Guest guest Report post Posted May 5, 2004 Angie, It's so sweet of you to join a list to learn more about autism to better understand your brother. What a great sister you must be. Autism is really a big category that affects each person differently. When people ask you about autism, I think sharing info about some of your brother's challenges and strengths would be the most helpful. Along with difficulty with social interaction, understanding subtle social cues and often sensory sensativities, many autistic people excell in areas like math, music and memory. Try to share the special things your brother can and does do along with what is challenging to him. Many people do recover from autism or lose enough of their challenges to blend into society unnoticed. Others remain autistic but still are able to support themselves, live on their own, marry, drive and do whatever anyone else would. Others can do fine in simple jobs living in a group home, while others will need continuous care. If you haven't already done so, you might want to read over Dr. Goldberg's website www.neuroimmunedr.com for his thoughts on the immune system's role in the challenges faced by people he feels are mis-diagnosed with autism. Sharing that info with your parents may be helpful. Your mention of him being annoyed when you talk reminds me of an adult autistic friend I used to know. He always told me that I talked way to much and to fast and that I needed to learn how to communicate in a simpler way. I think people on the autistic spectrum sometimes have difficulty processing speech and keeping up with our conversations so if we slow down and make it simpler, they are more comfortable. Gaylen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 5, 2004 Hi Angie, I have a daughter almost as old as you (she's 13), and she gets embarassed when he throws a fit in the store, or annoyed when he is hyper at home and sometimes jealous when he demands too much of my attention. My daughter has a friend with a younger brother like her's, and I think that helps to know she is not the ony one. Just a thought....Maybe you would be interested in talking with other kids that have siblings with a similar disorder. Your mom or dad or a counselor at school may be able to help you find a group like this near your home. > I'm new to this group.. My names Angie,I'm 14,I have a > brother who is 15 with Autism.I decided to join this group to learn > more about him and autism.. And how to cope with it. Through my life > its been kind of hard. Since he acts ways that I can't control, and > that he was different then other brothers. I love my brother. But > when I was younger I would get embarassed by him ( I still do > sometimes). And also I'm a big talker lol, and he gets annoyed when > I talk. > But, I was wondering, when people ask me what autism is what do I > tell them? I know kind of what it is. Also, how will his autism > effect him when he gets older? Will he have it forever? Is it > possible for autistics to drive? I have alot of questions! lol.. > thanks for listening to me ramble and talk a little!!! > -Angie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 7, 2004 Yes..very nicely put Gaylen ..I always love reading your emails you are always so full of good info ....and this one was one of my favorites..................Candi Re: HI Very nicely put Gaylen. Googahly@... wrote: Angie, It's so sweet of you to join a list to learn more about autism to better understand your brother. What a great sister you must be. Autism is really a big category that affects each person differently. When people ask you about autism, I think sharing info about some of your brother's challenges and strengths would be the most helpful. Along with difficulty with social interaction, understanding subtle social cues and often sensory sensativities, many autistic people excell in areas like math, music and memory. Try to share the special things your brother can and does do along with what is challenging to him. Many people do recover from autism or lose enough of their challenges to blend into society unnoticed. Others remain autistic but still are able to support themselves, live on their own, marry, drive and do whatever anyone else would. Others can do fine in simple jobs living in a group home, while others will need continuous care. If you haven't already done so, you might want to read over Dr. Goldberg's website www.neuroimmunedr.com for his thoughts on the immune system's role in the challenges faced by people he feels are mis-diagnosed with autism. Sharing that info with your parents may be helpful. Your mention of him being annoyed when you talk reminds me of an adult autistic friend I used to know. He always told me that I talked way to much and to fast and that I needed to learn how to communicate in a simpler way. I think people on the autistic spectrum sometimes have difficulty processing speech and keeping up with our conversations so if we slow down and make it simpler, they are more comfortable. Gaylen ------------------------------- Responsibility for the content of this message lies strictly with the original author(s), and is not necessarily endorsed by or the opinion of the Research Institute. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 13, 2004 Hi Angie, I have an 81/2 year old daughter. She is sooo good to her little brother, even though I know she feels embaressed sometimes. She tells me that her love for her little brother (even though he's a pain) is more important to her than her " friends " , I know this is hard for her, and I'm very proud of her for trying! In your case, your brother is older, so maybe that makes a big difference. Ask your parents about Harbor Regional Center's sibling classes, those should be helpful. May God bless you...you truly are a blessing to your family:) Argie Re: HI Hi Angie, I have a daughter almost as old as you (she's 13), and she gets embarassed when he throws a fit in the store, or annoyed when he is hyper at home and sometimes jealous when he demands too much of my attention. My daughter has a friend with a younger brother like her's, and I think that helps to know she is not the ony one. Just a thought....Maybe you would be interested in talking with other kids that have siblings with a similar disorder. Your mom or dad or a counselor at school may be able to help you find a group like this near your home. > I'm new to this group.. My names Angie,I'm 14,I have a > brother who is 15 with Autism.I decided to join this group to learn > more about him and autism.. And how to cope with it. Through my life > its been kind of hard. Since he acts ways that I can't control, and > that he was different then other brothers. I love my brother. But > when I was younger I would get embarassed by him ( I still do > sometimes). And also I'm a big talker lol, and he gets annoyed when > I talk. > But, I was wondering, when people ask me what autism is what do I > tell them? I know kind of what it is. Also, how will his autism > effect him when he gets older? Will he have it forever? Is it > possible for autistics to drive? I have alot of questions! lol.. > thanks for listening to me ramble and talk a little!!! > -Angie Responsibility for the content of this message lies strictly with the original author(s), and is not necessarily endorsed by or the opinion of the Research Institute. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 29, 2004 Please answer quickly! ++++ Attachment: No Virus found ++++ F-Secure AntiVirus - www.f-secure.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 18, 2004 > I'm sorry Vicki.Whenever I have the slightest symptom I worry. We have to remember it's a slow disease > Sharon > THANK YOU FOR RESPONDING. IT'S CRAZY, BUT I DIDN'T HAVE ANY SYMPTOMS. TO EVEN SAY IT WAS BACK. I HATE THIS DISEASE. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2004 hi i just looking 4 some to chat with maybe we can meet sometime panderson14me <KANDERSON13@...> wrote:I'm in NE Ohio. Is there anything I can do? a mom to undx'd > is there anybody in here from ohio i have a little girl with autism > looking for people in ohio ======================================================= Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 2, 2004 Hi Jenn, welcome to the group. I'm Terry, I found out in 2001 that I had out that I had Hep C & spent most of 2002 on treetment. I have test undetactble seance 4 months into treetment. All though some can not tollerate tx. Most have been able to tollerate it. It's not pleasant, but liveable. I hope we can be helpfull to you. TerryJenn <jennyklawz@...> wrote: hi all i'm new here. my name's jenn, i just got out ofthe army, i'm 21 and just looking for someone to talkto. i've had hep c for about two years but am tooscared to start treatment b/c of the side effects. i'dlove to talk to anyone who has some input on this__________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 2, 2004 Hi Jen, I was diagnosed last October with hep c and started the treatment in January of this year. I did 6 months of treatment and was still able to work. I took my shots around 5 evening right after my last day of my work week, so I had a couple of days to recoup. The first couple of days after the shot were the worst and I was able to work all week. Yes I was tired and drop once I got home from work, but no one ever knew I was sick. The drugs they have now are much easier on you system. Honestly I felt the worst before treatment, with everything I was reading about this illness and the emotional and physical drain. I am glad I did it and got it over with. I feel so much better now and can live my live the way I used to. What ever you decide to do, remember we are here for you. Lynne D -----Original Message-----From: Terry Long [mailto:pawpawto3@...]Sent: Tuesday, November 02, 2004 5:58 AM Subject: Re: [ ] hi Hi Jenn, welcome to the group. I'm Terry, I found out in 2001 that I had out that I had Hep C & spent most of 2002 on treetment. I have test undetactble seance 4 months into treetment. All though some can not tollerate tx. Most have been able to tollerate it. It's not pleasant, but liveable. I hope we can be helpfull to you. TerryJenn <jennyklawz@...> wrote: hi all i'm new here. my name's jenn, i just got out ofthe army, i'm 21 and just looking for someone to talkto. i've had hep c for about two years but am tooscared to start treatment b/c of the side effects. i'dlove to talk to anyone who has some input on this__________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 2, 2004 Hi Jen ... I am sure that you have heard that the side effects of the treatments vary from person to person. Again, we all experience the same thing differently. In that I mean, what may drive me nuts may not bother you at all. I have a few friends who had a few sides at the beginning and went on to a relatively normal 48 week course with much effort. I think you will find that the one most people suffer is fatique and again, that varies both in severity and the numbers affected. Some people are knocked flat by it, like myself, and others can carry on as if nothing is happening. It is a lonely thing if you let it be. I believe that coming here was a very wise choice. Regardless of when you start treatment, this forum will be of great benefit ... many of these fine people have cleared the virus but are here to support and guid those of us who are really struggling. I am relatively new to this particular forum but I have become comfortable and have learned a lot of new and interesting things. The whole process has to be tempered with humour or it will drive you nuts. I was a little crazy before my venture started so please don't use me as an example. Nice to see another newcomer ... Welcome! Babu aka gary Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 3, 2004 Good advice, , I'm not sure how long you've been with us, but you seem to have picked up the essence of the group. The makeup of our group keeps changing, but still remains the same. I remember how ignorant I was of this disease and its treatment. About even with my, then, family doctor. Thanks for being with us and helping out. Jen, you hang in there, too, we'll do our best to help out wherever we can. -dz- <babu_aka_gary@...> wrote: Hi Jen ... I am sure that you have heard that the side effects of the treatments vary from person to person. Again, we all experience the same thing differently. In that I mean, what may drive me nuts may not bother you at all. I have a few friends who had a few sides at the beginning and went on to a relatively normal 48 week course with much effort.I think you will find that the one most people suffer is fatique and again, that varies both in severity and the numbers affected. Some people are knocked flat by it, like myself, and others can carry on as if nothing is happening. It is a lonely thing if you let it be. I believe that coming here was a very wise choice. Regardless of when you start treatment, this forum will be of great benefit ... many of these fine people have cleared the virus but are here to support and guid those of us who are really struggling. I am relatively new to this particular forum but I have become comfortable and have learned a lot of new and interesting things. The whole process has to be tempered with humour or it will drive you nuts. I was a little crazy before my venture started so please don't use me as an example. Nice to see another newcomer ... Welcome!Babu aka gary Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 3, 2004 I would try to determine if you could have contracted hcv while in the military and let them help you finance the treatment. The sides as you've heard are variable. I had an awful night after my first shot, but the rest of the treatment wasn't too bad. Very tired, and occasional "flu-like" symptoms. Let us know as you get more information and come closer to a decision about treatment. The earlier it is treated, the better the prognosis, but you have to weigh in, whether there are any better treatments around the corner and the current condition of your liver. -dz- Welcome!Jenn <jennyklawz@...> wrote: hi all i'm new here. my name's jenn, i just got out ofthe army, i'm 21 and just looking for someone to talkto. i've had hep c for about two years but am tooscared to start treatment b/c of the side effects. i'dlove to talk to anyone who has some input on this__________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Sorry for your diagnosis but getting the proper diagnosis is a major milestone. I am currently on Humira and Arava because my liver couldn't tolerate MTX. However, MANY people do very well on MTX. I have been on Humira for over a year. Injecting was emotionally difficult the first time, but now I can't wait for my next shot because Humira is helping me a great deal. I still am a person living with chronic PA. Humira cannot undue the damage done to my joints after living with this disease for close to 40 years. However, a year ago I couldn't cut my own meat. I couldn't use the vacuum. I had trouble driving long distances. I lived with constant pain, stiffness and swelling. The pain level was more or less a constant 7-8. After a year of being on Humira, I can cut my own food. I can do light housekeeping chores. I can drive long distances. I am much less stiff. My pain level is generally around a 3 although there are days when it is higher. In other words, Humira is not a cure for the damage that's been done, but it has given me big chunks of my independence back. I still have trouble walking (that's the damage from 40 years of being diseased), so I have learned to proudly display my handicapped car sticker and to ride the electric carts provided by stores in the mall. However, I work in a high pressure job and live in a high pressure city (NYC) and Humira has helped me live a semblance of a normal life with lots of tweaks here and there. I have no appreciable side effects. Like the others here, I have fatigue but no more so than in my pre-Humira days. ALL medications, including aspirin, have potential side effects so you will need to monitor yourself carefully and view your rheumy as your partner in this war. Your blood will be tested very frequently to ensure that there are no critical changes taking place without your knowledge. Many of us have learned little helpful hints when it comes to injecting that you might find useful. Always let the Humira come to room temperature before injecting. Freeze your injection site by holding a box of frozen peas (or corn!) against the injection site for 15-20 minutes before injecting. This will numb the site and make the injection virtually painless. Inject VERY slowly. Once I learned these 3 little tricks, injecting became virtually painless. The people on this list can't cure your PA, however, we can help make living with the disease a lot easier! Wishing you wellness, Kathy F. In a message dated 12/19/2004 8:02:11 A.M. Eastern Standard Time, sha1373@... writes: I was just diagnosed with pa. I already have bone loss on both my ankles. I am having a hard time coping with the pain both emotionally and physically. I am on steroids right now and in the new year I will be starting Humira injections and probably Methotrexate injections. I am very nervous about giving myself the injections and the side effects of the medications. If anyone is on these medications can they please let me know how they are handling them? I hope to find and give support to the other members here. Thank you Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Hi Kathy, Thank you for getting back to me so quickly. I too live in NY. I live in Long Beach. I just wanted to thank you for the helpful hints with the injections. I hope you are enjoying the holiday's. Shari Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Hi Shari, Welcome to the group. Hope you manage the injections ok. I have just started on Enbrel and all I can say is that I found injecting that very straightforward and easy. I take MTX in pill form so I can't really help you there either but there are a few people here who will be able to give you some info. Good luck, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Hi, Shari, Let us know how things are going for you as you begin using MTX and Humira. So you're from Long Beach? Pretty community. We have a house on Fire Island. I know how the ocean can call to you. We're having a wonderful holiday season. We got our " chores " done early and now we're enjoying spending time each day with family and friends with a roaring fire in the fireplace, the beautiful tree beckoning, holiday music in the background and pleasant food for all. Did I mention wine? LOL. How's your holiday season treating you? Kathy F. H In a message dated 12/19/2004 3:07:09 P.M. Eastern Standard Time, sha1373@... writes: Hi Kathy, Thank you for getting back to me so quickly. I too live in NY. I live in Long Beach. I just wanted to thank you for the helpful hints with the injections. I hope you are enjoying the holiday's. Shari Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Hi I love going to Fire Island. I use to get out there more when I was younger. The holiday's are going okay for me. I oversee group homes for disabled adults and work has been killing me, and not feeling well doesn't help. But, I am grateful for everything I have so I shouldn't complain. I am hoping to go into the city tomorrow to get some shopping done and see the tree. I have to see how I feel and the weather. I hope you have a great night. Talk to you soon..Shari Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Thank you, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Dear Fran, Yes, what is with your little stars, anyway? Maybe it's a message about Christmas. I forgot to mention, Fran, that we are now in the midst of a wonderful snowfall so on top of everything else, the beautiful mountains are now covered in snow as is everything else in sight. It is all so wonderful and yes, it is a bit Currier and Ives-ish but what a joy it is to behold. You and are invited to share in the scenary and the wine any time. Love, Kathy F. * Dear Kathy, What a picture you just painted in my mind! Talk about the " " perfect " Christmas setting. You make it sound so beautiful. I' ve never been to that part of the country and now I want to go. It sounds just beautiful? Can I come and have some wine too? I bet would join us???? Love Fran. PS I have no idea where those little dots came from. I am using my laptop since the main computer is being worked on. Love, Fran Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 Hi Shari, I, too, am grateful for everything I have and I truly concentrate on the many positive things around me. In fact, every day I give thanks for the health I HAVE rather than moan about the health I've lost. HOWEVER, our situations suck and it is perfectly normal to bemoan the condition we find ourselves in from time to time. Kathy F. In a message dated 12/19/2004 8:44:10 P.M. Eastern Standard Time, sha1373@... writes: Hi I love going to Fire Island. I use to get out there more when I was younger. The holiday's are going okay for me. I oversee group homes for disabled adults and work has been killing me, and not feeling well doesn't help. But, I am grateful for everything I have so I shouldn't complain. I am hoping to go into the city tomorrow to get some shopping done and see the tree. I have to see how I feel and the weather. I hope you have a great night. Talk to you soon..Shari Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 19, 2004 * Dear Kathy, What a picture you just painted in my mind! Talk about the " " perfect " Christmas setting. You make it sound so beautiful. I' ve never been to that part of the country and now I want to go. It sounds just beautiful? Can I come and have some wine too? I bet would join us???? Love Fran. PS I have no idea where those little dots came from. I am using my laptop since the main computer is being worked on. Love, Fran * * * * Hi, Shari, Let us know how things are going for you as you begin using MTX and Humira. So you're from Long Beach? Pretty community. We have a house on Fire Island. I know how the ocean can call to you. We're having a wonderful holiday season. We got our " chores " done early and now we're enjoying spending time each day with family and friends with a roaring fire in the fireplace, the beautiful tree beckoning, holiday music in the background and pleasant food for all. Did I mention wine? LOL. How's your holiday season treating you? Kathy F. H In a message dated 12/19/2004 3:07:09 P.M. Eastern Standard Time, sha1373@... writes: Hi Kathy, Thank you for getting back to me so quickly. I too live in NY. I live in Long Beach. I just wanted to thank you for the helpful hints with the injections. I hope you are enjoying the holiday's. Shari .. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 19, 2005 Welcome to the group, Kelli. You are in the right place for support and friendship. Your councelor is right in thinking a support goup would be helpful. I have found this group to be so wonderful. The people in here are great. You will learn a lot here because you are hearing what others with the same situation are going through. Welcome, and tell us a bit about yourself.....Marina/Ohio > > > Hello Everyone. I'm new here. I'm 27 and I've been suffering with R.A > for a little over a year. Just thought I'd check this out. My > counselor suggested a support group may provide some help to me. > > Thanks for having me. > > Everyone Have A Joyful Day Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 19, 2005 Welcome Kelli! > > > Hello Everyone. I'm new here. I'm 27 and I've been suffering with R.A > for a little over a year. Just thought I'd check this out. My > counselor suggested a support group may provide some help to me. > > Thanks for having me. > > Everyone Have A Joyful Day Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 19, 2005 Hi Kelli and welcome to our group..........so sorry to hear about your diagnosis but you definitely found the right group here..........the moderators are some of the most knowledgeable people that I know..........and everyone is so caring and supportive............. Hugs Pat in So Ore. --- Kelli <highestexaulted@...> wrote: > > > Hello Everyone. I'm new here. I'm 27 and I've been > suffering with R.A > for a little over a year. Just thought I'd check > this out. My > counselor suggested a support group may provide some > help to me. > > Thanks for having me. > > Everyone Have A Joyful Day > > > > > > > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 6, 2005 yes - go here and read for a bit (take food and drink LOL) and then come back with questions _http://home.earthlink.net/~moriam/_ (http://home.earthlink.net/~moriam/) get a hair test doen through DDI is a good start - detials on above link under how to test hair - special offer on at the moment for April though this link _www.directlabs.com_ (http://www.directlabs.com) HTH Mandi in Uk Any tips on how to get started with the process.. Quote Share this post Link to post Share on other sites
