Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Welcome Cammie! I will be looking forward to reading about your little girl. My youngest son, Neil has down syndrome. He is 7 1/2 months old. He is having Heart surgery on Monday. He doesn't have any other health issues that we are aware of. I have 3 other kids, ages 18,15 and 10. My oldest just graduated from high school. I feel old, but my daughter says I have a baby, and that keeps me young! Keep us posted. Take care, Pat T (Neil's mom~av canal repair scheduled June 25) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Hi Cammie and welcome to the list :-)Congrats on the upcoming adoption of your new daughter. I have nothing but admiration for those who chose this path. I was drafted ;-) though very happily. She doesn't know how lucky she is to have a SLP for a mom. That is really going to come in handy and I am sure she will also teach you a lot that will make an even better SLP in the long run. Carol V posted this url before you started and I think you would really love it- http://www.hearingjourney.com/listening_room/index.cfm?langid=1Also if you have AIM, I have some speech/language items in my file share you are welcome to. Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 In a message dated 6/22/2007 12:51:20 A.M. Central Daylight Time, heather371@... writes: I sent an intro through, did it not come through? heather I just responded. AmySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hi. I'm new too. I've also had to deal a lot with the way I tend to get treated by people because, unless I'm in a really bad spell with my disease (like now), I don't "look sick". Its hard to deal with, isn't it? Its like you just wanna shake people sometimes, and say "hey, you can't see inside me"! Wishing you and your family better times, and at least stabilization of your medical probs. Amy In a message dated 6/20/2007 10:03:56 P.M. Central Daylight Time, heather371@... writes: Hello, I'm , 36, married, 2 step kids 3 furbabies, live in Wisconsin. I'm a hodgkins lymphoma stage 4a survivor. I am left with a 60% lung capacity, copd, and pulmonary fibrosis. I also have Lymphedema and Rsd from the cancer and from a biopsy. I also have a Vestibular disorder, with rotational vertigo. I have epilepsy. Partial Complex, and Myoclonic. I am so tired of people not realizing people with NON visible disabilites can be disabled too. I am on SSD. I cant work anymore or drive anymore. My husband had two back surgeries, hurt himself on a previous job. He now has a metal cage in his back. He has had difficulty finding a good job. He works part time. He has many restrictions. So, a little intro on me, thanks for having me in the group. hugs heather See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Dear Amy, I have a new bumpersticker on my car. It's from an organization that represents people with 'hidden' disabilities. It says " I know I LOOK great, but looks can be deceiving. " Then it gives the web address for the group that represents people like us. I will try to remember to get that website for people who might be interested. I got tired of dirty looks as I parked in handicapped spaces - even though I had the proper tag. Same thing with the riding carts at the grocery or Walmart. I'm only 53 and they look at me like why are YOU riding that. ; ) Willow --- juxtaposed4vr@... wrote: > > Hi. I'm new too. I've also had to deal a lot with > the way I tend to get > treated by people because, unless I'm in a really > bad spell with my disease > (like now), I don't " look sick " . Its hard to deal > with, isn't it? Its like you > just wanna shake people sometimes, and say " hey, you > can't see inside me " ! > > Wishing you and your family better times, and at > least stabilization of > your medical probs. > > Amy > > > > In a message dated 6/20/2007 10:03:56 P.M. Central > Daylight Time, > heather371@... writes: > > Hello, > > I'm , 36, married, 2 step kids 3 furbabies, > live in Wisconsin. > > I'm a hodgkins lymphoma stage 4a survivor. I am > left with a 60% lung > capacity, copd, and pulmonary fibrosis. I also > have Lymphedema and Rsd from the > cancer and from a biopsy. > > I also have a Vestibular disorder, with rotational > vertigo. I have > epilepsy. Partial Complex, and Myoclonic. > > I am so tired of people not realizing people with > NON visible disabilites > can be disabled too. I am on SSD. I cant work > anymore or drive anymore. > > My husband had two back surgeries, hurt himself on > a previous job. He now > has a metal cage in his back. He has had > difficulty finding a good job. He > works part time. He has many restrictions. > > So, a little intro on me, thanks for having me in > the group. > > hugs > heather > > > > > > > > ************************************** See what's > free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hello Amy, I'd really like to have the web site addy for that organization and I'd love to have the bumper sticker. I've actually encountered harassement because I sometimes need to park in the handicap stall. HUGS > Dear Amy, > > I have a new bumpersticker on my car. It's from an > organization that represents people with 'hidden' > disabilities. It says " I know I LOOK great, but looks > can be deceiving. " Then it gives the web address for > the group that represents people like us. I will try > to remember to get that website for people who might > be interested. I got tired of dirty looks as I parked > in handicapped spaces - even though I had the proper > tag. Same thing with the riding carts at the grocery > or Walmart. I'm only 53 and they look at me like why > are YOU riding that. > > ; ) > > Willow > > --- juxtaposed4vr@... wrote: > >> >> Hi. I'm new too. I've also had to deal a lot with >> the way I tend to get >> treated by people because, unless I'm in a really >> bad spell with my disease >> (like now), I don't " look sick " . Its hard to deal >> with, isn't it? Its like you >> just wanna shake people sometimes, and say " hey, you >> can't see inside me " ! >> >> Wishing you and your family better times, and at >> least stabilization of >> your medical probs. >> >> Amy >> >> >> >> In a message dated 6/20/2007 10:03:56 P.M. Central >> Daylight Time, >> heather371@... writes: >> >> Hello, >> >> I'm , 36, married, 2 step kids 3 furbabies, >> live in Wisconsin. >> >> I'm a hodgkins lymphoma stage 4a survivor. I am >> left with a 60% lung >> capacity, copd, and pulmonary fibrosis. I also >> have Lymphedema and Rsd from the >> cancer and from a biopsy. >> >> I also have a Vestibular disorder, with rotational >> vertigo. I have >> epilepsy. Partial Complex, and Myoclonic. >> >> I am so tired of people not realizing people with >> NON visible disabilites >> can be disabled too. I am on SSD. I cant work >> anymore or drive anymore. >> >> My husband had two back surgeries, hurt himself on >> a previous job. He now >> has a metal cage in his back. He has had >> difficulty finding a good job. He >> works part time. He has many restrictions. >> >> So, a little intro on me, thanks for having me in >> the group. >> >> hugs >> heather >> >> >> >> >> >> >> >> ************************************** See what's >> free at http://www.aol.com. >> > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives-/messages > > Chat:- Scheduled Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > -unsubscribe > > This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician. > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Edited to trim... Kendra <kendra@...> wrote: Hello All, Just re-joined the list. For those who don't know me, my name is Kendra Kirkham and I am a practicing aromatherapist/educator from the UK. <snip> Looking forward to discussions with old friends again. Best Wishes to all, Kendra www.cropwatch.org Hello Kendra I know Tony very well, I like his commitment to speak his truth to save essential oils from non sense bureaucracy. Welcome! Best wishes Barbara Olioso Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 edited to correct topposting... >Hello Kendra I know Tony very well, I like his commitment to speak his truth to save essential oils from non sense bureaucracy. Welcome! Best wishes >Barbara Olioso Thank-you Barbara, It is very nice to make your acquaintance and good to know that there is someone else here from the UK and that you also know Tony. I am aware that you and Tony know each other but I didn't realise that you were here. I am a newbie where Natural Perfumery is concerned as my training and passion is the therapeutic application of essential oils (practicing, teaching, writing about and saving from exploitation / over-regulation / misinformation etc..) but I see aromatherapy, TRUE aromatherapy (can define what I mean by that If anyone is remotely interested) as being a very new relative of perfumery and I believe there is a lot for aromatherapists to learn from perfumery. Tony is taking a break at the moment inc. Cropwatch but will appear back on the scene at some point soon. Just out of curiosity, anyone else from the UK here? Best to all, Kendra www.cropwatch.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Hi Kendra, Now I am curious to know what is TRUE aromatherapy. I might be thinking of taking a diploma in aromatherapy before taking a perfumery course. What do you think! Don't know what to do. But I've heard that having aromatherapy is easy to get into perfumery... I make my own perfumes just beginner! Thanks Angi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Hi Kendra, Now I am curious to know what is TRUE aromatherapy. I might be thinking of taking a diploma in aromatherapy before taking a perfumery course. What do you think! Don't know what to do. But I've heard that having aromatherapy is easy to get into perfumery... I make my own perfumes just beginner! Thanks Angi Hi Angi, A common definition of aromatherapy would go something like " the therapeutic application of essential oils to promote health, well-being and balance. " but as you may know several essential oils are facing current supply problems and the establishment of domestic trading circles within India & China, which excludes buyers from outside these countries, is causing some concerns for the mid-term. although the scale may be limted so far. The current supply situation in Europe too - where aromatic herbal crops have failed because of excessive temperatures - means inevitably that there will be shortages, and probably little in the way of genuine lavender & rosemary oil circulating fo example. It may be true therefore that increasing legislation & greater public awareness is creating greater expectations, better information etc leading to a requirement that standards be raised in aromatherapy. However, aromatherapy does not have a universally agreed definition, and how the word is applied has tended to depend on the interests of the individual / company using the word. Because essential oils are used in a wide range of commercial products including bath products (soaps, foam baths, bath crystals, shower gels, bath oils) skin care products, air fresheners, cleaning products, a plethora of scented products such as candles, warming cushions, the list goes on....and these products vary wildly in the percentage of natural ingredients contained in them yet many term their wares under the banner of " aromatherapy products " or suggest natural content and /or health-giving properties when there may be none or little) which to my mind is misleading for the reason that I and my peers (and I dare-say a significant number of the general public) associate aromatherapy with NATURAL PRODUCTS. Aromatherapy also has a somewhat elitist reputation that lingers in some quarters where some still believe that it is the stuff of beauty parlours and pampering. In the scientific world, some academics perform aromatherapy trials such as the one performed by Dr. Neil of UK's Middlesex University who subjected Sixty individuals to the experience of experimentally induced pain. via the cold-pressor test (commonly known as plunging ones hands into freezing cold water) whilst either smelling lemon essential oil, machine oil or smelling air with no purposely added odour reporting on the degree of pain they felt at 5 minute intervals. found that these unfortunate individuals smelling odours whilst suffering increasing pain reported significantly greater pain than did those in the control condition at 5 minutes, and at 15 minutes,individuals exposed to the unpleasant odor experienced greater pain than did the control group. concluded that " exposure to odors judged to be pleasant and unpleasant may not lead to pain relief. " When I originally communicated with before this paper was published, he was proposing to entitle his paper " The failure of aromatherapy? The effect of exposure to odour onthe perception of pain " . I am sure that I was not the only person to point out to him that (a) aromatherapy was not only concerned with the olfactory route, ( aromatherapists do not select essential oils at random without thought to their potential therapeutic effects and that © aromatherapy does not state that exposure to a pleasant odour will result in pain relief! His home page at Middlesex University disappeared for a short while and after it had re-appeared he subsequently published his paper " The Effect of Exposure to Odor on the Perception of Pain " without aromatherapy absent from the title. (but not before the press had had a field day using the Failure of Aromatherapy wording I dont know If he mentions aromatherapy at all ~ I am waiting for a reprint. Psychosomatic Medicine 68:613-616 (2006) In our article Naked Aromatherapy - the Truth Laid Bare Tony Burfield & Kendra Kirkham Aromatherapy Today Aug 2006, I have written more about defining aromatherapy, and about the non-term " Therapeutic Essential Oils " and Tony explores one of his favourite myths " Functional Group theory " still widely taught on aromatherapy courses and still defended by some chemistry teachers today on the grounds that in one case " I know it isn't accurate but It gives them some idea " (anonymous) In fact a read of the entire article (updated and re-published in the last Cropwatch newsletter Aug 07) is a good start to answering the question of what is true aromatherapy. I am so passionate about the subject it is difficult to try to precis all the issues connected to this question! but I'll try ~ Taking into account that in the U.S. the regulations pertaining to hands-on aromatherapy massage vary from state to state and indeed on a global level, traditional healing modalities and techniques vary from country to country (individual practitioners in the west employing a wide range of non-uniform techniques fuelled by a variety of belief systems and disciplines), I do consider that aromatherapy is a serious business and one that is not taken at all seriously by the media for understandable reasons ~ 1. Lack of proper self-regulation (or otherwise) 2. A concerted aggresive campaign against the naturals market by those who's interest it is to keep synthetics going ( ie the group " Sense about Science " and the like) They have got no chance now - the naturals ball has rolled too far on imo. 3. Poor training inc. lack of proper reference and deficient instruction in the evaluation of scientific papers, an apparent absence of curiosity to discover If something presented as fact is actually true, (serious in the case of safety issues and annoying in the case of ascribed unproven therapeutic effect)) an often strong bias towards profit, not realising that a good natural and professionally executed product that " does what it says on the can " (UK advert) will sell anyway........... and that is just the educators! (I will curb my desire to write 20 more pages on this issue) 4.Unforgivable misinformation passed on from teacher to teacher (in my experience) and from author to author in many cases ~ to the extent that certain myths are now deeply embedded in the human consciousness. 5. No descriptive language for odours (just one thing aromatherapy can take from perfumery) So by TRUE aromatherapy, I mean serious aromatherapy, ethically aware aromatherapy, informed aromatherapy, to be able to have a client leave in a better state than when they came. To be able to intimately understand the make-up and synergies of the products you use in relation to content, safety, ethics what your current client needs. To be able to understand the complex ateologies presented and to be actively involved in raising the standards and profile of aromatherapy if only by the way you as a therapist consider your training and in the way you work. As for what you should do ~ aromatherapy or perfumery......go with your heart - everything is inter-related at the end of the day. Many people go into aromatherapy from nursing, leave aromatherapy for reflexology, councelling, there are so many interesting things to study, I had to choose between aromatherapy and herbalism. It doesnt really matter which one you choose just choose one and dont have too fixed an idea where you might end up - you'll find your place If you follow your heart, trust me X Before I sign off I would like to say that through my many experiences of being subjected to bad aromatherapy teaching, I have also been priviledged to study for varying degrees of time with some real gems. The trick is being able to tell the difference and the way to do that is to trust your gut instinct and to see what works for you. Hope that gives some answer to your question.. Best, Kendra www.cropwatch.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 On 17/08/07, perfumenatural <perfumenatural@...> wrote: > I might be thinking of taking a diploma in aromatherapy before taking > a perfumery course. What do you think! Don't know what to do. But I've > heard that having aromatherapy is easy to get into perfumery... <snip> > Angi Hi Angi If your interest is in aromatherapy then take an aromatherapy course, but dont look to this as an introduction to perfumery. Whoever told you that *having aromatherapy makes it easy to get into perfumery* is probably confusing pleasant AT blends with making true Natural Perfume. :-) As an aromatherapist I have actually found it HARDER to compose Natural Perfumes because I found so very many differences between the two Arts. Finding out how dilution affects how well my end composition turns out (as opposed to using full *drops* of every oil) was perhaps my biggest *break through*. If I hadn't come from an AT background that aspect would have been one of the first things I would have learnt. There is a lot for aromatherapists to *unlearn* when they venture into Perfumery - and just as much to learn. So if your main interest is in perfumery - then my advise would be to take a perfumery course. (Hi Kendra ~~~ <wave>) LLx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 .. But I've > heard that having aromatherapy is easy to get into perfumery... > Angi Hi Angi If your interest is in aromatherapy then take an aromatherapy course, but dont look to this as an introduction to perfumery. As an aromatherapist I have actually found it HARDER to compose Natural Perfumes because I found so very many differences between the two Arts. (Hi Kendra ~~~ ) LLx Hi Liz, Angie, Kendra Liz is right..... don't confuse the two.... same tree different branches. ..Aromatherapy is concerned with how the plant oils are used in heailing mind body and soul..... the emphasis is not on how it smells but on how it can enhance and heal........Kendra explained this beautifully.. Natural Perfumers look for sillage, and beautiful structure in a perfume and study to understand how this can be achieved by knowledge of dry down, nuance, accords,placement ... and are interested in how the plant oils interact with each other creating different aroma notes. Noticing how by adding a plant oil or resin how this can change the perfume.... the understanding of odor intensity and a light and deft touch of an intense odor to be able to use these 'bruisers' to enhance and exalt top notes or bring out a nuance in another plant. ie by adding touch of say heli to tuberose to bring out its rapturous sweetness....softening its hedonistic note. or using galbanum to great effect. Natural Perfumers constantly strive to create beautiful perfumes by blending from a mulititude of botanicals in various ways and methods to bring about a symphony or even a simple composition of perfect harmony.and beauty to the wearer..paying homage to the ancients but taking it to new contemporay hieghts..blessed with the new and exciting ingredients that this century can offer..... sometimes creating a clashing of notes to make something wild and dangerous....or even linear notes ... exploring the horizens constantly. I have been studying now for nine years and still feel I have barely scratched the surface.... it is a wonderful, satisfying and fulfilling profession. Liz is right ....look to your heart and soul and let that speak to where you want to go.... with every good wish , Janita pufumero http://www.hayspace.co.uk --------------------------------- For ideas on reducing your carbon footprint visit For Good this month. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Kendra Thank you so much for the very detail information. I believe it is very useful and important to all of us. I really appreciate the time you took to explain everything to me. :0) Angi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Thanks! You are right and it makes more sense to me because what I want is to create natural perfumes. I am a beginner and doing my own experiments even with tinctures and they seem to be so amazingly exciting. Really appreciated your help. Angi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi - I am new to the group too. I joined for my wife, who will be having her surgery on September 20th. We went with Dr Oh at St Francis hospital in Federal Way, WA. It sounds like the seminar you went to is a bit overpriced. St Francis offers the lap Band for $12,500. That includes everything - hospital, dr fees, etc. Also, they have an excellent follow up program. Dr Oh wants to montier his patients for the rest of their lives to make sure they dont become deficient in any vitamims, etc. Also, that fee includes your first three fills, then they are $120 ea afterwards. You may want to look into this before going out of the country for surgery. Good luck on whatever your journey - my wife Raven is excited about it as she has battled with weight loss all her life. Her goal is to loose 200 lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 and Raven, welcome to the list! I'd like to give you my 2cents on the doctor you have chosen. I had my band placed by him on April 11, 2002. I went to him because at the time he was one of the only band doctors in the area and he took my insurance. It sounds as if you're self pay and concerned about the price, which is a very valid concern. I think he's a competent surgeon, but I am not pleased with his bedside manner. He insists on his patients visiting him EVERY MONTH. He holds up a SHOT GLASS and says that's all you should eat for a meal. He doesn't want his patients having any dairy or sugar. He also treats bandsters as if they have the same nutritional issues as bypass patients, insisting on all kinds of supplements. He wants annual blood work done (I think this should be done by one's primary care physician, but that's just me). Through reading the Smartbandster boards, this isn't typical bandster advice. We can eat real food, all kinds of it. We don't need supplements other than a multivitamin because we don't malabsorb our food. My weight loss stalled at 100lbs because I hate going to see him. I would love to be able to change doctors, but most don't want to work with another doctor's patients. Think about the aftercare and the follow up. It does count. I'm sure he has lots of happy and very successful patients, but I'm not sold on him. And to the list, I apologize for having this discussion on this list. It should really be taken over to SmartBandsters, our parent list. Barb S in Monroe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Barb, You can go to a clinic in Arlington for your fills to continue your weight loss. They also have great information about your nutritional needs. They fill for any doctors pt. They are reasonable 150. for first fill and 125. after. Wonderful ladies there. Give them a call if you like 360-435-5365. The web address www.northwestfills.com . Hope this gives you another alternative. Barbooch <barbooch@...> wrote: and Raven, welcome to the list! I'd like to give you my 2cents on the doctor you have chosen. I had my band placed by him on April 11, 2002. I went to him because at the time he was one of the only band doctors in the area and he took my insurance. It sounds as if you're self pay and concerned about the price, which is a very valid concern. Jill S. 358/285/160?? 12-09-06,Dr.Kuri Your only as good as you think you can be! This too will pass! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi ne, Banded in Mexico and had a GREAT experience and would recommend it to anyone, even family (which I have). The doctors in Mexico have been doing bands much longer than US doctors. The hospital was extremely clean and was an overall great experience. When your ready for fills there is a clinic in Arlington that will do them for you if you want. I do believe we should go back to Mexico once a year for a fluoroscope just to check the band and make sure all is well. But I do believe that the clinic is offering fills with flouro now also. www.northwestfills.com they also do pre-op and post-op teaching. Good luck!! Jill ne <summerfield2@...> wrote: Hi there, I am new to this group; in fact it is a pleasant surprise to find such . I have a surgery date in mid-October with Dr. Jill S. 358/285/160?? 12-09-06,Dr.Kuri Your only as good as you think you can be! This too will pass! --------------------------------- Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 hi adriane i had surgery on 8-29-07 and am doing great. my surgery was done in tijuana by dr lopez-corvallis and am telling everybody about the great experiance. most people dont know dr lopez-corvollas was the first doctor to install the lapband as a guest doctor at legacy goodsameritan back in 1999 i also heard dr pattersons lecture and found dr lopez was better due to his experience and training. also my insurance ods wouldnt pay. I payed 8,000.00 mike cramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi , nice to meet you! My name is , am 25, have LQTS and was diagnosed 02/2006 which is when I received my ICD. So you never had any fainting spells? Did your doctors give you the ICD as a precaution? I would like to check out your brother's film, that is a great accomplishment! How many people in your family have LQTS? As far as I know, I am the only one in my family! Welcome to the group, you will meet a lot of great people here! in Minneapolis, MN (formerly Sacramento, CA) <briansutch@...> wrote: Good morning everyone,Just wanted to introduce myself because I'm new here. My name is, I'm 26 and live on Long Island, New York. I got an ICD onMarch 9, 2006 after being diagnosed with Long QT Syndrome. I've neverhad any symptoms, and haven't gotten any use out of the device yet(knock on wood). My aunt, who was diagnosed around the same time asme, had her ICD go off for the first time earlier this week, so Iguess that is reassuring in a way.I'd also like to mention that my younger brother, who also has LQTSand an ICD, was recently honored by the Long Island International FilmExpo for a documentary he made about our family's history with LQTSand his ICD implantation. It's called "Broken Hearts, ElectricShocks," and it was named "Best First Film." You can learn more aboutit here:http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile & friendid=48200217- Catch up on fall's hot new shows on TV. Watch previews, get listings, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 , Thank you so much for the video of QT. What a blessing for you and your little girl cousin. Our sufferring is redeemed when it saves someone else, it gives us a purpose to continue to fight for our lives. A heart sister, Bella <briansutch@...> wrote: Good morning everyone,Just wanted to introduce myself because I'm new here. My name is, I'm 26 and live on Long Island, New York. I got an ICD onMarch 9, 2006 after being diagnosed with Long QT Syndrome. I've neverhad any symptoms, and haven't gotten any use out of the device yet(knock on wood). My aunt, who was diagnosed around the same time asme, had her ICD go off for the first time earlier this week, so Iguess that is reassuring in a way.I'd also like to mention that my younger brother, who also has LQTSand an ICD, was recently honored by the Long Island International FilmExpo for a documentary he made about our family's history with LQTSand his ICD implantation. It's called "Broken Hearts, ElectricShocks," and it was named "Best First Film." You can learn more aboutit here:http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile & friendid=48200217- Looking for a deal? Find great prices on flights and hotels with FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi , Our 13 year old son was suspected of LQTS this summer, but after extensive testing, they determined that they want to check him annually in the genetic arrythmia lab at our local Children's Hospital. They cleared him for sports, so I am hoping that they are correct. He is a swimmer and baseball player. He had one fainting episode, and there are a couple of male cousins that faint, but have not been diagnosed. His dad had an ICD implanted in July, 2007 for cardiomyopathy, that occurred after a virus. I couldn't get the clips to play from his my space, but I'll see if they will run at home. It's nice to meet you. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi , Yeah, I've never had any fainting spells or anything. A lot of people in my family have had seizures and blackouts, but not me. They considered me a good candidate for it though, because we've had 2 sudden deaths in my family: my aunt at age 13 in 1980, and my dad at 39 in 1995. We all took a genetic test in October of 2005 and I tested positive, along with my brother and sister, my aunt and a few cousins. My uncle and his son were already diagnosed. About 5 of us got ICDs within a few months of eachother. Plus there are a lot more in the extended family. With all the madness in my family, I'm so surprised to hear you're the only one in yours. I guess that's a good thing though! - > Good morning everyone, > > Just wanted to introduce myself because I'm new here. My name is > , I'm 26 and live on Long Island, New York. I got an ICD on > March 9, 2006 after being diagnosed with Long QT Syndrome. I've never > had any symptoms, and haven't gotten any use out of the device yet > (knock on wood). My aunt, who was diagnosed around the same time as > me, had her ICD go off for the first time earlier this week, so I > guess that is reassuring in a way. > > I'd also like to mention that my younger brother, who also has LQTS > and an ICD, was recently honored by the Long Island International Film > Expo for a documentary he made about our family's history with LQTS > and his ICD implantation. It's called " Broken Hearts, Electric > Shocks, " and it was named " Best First Film. " You can learn more about > it here: > http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile & friendid=482002\ 17 > > - > > > > > > > --------------------------------- > Catch up on fall's hot new shows on TV. Watch previews, get listings, and more! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi : I'm Leah 27 years old. I have had my ICD since I was 21 but had another put in at the age of 24 because it was bothering me. I have cardiomythopy. Welcome to the group. Leah <briansutch@...> wrote: Hi ,Yeah, I've never had any fainting spells or anything. A lot of peoplein my family have had seizures and blackouts, but not me. Theyconsidered me a good candidate for it though, because we've had 2sudden deaths in my family: my aunt at age 13 in 1980, and my dad at39 in 1995.We all took a genetic test in October of 2005 and I tested positive,along with my brother and sister, my aunt and a few cousins. My uncleand his son were already diagnosed. About 5 of us got ICDs within afew months of eachother. Plus there are a lot more in the extendedfamily. With all the madness in my family, I'm so surprised to hearyou're the only one in yours. I guess that's a good thing though!-> Good morning everyone,> > Just wanted to introduce myself because I'm new here. My name is> , I'm 26 and live on Long Island, New York. I got an ICD on> March 9, 2006 after being diagnosed with Long QT Syndrome. I've never> had any symptoms, and haven't gotten any use out of the device yet> (knock on wood). My aunt, who was diagnosed around the same time as> me, had her ICD go off for the first time earlier this week, so I> guess that is reassuring in a way.> > I'd also like to mention that my younger brother, who also has LQTS> and an ICD, was recently honored by the Long Island International Film> Expo for a documentary he made about our family's history with LQTS> and his ICD implantation. It's called "Broken Hearts, Electric> Shocks," and it was named "Best First Film." You can learn more about> it here:>http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile & friendid=48200217> > -> > > > > > > ---------------------------------> Catch up on fall's hot new shows on TV. Watch previews, getlistings, and more!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 brian welcome to the group it's so neat that your brother did such a wonderful film and was reconized so highly sorry to hear so minny of your family have lq and needed a icd anyways just wanted to welcome you to the group ! stacie,24 shockign life for shocking people ! <briansutch@...> wrote: Good morning everyone,Just wanted to introduce myself because I'm new here. My name is, I'm 26 and live on Long Island, New York. I got an ICD onMarch 9, 2006 after being diagnosed with Long QT Syndrome. I've neverhad any symptoms, and haven't gotten any use out of the device yet(knock on wood). My aunt, who was diagnosed around the same time asme, had her ICD go off for the first time earlier this week, so Iguess that is reassuring in a way.I'd also like to mention that my younger brother, who also has LQTSand an ICD, was recently honored by the Long Island International FilmExpo for a documentary he made about our family's history with LQTSand his ICD implantation. It's called "Broken Hearts, ElectricShocks," and it was named "Best First Film." You can learn more aboutit here:http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile & friendid=48200217- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.