Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Hi Rosetta: They looked at Rheumatic Fever as a possible diagnosis for my daughter Caitlin. The cardiologist, just yesterday, said we could probably rule that out. Looking like SoJRA or Reactive Arthritis. We are praying for RA. She got sick in November. I hope Dakota has a better day today and soon his symptoms settle down. Is he taking any meds to help him? This group is a wonderful, supportive and informative group of people. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Hi Rosetta, Mornings, sometimes, are the hardest part of the day for our kids with arthritis. My son used to have morning stiffness that lasted a few hours. He'd get up around 7am, have breakfast, take his meds, and still not be ready to begin the day ... til around 10am. Sometimes it was a full day thing but on average, he just needed those few extra hours. He was very lethargic and lost that typical childhood spunk for a while. A bath or shower, sometimes a swim, might help loosen his joints a little bit but he'd still be walking with a stiff gait and feeling very sore and achy in his joints. He'd wake up most days, in the early stages, with high fevers each morning which didn't subside for a couple hours. That made it hard. The anemia he had off and on probably contributed, too. He used to say he wished he could go to night school. Even on the worst of days, he'd normally be feeling much better during the afternoons and into the early evening, before the night-time fevers would start. People were amazed there was such a visible difference. I hope Dakota has been doing at least a little better? I know how rough it can be. We all do, here. It does get easier, though. When you find the right combination treatment to get control over the arthritis, your son will be having better days. I used to worry that my son was going to miss out on having a positive childhood experience, because his JRA was so severe, but eventually we found what worked to control the disease. After that, we had some surprise flares along the way but it was never quite so bad or long-lasting as the original onslaught of the disease. Because we knew better what we had to do to get the flare over more quickly. Take Care, Georgina Rosetta bray wrote: > he is on prelone whitch i hope he will be able to be off of soon. he > seems pretty tired and a bit sore this morning not wanting to get up > just yet . hope the the gets better and he fells like moving a round > more but i dont push him he will get up and dtart playing when he is > ready . thanks for caring > > thanks so much > rosetta > > Emeraldsx3@... wrote: > > Hi Rosetta: > > They looked at Rheumatic Fever as a possible diagnosis for my daughter > Caitlin. The cardiologist, just yesterday, said we could probably > rule that out. > Looking like SoJRA or Reactive Arthritis. We are praying for RA. > She got sick > in November. > > I hope Dakota has a better day today and soon his symptoms settle > down. Is > he taking any meds to help him? > > This group is a wonderful, supportive and informative group of people. > > Take care. > Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 , I too, on the advice I received here, take my Mtx at bedtime and it really works. No more feeling nauseated all day. Hugs June ----- Original Message ----- From: sandelur Thanks so much for all the responses and information that I have received in such a short period of time. It puts the mind at ease when you can talk to someone who is in your shoes and has been and is going through the same things. It is nice to know that there are still people in the world who care enough to try and help a fellow person. Today was the first day of the prednisone and this weekend he will take his first dose of mtx. He is going to take it at night as you guys must know better than the doc since she said to take it first thing in the morning. I am sure it doesnt matter as long as it is the same day every week. Again thanks so much for being such wonderful people, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 In a message dated 1/19/2006 9:15:30 A.M. Eastern Standard Time, jenn.pike@... writes: As long as I don't think about the future too much I'm okay. :-) Think about the future a lot of us that have been here for years used to say the same thing. Kids with AS grow up learn coping skills , my son for one is doing great has friends is social, is getting good grades ( with the proper accomdations).He is happy now well adjusted and we have high hopes of him going to college. So do think about the future. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 In a message dated 1/19/2006 9:15:29 AM Eastern Standard Time, jenn.pike@... writes: This seems like a great group. -Jenn Wow, Jenn! Love your website. I crochet too! But geez, never heard of MoEZ before although I like to afghan crochet. It looks fun! Roxanna ô¿ô Don't take life too seriously; No one gets out alive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Just wanted to say " Hi! " I checked out your webpage....beautiful kids! I'm a scrapper too!! I'm way behind.....working on getting a permanent space to work then I should catch up....I think! A girl can dream.... (from Ohio - SAHWife and mom to two boys - Von (7 yrs with AS) and Jack (18 mo - NT so far) > > Thank you all so much for the warm welcome and for the support. I'm feeling > better again, thankfully. It's just so hard to deal with everything. As > long as I don't think about the future too much I'm okay. :-) > > > > This seems like a great group. > > > > -Jenn > > > > The Pike Family Website <http://www.pikesporch.com/> > (http://www.pikesporch.com) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Thanks, Roxanna! Crocheting in the afghan stitch is my passion. The MoEZ hooks are just wooden afghan hooks but they’re so nice and they’re large enough that you don’t have as much of a problem with curling in the work. I love doing graph-ghans because I love watching the pictures come alive as I work the yarn. It helps me get my mind off other things. Actually, one of the ladies who works with my 2-year-old autistic son has ordered 3 afghans from me with different pictures! :-) I must say, I love your signature line. Too true. -Jenn http://www.pikesporch.com <http://www.pikesporch.com/> Wow, Jenn! Love your website. I crochet too! But geez, never heard of MoEZ before although I like to afghan crochet. It looks fun! Roxanna ô¿ô Don't take life too seriously; No one gets out alive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 hi kate, well, the others here have already gotten you started down the right paths. we are so very glad you found your way to us!! you're going to get rid of this debilitating problem, babe. you have found a great place to finally deal with it here in this friendly and helpful group. dive into the files, read the articles that were sent to you when you joined, and keep talking to everyone here. its such a good good little spot in cyberspace ~ suz > I don't care what it takes to get rid of this, but I would do anything. > As soon as I get rid of this I'm going back to college. Its so great to > know that people who don't stink actually don't think its not my fault, > or that I'm crazy. I'm definitely going to get started on the things > you said. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Thankyou!! I'm so glad I have the internet, otherwise I would be completely isolated. I'm happy to have this forum as I don't want to put loads of rubbish into my body, and this forum's way of doing things is natural, and not full of chemicals. I really hope the candida diet will work. I am going to follow it properly. I think it will work but there is a part of me thinking I will be like this forever, but hopefully it will work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 > > Thankyou!! I'm so glad I have the internet, otherwise I would be completely isolated. I'm happy to have this forum as I don't want to put loads of rubbish into my body, and this forum's way of doing things is natural, and not full of chemicals. I really hope the candida diet will work. I am going to follow it properly. I think it will work but there is a part of me thinking I will be like this forever, but >hopefully it will work. ==>Dearest Kate. I understand how you feel about " thinking you will be like this forever " - that's the fear, which is totally understandable. Keep your thoughts focused on the future and don't let the fear get you down. You can do this Kate. You are so young and even if you've had candida since birth it will only take 18 months of natural healing, which is a drop in the bucket compared to the rest of your life! You lucky girl you. You'll be a sassy diva in no time and back in college creating a great future for yourself! ==>Believe in your body's miraculous healing powers. But do start one step at a time like my article says. " More is not better " because you need to give your body time to adjust to each of the changes. ==>Keeping a journal really helps because you can clearly see how far yu have progressed. Write down the dates you make each change along with your symptoms, and keep track of changes in symptoms as you progress. It's onward and upward Kate. Don't look back. One of my favorite quotes is by L. Ron Hubbard " Do not regret yesterday, life is in you today, and you make your tomorrow! " Lotsa hugs, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 WHETHER YOU REALIZE IT OR NOT YOUR WORSE OFF THAN YOUR HUSBAND BECAUSE THE HELPLESS FEELING YOU HAVE WHEN YOU WATCH THE ONE YOU LOVE GET SICKER AND YOU CAN'T FIX IT IS DEVASTATING TO YOU. YOUR IN MY PRAYERS ALWAYS. sistamarge <sistamarge@...> wrote: Thanks so much to those of you who answered my post. I know your time is important to you, so to take time to help a stranger means alot to me. I still have many questions, but just having this makes me feel like I'm at least a part of his problem now. To be with people who know something about what is going on, I can now feel I'm part of it. Thanks soooooo much. Take care, *Marge* --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 good for you plagal. i'm sure all of us are proud of you and are pulling for you. keep up the good fight. --- plagal <plagal@...> wrote: > I think I may have hit enter and posted accidentaly > before I was done, > anyway I'm home from hospital and going to do the > chemo again.My Doctor > said they were able to remove all of the tumor and > convinced me that > giving up would be 'stupid'(his exact words.) > thanks so much to the > people that sent messages . I just read them and am > trully > grateful.Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 You can't know how happy I am to hear that! I'm so glad you changed your mind. It seems the email system is having problems and I didn't receive the last few posts via email. I had to come to the group to see what was missing. Barbara > > I think I may have hit enter and posted accidentaly before I was done, > anyway I'm home from hospital and going to do the chemo again.My Doctor > said they were able to remove all of the tumor and convinced me that > giving up would be 'stupid'(his exact words.) thanks so much to the > people that sent messages . I just read them and am trully > grateful.Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Sincere hugs to you Barb! *(There is also a lag in posts showing up on the board.) > > > > I think I may have hit enter and posted accidentaly before I was done, > > anyway I'm home from hospital and going to do the chemo again.My Doctor > > said they were able to remove all of the tumor and convinced me that > > giving up would be 'stupid'(his exact words.) thanks so much to the > > people that sent messages . I just read them and am trully > > grateful.Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Happy Holidays to you also. Glad you joined our group, and found us to be willing to be there for whatever you may need. Hope we get to know you better. Just post anytime, and you will get lots of responses. Sounds like your doing well. Please share some of your experience with us, and we are more than glad to share with you. We have a lot of new people, and a lot of oldies to this CML. IT is 11 years since my diagnosis, and there are others longer than me. > > Hi Everyone - > > I'm a new member of this group, and still figuring a lot of things out, but I wanted to let you know how much I appreciate the fact that YOU are there. The warmth, honesty, compassion, humor and grace really come through the Internet and into my home. > > I recently had the chance to thank and honor the nurses who took care of me when I became ill. A local TV station has a " Pay It Forward " feature in which the station gives out money to someone who wants to give it to someone else who means a lot to them. Going back to the Bone Marrow Transplant Center on my own two feet, instead of on a gurney, was wonderful. I wanted to share this experience with you through these links. > > http://www.valleyprblog.com/people/pat-elliott-pays-it-forward-on-kpho5/ > > http://www.kpho.com/video/22001653/index.html > > > Happy Holidays, and best wishes for the new year. > > Pat Elliott > Phoenix, Arizona > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 This is fantastic, Pat. You have sure helped educate a lot of folks out there about CML. You've got a heart of gold to keep those nurses in mind! On Sun, Dec 20, 2009 at 10:46 AM, phoenixpat <phoenixpat@...> wrote: > > > Hi Everyone - > > I'm a new member of this group, and still figuring a lot of things out, but > I wanted to let you know how much I appreciate the fact that YOU are there. > The warmth, honesty, compassion, humor and grace really come through the > Internet and into my home. > > I recently had the chance to thank and honor the nurses who took care of me > when I became ill. A local TV station has a " Pay It Forward " feature in > which the station gives out money to someone who wants to give it to someone > else who means a lot to them. Going back to the Bone Marrow Transplant > Center on my own two feet, instead of on a gurney, was wonderful. I wanted > to share this experience with you through these links. > > http://www.valleyprblog.com/people/pat-elliott-pays-it-forward-on-kpho5/ > > http://www.kpho.com/video/22001653/index.html > > Happy Holidays, and best wishes for the new year. > > Pat Elliott > Phoenix, Arizona > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Pat, What a wonderfu opportunity and story.Thanks for sharing this..Glad you are feeling so much better.. SharonS > > Hi Everyone - > > I'm a new member of this group, and still figuring a lot of things out, but I wanted to let you know how much I appreciate the fact that YOU are there. The warmth, honesty, compassion, humor and grace really come through the Internet and into my home. > > I recently had the chance to thank and honor the nurses who took care of me when I became ill. A local TV station has a " Pay It Forward " feature in which the station gives out money to someone who wants to give it to someone else who means a lot to them. Going back to the Bone Marrow Transplant Center on my own two feet, instead of on a gurney, was wonderful. I wanted to share this experience with you through these links. > > http://www.valleyprblog.com/people/pat-elliott-pays-it-forward-on-kpho5/ > > http://www.kpho.com/video/22001653/index.html > > > Happy Holidays, and best wishes for the new year. > > Pat Elliott > Phoenix, Arizona > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Hi gator,Are you taking the Borax internally? I never did that and do not know if it is safe to do. I am so glad you came to this group. It is a most caring group of people... we've all had mites and the horror of that, difficulty managing or getting rid of it. I hope you get a chance to catch up on your sleep... helps with healing so much. From what I read you were able to get the Doxy. My doctor prescribes Doxy, but instead of Itraconazole, she gave me Fluconazole for fungal which I take every other day for 2+ months. I would have rather had the Itraconazole since Aandraya did so well with it. I am also on injections 3x/week of Bicillin, a thick long lasting penicillin which hubby injects into my rump. This is made for cattle and I get it through veterinary supplies prescribed by my LLMD. Much cheaper that way.In some ways I'm doing better, but it will be a long journey with the Lyme and coinfections. I think about your often and hope everything starts to turn around for you. We're here to give comfort or cheer you on. God bless!From: "g_mrrsn" <g_mrrsn@...>bird mites Sent: Thursday, March 15, 2012 3:16:53 AMSubject: Thanks So MuchHello and thanks to All of you.I hope I didn't miss replying to anyone; if I did, please accept my apologies.What a wonderful,delightful, caring group of people. I truly appreciate your quick responses to my cries for help. I have been reading and itching and itching and reading. I am learning so much I didn't know.I tried sipping the Borax and soda water. I have only had about a cup, but hope it is helping my insides. I have oils on head even now.It is about 5:00am here in Alabama and I have to begin preparing for my appointment now. Hope to sleep two hours, not enough i know, but will nap later.Thanks again. May God bless you all with His healing and richest blessings.Nytolg_mrrsn/GatorWhen my tummy is ill from abx, I use 1 TBS Slippery Elm powder Mix 1 tsp of L-Glutamine Powder W/ a glass of distilled water.Shake and drink immediately. It is very soothing and healing to the tummy.SE Lonzenges help as well. Goodnight and Good morning to all.------------------------------------ Quote Link to comment Share on other sites More sharing options...
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