Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 ---------- Original Message ---------------------------------- From: Caroline Baylis <caroline@...> Reply-Stillsdisease Date: Sat, 25 Oct 2003 15:58:38 +0100 >Hi All > >Thank you to everyone who replied to 's e mail about >temperatures and the rash. > >I am home from hospital on 'weekend leave' and have to return on Monday >morning. The docs are mystified about why my temp only registers in my >ear and not my mouth, and are also divided over what the cause of all >the other symptoms are too. AOSD is still on the cards, but I'm being >tested for all sorts of other weird and wonderful things as well. They >have found lymph nodes up under my arms and I will have a 'PET' scan >next week some time, which should show up any inflammation. Then they >may biopsy the lymph nodes. Anyone have any experience of any of the >above? I'll also have a TB test, although to my knowledge I've never >been in contact with it. > >Anyway, " Hi " to all the new people. I hope to be more in touch when I >get home properly. > >Love to all. > >Caroline 2 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Amber, We are all pulling for you. Call me when you can talk soon, and you are very welcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hi Amber, Yes you can use Tylers story. He is doing ok, having a hard time with the brace. And no for us the cast was not that hard to manage. Our experience was a very positive one. Tyler was in three different casts and he did great. I know some children do well in bracing but that has not been our experience. The cast was just a way of life it never came on and off like the brace. He pulls on the brace and his breathing is labored. I am going to try to get him in another cast or at the very least a new brace that fits better. Good luck with your surgery. If you need any pictures of Tyler for your packet just let me know. I have pictures of him in all three casts and before and after pictures of his back sitting next to his twin brother. Take care Tawney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Unfortunately, it's not funny that you got more info here than you ever got from your docs. We've all had the same experience. I realize doctors can't know everything, and tests don't show everything, but I've become pretty jaded about doctor help. Of course, you do need them if you're going to have surgery ... There should be home surgery kits. Ann thanks this is Jess. i'd just like to say thanks to everyone that responded to my plee. its funny but out of just two days of emails from you guys i was given more information then that i got from my specialist (for 6yrs) and two physiotherapists. well thanks, i'll look into all the info. --------------------------------- Personals - New people, new possibilities. FREE for a limited time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Dear Lise, There are quite a few members here your age. I'm old now but was first diagnosed at 19. For many years I didn't know anyone with Stills. It is surely wonderful to have this group. I'm sure you will make friends of your age here, all ages too. I do not take MTX so cannot help there, but when I had monthlies, there were never affected by my Stills. Hope this helps, Melt thanks Secondly, my friend doesn't have her regular and she wondered if it's normal or not ! I think it is but as there are many people here, I prefer ask !! Are there many people of my age in this groups ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Dear Lise, There are quite a few members here your age. I'm old now but was first diagnosed at 19. For many years I didn't know anyone with Stills. It is surely wonderful to have this group. I'm sure you will make friends of your age here, all ages too. I do not take MTX so cannot help there, but when I had monthlies, there were never affected by my Stills. Hope this helps, Melt thanks Secondly, my friend doesn't have her regular and she wondered if it's normal or not ! I think it is but as there are many people here, I prefer ask !! Are there many people of my age in this groups ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi Lise.. Welcome to the group first off. Dont worry about your translations, you do fine. About the nausea and MTX. I have found that taking Folic Acid helps alot with controlling some of the side effects that come along with the MTX. I am not sure if you are on the pill form or injection. If you are on the pill form, then see about splitting your dosage up in the day instead of all at one time. As far as your friend.. It depends on the medications she is on. I know the MTX has screwed up my cycle some. But she should talk to her dr about that as well. Hope this helps some. Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi Lise, MTX made me nauseous also. A friend here suggested that I split the dose into three times. I don't know how much you are taking but I took six pills. I would take two in the morning, two in the evening and two the next morning. It worked GREAT. But, as always, check with your doctor. California Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Anytime! > Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 You know I went back and looked and I realized that you have changed much more then I said. Now don't take this the wrong way but in your before picture your head looks tiny, too small for your body, in the after picture your body is more proportional to your head. That to me signifies a great fat loss! You say 27lbs lost but I think you may have gained some muscle mass in there and lost some fat that the scale isn't telling you. Awsome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Oh yes Kathi, Your 40 lb question. It really is difficult to say how much more to loose especially when scale weight doesn't tell us the whole story. I would need to know your current BF% and Weight in lbs to calculate whether 40lbs is doable or needed. The thing is that muscle is much more dense, you could gain muscle and loose fat without the scale even moving but your pants will fall off...its not as easy as picking a number and decideing that is the goal weight loss. If you continue on the path you are on I believe, and I mean this truly, that you will be amazed at your progress by June. Keep up whatever it is that you are doing, its working! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 ---hey there..well I have been going by scale weight cause i weigh over 200 lbs. so really I have just been going for fat loss and maintaining my muscle. I know there is no way on this green earth i can be 200lbs or over and be like 19 percent body fat which is where i might like to be. does that make sense? Ihave no desire to really gain any more muscle cause i have freakin so much and it is very easy for me to get it. but i know..the more muscle ther more fat you burn. I think if I go by 40 more lbs of scale weight that could really do alot and measure alot. and like you said..maybe it will be more fat lost than the scale says..that's all good!!! am I making any kind of sense? I have had the experiance that watching the scale for me when I am over 200lbs is critical. I should not have to weight that. I refuse i tell ya!!! lol..thanks steph..can i call you steph? you are awesomeness..a great support!!! Kathi In , " " <livernspleen@y...> wrote: > Oh yes Kathi, > Your 40 lb question. It really is difficult to say how much more to > loose especially when scale weight doesn't tell us the whole story. I > would need to know your current BF% and Weight in lbs to calculate > whether 40lbs is doable or needed. The thing is that muscle is much > more dense, you could gain muscle and loose fat without the scale > even moving but your pants will fall off...its not as easy as picking > a number and decideing that is the goal weight loss. > If you continue on the path you are on I believe, and I mean this > truly, that you will be amazed at your progress by June. > Keep up whatever it is that you are doing, its working! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 What do you mean " just 9 inches " ?!?!?!? That is fabulous! If one of us lost 9 inches you would commend us on hard work, but you did it so you are minimizing it?! Boy-you have done a TREMENDOUS job! I am so proud of you! Keep up the great work! Don't worry about lbs lost, just keep up the great job and you'll lose the inches that you want to lose!!! You motivate me Kathi! gina > > Kathi! Your waist! You have a waist! How many inches do you think > you lost there? It looks like a lot. Great job! :-) > > > > > > > > here is pics hopefully this > works > > > > > > Okay..I am not good a posting links..but let's try this..here we go > > > > http://felix.homeip.net/Front.jpg > > > > any comments appreciated..this is from january 2003 till today. > > remember..I pretty much screwed up last year from my stupid diet. > > and..let me know if you think I have maybe 40 more lbs or more to > loose. > > Thanks > > Kathi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 As I just wrote to heather - I'm definitely asking for a neurosurgery consult in Cincinnati. I'm a big believer in docs missing things <g> I appreciate your sharing your story so much. I've belonged to this board for three days and I've already gotten a ton of info. Steph - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Hey - Thanks - will check that shake out. Hope it's not a sweet shake - Princess Lily doesn't like sweets - can you believe it? She def. does NOT take after me - I could live on chocolate. She refused Mc's fries and shakes - so guess who eats them?? *waving* But she has gained 6 oz so far on the Periactin . . .fingers crossed. (you know she'll hate the shakes and I will love them) Will look for that other 0 - 20 post too . . .maybe these boards can get me a diagnosis yet <g> take care- Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Thanks for making all these changes for us ! HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 If you get the chance, check out the links and let me know if there are anymore you need me to remove. Im here to help! > Thanks for making all these changes for us ! > > HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 You got my prayers, gamblin' man. On Jun 11, 2004, at 9:20 AM, RJS wrote: > thanks mike, > > i guess i needed to hear that. i sure do understand your concerns > about > iraq. we have kids dying for the " country " and freedom in general > and we > all sit here and watch gas go so far out of sight ive totally lost my > dream > of ever having a travel trailer so i can just disappear and meet some > of > the zapper folks for real. thats lifs, cant do much about that. > > i totally agreed with doing saddam and his cronies in. but to now be > losing our young bucks and buckettes to a lot of cruel senseless, > people > that hate americans anyway. i dont get that part. im pretty much > against > it all now. > > and the p.o.w. stuff....wow......powerful potions working in the minds > or > our troops there....teach them to kill, teach them to hate, and them > lock > them up for not knowing the exact fine line. and you can bet a lot of > the > stuff going on comes from the top who is far to insulated to be > punished in > any way but possible forced retirement. > > i just wanted to show you mike, that most of us arent one side of the > road > or the other....we also get stuck in the middle trying to figure out > whats > right and wrong. > > by the way,,,,, i go under the knife for the left hip replacement on > july > 16th. any thoughts or prayers would sho' nuff would be preceated. i > tried > to do both at one time but the doc said,,,,no sense trying to add to > the > chance you may not make it....lets take baby steps.....i said yes sir, > like > the meek little guy i am....(ha ha). now i have two weeks to fight > off my > morpine addiction just so they can readict me after the surgery... > aint we > got fun. > > y'all be happy > > bobby in missippi my drawl is coming along real well for only > being a southerner a bit over a year wouldnt you think..... it took me > about 10 months to realize that youse guys was y'all in the south. > > > > > > Please visit the Zapper homepage at > http://www.ZapLife.org > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 I for one am very upset with the group and some of the remarks that have been made on here about the war and politics in general. This is not what we are here for. We are here for support and friendship and to help each other through sharing our feelings regarding icds. I am very proud to be an American. I consider myself blessed to live in a country where everyone has the right to voice there opinion on what is going on in the world and how we feel about world wide situations and our own government. For that right many of our families have fought in various wars to give us that freedom. I hate war and killing. I hate knowing that in order to protect our freedom that many of our finest young people will have to put their lives on the line. My husband was in the Air Force, my oldest son is still in the military. He served in the gulf war and is currently in Baghdad. WE are not allowed to know for sure where or what he is doing but he is there and does not feel it is wrong to be there. Many of my sons friends have wives back here in the states with families. You may not stand behind the government decision to go to war but please stand behind our troops. I am disgusted with the attitude of many on this board, where did all the old memers go what has happened to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 My sentiments exactly Sharon.... If you bring politics to this Board you end up with stressed people - something that is not good for our conditions. Without politics on this Board we have a safe place to come for support of our health concerns. Lets keep this a safe place to come. ~guin P.S. Bobby - our thoughts and prayers will be with you for your surgery next month. I for one am very upset with the group and some of the remarks that have been made on here about the war and politics in general. This is not what we are here for. We are here for support and friendship and to help each other through sharing our feelings regarding icds. I am very proud to be an American. I consider myself blessed to live in a country where everyone has the right to voice there opinion on what is going on in the world and how we feel about world wide situations and our own government. For that right many of our families have fought in various wars to give us that freedom. I hate war and killing. I hate knowing that in order to protect our freedom that many of our finest young people will have to put their lives on the line. My husband was in the Air Force, my oldest son is still in the military. He served in the gulf war and is currently in Baghdad. WE are not allowed to know for sure where or what he is doing but he is there and does not feel it is wrong to be there. Many of my sons friends have wives back here in the states with families. You may not stand behind the government decision to go to war but please stand behind our troops. I am disgusted with the attitude of many on this board, where did all the old memers go what has happened to this group. Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 No Bobby I wasn't directed at you. You are just to darn sweet. I think all this rain has made us cranky or restless, \\Love you Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 amen amen amen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 sharon, i sure hope your post was not directed at me. i fully support our troops, women and men. my gosh, i live in a military town and i give cudos to my neighbors everytime i speak with them. i to am an air force veteran, so long ago that i was stationed in alaska the day president kennedy was assassinated. when this stinking war started i wrote to the pentagon and volunteered to go over and fly a desk to turn one our younger that wanted more than sitting at a desk to serve.. sure, they turned me down,,,, but illness and all i would darn sure have gone if they had let me. i still love the group and everyone on it. as you said sharon...opinions are what make this a great country. bobby in missippi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Bobby; I cannot speak for Sharon - But I can tell you that MY comments were NOT directed to you in the least.... Lets ALL get along and leave politics out of here!!! ~guin sharon,i sure hope your post was not directed at me. i fully support our troops, women and men. Quote Link to comment Share on other sites More sharing options...
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