiatric trap. > > > >Happy to help you in any way! > >. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 hi, i advise that you get a copy of all your labs. you can post the results and the group look everything over. you're not making up your symptoms. they're there. period. you know your body. you know when something doesn't feel right. trust yourself and what your body is telling you. hugs, sheila wendy Biettchert <wendylvnv@...> wrote: hi, well, i live in las vegas, nv...i had the most recent test done last week...free3 free4 and about 3 more for thyroid and one cortisol..i dont have the report..i would need to get it..i'm starting to feel llike it is all in my head, but i know it is not!!!! >From: Kemal Kalajdzic >Reply-hypothyroidism >hypothyroidism >Subject: Re: - >Date: Thu, 22 Jan 2004 03:57:12 -0800 (PST) > >OMG, , it just makes me want to scream when doctors are so freaking >stupid! > >where do you live, ? we can help you find a doctor who will help you. > >how long ago were you last tested? do you have a copy of the results that >you can post? they probably didn't even do all the right tests. > >this happened to my good friend. She went for years and years with symptoms >and knew she was hypothyroid, but her doctor kept telling her that her >tests were coming back normal. > >Finally it was like 10 years later and her TSH jumped up enough that she >was put on medication. > >my mom also suffered with symptoms and her doc would not treat her. she >lives in the country so it's very hard to changes docs. anyway, she finally >has found a doc and is being treated. > >Maybe we can help you find one. I certainly don't want you to suffer the >rest of your life. Hugs, Sheila > > >wendy Biettchert wrote: >you arevery fortunate to have been helped...i have been trying to tell >health care professionals for 27 yrs that i have a hypothyroid problem, but >it never shows up on the tests ...so, i have been on antidepressants for >over 18 yrs, and dont feel any better..a naturopathic dr did eav testing >and >said that my thyroid and adrenals were working at 15 percent compacity and >that is why i am always forgetful, fatigued and stressed/depressed, but >that >she cant get me anything strong like i need because she isnt a medical >dr...so i tried 2 medical drs ...one laughed at me and the other ran tests >and of course nothing turns up on paper...he doesnt believe me so i cant >even ask for any other kind of testing..guess i have to go thru the next 27 >years miserable and feeling crazy and forgetfull and the rest of the >symptoms i have...thanks for listening > > > >From: Aprilcupcake@... > >Reply-hypothyroidism > >hypothyroidism > >Subject: Re: Am I going crazy or what???????? > >Date: Wed, 21 Jan 2004 22:18:04 EST > > > >Hi, killroy. Sounds very similar to what I went through about six years > >ago. > >I don't know if you are female or male, but I had a condition known as > >Postpartum Thyrotoxicosis. My thyroid gland function would fluctuate > >between hyper and hypo. I was HYper when I was having major anxiety > >attacks. My doctor then did NOT run thyroid function tests. He assumed > >because I had given birth six months prior, that It was a classic case of > >depression.... > >There was nothing classic about it! Anyway, I too was put on > >antidepressants > >of all names and doses, and it only made me worse! > >That's because when your thyroid gland is not functioning properly, you > >cannot process any of those drugs. They just stay in your body and > >poison you. My first dose of Paxil at 40mg put me in the emergency > >room. They assumed I had taken too many because my pupils were > >dilated and I was unresponsive. I was admitted to the psychiatric unit > >of the hospital and kept for seven days. > >Upon admission however, they did run a thyroid panel and a C A T scan. > >Neither of them were ever read. Just stuck in my file and that was that. > >After I was released, I continued to have problems and when I finally got > >down to 85lbs and was looking for a train to jump in front of... > >I decided to throw away all of the pills and start over! > >It took me a good eight months to rid myself of all of the drugs, > >But, after that I found someone to listen to me, and the mystery was > >solved rather quickly. I am considered HYpothyroid now and I take > >100mcg of synthroid everyday never to have those anxiety or depressive > >symtoms return! > >Many of the first signs of thyroid disfunction are emotional and >cognitive. > >If you know this is not normal for you... seek help right away. Don't get > >sucked into the psychiatric trap. > > > >Happy to help you in any way! > >. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Lotsa fun! I am 4 hours from Fenway. It is special to go to get out of the woods and go to Boston. Gracia > I found I had the energy I needed yesterday -- we went into Boston to Fenway Park for the Red Sox game .......we had Green Monster Seats -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Dear lolosky, Yes, yes, and yes. You will find that the symptoms will most likely disappear gradually and some before others. For me, the twitching and shaking stoped early on. The tingling lasted longer. GT --- lolosky2 <lolosky2@...> wrote: > > Thanks for the cheerful message! I am due for > explantation in a month > and a half and I have basically all the symptoms off > and on that > everyone mentions. The thing that scares me the > most is the > twitching, shaking, and tingling, that happens > everywhere, even in my > face. Did you have any of that and did it resolve > after explantation?? > Thanks! > Lo > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 , thanks a lot. Deana >>We just met Dr. lin when got involved with the study, so a >>couple of months. He is now going to be seeing her outside of the >>constraints of the study, though. > >Dr. _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Done the dehydration mistake, here, too! Sigh! Now, we have a port, so it isn't such a big deal, but when Rebekah does get sick, she dehydrates so badly that we can never got a vein in her arm or hand. Last time, the phlebotomist talked abut accessing her port with a blood drawing needle (A BIG NO-NO). I made that sick child with a 104 fever and 5 previous blood tries chug a large glass of water and held her in the waiting room for 30 minutes, just to pump those veins up with fluid. It worked. But the next time, we are hydrating from the moment we leave the house for the hospital. I don't want to go through that again. Oh, and I've made dh promise that no ordinary needles will be used on her port. Pam mom to 4 Rebekah, 6, CVID and ?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Hi, , I agree with you 100% too. Since my son's diagnosis at 4 years old, I keep telling everyone I know that if you think something is wrong, do something about it. Don't do what I did and that's wait and pray for a miracle to happen overnight. I am really surprised that 's parents can renounce the very biomedical treatments that have helped their grandson. I cannot understand. There may not be black and white in the political agenda of charity fundraising, but to not support what has been proven effective in their little grandson is just not right. Kudos to for speaking out. --- julieobradovic@... wrote: > In defense of ... (not that anyone is bashing her, just want > to make a point) > > I had the opportunity to meet her at the Autism One conference here > in Chicago this May. Our conversation was brief, and I'm sure she > wouldn't remember me from the man on the moon. But, what I do > remember is how very, very exhausted she looked. Truly, utterly, > exhausted....wiped out...nothing left. Her body looked literally > heavy from her broken heart. I can't describe it any better than > that. > > As a mom of a recovered daughter, I instantly related to it. She > was in that place that you may indeed find your own self in right > now...the place where you can't stop the photo flashes in your head > of illnesses, antibiotics, doctor appointments, frustration, > arguing with your spouse, fear, lack of progress in spite of doing > everything you're told, helplessness...and all the tears. > > Now add to this for , a PROFOUNDLY autistic little boy who > only stopped having diarrhea a few months ago. A little boy who was > speaking over 1,000 words and now has nothing! And then on top of > everything has parents who start the largest autism organization in > her son's name, but then don't even provide so much as a LINK to > the biomedical treatments that he benefits from! She isn't even > asked to be on the Board of Directors, and is harshly and publicly > criticized in the frickin New York Times for speaking out against > the direction the organization in HER SON'S NAME is taking..or > rather isn't taking. Imagine that! Imagine your parents not > supporting you on that level! And they have millions of dollars to > change it! Imagine your frustration! > > Crazily, her own mother found Dr. Wakefield to help her > child!...the most controversial doctor in all of autism because he > had the audacity to suggest a link to the MMR in autism! He is > going to trial in England shortly where he very well may lose his > liscence to practice medicine! And here is , whose son finally > got rid of the diarhea through Dr. Wakefield's help, and Autism > Speaks won't even " speak " out on his behalf! All Autism Speaks has > to do is recognize Wakefield's contribution to the treatment of > Autism and this is done! But they don't! It's good enough for the > founder's grandson, but no one else? What?! Their hypocricy is > maddening. > > So now is actually a board member of the National Autism > Association! She's not even a part of the organization her parents > started. > > My point is, this woman has been through hell. I believe she is > still in it. I believe she is doing everything she can to help > change the paradigm from that which believes autism is a mental > illness to the reality that it is an actual disease that can be > treated and reversed medically. And while her message, " If you > think something is wrong, it probably is " may seem harsh, I have > found in the years that I've been dealing with all of this, " harsh " > is the only way to be. > > You have to be " harsh " in your mentality to get your child better. > You have to be " harsh " in what you say and will tolerate from your > doctors and your school. You have to be " harsh " with yourself, take > responsibility for your contribution to the situtation, deal with > it, forgive yourself, and move on. For someone like myself who > absolutely hates controversy and confrontation, this is about as an > unnatural way to be as I can imagine. But it works. > > As bad as it sounds, " harsh " works. It aggrivates, it frustrates, > it stings, and it hurts, but it motivates. You either set out to > prove it right, or prove it wrong, but you do something. > Wishy-washy maybes and could-bes allow you to sit in limbo, > paralyzed to move left or right. We are all so insecure because we > feel responsible for " letting " this happen, that we lose the > ability to trust ourselves to make good choices....finding the > right doctors, doing the research, knowing when we know enough and > knowing when we only know enough to be dangerous. > > We have to start thinking of our children's health as being on > fire. You would never leave your child burning sitting around > feeling bad about why they are on fire, wondering how it happened, > debating what you should do if anything, engaging in arguments as > to whether they are really on fire at all or if they were meant to > be burning, and thinking the whole time oh, isn't it just so sad > and painful....NO! You would grab that child, wrestle them to > floor, douse them in water, wrap a blanket around them and rush > them to the emergency room! You would act! > > " Harsh " doesn't have to be " mean " . It just has to be firm. Could > have wrapped up her message a little nicer? Sure, of course. > But do I agree with it? Absolutely, 100%. I could have started > recovering my daughter 2 years prior to when I did if someone had > said that to me....instead, I got " wait and see " ... " not all kids > develop the same way " ... " don't compare her to her brother " ... " all > kids get lots of ear infections " .... > > So, I'll reiterate what she said, " If you think something is > wrong...it probably is. " We're moms. We know. And we can get our > kids better when we do. > > > > > > > > -------------- Original message -------------- > From: Liz <lizlaw@...> > I meant to chime in about the post on and her message. > I > think it was Kris who said she just comes across so negative with > her > " If you think something is wrong with your child, there probably > is. " I > agree...nothing like scaring everyone to get your message across. I > can > empathize with on this, one of the dark days when I am so mad > at > all the " No, Liz, she's fine...he's fine... " My children are not > fine > and it makes me mad that now that I know that I still have an > uphill > climb. I am grateful to know, relieved things are not worse and > fearful > they could get that way if I do not find a medical doctor > experienced > and knowledgable enough to help me sort this out. As a result I see > > where is coming from but that is not the message that can be > linked to autism, apraxia, and all the other results of > malabsorption if > we are to get anywhere. I think the message needs to be, if you > think > something is wrong with your child, trust your mommy gut, ask > questions > and do not stop until you know what it is. Here are some resources > to > help, followed by questionnaires that address common culprits and a > list > of medical personnel who have helped others in a safe and timely > fashion. It is not enough to have a worthy cause. The message needs > to > be palatable if we are ever to get anywhere. > > Just my 2 cents:) > L > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 When I saw her on that Oprah show, just looked (for lack of a better word) haggard. Emotionally, physically, spiritually haggard. Beat up and haggard. I can't imagine what it would be like to have a child with regressive autism. I cannot imagine what it would be like to have a child so profoundly affected by autism. And I cannot imagine what it would be like to have your parents publicly turn their back on you when you are already going through so much difficulty. I also cannot imagine what it would be like to be so vilified in the press and have that bad press be prompted and/or promoted by your own parents and their colleagues. To have all of these things occur at the same time seems an unbelievable burden to carry. The most difficult (from my perspective) of all being that your parents, who publicly basque in the praises folks shower on them for doing such a marvelous thing for their daughter, have, in truth, turned against her. I would not be able to carry on. The fact that she even gets out of bed every day says that she is a much stronger person than I am. Kris The Knitting Wannabe http://knittingwannabe.typepad.com Sonny & Shear: The I’ve Got Ewe, Babe Yarn Shop http://www.sonnyandshear.com On Jul 5, 2007, at 7:54 PM, Kong wrote: > Hi, , > > I agree with you 100% too. Since my son's diagnosis at 4 years > old, I keep telling everyone I know that if you think something is > wrong, do something about it. Don't do what I did and that's wait > and pray for a miracle to happen overnight. > > I am really surprised that 's parents can renounce the very > biomedical treatments that have helped their grandson. I cannot > understand. There may not be black and white in the political agenda > of charity fundraising, but to not support what has been proven > effective in their little grandson is just not right. > > Kudos to for speaking out. > > > > --- julieobradovic@... wrote: > > > In defense of ... (not that anyone is bashing her, just want > > to make a point) > > > > I had the opportunity to meet her at the Autism One conference here > > in Chicago this May. Our conversation was brief, and I'm sure she > > wouldn't remember me from the man on the moon. But, what I do > > remember is how very, very exhausted she looked. Truly, utterly, > > exhausted....wiped out...nothing left. Her body looked literally > > heavy from her broken heart. I can't describe it any better than > > that. > > > > As a mom of a recovered daughter, I instantly related to it. She > > was in that place that you may indeed find your own self in right > > now...the place where you can't stop the photo flashes in your head > > of illnesses, antibiotics, doctor appointments, frustration, > > arguing with your spouse, fear, lack of progress in spite of doing > > everything you're told, helplessness...and all the tears. > > > > Now add to this for , a PROFOUNDLY autistic little boy who > > only stopped having diarrhea a few months ago. A little boy who was > > speaking over 1,000 words and now has nothing! And then on top of > > everything has parents who start the largest autism organization in > > her son's name, but then don't even provide so much as a LINK to > > the biomedical treatments that he benefits from! She isn't even > > asked to be on the Board of Directors, and is harshly and publicly > > criticized in the frickin New York Times for speaking out against > > the direction the organization in HER SON'S NAME is taking..or > > rather isn't taking. Imagine that! Imagine your parents not > > supporting you on that level! And they have millions of dollars to > > change it! Imagine your frustration! > > > > Crazily, her own mother found Dr. Wakefield to help her > > child!...the most controversial doctor in all of autism because he > > had the audacity to suggest a link to the MMR in autism! He is > > going to trial in England shortly where he very well may lose his > > liscence to practice medicine! And here is , whose son finally > > got rid of the diarhea through Dr. Wakefield's help, and Autism > > Speaks won't even " speak " out on his behalf! All Autism Speaks has > > to do is recognize Wakefield's contribution to the treatment of > > Autism and this is done! But they don't! It's good enough for the > > founder's grandson, but no one else? What?! Their hypocricy is > > maddening. > > > > So now is actually a board member of the National Autism > > Association! She's not even a part of the organization her parents > > started. > > > > My point is, this woman has been through hell. I believe she is > > still in it. I believe she is doing everything she can to help > > change the paradigm from that which believes autism is a mental > > illness to the reality that it is an actual disease that can be > > treated and reversed medically. And while her message, " If you > > think something is wrong, it probably is " may seem harsh, I have > > found in the years that I've been dealing with all of this, " harsh " > > is the only way to be. > > > > You have to be " harsh " in your mentality to get your child better. > > You have to be " harsh " in what you say and will tolerate from your > > doctors and your school. You have to be " harsh " with yourself, take > > responsibility for your contribution to the situtation, deal with > > it, forgive yourself, and move on. For someone like myself who > > absolutely hates controversy and confrontation, this is about as an > > unnatural way to be as I can imagine. But it works. > > > > As bad as it sounds, " harsh " works. It aggrivates, it frustrates, > > it stings, and it hurts, but it motivates. You either set out to > > prove it right, or prove it wrong, but you do something. > > Wishy-washy maybes and could-bes allow you to sit in limbo, > > paralyzed to move left or right. We are all so insecure because we > > feel responsible for " letting " this happen, that we lose the > > ability to trust ourselves to make good choices....finding the > > right doctors, doing the research, knowing when we know enough and > > knowing when we only know enough to be dangerous. > > > > We have to start thinking of our children's health as being on > > fire. You would never leave your child burning sitting around > > feeling bad about why they are on fire, wondering how it happened, > > debating what you should do if anything, engaging in arguments as > > to whether they are really on fire at all or if they were meant to > > be burning, and thinking the whole time oh, isn't it just so sad > > and painful....NO! You would grab that child, wrestle them to > > floor, douse them in water, wrap a blanket around them and rush > > them to the emergency room! You would act! > > > > " Harsh " doesn't have to be " mean " . It just has to be firm. Could > > have wrapped up her message a little nicer? Sure, of course. > > But do I agree with it? Absolutely, 100%. I could have started > > recovering my daughter 2 years prior to when I did if someone had > > said that to me....instead, I got " wait and see " ... " not all kids > > develop the same way " ... " don't compare her to her brother " ... " all > > kids get lots of ear infections " .... > > > > So, I'll reiterate what she said, " If you think something is > > wrong...it probably is. " We're moms. We know. And we can get our > > kids better when we do. > > > > > > > > > > > > > > > > -------------- Original message -------------- > > From: Liz <lizlaw@...> > > I meant to chime in about the post on and her message. > > I > > think it was Kris who said she just comes across so negative with > > her > > " If you think something is wrong with your child, there probably > > is. " I > > agree...nothing like scaring everyone to get your message across. I > > can > > empathize with on this, one of the dark days when I am so mad > > at > > all the " No, Liz, she's fine...he's fine... " My children are not > > fine > > and it makes me mad that now that I know that I still have an > > uphill > > climb. I am grateful to know, relieved things are not worse and > > fearful > > they could get that way if I do not find a medical doctor > > experienced > > and knowledgable enough to help me sort this out. As a result I see > > > > where is coming from but that is not the message that can be > > linked to autism, apraxia, and all the other results of > > malabsorption if > > we are to get anywhere. I think the message needs to be, if you > > think > > something is wrong with your child, trust your mommy gut, ask > > questions > > and do not stop until you know what it is. Here are some resources > > to > > help, followed by questionnaires that address common culprits and a > > list > > of medical personnel who have helped others in a safe and timely > > fashion. It is not enough to have a worthy cause. The message needs > > to > > be palatable if we are ever to get anywhere. > > > > Just my 2 cents:) > > L > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2007 Report Share Posted September 14, 2007 - The one thing I can tell you is that Dr. Weiss is the right guy at Sloan for CLL. You should be able to communicate with him. Get heavy, and insistent. My opinion (a patient's opinion!!!) is to continue pouring Rituxan into a non-responding CLL patient is not very useful. Campath is probably a much better shot. I am not enthusiastic about any of the other chemos you mention. And splenic irradiation will not help. Dr. Furman has done very well with treating very sick patients with HuMax. You would need to check with Sloan whether they do that. The squeaky wheel gets oiled!!! Coming down from ME can't be fun. Water under the bridge, but there was nothing available in Boston? Best, keep us posted. See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 , as always you have such helpful information. I can see why there is no 'one' cure for migraines. there are so many different kinds. thanks for all the information on zinc. I was tempted to buy "sweets" for dessert yesterday for after dinner, but instead, I bought different types of fruit & nuts. I'm trying to get into a new "healthy" habit for my kids to learn. thank you hugs Rose Hahn <kimberlyhahn@...> wrote: rose, sorry for the delay...been gone all day. kinda tuckered out. as are we all, i imagine. anyhow, first off...if someone is determined enough to say on the news that something helped their migraines...then it probably did. it may help several people with their migraines. it depends on what is causing your migraine/headache/cluster headache...and the multiple other types of headaches their are. pumpkin seeds are a god source for zinc. maybe this individual was zinc deficient. many of the deficiencies can result in headaches, even migraines. i have been doing the most research on holistic nutrition and macrobiotics lately. one way to identify if you are zinc deficient, is by looking at the tongue...do you have red dots on your tongue...they aren't swollen, although they can be, i guess...but they look like any normal taste buds...but they are red. this is one sign of zinc deficiency. my daughter and i both have this. (deficiencies are a huge issue for our disorder...and it is well-documented that multiple deficiencies are a part of it as well). anyhow...there is some difference to suggested amounts of zinc to supplement. i would ask someone at your health food store if they can give you some info on it. some stores have an individual that they will direct questions to, i would inquire about that. i'm trying to learn which foods are rich in which vitamins/minerals. this is quite the task for me. but until i learn which foods to use in place of the supplements...i use the supplements, and keep researching. i have my daughter on 10mg of zinc once daily (she is 13). i am taking 50mg of zinc daily (i'm not 13 ;O). i would try to identify each individual headache that you have...try to have a "protocol" list that you go through to help yourself. you'll begin to know yourself very well. now deficiencies take time to become a problem state. so you can't expect that the problem will be instantly resolved. when i was sodium deficient...we had to supplement with 4 Liters of electrolyte for 2 years before i suddenly didn't need it anymore. the body is truly amazing...you can go without something that you need, for quite some time...and your body will compensate. it's when your body has been pushed beyond its limits, or it has used up the reserves, and is suffering in new ways...like calcium from the bones, and magnesium from the bones, for only a couple of examples. so you can't expect that if you take a supplement for a few days or weeks, that you will be able to reverse the effects of a deficiency that has most likely taken years to reach a symptomatic situation. the trick is identifying the deficiencies. that's part of what i'm trying to learn right now. especially when magnesium alone, only has 1% detectable in the blood...how can you possibly tell anything acurately by THAT standard. there are ways to test for it...but i need to re-read them a few more times, as they are complex. NOT something that you'll get your regular MD or GP to do for you, clearly. some days it's a wonder they get a referral done properly, much less something as complex as "something not instructed to them by a drug pusher...i'm mean drug rep". pardon my slip there. c'est la meme chose, to me. (it's the same thing). anyhow...i hope that answered your question. yes, it probably worked great for that person. yes, it could be what is causing your headaches too. or some of your headaches at least. but, i would say that you should take note of headache types, conditions of the environment that you are in (room temperature/humidity/etc...), as well as your symptoms (did you feel flushed? were your ears red? was it in your eyes or temples? did you notice 'tight neck muscles'?), and what you were actively doing at the time (were you sitting at a computer for 10 hours non-stop? were you painting the ceiling, above your head all day? have you had any water all day? did you have anything to eat all day?) keep track of the patterns that YOUR body has for headaches. i have more than one type, and every single type is incredibly consistent. if the room temperature is 69 degrees or above...i will get a cluster headache. the temperature of the room does not allow my brain to cool. and i gradually get agitated, and uncomfortable, and i start to have a mild headache, and it doesn't go away with any of the "usual suspects" for treatment. i NEED to get that room temperature down (visiting stores is difficult), and i NEED to cool down my brain, or i'm in for a 3-day he\\ !!! but let me tell you...i'm better off for knowing what these are now, and what causes them, and how to control them...than i was before, just being debilitated by them. my first major cluster headache of this kind...i was 18 years old, and it was summer. i remember vomiting 10 times, every 30 minutes, and nothing but bile and dry heaves...i had gotten so ill from the headache, and nothing to take for it, not even tylenol...but it wouldn't have even worked, as it was the heat that was doing me in. i'm tired and rambling...i'll finish this up for now. as i am able, and have info to share...i'll continue to post to the board. hope this helps you rose. hugs to you, ~k ( ) question to Hello ,I just heard on the news about eating pumpkin seeds help stop migraines. Do you find any truth on this?. I know that there were some parents which posted their children get migraines. If this does help, I bet pumpkin seeds would make a good snack, while helping get rid of those headaches.(this was on channel 2 news)Rose .,_._,___ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 - Holy crap girl, i just had one done. Their very painful (to me) but i knew my vent was right there if I needed it. It was very VERY hard to breathe and the whole test took 4-5 hours of a hard hard xray table that literally made me so sore i cried. My health has declined since moving to the nursing home- but I'm busting loose SOON!! MERRY MERRY CHRISTMAS! J & J ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
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