Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Hello Ree, Don't worry at all, about the length of your messages. Sometimes (as I've been reminded) my messages are so long, they're the size of a small jpg. file! Studies have proven that writing/talking about the things that are troubling you, including chronic illness, is beneficial for coping with it. I think that includes us, as parents whose children have a chronic illness. As has been mentioned here before, I think a lot of times ~especially if our children are young~ that we worry more than they do about their JRA. They make the most of it, doing whatever they can and living as normally as possible, not thinking much about the disease. We, on the other hand, worry about the medicines they may need, effects on their bodies, all sorts of related issues. So, if you ever feel like you have to vent and talk to somebody about any of this, you've found the right place to do it. We're all in the same boat You know, when my son Josh first started having arthritis symptoms, I thought it was the very same thing: growing pains. I don't remember ever having any when I was a child, but you hear enough about them that I thought that must be what he's having. I never in my wildest dreams would have believed it was the first pains of arthritis. Like your son, he also had leg pain and difficulty walking. And the pain travelled to different parts of his body, too. If you want to, you can read more about our story at: http://www.geocities.com/Heartland/Village/8414/ on the history page. I know it's easier said than done, but please try not to feel guilty about any of this. It's not anybody's fault. Sometimes it just happens, often to the best of people, and you just have to do your best to handle whatever happens as a result. It does get somewhat easier over time. A good first step is to begin learning as much as you can about JRA. This email list can help with that, by putting you in contact with other people who are very knowledgable and who have had similar experiences dealing with JRA. I also post any relevant rheumatology research that I find online, to help us sort through the maze of treatments and current medical opinion. I'm happy you've found our little group. If you have any questions, just ask. Also, keep us posted on how Mikie is doing, okay? Take care, Georgina Ree Whitman wrote: > Hi all, > I am sorry if this is way too long for this list. > > Hi My name is Ree and I have two children ages 5 and 7. Perhaps you > should go and get a cup of coffee or whatever before you read my email. > I can't believe I am writing to someone (let alone a group) I have never met and > telling you about my life but I feel lost and I have to figure out what is > going on > with my son. He is 7 years old. About a month ago he started > complaining about his legs and feet hurting. Our first thought was > growing pains as he would complain most when he first woke up or at > night. My husband is tall and said that he had a lot of pain in his > legs growing up and that is what he was told it was. Well this went on > for a few weeks. Mikie would complain that his legs hurt walking > (uphill) to school. I thought, he just didn't feel like walking (he > wanted a ride) or didn't want to go to school. Boy do I feel guilty > now. Anyway, one day he woke up and started crying saying that his hip > hurt and asking me why does he always hurt. He then told me he has > trouble in school bending over and walking sometimes. I immediately > call the ped. and my husband took him in. They did blood work and the > set rate was elevated. They thought it may be false positive so they > did another series and wha-laa it was too elevated. Mikie did not have > any rashes or fever. They said that the red blood cells were not over > the top and to keep an eye on him. Give him Advil if pain starts again. > A week went by and he was pain free. I did not give him any Advil. > Well 5 days ago he woke up and had trouble walking. His pain was > unbearable. He was limping and could only lean on one toe of the foot > that hurt. He knee and front of his leg hurt. I called the ped again > and we took him in. The Dr. said that his knee was swollen. (I did not > notice that as it was not hugh and felt guilty AGAIN) He prescribed > Naproxen and an antibiotic for his sinus infection. More blood work was > in order to test for Lymes disease and I also got a referral to make an > appt. with a Rhumatologist (sp?) at Children's Hosp. in Washington D.C.. > This appt. is this coming Thursday. The Dr. wanted me to see the chief > of Rhumatology but she was book till March so we are seeing her assoc. > I am at my wits end. Today Mikie said his knee feels better and he can > put some weight on his foot but his shoulder is starting to hurt. Poor > kid is only 7 and was born 12 weeks earlier. He had such a rough > beginning as he was so sick and they were not sure he would make it. I > always felt guilty about his premature birth even though I really did > not cause it but I always wonder. > > We should have the last blood work results tomorrow. > > Well, thanks for letting me bend your ear/eyes. I have contacted the > Arthritis foundation for info .Do you know of any other email discussion lists? > > By the way ..thanks for a great web site it gave me lots of info I was > looking for. > > Thank you so much. > Ree Whitman in land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Ree: Welcome. Nothing to feel guilty about. JRA is hard to diagnose. Some kids go months or longer without getting a proper diagnosis. The important thing is to get a proper diagnosis and treat aggressively early on in order to minimize any long term joint damage. Good luck. Charlie _______________________________________________________ Get 100% FREE Internet Access powered by Excite Visit http://freeworld.excite.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Debbie -- HANG IN THERE!!!! I might also suggest you join some low-carb lists, if you haven't already, to get ideas about things to eat and " tricks " of low-carbing. Some of the advice will not be ok for you because of the candida, but people vary so much that no list is going to always provide great answers for everyone on it. One I recommend is 's LOWCARB-BUDGET, which is support, recipes, suggestions, talk, ideas, etc. geared toward the less extravagant methods of low-carbing. Another good list is 's LOW-CARB-RECIPE-EXCHANGE which is more recipes, but also question/answer, support, etc. It is a much higher volume list than LOWCARB-BUDGET, and I have to admit I sometimes get behind and pitch 100 messages without looking. Anyone else belong to any good low-carb lists? I think it would be helpful if we shared our recommendations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Thanks for your support. I was a mess yesterday and am hoping today will be better. The wind was bad here and pollen was in the air and I'm hypersensitive I think because I've been deviating from the diet. It seems the best thing for me is the diet, and supplements and diflucan do not work for me unless I am following the diet as well. The doctor says that it's hard for me to even absorb the thyroid medicine if I am not digesting food efficiently. Anyway, you would think that all of this would be motivation enough but sometimes it is not, especially when I am under a lot of stress, or when I get hungry and haven't prepared something ahead of time. Thanks--I think I will try the low carb message board. Hopefully soon I will be in a place to where I can support others in this way. Have to stop feeling sorry for myself " poor me " because people on regular diets can cheat once in a while with no ill effects. Best regards to all, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 " Going to get to the dentist next month to see about the last of my mercury fillings. Has anyone had any luck with that? " I had all my amalgam fillings replaced about six years ago, using all the correct protocols to avoid further exposure at the time and doing chelation. It was very expensive and I can't say I have noticed any benefit whatsoever. My teeth have been weakened by having to be drilled out to replace the fillings and are now much more trouble than they used to be. One has had to be crowned because it cracked after having the white filling put in. So, no, I can't recommend it. Best wishes Gerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Get a life. People on " regular diets " (low-fat/high-carb) are creating ill effects for themselves ALL THE TIME THEY ARE ON THEIR DIETS!!!! ----- Original Message ----- Have to stop feeling sorry for myself " poor me " because people on regular diets can cheat once in a while with no ill effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 > Anyway, you > would think that all of this would be motivation enough but sometimes > it is not, especially when I am under a lot of stress, or when I get > hungry and haven't prepared something ahead of time. I have the same problem! I recently joined 2 food preservation lists, so I can learn how to cook my own food " ahead " , instead of using processed foods: More info about freezing: frozen-assets/ Subscribe: frozen-assets-subscribe More info about preservation methods in general: CreativeCanningCuisine/ Subscribe: CreativeCanningCuisine-subscribe Don't be intimidated by the notion of " putting up " food... these lists are not filled with stereotypical blue-haired grandmas who have nothing better to do and assume that you don't either, lol! There are lots of people who just make a double or triple batch of whatever they are cooking, and put up the rest; after doing that a few times, you'll have a " stash " of food to use on days you can't/won't cook. Although there are not a lot of low-carb recipes on either list, many of the people on the lists joined them to get away from unhealthy processed foods... so there are still plenty of healthy, whole-food recipes being posted. There are also tips about what keeps well and what doesn't, and how long stuff will keep. Both of these lists average 20-30 messages per day... I don't find it to be a problem, but some people feel a need to be on digest for that high of a volume. But either way, it's worth the effort -- you eat healthier *and* end up saving $$! HTH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 I'm on a low carb foodlog list that is awesome. Lots of support including non-eating support. To subscribe, send an email to foodlog-subscribe@... Deana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hello Jenn, Welcome to the group......I've been here about a year now and learned more than I can tell you. The info on here, the experiences that these members go thru, will be of a great help to you I am sure. Please feel free to ask questions, these members are great at helping out others. I started here because I wanted to help my step son. (who has a rare form of candidiasis) I am happy to tell ya that he is doing 90% better than he was and I can thank this forum for the improvement in his condition. By the way .....I turn 40 (for the first and last time) on July 20 th......hahahaha Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 anyone know how to get off this list? --- RubeeRed002@... wrote: > Hello Jenn, > Welcome to the group......I've been here about a > year now and learned more > than I can tell you. The info on here, the > experiences that these members go > thru, will be of a great help to you I am sure. > Please feel free to ask > questions, these members are great at helping out > others. I started here > because I wanted to help my step son. (who has a > rare form of candidiasis) I > am happy to tell ya that he is doing 90% better than > he was and I can thank > this forum for the improvement in his condition. > By the way .....I turn 40 (for the first and last > time) on July 20 > th......hahahaha > > Angie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Welcome Jenn! I am new here too! Did anyone ever tell you to help upper respitory stay away from milk products!!! My son was supposted to be in and out of hospitals because he had upper respiratory problems at birth. I adopted him when he was 6 weeks and said I would stop milk and he would be fine...he never had respiritory problems again! I had strep throat 9x per year for 6 years!!! Got off milk and have been fine as far as step goes ever since! Now the antiobiotics 9x per year created a hole other ball game for me!!! And that is why I am here! Actually my son has down syndrome, and autism. I believe the diet is a God sent to him! he is socializing now making eye contact, and playing with us all like never before! Cheers! Pamela! > I just found this group last night, and can't tell you how excited I am that > I did. > > I got bronchitis in 1998, and had to have two rounds of antibiotics, and > developed asthma, and had to have two breathing treatments in the ER, as > well as be on a steriod inhaler. Not long after that I had trouble walking. > My doctor told me it was nerve damage (?) and that I would just have to live > with it. Within a year, when I was having a good day, I could walk as far > as the bathroom using a walker. Being in my 20s at the time, I couldn't > bear to face life like that. Thankfully I developed a bladder infection > because of an ER visit, and told a friend when he visited to bring me a > couple cups of yogurt (knowing that antibiotics can cause yeast infections.) > He, being the nerd that he is, brought 30 cups of yogurt in all differnt > brands and flavors saying " I didn't know what you might like " . With money > so tight I felt that if there was food in the house, I should try and eat > it. I joke with him he may have saved my life. I started getting better -- > not good but better. Some doctors thought I had MS and some thought I had > conversion, and I even had people try to plant false memories in me -- > saying I had been raped. I even had some people tell me I was being > attacked by demons. >:-( > > I'd get better and I'd get worse. Finally in Feb. of this year, I talked to > a friend who works in the record business in Nashville. He has no medical > background, but told me it sounded as if I had yeast problems. I read up on > it, and I'm feeling better now than I have EVER -- even as a child. Kind of > sad it too me so long to feel good -- I turn 29 for the first time on July > 20. > > I still have my bad days. I ate a Mcs quarter pounder on Saturday and > felt sluggish and achey until last evening. > > So, I just wanted to introduce myself, give a little background, and tell > you how happy I am to find this group! > > Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 I use T3 in addition, yes. I was on 50mcg T4, 25mcg T3 and was doing great, then T3 went off the market. I switched to 100mcg T4, then 125mcg T4, and still feeling terrible, losing my hair, etc. Now my new, fabulous doctor has me on 75mcg T4, 25mcg T3. I am still waiting for my imported T3 to arrive, but I am sure that I will do better on it, as I used to. T3 is very safe if you are young and without heart problems. I am also a similar weight as you - well, I used to be until I went without T3 and turned into a water balloon. Anyway, I was 119lb and that was a good dosage for me. Jan > Hello all, my name is Chriss. > I was diagnosed Hypothyroid last February. I have to say this is the most > frustrating scary thing that has every happened to me. > I have been tested and re-tested for the past 5 years. > It was finally picked up by a Holistic prac. > After I was nearly bald! > I started out on Armour, and have switched to Synthroid with > better results but, not where I would like to be yet. > I'm still very tired all of the time and my hair and skin are just awful! > I read a post this morning from someone that said you should take > your weight in synthroid? is that true? I am on 100mcg. and I weigh > 122lbs. is anyone using T3 in addition? I have asked my Prac about > this but she says the " studies " on it are scary. > thanks for any input! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 does she mean like NEJM articles? I take Armour which has T3, T4, T2, T1, T0, and I guess there might be T6 & 7 too. You mnight want to do some research and find a more up to date doc. http://www.geocities.com/thyroide Gracia is anyone using T3 in addition? I have asked my Prac about > this but she says the " studies " on it are scary. > thanks for any input! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 gut healt depends on how you want to take it... Basically you can maintain the status quo and improve on it by eating fermented foods...that would give you the extra probiotic bacteria which is needed for a good gut flora...and the extra enzymes..plus fermented foods are pre-digested foods..they have already been partly broken down into simpler foods which are more digestable..For example the fermented cabbages would have the starches already broken down to simple sugars by the bacteria... But if you had chemo and you would like to feel like you are 40 then that requires a signifcant transformational effort and a significant change in eating lifestyle..that is a whole different ballpark game altogether... > > Hi all, > > Glad to have found this group. I'm a member of the Native Nutrition > group and am particularly interested in gut health. Have been making > fermented cabbage but not sure what the difference in that and cabbage > is. Would like to learn so as to heal my gut. Not sure what's wrong > except what comes with age and chemo. Am 61 so age was here but > accelerated by chemo it seems. > > Feel empowered when doing something known to be helpful. > > Thanks for any input. > > Parashis > artpages@... > zine: > artpagesonline.com > > portfolio: > http://www.artpagesonline.com/EPportfolio/000portfolio.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 My name is and my son has been diagnosed by the school to have AS. We are going to Riley in August to get a medical diagnoses. I have read a lot about AS, and every word describes . I am now homeschooling my children and looking for AS friendly places to go. gets in " meltdown mode " and I hate the stares from other people. I've even heard some people's comments about how my son is undisciplined. Depending on my mood that day I either ignore it or have a smarta$$ comeback. I have already been through the emotional process and now accept the fact. , mother of three Mamie 8 ADHD 5 AS Bethel 3 normal(so far) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2009 Report Share Posted June 30, 2009 , Welcome....this is a great group of people who are so supportive of each other. You will find loads of information, great sites to go to and all kinds of tips. People will give you advice...what they may do,etc. Nothing is written in stone and each children is different and reacts different. Do you see any signs or clues when you son is about to have a melt down.....keep an eye on him...you may see clues....the way he acts, eyes, facial expressions. Do certain places, noises, situations cause him to melt down. My son tends to melt down when he is tired and/or over stimulated. Keep a track....and maybe you can avoid these situations or get him away from these situations before he starts to melt. I think it is better not to say anything...people are ignorant and don't know when to keep their mouthes shut ....but I know exactly how you feel. I guess I might say something too. I know my ex-grilfirend ...she use to say...he needs more discipline...you spoiled him...and she angered me so ...that I went back at her (and I never ever did this). I actually told her she didn't know what she was talking about. Hang in there ...read as much as you can and keep posting..we are all here for you. Jan Janice Rushen "I will try to be open to all avenues of wisdom and hope" From: marye.long <marye.long@...>Subject: ( ) New here. Date: Monday, June 29, 2009, 9:25 PM My name is and my son has been diagnosed by the school to have AS. We are going to Riley in August to get a medical diagnoses. I have read a lot about AS, and every word describes . I am now homeschooling my children and looking for AS friendly places to go. gets in "meltdown mode" and I hate the stares from other people. I've even heard some people's comments about how my son is undisciplined. Depending on my mood that day I either ignore it or have a smarta$$ comeback. I have already been through the emotional process and now accept the fact. , mother of threeMamie 8 ADHD 5 ASBethel 3 normal(so far) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2010 Report Share Posted May 17, 2010 Hello. If you'll join me @ Twitter @ Mofmars333 & stand by for action us Moms, Mums & Dads have big plans to take back the health & well being our children. Also join me at Facebook, my name is Marsha McClelland. You can type my name into Facebook's search engine & look for my badge that says, I'm standing with Wakefield to set the record straight. If you scroll my wall there's many action alerts you can take. Look for the three ex pHARMa workers telling it like it is. Especially Virapen's confession, which is very important. I'm waiting for a call fom right now for an update & will be posing breaking news & updates on my wall. My wall was open for public viewing but I had to close it yesterday due to hackers breaking into accounts of others & posting to my wall as my friends, sending trojan horse viruses. You'll have to be asked to be added as a friend now because of that. I'm recruiting activists & we are many. Marsha > > I belong to the Natural Solutions Foundation and sign everything I come accross there but wondering if there is something I can sign here? Or what does this group do? Also how can I get in touch with Dr. Rima to interview for my current documentary film on alternative cancer healing/AMA & FDA being run by Big Pharma and CODEX? > > Thank you > ian jacklin > > > http://www.icurecancer.ning.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2010 Report Share Posted May 17, 2010 Hello. If you'll join me @ Twitter @ Mofmars333 & stand by for action us Moms, Mums & Dads have big plans to take back the health & well being our children. Also join me at Facebook, my name is Marsha McClelland. You can type my name into Facebook's search engine & look for my badge that says, I'm standing with Wakefield to set the record straight. If you scroll my wall there's many action alerts you can take. Look for the three ex pHARMa workers telling it like it is. Especially Virapen's confession, which is very important. I'm waiting for a call fom right now for an update & will be posing breaking news & updates on my wall. My wall was open for public viewing but I had to close it yesterday due to hackers breaking into accounts of others & posting to my wall as my friends, sending trojan horse viruses. You'll have to be asked to be added as a friend now because of that. I'm recruiting activists & we are many. Marsha > > I belong to the Natural Solutions Foundation and sign everything I come accross there but wondering if there is something I can sign here? Or what does this group do? Also how can I get in touch with Dr. Rima to interview for my current documentary film on alternative cancer healing/AMA & FDA being run by Big Pharma and CODEX? > > Thank you > ian jacklin > > > http://www.icurecancer.ning.com > Quote Link to comment Share on other sites More sharing options...
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