Guest guest Posted December 1, 2002 Report Share Posted December 1, 2002 Hello, hello, hello!!! I am Amy and haver been enjoying the company of this group since last July. I wish you all the best, It is my understanding that a Still's diagnose is used when everything is exhausted. At least that is the case with me. I too will be going to see a new specialist in Denver on Thursday... yeah!!! another opinon. keep me posted. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2002 Report Share Posted December 1, 2002 Hello, hello, hello!!! I am Amy and haver been enjoying the company of this group since last July. I wish you all the best, It is my understanding that a Still's diagnose is used when everything is exhausted. At least that is the case with me. I too will be going to see a new specialist in Denver on Thursday... yeah!!! another opinon. keep me posted. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2002 Report Share Posted December 1, 2002 Hello Lori, my name is Patty. I do so hope your doctors can give you some answers very soon. Although when we know it doesn't change the illness but it does give us some validation that then there may be treatment with medicines. Welcome to our group. We shall help any way we can so feel free to share your feelings and ask questions. I hope you find some answers. Till soon, Patty aka Melt with a smile. > Hi, my name is Lorie and I am waiting so patiently for my test > results that are due in this coming Thursday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2002 Report Share Posted December 1, 2002 Hello Lori, my name is Patty. I do so hope your doctors can give you some answers very soon. Although when we know it doesn't change the illness but it does give us some validation that then there may be treatment with medicines. Welcome to our group. We shall help any way we can so feel free to share your feelings and ask questions. I hope you find some answers. Till soon, Patty aka Melt with a smile. > Hi, my name is Lorie and I am waiting so patiently for my test > results that are due in this coming Thursday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi Lorie, Oh I do hope you get your answer on Thursday. One thing worse than being sick, is not knowing what the " sick " is. At least once we receive a diagnosis we *know* what we are fighting. *If* the doctor's give you the diagnosis of AOSD Lorie, then you know...you are fighting a dragon! But... we will be here to help you fight. You mentioned that with the diagnosis come Thursday, you will also be starting some kind of treatment...it sounds to me as if you are suffering very much, and I surely hope along with that diagnosis you will receive the medical help you need. It's nice to meet you. Please let us know what the doctor's tell you. Remember, we *will* be here for you. ~~tricia~~ -- Almost there Hi, my name is Lorie and I am waiting so patiently for my test results that are due in this coming Thursday. I will hopefully know by then if I have Still's or something else. I started having these wierd symptoms about 4 yrs ago, I seen my GP many times, a neurologist, and poditrist, an orthopedic dr and now I am seeing an Infectious Diseases Dr. I have had the phantom fevers, the joint pains, uncontrollable nausea, headaches, shortness of breath, fatigue, and an enlarged spleen and liver. I have diagnosed, but since retracted, with Mono, RA or some Viral Infection. I've been tested for MS, Lupus and Lymphoma and so far nothing that points in only one direction. This has been very frustrating and depressing. This latest flare started the first of August and has let up a little. Some days I do feel half way normal, but the next day I may be plagued with the fever spikes and joint pain and extra swelling in the liver and spleen. I also can't eat solid food very well, makes me ill to even smell it somedays, so I drink alot of ensure. I hope that we can get a " for sure " diagnosis come Thursday so that I can start some kind of treatment. Right now all I am doing is controlling the pain with what I call " migraine in a bottle " codiene, and then only when I have too. Over the counter stuff has since lost it's effectiveness. I sure hope that someone here can shed some light on whats happening to me and I hope that maybe I can get some advice on what to expect next. thanks so much for listening... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi Lorie, Oh I do hope you get your answer on Thursday. One thing worse than being sick, is not knowing what the " sick " is. At least once we receive a diagnosis we *know* what we are fighting. *If* the doctor's give you the diagnosis of AOSD Lorie, then you know...you are fighting a dragon! But... we will be here to help you fight. You mentioned that with the diagnosis come Thursday, you will also be starting some kind of treatment...it sounds to me as if you are suffering very much, and I surely hope along with that diagnosis you will receive the medical help you need. It's nice to meet you. Please let us know what the doctor's tell you. Remember, we *will* be here for you. ~~tricia~~ -- Almost there Hi, my name is Lorie and I am waiting so patiently for my test results that are due in this coming Thursday. I will hopefully know by then if I have Still's or something else. I started having these wierd symptoms about 4 yrs ago, I seen my GP many times, a neurologist, and poditrist, an orthopedic dr and now I am seeing an Infectious Diseases Dr. I have had the phantom fevers, the joint pains, uncontrollable nausea, headaches, shortness of breath, fatigue, and an enlarged spleen and liver. I have diagnosed, but since retracted, with Mono, RA or some Viral Infection. I've been tested for MS, Lupus and Lymphoma and so far nothing that points in only one direction. This has been very frustrating and depressing. This latest flare started the first of August and has let up a little. Some days I do feel half way normal, but the next day I may be plagued with the fever spikes and joint pain and extra swelling in the liver and spleen. I also can't eat solid food very well, makes me ill to even smell it somedays, so I drink alot of ensure. I hope that we can get a " for sure " diagnosis come Thursday so that I can start some kind of treatment. Right now all I am doing is controlling the pain with what I call " migraine in a bottle " codiene, and then only when I have too. Over the counter stuff has since lost it's effectiveness. I sure hope that someone here can shed some light on whats happening to me and I hope that maybe I can get some advice on what to expect next. thanks so much for listening... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Dear Lorie, I just read your email and wanted you to know that I was thinking about you and am hoping you get some answers on Thursday. I was diagnosed a few months ago after being sick a year. For me, there was a sense of " relief " knowing what I was dealing with...even if it wasn't a " fun! " thing! At least, i felt I could read about it, understand the disease, and have a sense of control. And, this group has been great! Please let us know what you find out...and of course, let us know if you have any questions or just need to vent! Be well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Dear Lorie, hi, my name is Sue and I wanted to welcome you to our wonderful group. Did you have your appointment today and find out about your test results? It sounds like you have experienced many symptoms of Stills. I look forward to getting to know you better and being able to help out. It is very frustrating to pin point this disease down. It must of took almost 4 years for them to do this to me. Good luck friend. Love,Sue #2 ----- --Original Message------- From: Stillsdisease Date: Sunday, December 01, 2002 04:04:04 PM Stillsdisease Subject: Almost there Hi, my name is Lorie and I am waiting so patiently for my test results that are due in this coming Thursday. I will hopefully know by then if I have Still's or something else. I started having these wierd symptoms about 4 yrs ago, I seen my GP many times, a neurologist, and poditrist, an orthopedic dr and now I am seeing an Infectious Diseases Dr. I have had the phantom fevers, the joint pains, uncontrollable nausea, headaches, shortness of breath, fatigue, and an enlarged spleen and liver. I have diagnosed, but since retracted, with Mono, RA or some Viral Infection. I've been tested for MS, Lupus and Lymphoma and so far nothing that points in only one direction. This has been very frustrating and depressing. This latest flare started the first of August and has let up a little. Some days I do feel half way normal, but the next day I may be plagued with the fever spikes and joint pain and extra swelling in the liver and spleen. I also can't eat solid food very well, makes me ill to even smell it somedays, so I drink alot of ensure. I hope that we can get a " for sure " diagnosis come Thursday so that I can start some kind of treatment. Right now all I am doing is controlling the pain with what I call " migraine in a bottle " codiene, and then only when I have too. Over the counter stuff has since lost it's effectiveness. I sure hope that someone here can shed some light on whats happening to me and I hope that maybe I can get some advice on what to expect next. thanks so much for listening... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Thelma, That's wonderful news!! Your activation will be a moment you'll never forget. Mine was 24 hours ago and I'm still on Cloud 9!! I think you're doing the right thing by going in with high hopes and low expectations. Good luck next week!! Implanted: 12/22/04 Activated: 1/18/05 Deafblind/Postlingual BTE hearing aid user 20 years Severe-profound hearing loss 10 years " Surviving a loss and letting go is only half of the story. The other half is the secret belief that we will find, in one form or another, what we have lost. And it is that potential, shimmery as a star on a clear night, that helps us survive. " -- Chambers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Thema, We are all going to be anxiously waiting to hear about your big day. I guess we can get up in the morning and read all about it. What a day it’s going to be (or should I say evening?). I can tell that you are prepared well. You certainly have been the picture of patience and now you have your reward quickly approaching. Hearing again is a beautiful experience and I’m sure that having a “CI sister” is going to help a great deal. I’m glad she’s doing so well and feel sure that you will also. Alice -- No virus found in this incoming message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.7.1 - Release Date: 1/19/2005 -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.7.1 - Release Date: 1/19/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 , Why won't you go anywhere by yourself? What are you afraid of? I will pray that you stop living in fear. www.geocities.com/remaking_me www.keen.com/newlifeforever <memyselves@...> wrote: Hi there friends, I like to start off my e-mails by saying hi to my friends. I really do feel like you all are my friends, even though we have never actually met. Well, I am done 3.3 pounds today. I am making Saturdays be my official weigh in day. I didn't make my goal of getting into the 200's this week, but I am really really close. I am hoping to make that goal by next Saturday. This is my first major goal that I have set for myself. So far I have lost a total of 39.2 pounds. I took my measurements the other day, but haven't taken them yet again. I couldn't get the tape to go all the way around my butt, but I was able to take the others. So how is everyone else's day going? Mine is going good so far, but I can't think of anything to eat for lunch and I know with my diabetes I have to eat. I need to go to the store, but won't go without my husband and he is working today. He works on Saturdays and Sundays. I get too nervous trying to go somewhere by myself. I can leave to go pick him up from work, but actually going where there are other people would just be too hard for me to do by myself just yet. Maybe some day. There was a time when I could go places by myself, but that was a long time ago. I would like to get where I can again, but I just have to take baby steps on that. 340/300.8/135 Relax. virus scanning helps detect nasty viruses! Brings words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 That's great, ! You are soooo close to hitting your goal! Congratulations, lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 WTG 3.3 pounds is great!!! you go girl!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Thanks! I am so excited that I am almost there. Then I will have to set a new goal. 340/300.8/135 Re: Almost thereThat's great, ! You are soooo close to hitting your goal! Congratulations, lady :)100-Plus Files page 100-plus/files100-Plus Links page 100-plus/links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Thanks Myssi! Re: Almost thereWTG 3.3 pounds is great!!! you go girl!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 , I have a lot of mental issues. I easily panic when I am out in public. Thank you for the prayers. I can sure use them. Re: Almost there,Why won't you go anywhere by yourself? What are you afraid of? I will pray that you stop living in fear. www.geocitiescom/remaking_mewwwkeen.com/newlifeforever <memyselves@...> wrote:Hi there friends, I like to start off my e-mails by saying hi to my friends. I really do feel like you all are my friends, even though we have never actually met. Well, I am done 3.3 pounds today. I am making Saturdays be my official weigh in day. I didn't make my goal of getting into the 200's this week, but I am really really close. I am hoping to make that goal by next Saturday. This is my first major goal that I have set for myself. So far I have lost a total of 39.2 pounds. I took my measurements the other day, but haven't taken them yet again. I couldn't get the tape to go all the way around my butt, but I was able to take the others. So how is everyone else's day going? Mine is going good so far, but I can't think of anything to eat for lunch and I know with my diabetes I have to eat. I need to go to the store, but won't go without my husband and he is working today. He works on Saturdays and Sundays. I get too nervous trying to go somewhere by myself. I can leave to go pick him up from work, but actually going where there are other people would just be too hard for me to do by myself just yet. Maybe some day. There was a time when I could go places by myself, but that was a long time ago. I would like to get where I can again, but I just have to take baby steps on that. 340/300.8/135Relax. virus scanning helps detect nasty viruses! Brings words and photos together (easily) withPhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Congratulations ... that is so wonderful! You will be in the 200's soon! I'm doing good... I know I'm not getting all of the e mails though and then some I get well after others have responded, so they are out of order and very delayed. Some I never get. I hope gets straightened out soon. But I'm chugging along taking it one day at a time. Tomorrow is my weigh day, but I'm thinking about changing to Saturday mornings. Take Care,Amy294/281/140(7 more lbs to reach my first 20 lb weight loss goal) ID: amy102090 Almost there Hi there friends, I like to start off my e-mails by saying hi to my friends. I really do feel like you all are my friends, even though we have never actually met. Well, I am done 3.3 pounds today. I am making Saturdays be my official weigh in day. I didn't make my goal of getting into the 200's this week, but I am really really close. I am hoping to make that goal by next Saturday. This is my first major goal that I have set for myself. So far I have lost a total of 39.2 pounds. I took my measurements the other day, but haven't taken them yet again. I couldn't get the tape to go all the way around my butt, but I was able to take the others. So how is everyone else's day going? Mine is going good so far, but I can't think of anything to eat for lunch and I know with my diabetes I have to eat. I need to go to the store, but won't go without my husband and he is working today. He works on Saturdays and Sundays. I get too nervous trying to go somewhere by myself. I can leave to go pick him up from work, but actually going where there are other people would just be too hard for me to do by myself just yet. Maybe some day. There was a time when I could go places by myself, but that was a long time ago. I would like to get where I can again, but I just have to take baby steps on that. 340/300.8/135 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 baby steps. You will do it. Make it part of your goal to be able to go out without fear. I totally understand fear. Journal it into your goals. NH... Mom to Abby Liz 10/94 Anne 7/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 Evan went in for his appoint. at the Cranio yesterday, and they wrote the Rx and sent us down for the band (the hospital makes their own)they casted him and said it would be in next week. They did not give me any numbers or pictures other than the Ortho saying his ears were off 14?? Is that common? Do I just need to ask for the measurements as we go? They also told me they would do adjustments every two weeks and the Cranio would see us once a month, they said I would probably in for more adjustments the 1st month and if he went through a growth spurt. I have not seen anyone post about going back to the cranio is that common? I don't mind going back to her they take the 3-D pictures there but actually sent me to an adjoining hospital for casting. Plus she said she never had my type insurance (we have all kids through IL) deny one of her claims so I am keeping my fingers crossed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 Is Cranio a cranio facial specialist? We saw a cranio facial plastic surgeon. we were referred by our ped and the specialist wrote our prescription. We had two follow up visits with him, and our ortho sent him copies of our scan in between to monitor progress. He made sure we were seeing good progress, and helped us decide when we were " done " . -christine sydney 22 mo starband grad > > Evan went in for his appoint. at the Cranio yesterday, and they wrote > the Rx and sent us down for the band (the hospital makes their > own)they casted him and said it would be in next week. They did not > give me any numbers or pictures other than the Ortho saying his ears > were off 14?? > Is that common? Do I just need to ask for the measurements as we go? > They also told me they would do adjustments every two weeks and the > Cranio would see us once a month, they said I would probably in for > more adjustments the 1st month and if he went through a growth spurt. > I have not seen anyone post about going back to the cranio is that > common? I don't mind going back to her they take the 3-D pictures > there but actually sent me to an adjoining hospital for casting. Plus > she said she never had my type insurance (we have all kids through IL) > deny one of her claims so I am keeping my fingers crossed. > Quote Link to comment Share on other sites More sharing options...
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