Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Sorry, just had one more question pop into my brain. I've heard of camps for kids with cancer, kids who are blind, etc. Are there camps/programs/get-togethers for kids with JRA? If so, how do I find them/get in touch with them? One of the sorry, unfortunate things about 's experience in the orphanage was that she was considered " defective " and not worthy of much time, attention, money or opportunities in life. It is not a happy thing to be different in a third world country. They gave her the barest minimum of food and medicine, and refused to send her to school (considered a waste of money and resources to spend on a handicapped child) This is a cultural thing that I am hoping to help overcome. I would love to have her meet other kids with JRA - so she knows she's NOT the ONLY one. Thanks, Patty --- wrote: > There are 12 messages in this issue. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Patty, Correct me if I am wrong, but I believe you said initially you were in Iowa. The Nebraska chapter of the Arthritis Foundation as well as our ped rheumy sponsor an arthritis camp every summer. Not sure if this helps, but if you are interested I can get you info as it becomes available this year. Welcome to our world. Hope to hear from you again. Christy Abbie (12 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi Patty and welcome! To find a JRA camp near you, go to the Arthritis Foundation homepage. www.arthritis.org Click on communities (near the top). Then click on Juvenile Arthritis. Then you'll scroll down and find a listing for camps. It will take you to a section where you can click on the state. I didn't see anything in Iowa, but there is a camp in Omaha, Ne. Each camp has info given, including who to contact for info. You mentioned wanting to meet other JRA kids. Well, each year the American Juvenile Arthritis Organization hosts conferences for the entire family. Kids are put in age appropriate groups and parents have lots of sessions from which to choose. It's a fantastic experience! This year the conference will be in Minneapolis, from July 25-28. You can find info on it by following the above links but clicking on conferences at the end. I can't say enough about the conferences! The first time we attended, my now almost 10 yr old daughter was amazed to find so many other kids with the same thing. And even more amazed that so many took the same meds! As a parent, I found such comfort in being with other parents who shared the same concerns and who truly all understood the issues we all face with our kids and this disease. And to have access to so many of the professionals who treat our kids was also a real bonus. Again, welcome! Liz One more question > Sorry, just had one more question pop into my brain. > > I've heard of camps for kids with cancer, kids who are > blind, etc. Are there camps/programs/get-togethers > for kids with JRA? If so, how do I find them/get in > touch with them? > > One of the sorry, unfortunate things about 's > experience in the orphanage was that she was > considered " defective " and not worthy of much time, > attention, money or opportunities in life. It is not > a happy thing to be different in a third world > country. They gave her the barest minimum of food > and medicine, and refused to send her to school > (considered a waste of money and resources to spend on > a handicapped child) This is a cultural thing that I > am hoping to help overcome. I would love to > have her meet other kids with JRA - so she knows she's > NOT the ONLY one. > > Thanks, > > Patty > > > > --- wrote: > > There are 12 messages in this issue. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi, Patty. How lucky is that you have found her! She is certainly going to have a wonderful quality of life once you get everything under control. I think its great. Just to let you know there is a camp in Illinois. There is info on the arthritis website. Another one I have heard of is the Boggycreek Gang run by the Newman foundation. Its website is www.boggycreek.org My son has not gone but it does look neat and they have lots of different kids going, each tailor made to the childs specific disease. I believe it is free. My son is currently on methotrexate(mtx) and is doing quite well. He is one of the lucky people who respond quickly to this med. The dr said it does happen in some people that they respond in a week or two. He is not pain free, but definitely much less pain. My suggestion with the dr is to right down your questions before you get there - as they come up in your head. Perhaps even keep a pain journal so you can explain what is going on for a bit better. You cannot expect yourself to remember everything! I also write down what the dr is saying at the office sometimes if it seems like alot of info or directions. This way if I have any questions later I can look back at what I've put down. Hope this helps you, and I think its great what you are doing! Michele P.S. To anyone who's children have been diagnosed with spondyloarthropies (another form of jra) there is a website I found www.spondylitis.org My son ( 14) seems to have this. One more question Sorry, just had one more question pop into my brain. I've heard of camps for kids with cancer, kids who are blind, etc. Are there camps/programs/get-togethers for kids with JRA? If so, how do I find them/get in touch with them? One of the sorry, unfortunate things about 's experience in the orphanage was that she was considered " defective " and not worthy of much time, attention, money or opportunities in life. It is not a happy thing to be different in a third world country. They gave her the barest minimum of food and medicine, and refused to send her to school (considered a waste of money and resources to spend on a handicapped child) This is a cultural thing that I am hoping to help overcome. I would love to have her meet other kids with JRA - so she knows she's NOT the ONLY one. Thanks, Patty --- wrote: > There are 12 messages in this issue. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Patty, I have an 8 year old with arthritis, and i am sure she would like to write to sarah. Holly has had arthritis since she was 9 months old. Where are you from, if you dont mind me asking?? Let me know if you think sarah would like a penpal. Its great that your getting so much help on the school level. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi Patty, You're right. This is a very important aspect of the successful treatment of JRA. Letting the children know that they are NOT alone, that other kids like them have JRA, too. I see that several people have already pointed you in the right direction, to get more information on this. Do check into it. On the days that my son's doctors fly to our island most of the local kids with JRA all get to see one another. The ones around his age all seem to be girls so he hasn't really formed any very close relationships. He considers them friends but ... not quite as close as his buddies. One of the girls he's known ever since he first got JRA (6+ years ago) also has the same type as he does - systemic. She's a year older and a grade higher but they go to the same school now. Sometimes they talk but they're not too close. They don't do things together after school. He prefers to be with boys. At least for now : ) My daughter and that girl's sister get along really well. They first met in the doctors' waiting room but now they even hang out together at school. Another girl with JRA, whose Mom used to be on our list, became a Pen Pal. Again, not with Josh ... but with my daughter. Go figure!?! The children here do get invited to a JRA Camp weekend sponsored by Shriner's (and this year the Arthritis Foundation) once a year. They fly to Oahu together and meet with the children from other islands to learn about JRA and participate in fun activities. Quite a few boys go and Josh seems to really enjoy the experience. Josh also likes to hear about the children respresented on this group. He'll sometimes ask how so and so is doing and I'll let him know what that person's Mom or Dad has written lately. Sometimes it's very encouraging for him, especially to hear about their good news and progress. Take Care, Georgina I've heard of camps for kids with cancer, kids who areblind, etc. Are there camps/programs/get-togethersfor kids with JRA? If so, how do I find them/get intouch with them?One of the sorry, unfortunate things about 'sexperience in the orphanage was that she wasconsidered "defective" and not worthy of much time,attention, money or opportunities in life. It is nota happy thing to be different in a third worldcountry. They gave her the barest minimum of foodand medicine, and refused to send her to school(considered a waste of money and resources to spend ona handicapped child) This is a cultural thing that Iam hoping to help overcome. I would love tohave her meet other kids with JRA - so she knows she'sNOT the ONLY one.Thanks, Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 I would be happy to correspond with any of the kids about growing up with JRA. I've had JRA since age two and know the feelings associated with being young and having arthritis. I would love to share my experiences with your kids if you think it might help them. Todd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Todd...how old are you and what type of jra do you have? I am a parent of a daughter who is 16 and who has had poly jra since the age of 4 and a half..i think their alot of parents on this list that would be interested in your life and growing up with this...we have adults on here who also has grown up with this.. good luck karen From: mullytek@... Reply- Subject: Re: One more question Date: Wed, 16 Jan 2002 00:23:39 EST I would be happy to correspond with any of the kids about growing up with JRA. I've had JRA since age two and know the feelings associated with being young and having arthritis. I would love to share my experiences with your kids if you think it might help them. Todd _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Hi Todd, Thank you : ) That was very kind of you, to offer. If you stick around here for a bit, you'll find that the type of knowledge and understanding you have is often extremely valuable to us parents of children who have JRA, too : ) It's nice to "meet" you, Georgina (Mom to , almost 13yrs, Systemic JRA for 6+ years) Re: One more question I would be happy to correspond with any of the kids about growing up with JRA. I've had JRA since age two and know the feelings associated with being young and having arthritis. I would love to share my experiences with your kids if you think it might help them.Todd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 --- ajaomom@... wrote: > Patty, > I have an 8 year old with arthritis, and i am > sure she would like to write > to sarah. Holly has had arthritis since she was 9 > months old. Where are you > from, if you dont mind me asking?? Let me know if > you think sarah would like > a penpal. Its great that your getting so much help > on the school level. > n > Dear n We have not been on the net for a month or two, we still check mail thou. I hope Holly is ok. I know her and were pen pals but we lost your address too. Well I Holly is doing ok. seems to be reacting to the shots now, Still a little flare Send Holly our Best and Lake in the hills illinois __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Eating-For-Life isn't really an organic eating plan (and by organic I don't mean USDA certified, but whole foods in their natural state)... And while many bodybuilders try to eat food in it's whole state as much as possible, BFL pushes EAS products, none of which are all natural... I have to say I would go a little crazy on the God Diet (that's what I call only eating things from the Earth), because I would possibly eat more calories overall because I wouldn't be using artificial sweetner, and I would much rather chug down a protien shake in the morning than eat a bunch of meat, but that's just me One more question How many of you here also follow Eating for Life? I just got the book today and really liked it but I have to say I was a bit suprised at some of the ingredients he includes in his recipes. Lots of white flour products and even Cool Whip which has the first ingredient listed as " partially hydrogenated oil " ---something NO ONE should eat! A fair amount of artificial sweetners too (Aspertame and Splenda). I guess I just expected it to be more whole-food based since he is so into health. If you don't use his plan, whose do you use or what do you eat? Right now I am trying to follow the rule of " if it has a label, don't eat it " in polis --> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 If you have a microwave, you have to try n's Muffin that she posted a few weeks ago! Put all the similar ingrediants into a Pyrex and nuke for 2-3 minutes---HUGE meal. > No I know and I usually have protien pancakes or something... I was really thinking about my last meal when I'm in my pajamas and all that and didn't wanna chow down steak... so for my last and first meal, I DON'T WANT MEAT! So, yes, I eat eggs, pancakes, and omlettes a lot... Do you have a good protien muffin recipe? > Re: One more question > > HAHAHA! > I love the " GOD DIET " --I hope I get to quote that when > and if I ever lose this fat. > > BTW, egg whites/cottage cheese and oatmeal > protien muffins, pancakes > and omelettes > do not equate to waking up and eating tons of > meat...silly! > > -- > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 n- I am trying to cut out dairy because it makes me all mucousy and I do believe that we aren't necessarily supposed to be drinking another mammal's breastmilk I can easily cut out milk but I do love my cheese. Even though cheese has a " label " , I would still consider it a whole food. Basically anything you can get on the outter perimeters of the grocery store is what I eat. I rarely go into the middle isles. I decided the same thing--to use the book as a general guide. But still...I know it's only a dollop here and a dollop there of Cool Whip, but the stuff is SO bad for you and it makes me wonder why he would recoomend that at all. Shoot, even the mainstream companies are taking all of the hydrogenated oils (trans fats) out of their products now. And I also don't use any artificial sweetners and I found a decent # of his recipes to have them in them. I figure artificial sweetners may help me lose weight but that's not going to do me any good when I am dying of cancer! LOL > > >How many of you here also follow Eating for Life? I just got the book > >today and really liked it but I have to say I was a bit suprised at > >some of the ingredients he includes in his recipes. Lots of white > >flour products and even Cool Whip which has the first ingredient > >listed as " partially hydrogenated oil " ---something NO ONE should eat! > >A fair amount of artificial sweetners too (Aspertame and Splenda). > >I guess I just expected it to be more whole-food based since he is so > >into health. If you don't use his plan, whose do you use or what do > >you eat? Right now I am trying to follow the rule of " if it has a > >label, don't eat it " > > > > in polis > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Can you tell me how much baking powder you use? Thanks! > No I know and I usually have protien pancakes or something... I was really thinking about my last meal when I'm in my pajamas and all that and didn't wanna chow down steak... so for my last and first meal, I DON'T WANT MEAT! So, yes, I eat eggs, pancakes, and omlettes a lot... Do you have a good protien muffin recipe? > Re: One more question > > HAHAHA! > I love the " GOD DIET " --I hope I get to quote that when > and if I ever lose this fat. > > BTW, egg whites/cottage cheese and oatmeal > protien muffins, pancakes > and omelettes > do not equate to waking up and eating tons of > meat...silly! > > -- > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 A really good combo (even though it sounds gross) is cottage cheese and apple butter. I can't do the yogurt because the artificial sweetners taste so bad to me (I'm a super-taster > > >No I know and I usually have protien pancakes or something... I was really > >thinking about my last meal when I'm in my pajamas and all that and didn't > >wanna chow down steak... so for my last and first meal, I DON'T WANT MEAT! > >So, yes, I eat eggs, pancakes, and omlettes a lot... Do you have a good > >protien muffin recipe? > > > > > > Quote Link to comment Share on other sites More sharing options...
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