Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 At the risk of being considered a " fuddy duddy " , may I request that people send personal interactions directly to the email address of the party they wish to " chat with " . Or at least label the personal message in the subject area with " Personal-Ann " . I get a lot of email and would like to make good use of this list by reading comments specific to our experiences and recommdations related to Hyper/Hypo issues. Thanks so much everyone for your consideration. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 Hi, This is the recent response I got back from Alice, with the types of questions she is interested in having answered for the paper she's working on about JRA. If anyone here feels like helping with this project, please take a look at the questions and any responses can either be sent here, through the list ... and I'll forward them to her. Or you can write to Alice directly, as her email address is posted below. Maybe we can all see the finished project when it's complete, and learn something useful from her efforts? Thanks for your cooperation, Georgina Alicerb01@... wrote: > > Hi Georgina, > Thanks so much for being willing to help.\ > > As I wrote, my paper will focus on functional issues related to juvenile > arthritis, but I would also like to use the information on your webpage about > the course of your child's illness. Would that be alright? If you could > address the following questions (or even just some of them), that would be > great. > > How old is Josh? > > Has he had occupational or physical therapy? Have they been suggested? > If he has had therapies, what types of activities have seemed beneficial? > > How do think JRA has affected Josh's development, including play and social > skills, academic/cognitive skills, and motor skills? > > How has JRA limited Josh's activities? > > How has it affected his participation in family and community (school, > church, friendships, etc.)? > > Besides medication, what things have you found useful in overcoming these > limitations on activities and participation? > (What are the strategies you have developed that are helping him live a happy > and fulfilling life? Please include any materials, equipment or changes you > have made to his environment.) > > Other than the JRA list, what other sources of information and support have > been especially helpful? > > What do you think is Josh's understanding of his illness? > > Also, I have found several different figures for the number of children with > JRA in the U.S. All the sources seem to be using the same definition for > JRA, so I am not sure why these huge discrepencies exist. Can you shed any > light on this? > > Any other information you would like to share would be wonderful. > > I would love to hear from any other parents or children. Thanks for offering > to mention this on your list. This paper will be the basis of a presentation > to other OT students, so you are actuallly helping to educate a group of us. > > Thanks so much! > > Take care, > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Of course Tess, I will keep them in my prayers. Debbie Mc -- [ ] A Request Hi...for those of you who pray, please keep my oldest daughter, Christena, and her family in prayer. I know this isn't specifically a prayer-list, but I love & trust you all, and this is a heavy burden on my heart. Thank you for understanding. Hugs & Hope... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Thanks, dear neighbor! God bless you & yours. Hugs of Hope & Love... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 You've got it, Tess. I hope Christena and her family will be fine. We may not be a prayer list, but we do a lot of it. [ ] A Request > Hi...for those of you who pray, please keep my oldest daughter, > Christena, and her family in prayer. > > I know this isn't specifically a prayer-list, but I love & trust you > all, and this is a heavy burden on my heart. Thank you for > understanding. > > Hugs & Hope... > > Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 > Tess, > I will keep Christena and her family in my prayers. I will also keep you in > my prayers and hope > some of the burden on your heart is lifted. I hope when I catch up on my > email, I read that you are feeling better and getting some energy back. > hugs, > a > > > > [ ] A Request > > >> > Hi...for those of you who pray, please keep my oldest daughter, >> > Christena, and her family in prayer. >> > >> > I know this isn't specifically a prayer-list, but I love & trust you >> > all, and this is a heavy burden on my heart. Thank you for >> > understanding. >> > >> > Hugs & Hope... >> > >> > Tess > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 To all you dear ones who are praying for my daughter Christena & family, thank you, thank you, thank you. Please keep remembering them. Many Hugs... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 Prayers and soul hugs sam Re: [ ] A Request > To all you dear ones who are praying for my daughter Christena & family, > thank you, thank you, thank you. Please keep remembering them. > > Many Hugs... > > Tess > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 I'm sorry that happened to you.and quite surprised as well. Many many people on this list have been able to modify the GFCF diet or leave it entirely with enzymes and I have always found this to be a supportive place for whatever *works* for a family/child - a place to get great information w/o judgment, people who are very generous with their time and experience, and people who will help you brainstorm through any problem you encounter along the way. A request I would like to ask that people NOT email me privately to harrass me about my decision to try enzymes and adding gluten in after five years of being GFCF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 As others have written, I am so surprised you had that terrible experience. I wish you success with your decision. Just so you know, my son was GFCF for four years and also eventually lutein free as well. He has been off the diet for over one year now with no regression and we keep making forward progress. I did not follow the thread about adding in gluten so I am likely repeating some information...the Kirkman brand enzymes did not allow my son to go off the diet. However, the Houston AFP Peptizyde has done this and I will forever be grateful to Devin. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 I just want to ask everyone to say a little prayer for a co-worker of mine. She's got lymphoma and is close to the end. She is 24 years old and when she got sick in Feb. she went to an alternative treatment hospital in Mexico. She came back home after nearly 3 mos. and soon ended up in a hospital here and has been there for 4 1/2 months. Absolutely nothing has stopped this tumor growth and she is on life support. Her husband is a total mess over it and so is the rest of the family. She is awake and alert but can't breathe without a ventilator and, because of the location of the tumor, has not been able to eat or drink anything since May. It is very sad and it has been weighing heavy on my mind over the last week. She is a young and beautiful girl. I'm asking everyone I know for their prayers. Thanks. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Gloria, I will pray for her safe passing and the comfort of her family. Gayla Always Enough RanchAcampo, Californiahttp://bouncinghoofs.com/alwaysenough.htmlBill Barnhill is our Inspiration! Go Bill!!!aeranch@... ----- Original Message ----- From: MorningGlory113@... health Sent: Sunday, October 15, 2006 7:03 AM Subject: Re: A request I just want to ask everyone to say a little prayer for a co-worker of mine. She's got lymphoma and is close to the end. She is 24 years old and when she got sick in Feb. she went to an alternative treatment hospital in Mexico. She came back home after nearly 3 mos. and soon ended up in a hospital here and has been there for 4 1/2 months. Absolutely nothing has stopped this tumor growth and she is on life support. Her husband is a total mess over it and so is the rest of the family. She is awake and alert but can't breathe without a ventilator and, because of the location of the tumor, has not been able to eat or drink anything since May. It is very sad and it has been weighing heavy on my mind over the last week. She is a young and beautiful girl. I'm asking everyone I know for their prayers. Thanks.Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Gloria, I will pray for her safe passing and the comfort of her family. Thanks, Gayla. She is being transported by heliocopter to the University of PA hospital Monday where they will hopefully try another treatment. It may or may not work. If and when she passes I pray it's very peacefully. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 You got it Gloria... that is so sad...have you spoke to her in the past about alternatives? At this point I don't know that much will help but essiac may ease the pain. She spent almost 3 months in an alternative hospital in Mexico earlier this year. She can't drink essiac. She can't eat or drink anything and hasn't been able to for quite awhile. Earlier this year her husband had bought a juicer etc. but she since she hasn't been able to swallow anything he never really got to use it with her. The tumor has eaten a hole in her esophagus and she can't even swallow her own saliva. She has a tube in 24/7 to drain fluids in her mouth. It is terrible. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 but the lady can't even swallow.....very sad story........................... Nope. Her husband is big into alternatives and bought tons of herbs and natural stuff when she was first diagnosed. He said the biggest frustration was her not being able to swallow more than a couple drops. Then eventually she couldn't swallow at all. And soon afterwards she also wasn't able to even breathe on her own. She been on a feeding tube for about 6 months and a ventilator for almost 5. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Prayers are on their way accross the seas Gloria. Thank you so much, Tracey. Those prayers will go full circle and come right back to you!! Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Prayers are on their way accross the seas Gloria. Love & Hugs Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Gloria, May be working at this hour hopefully and making lots of $ today, but the lady can't even swallow.....very sad story........................... carolgSuzanne <suziesgoats@...> wrote: You got it Gloria... that is so sad...have you spoke to her in the past about alternatives? At this point I don't know that much will help but essiac may ease the pain. I will say a prayer for her and her family. SuziMorningGlory113@... wrote: I just want to ask everyone to say a little prayer for a co-worker of mine. She's got lymphoma and is close to the end. She is 24 years old and when she got sick in Feb. she went to an alternative treatment hospital in Mexico. She came back home after nearly 3 mos. and soon ended up in a hospital here and has been there for 4 1/2 months. Absolutely nothing has stopped this tumor growth and she is on life support. Her husband is a total mess over it and so is the rest of the family. She is awake and alert but can't breathe without a ventilator and, because of the location of the tumor, has not been able to eat or drink anything since May. It is very sad and it has been weighing heavy on my mind over the last week. She is a young and beautiful girl. I'm asking everyone I know for their prayers. Thanks.Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 I'm so sorry Gloria! They'll be in my prayers! She is a young and beautiful girl. I'm asking everyone I know for their prayers. Becky It isn’t the load that breaks us down; it’s the way we carry it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Oh Gloria that is so sad. I can't understand why they keep people alive like this when in my feeling they aren't mean't to be here any longer. It is making the anguish worse for her and all her loved ones. I pray for her safe and easy passing and for her husband and family's comfort that when she has gone she will no longer be suffering and will be at peace. Blessings & Love Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Sending prayers out for her Gloria. This is so very sad. Caroline I just want to ask everyone to say a little prayer for a co-worker of mine. She's got lymphoma and is close to the end. She is 24 years old and when she got sick in Feb. she went to an alternative treatment hospital in Mexico. She came back home after nearly 3 mos. and soon ended up in a hospital here and has been there for 4 1/2 months. Absolutely nothing has stopped this tumor growth and she is on life support. Her husband is a total mess over it and so is the rest of the family. She is awake and alert but can't breathe without a ventilator and, because of the location of the tumor, has not been able to eat or drink anything since May. It is very sad and it has been weighing heavy on my mind over the last week. She is a young and beautiful girl. I'm asking everyone I know for their prayers. Thanks. No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/475 - Release Date: 10/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Sending prayers out for her Gloria. This is so very sad. Thanks Caroline. Her family and friends are praying for a miracle for her. I felt I needed to get even more prayers out there. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Oh Gloria that is so sad. I can't understand why they keep people alive like this when in my feeling they aren't mean't to be here any longer It isn't quite the case of the person in the coma who they just keep alive on tubes. She was initially put on a ventilator 5 months while they did tests and thought there was possibly a way they could reverse the problem so she could breath on her own. As time went on it wasn't happening. I think she is ready if they have to "pull the plug". However, a major hospital in Phila. has offered a glimmer of hope and she is being transported there by Medivac today. She is not a vegetable or unconscious, and I think that's why they have her hanging in there. She can even walk around a bit with help. It's an unusual case of someone on life support. We usually think of someone on life support as being unconscious or incoherent. She can make clear decisions, communicate via writing etc....Just can't eat or breathe on her own. Because she is still awake and alert, they will probably ask herself to be the one to make the decision to take the tubes out and she hasn't done that yet. Thanks for the prayers Tracey! Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 I'm so sorry Gloria! They'll be in my prayers Thanks so much Becky. This will be a crucial week as she is going to be transported to a different hospital. Praying miracle workers will take over her case. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 She sounds like a very strong person to have endured the past 5-6 months with tubes and it's thrilling to hear of someone with her endurance and tenacity. Please tell her I admire her deeply and will definitely be a "cheerleader" for her with prayers and thoughts during this time. This will be a crucial week as she is going to be transported to a different hospital. Praying miracle workers will take over her case. Becky It isn’t the load that breaks us down; it’s the way we carry it. Quote Link to comment Share on other sites More sharing options...
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