Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 taeboy0rky wrote: To make the fat cat marketing people even richer Jill who hates that so often they just change the dollar sign to a pound sign on goods sold both in the US & UK.... talk about rip-off.... Yes, that's true. I know people have to make a living, but then they often price things so they're out of the reach of some. Sandie, Tae and Bo )!!!!! " Believe. Believe in yourself. Believe in the one who believes in you. All things are possible to she who believes. Blessings on your courage. " --from " Hold That Thought " by Ban Breathnach " I was always looking outside myself for strength and confidence, but it comes from within. It is there all the time. " --------- Freud --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Hello, My name is Corina and I am the parent of a 5 year old autistic child. My husband and I had always heard that the best therapy for our daughter would be a sibling. We finally added one to our family and she is 2 months old. So, someone please tell me, does it get easier????? I just can't imagine how another sibling is the best therapy. Right now we are seeing our older child regress and her behavior has become a bit more aggressive since the birth of her sister. She finally acknowledges the baby is a part of the familly by referring to her as " baby sister. " My daughter does not communicate well but she does get her point across in her own way. The only good thing I have seen is that she gets so mad with the baby that she screams out her demands and is able to do so in a more articulate manner. We are actually hearing 5 and 6 word sentences! I just want to know what we can do to help our daughter adjust. For those of you who had another child after your autistic child was born, what suggestions do you have? The therapist just says for us to be patient but he does not have to live in our household and after 2 months of this, it is easier said than done. For the past 2 days for example, my duaghter has undressed herself and thrown major fits after I had already gotten her ready for school. I usually get her ready and leave for work. My husband drops her off at school. It takes both of us to get her dressed now when we had progressed to the point where she actually helped one of us get her ready. This behavior has only occurred in the past 2 months since the birth of the baby. family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 The best thing I ever bought was a flowbee. It hooks to your vacuum and cuts their hair. Vicki New Member Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5 year old has been diagnosed with Asperger's and my 3 year old has PDD. They were both diagnosed within the last 6 months, so I am somewhat new to this. I am in the process of learning all I can about the subject and treatment options. I would appreciate any information which might be helpful. I do have a specific question: Does anyone have any advice on how to take my child to get a haircut without him freaking out? Thanks. Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. Schafer Autism Report News and information on Autism To Subscribe http://home.sprynet.com/~schafer/index.html Healing Autism: No Finer Cause on the Planet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Where do you live? There are some hairstylists that will come to your home and some that work out of their homes. That seems to work better. If you live in Austin, I can help you with specific people. Also, I would seriously recommend you consider looking into having a home ABA program for your kids. They are young and at the perfect age to benefit from it. New Member > Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5 > year old has been diagnosed with Asperger's and my 3 year old has > PDD. They were both diagnosed within the last 6 months, so I am > somewhat new to this. I am in the process of learning all I can > about the subject and treatment options. I would appreciate any > information which might be helpful. I do have a specific question: > Does anyone have any advice on how to take my child to get a haircut > without him freaking out? Thanks. > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > Schafer Autism Report > News and information on Autism > To Subscribe http://home.sprynet.com/~schafer/index.html > Healing Autism: No Finer Cause on the Planet > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 We live in Houston, and my older son's hairdresser agreed to cut my ASD son's hair. We take the TV/VCR with us and his favorite video, and she takes her time with him, but we do pay her double her fee. New Member > Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5 > year old has been diagnosed with Asperger's and my 3 year old has > PDD. They were both diagnosed within the last 6 months, so I am > somewhat new to this. I am in the process of learning all I can > about the subject and treatment options. I would appreciate any > information which might be helpful. I do have a specific question: > Does anyone have any advice on how to take my child to get a haircut > without him freaking out? Thanks. > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > Schafer Autism Report > News and information on Autism > To Subscribe http://home.sprynet.com/~schafer/index.html > Healing Autism: No Finer Cause on the Planet > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 If you are in Dallas, there is a great stylist who is wonderful with children with autism. She has her own shop, Tots to Teens, in Plano and her name is Robin. Her shop has tv's with lots of kids movies, toys, special chairs, the works. She is very patient and very fast. Anissa New Member > > > > Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5 > > year old has been diagnosed with Asperger's and my 3 year old has > > PDD. They were both diagnosed within the last 6 months, so I am > > somewhat new to this. I am in the process of learning all I can > > about the subject and treatment options. I would appreciate any > > information which might be helpful. I do have a specific question: > > Does anyone have any advice on how to take my child to get a haircut > > without him freaking out? Thanks. > > > > > > > > Unlocking Autism > > www.UnlockingAutism.org > > > > Autism-Awareness-Action > > Worldwide internet group for parents who have a > > child with AUTISM. > > > > Schafer Autism Report > > News and information on Autism > > To Subscribe http://home.sprynet.com/~schafer/index.html > > Healing Autism: No Finer Cause on the Planet > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 That wasn't a big problem for us, so I don't know from our own experience with this specific question. But we have had similar type problems, so here is one suggestion you might try....go to a salon specializing in kids, the ones that have TV's , bring your child's favorite video and allow them to watch the video WHILE & ONLY- their hair is being cut. This has worked for us in other similar types of problems. J. P. Reirdon Webmaster http://www.featnt.org/ <http://www.featnt.org/> <http://www.autismtreatment.info/> http://www.autismtreatment.info/ You CAN treat Autism!! Get treatment tips for children with Autism, PDD and Aperger's Syndrome from parents who have successfully helped their children. New Member Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5 year old has been diagnosed with Asperger's and my 3 year old has PDD. They were both diagnosed within the last 6 months, so I am somewhat new to this. I am in the process of learning all I can about the subject and treatment options. I would appreciate any information which might be helpful. I do have a specific question: Does anyone have any advice on how to take my child to get a haircut without him freaking out? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Welcome Jeffery, Sorry to hear you got AOSD but just think how great it is after having all those tests for all those horrible things to come up with no results and just have Stills. Good old aches and pains and rashes and thangs. Welcome to Stilligans Island as we refer to it. This is a strange place inhabited by strange folks. Not really, you will find this is the best dang place you ever seen, and the folks here are very helpful and friendly. There are a few of us here that are old geezers. I am somewhere around 55. Dan Montana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Hi Welcome to the group! Lots of support here. All the best Heidi Ontario Canada new member My name is Hofstein and I, too suffer from AOSD.I was diagnosed with it last July and I have loads of curious questions about this rare disease. My birthday is February 11 and I'm 50 years old. My brief story was that one day last March...2002, I woke up one morning and couldn't walk. It felt like my ankles were going to crack when I attempted to get out of bed. I also had this rash all over my neck, chest, back, and legs. I was frightened and knew something was wrong. Up until that morning I was relatively normal. I do have allergies and a mild case of asthma. As days went by my condition was worsening. I had trouble swallowing and I was always cold. When I went to my Dr., he sent me for blood work and it was determined that my whites were very high and my reds were very low. My GP Dr. then referred me to a hemothologist/oncologist for further testing. As the weeks/months went by, I was tested for every possible disease and everthing came up normal. I begged for medication because I was in constant pain in all of my joints. I was losing weight rapidly with no appetite whatsoever. And I am one that loves to eat. Finally after 4 months of testing, the Hemothologist dismissed me claiming hat his work found nothing wrong. But I knew there was something Very wrong. I went back to my GP and he was thinking of sending me to a Rheumotologist. A friend of m family upon hearing of my symptoms referred me to her Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went to see him, he looked at my chart and knew exactly what was wrong. He described the symptoms and knew by readings of my white and red blood counts. He immediately prescribed prednisone and methotrexate and I immediately felt better. It's been a little over a year since I've been diadnosed with AOSD, and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a lot of good days, but I also have some bad ones. When I have a bad day, everything hurts. From neck to toes, my joints are swollen and painful. Dr. Storch is going to be taking me off Embrel because it's not strong enough and putting me on Remicade(?). I will start this medication when he's back from vacation. That's my story and I'm thrilled that there's a support group because nobody can relate to what I go through sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Hi , Welcome to this support group! I think there are a few others with the Stills Disease (or the " Dragon " as we sometimes call the disease) who live in your area. You will certainly learn everything you never wanted to know about this strange disease from this group. Ask any questions you might have, and you will usually receive an answer. My name is Tricia and I'm from Wisconsin, I live about 2 hours South of Tom Kufahl the man who founded this support group. I have had the disease steady since 1979. If you would like to read my " member history " sometime please go to www.stillsdisease.org then click on " member histories, " then click on Tricia Looker. Happy to meet you , and look forward to getting to know you better! Your Stills friend from Wisconsin, ~~tricia~~ ***************************************************************************** ************* -- new member My name is Hofstein and I, too suffer from AOSD.I was diagnosed with it last July and I have loads of curious questions about this rare disease. My birthday is February 11 and I'm 50 years old. My brief story was that one day last March...2002, I woke up one morning and couldn't walk. It felt like my ankles were going to crack when I attempted to get out of bed. I also had this rash all over my neck, chest, back, and legs I was frightened and knew something was wrong. Up until that morning I was relatively normal. I do have allergies and a mild case of asthma. As days went by my condition was worsening. I had trouble swallowing and I was always cold. When I went to my Dr., he sent me for blood work and it was determined that my whites were very high and my reds were very low. My GP Dr. then referred me to a hemothologist/oncologist for further testing As the weeks/months went by, I was tested for every possible disease and everthing came up normal. I begged for medication because I was in constant pain in all of my joints. I was losing weight rapidly with no appetite whatsoever And I am one that loves to eat. Finally after 4 months of testing, the Hemothologist dismissed me claiming hat his work found nothing wrong. But I knew there was something Very wrong. I went back to my GP and he was thinking of sending me to a Rheumotologist. A friend of m family upon hearing of my symptoms referred me to her Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went to see him, he looked at my chart and knew exactly what was wrong. He described the symptoms and knew by readings of my white and red blood counts. He immediately prescribed prednisone and methotrexate and I immediately felt better. It's been a little over a year since I've been diadnosed with AOSD, and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a lot of good days, but I also have some bad ones. When I have a bad day, everything hurts. From neck to toes, my joints are swollen and painful. Dr. Storch is going to be taking me off Embrel because it's not strong enough and putting me on Remicade(?). I will start this medication when he's back from vacation. That's my story and I'm thrilled that there's a support group because nobody can relate to what I go through sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Hello Jeffery welcome to the best support group for Stills well it is probally the only 1 eh.Im Docken from Canada i went through pretty much all uve been through bro its very rough (happy to say i consider myself one of the lucky ones well soo far).Just like you it hit very fast was little stiff in morn then within a few hours i could hardly walk,and just like you i was dismissed couldnt find anything wrong.My doctor put me on antibiotics for 2 months figuring it would help of course i got worse.I ended up in hospital with the rash,pleuacy,pericardis,jointpains,anemia and just like you test after test.Finally after 3 months in hospital was seen by rhumy who told me amost immediatly i prob had Stills.Im currently on 8mgs of prednisone and 20mgs of methotextrate.I can personally tell u it can get better im currently back workin cement finishing and very little pains,but i was tricked once already by the dragon soo im lovin it while it lasts.You take care and welcome home. d.Canada new member My name is Hofstein and I, too suffer from AOSD.I was diagnosed with it last July and I have loads of curious questions about this rare disease. My birthday is February 11 and I'm 50 years old. My brief story was that one day last March...2002, I woke up one morning and couldn't walk. It felt like my ankles were going to crack when I attempted to get out of bed. I also had this rash all over my neck, chest, back, and legs. I was frightened and knew something was wrong. Up until that morning I was relatively normal. I do have allergies and a mild case of asthma. As days went by my condition was worsening. I had trouble swallowing and I was always cold. When I went to my Dr., he sent me for blood work and it was determined that my whites were very high and my reds were very low. My GP Dr. then referred me to a hemothologist/oncologist for further testing. As the weeks/months went by, I was tested for every possible disease and everthing came up normal. I begged for medication because I was in constant pain in all of my joints. I was losing weight rapidly with no appetite whatsoever. And I am one that loves to eat. Finally after 4 months of testing, the Hemothologist dismissed me claiming hat his work found nothing wrong. But I knew there was something Very wrong. I went back to my GP and he was thinking of sending me to a Rheumotologist. A friend of m family upon hearing of my symptoms referred me to her Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went to see him, he looked at my chart and knew exactly what was wrong. He described the symptoms and knew by readings of my white and red blood counts. He immediately prescribed prednisone and methotrexate and I immediately felt better. It's been a little over a year since I've been diadnosed with AOSD, and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a lot of good days, but I also have some bad ones. When I have a bad day, everything hurts. From neck to toes, my joints are swollen and painful. Dr. Storch is going to be taking me off Embrel because it's not strong enough and putting me on Remicade(?). I will start this medication when he's back from vacation. That's my story and I'm thrilled that there's a support group because nobody can relate to what I go through sometimes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hi Dennis.. First off welcome home.. You have found a wonderful support group here.. Feel free to vent, ask anything or just chime in.. lol.. I am currently on 25mgs a week of Methotrexate (MTX) by injection, 1mg Folic Acid daily, 10mgs daily Prednisone, 75 mgs twice a day Voltaren and Vicoden for the pain.. Since I have started the MTX by injection I have been able to work more and have started to feel better.. Mind you I still get tired. But the pain in my hip, knees and legs are no where near the pain it was. I don't have any children, but I am able to spend more time now with my family, friends and do things with my neice's and nephews. Little by little I have been able to do more. You just learn to deal and accept your new limitations that the " dragon " has bestowed on you.. lol.. We are all here for you and welcome you home with open arms.. I am truly sorry that you have this disease, but you are in a wonderful place here.. I was diagnosed in October 2002 after being sick for 2 1/2 yrs.. I am grateful for the help and input of the group.. Look forward to hearing more about you and from you.. Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hello Dennis sorry to hear u hav Stills,or the dragon as is are little nickname.I surely kno wht u mean about playin with ur kids even tho i dont hav any.Its the little things in life that u miss when ur in the kind of pain that Stills causes.I was diagnosed bout a year ago and went though a really tuff 7 months,as of now i feel fairly normal again soo it can get better bro.I also realize the dragon can strike back hard and is unpredictable soo my fingers are crossed.Im currently on 8mgs of prednisone and 20mgs of methotextrate and that combo really seems to be workin for me but as others will tell you the were all react soo differently to the different meds for Stills.myself too i feel stiffness in morn still but not even close to what it was before i would wake up cramped up real bad too.Take care and welcome hope u get to play with ur little ones soon. d.Canada New Member Hello everyone. My name is Dennis Brock and I was recentley diagnosed with stills disease. I have had severe joint pain and mild fevers usually around 99-100. Restlesness and sleepness and a rash on my legs around the thigh area. I have tested negative for the RF Factor..The last time my C reactive Protein was checked it was 9.72 which is supposed to be .2 to .8 from what my RD said.I have had severe hip pain. Pain in my ankles knees and shoulders to the point I cannot hardly get out of bed some mornings. The morning stiffness usually last around 45 min sometimes longer and sometimes sooner. I take Plaqenuil 200mg bid, darvacet n100 tid, prednisone 20 mg bid, ativan 1mg qd and feldene 20mg qd. It has made me a bear sometimes and I can say it has affected my life and my job. It is difficult sometimes. I guess the biggest thing for me and I cant play with my kids some days because of the pain and work somedays is somewhat unbearable. I take my pain medicine but sometimes it does not touch the pain.. I want to ask my RD for something stronger but dont want to be messed up all the time. I am going to ask about humira to see if that is something that would be benificial for me. I also had a bone scan which shows I have norrowing or deteoration of the shoulders. I have made up my mind that I will not let this thing get the best of me. Anyone have any comments on coping espically when it hurts you mentally and physically sometimes to play with your kids. Thanks All, Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Dennis, My name is Dave. I have severe adult onset stills dz. I'm 21 years old and I live in South fla, I want to welcome you to our wonderful support organization group. We are here for you day and night 24/7 When ever you need to vent where here for you!!! If you need any information or questions or anything else or just would like to chat just E-mail anytime My e-mail address is wave678@.... Again welcome to the stilligans family. Sincerely --------Dave wave678@... hope you feel better soon and be PAIN FREE!!!!!!!!!! take care dennnis. bye for now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Dennis, I'm Caroline (2) and am newly diagnosed with Stills as well. I have three children, aged 9, 7 and 4 and understand exactly what you mean about being a bear and not being able to play with them when you feel rough. I struggle with that fact that for the past year my children have had to get used to me being irritable, tired and unable to do little more than 'survive' as I have lurched from one crisis to another. I have spent many days in hospital, under gone countless tests, and had major abdominal surgery. It is very hard when you wince every time they come up to cuddle you. It's very difficult to hide the fact that it hurts or you feel awful. My husband is a fantastic support and does endless things with the children, but that is difficult too as I feel like he gives them all the fun in life and I'm the tired, grumpy one. But those are just the bad days, and I'm amazed how the children adapt. I do hate the fact that they know I can't join in the rough and tumble stuff, but that's life at the moment and there's not much I can do to change it. The new medication I'm on - Prednisolone - is gradually helping, and I have finally found a doc who seems to know what he's talking about, which is reassuring. Sometimes I take Tramadol for joint pain, although I only take it when desperate as it makes me rather stoned and sleepy. Still, it works, and offers relief when I need it. On a more positive note, the children have become more independent and willing and able to do more for themselves, like shower each other when getting up the stairs is too much effort for their mum! The older two help with the younger one and all three are incredibly caring with me when I'm feeling bad. They never hold a grudge when I've been ratty with them either! We try to arrange to do things together, trips out or just go for coffee at the local cafe. And I try not to beat myself up with guilt that I can't be all things to all people, and that would include my husband too, as sure as hell he didn't bargain for such a sickly wife when he said " In sickness and in health " !! Anyway, I hope the good days go some way to making up for the bad. All the best. Caroline the second. On Saturday, August 9, 2003, at 11:11 PM, CplBrock wrote: > Hello everyone. My name is Dennis Brock and I was recentley > diagnosed with stills disease. I have had severe joint pain and > mild fevers usually around 99-100. Restlesness and sleepness and a > rash on my legs around the thigh area. I have tested negative for > the RF Factor..The last time my C reactive Protein was checked it was > 9.72 which is supposed to be .2 to .8 from what my RD said.I have > had severe hip pain. Pain in my ankles knees and shoulders to the > point I cannot hardly get out of bed some mornings. The morning > stiffness usually last around 45 min sometimes longer and sometimes > sooner. I take Plaqenuil 200mg bid, darvacet n100 tid, prednisone > 20 mg bid, ativan 1mg qd and feldene 20mg qd. It has made me a bear > sometimes and I can say it has affected my life and my job. It is > difficult sometimes. I guess the biggest thing for me and I cant > play with my kids some days because of the pain and work somedays is > somewhat unbearable. I take my pain medicine but sometimes it does > not touch the pain.. I want to ask my RD for something stronger but > dont want to be messed up all the time. I am going to ask about > humira to see if that is something that would be benificial for me. > I also had a bone scan which shows I have norrowing or deteoration > of the shoulders. I have made up my mind that I will not let this > thing get the best of me. Anyone have any comments on coping > espically when it hurts you mentally and physically sometimes to > play with your kids. > > Thanks All, > Dennis > > > <image.tiff> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Dennis, Welcome to The Still Disease Support Group! We are glad to have you join us, but at the same time very sorry you are also fighting the mean " dragon " Stills Disease. My first bout with the disease was in 1971, then a short non-med remission, hit again in 1973, another non-med remission (gave birth to a healthy baby boy in 1975) then in 1979 the disease came back with a vengence and has never left. I did not receive a diagnosis for 16 years! I am so happy to learn that most are being diagnosed quite quickly nowadays. At present I am in a mostly remission, but still taking meds. Have had both shoulders and a knee totally replaced due to damage from the disease...but, at least they don't pain anymore. I share your concern about not being able to play with the kids. Our son was four when the disease " hit " and stayed. Even after these many years (he's almost 28 now) when I think back, I feel like I missed so much by not being able to run and play ball with him etc. We did watch a lot of " Sesame Street " and other programs like that together, and I read to him almost every single day. He had a stack of books, and sometimes it seemed we'd never get to bottom! It is one of his fondest memories, all of the reading we did together. When he entered school and learned to read...he read that same stack of books to me....often. How old are your children Dennis? There are many things you can do with them, the important thing for children is that you care enough to listen to them, and just *be* there for them. If you are in so much pain and still managing to go to work, (depending on their age) as I mentioned mainly *listen* to them...explain to them how you are feeling...ask them to get this or that for you..make them feel useful and important. They feel helpless too...they see you not feeling well, and knowing you hurt...and they hurt too. Children understand more than we sometimes think they do, even the very young ones. Well, anyway..I guess I'm " on the run with words " this afternoon! Again, welcome to the group! From Wisconsin, ~~tricia~~ ++++++++++++++++++++++++++++++++++++++++++++++++++++ -- New Member Hello everyone. My name is Dennis Brock and I was recentley diagnosed with stills disease. I have had severe joint pain and mild fevers usually around 99-100. Restlesness and sleepness and a rash on my legs around the thigh area. I have tested negative for the RF Factor..The last time my C reactive Protein was checked it was 9.72 which is supposed to be .2 to .8 from what my RD said.I have had severe hip pain. Pain in my ankles knees and shoulders to the point I cannot hardly get out of bed some mornings. The morning stiffness usually last around 45 min sometimes longer and sometimes sooner. I take Plaqenuil 200mg bid, darvacet n100 tid, prednisone 20 mg bid, ativan 1mg qd and feldene 20mg qd. It has made me a bear sometimes and I can say it has affected my life and my job. It is difficult sometimes. I guess the biggest thing for me and I cant play with my kids some days because of the pain and work somedays is somewhat unbearable. I take my pain medicine but sometimes it does not touch the pain.. I want to ask my RD for something stronger but dont want to be messed up all the time. I am going to ask about humira to see if that is something that would be benificial for me. I also had a bone scan which shows I have norrowing or deteoration of the shoulders. I have made up my mind that I will not let this thing get the best of me. Anyone have any comments on coping espically when it hurts you mentally and physically sometimes to play with your kids. Thanks All, Dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Dennis and welcome to our group, I think all of us understand how you are feeling and where you're going. This is a miserable disease and we all seem to take different medications and dose amounts to get us through the day. Some days are better than others. It took me years to be correctly diagnosed and I didn't even believe what Mayo Clinic told me as I had never heard of AOSD. There were times that I hurt so bad that my husband would take the dining room chairs and put them about two feet apart and I would slide myself to the bathroom as it hurt so much to walk. My son found this site for me and I've been forever grateful. What a pleasure??? to find others that know how I feel and what I am going through. I know what you mean!!! Maybe one day the cure will be found that is so simple that we will wonder why someone did not think of it before. Until then, we all plug along trying to help each other. Mentally, physically and emotionally. We're always there for each other. Again, welcome and please join in our posts and chats. xxoo Mi. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Hi Dennis, Your children are little ones yet, but they are still old enough (especially your daughter) to understand that " daddy hurts. " Have her rub your back or feet for you, and keep that communication thing going. They grow up so fast, that before you know it, they will be teenagers, and then you have already paved the way for " better* communication. Your wife is welcome to come to this site and " talk " with any of us any time she would like. She might have questions she would like answers to. Also, have you ordered any brochures yet? If not...they are FREE, and very informative. One of the first steps to trying to understand this disease is to understand what it is etc. ..the meds. the limitations it puts on us..etc. It would be good to get some of these not only for you and your wife, but for friends, relatives, doctors, nurses etc. Please send your name and snail mail address to " International Stills Disease Foundation Inc. 1123 S. Kimrel Ave. Panama City, FL. 32404-9007. Please specify how many brochures you would like. Bob & Carole Himes take care of this for the group. He will send at least 10 at one time. He and his wife are real sweethearts! Dennis, what kind of work do you do? Is it possible to take a day or two off a week to rest? You may need to get on some meds that work better for you also. Many of us had to quit working when we got sick because no matter what we did, we could not do it. I don't want to sound depressing, but you need to rest when you are tired and hurt bad so you don't end up in the hospital. A closing " happy thought. " Most people who get the Stills Disease, go into a complete remission within 2 years. Your Wisconsin friend, ~~tricia~~ ************************************************************************* -- Re: New Member Hi Tricia, I was diagnosed with stills I guess around 4-6 weeks ago but I have gone undiagnosed for a while. My little girl is 4 and I have a little boy who is 1. Brittany and . Some days I can play with them and some I cannot. On my off days we play around and we do stuff. During the week when I work it is somewhat harder because I dont rest near as much and it takes me longer to recuberate. My DW (wife) is very supportive and I understand her frustrations. She has said I have changed. I am not myself anymore. I agree with her. I dont know how to go back to the person I used to be when so much has changed. My temper is short, I am not the outgoing person I used to be. I want to stay home and rest. I want to sleep in and have no energy because I cannot sleep and when I do I wake up as tired as I was when I went to bed as well as the stiffness and the pain as associated with this mess. My and my little girl watch movies together and read books but its the physical stuff she misses. The climb on daddy like I am a monkey bar jumping on me piggy back rides and the going outside to play stuff. Alot of mornings she ask me Daddy does your bones hurt today. Can I play on you? I played with them both this morning. It hurts me more emotionally than the physical pain some days when I cannot. Thanks for listening. Its nice to talk to someone who understands where I am coming from. Thanks, Dennis-Atlanta,Ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Hi Dennis, Your children are little ones yet, but they are still old enough (especially your daughter) to understand that " daddy hurts. " Have her rub your back or feet for you, and keep that communication thing going. They grow up so fast, that before you know it, they will be teenagers, and then you have already paved the way for " better* communication. Your wife is welcome to come to this site and " talk " with any of us any time she would like. She might have questions she would like answers to. Also, have you ordered any brochures yet? If not...they are FREE, and very informative. One of the first steps to trying to understand this disease is to understand what it is etc. ..the meds. the limitations it puts on us..etc. It would be good to get some of these not only for you and your wife, but for friends, relatives, doctors, nurses etc. Please send your name and snail mail address to " International Stills Disease Foundation Inc. 1123 S. Kimrel Ave. Panama City, FL. 32404-9007. Please specify how many brochures you would like. Bob & Carole Himes take care of this for the group. He will send at least 10 at one time. He and his wife are real sweethearts! Dennis, what kind of work do you do? Is it possible to take a day or two off a week to rest? You may need to get on some meds that work better for you also. Many of us had to quit working when we got sick because no matter what we did, we could not do it. I don't want to sound depressing, but you need to rest when you are tired and hurt bad so you don't end up in the hospital. A closing " happy thought. " Most people who get the Stills Disease, go into a complete remission within 2 years. Your Wisconsin friend, ~~tricia~~ ************************************************************************* -- Re: New Member Hi Tricia, I was diagnosed with stills I guess around 4-6 weeks ago but I have gone undiagnosed for a while. My little girl is 4 and I have a little boy who is 1. Brittany and . Some days I can play with them and some I cannot. On my off days we play around and we do stuff. During the week when I work it is somewhat harder because I dont rest near as much and it takes me longer to recuberate. My DW (wife) is very supportive and I understand her frustrations. She has said I have changed. I am not myself anymore. I agree with her. I dont know how to go back to the person I used to be when so much has changed. My temper is short, I am not the outgoing person I used to be. I want to stay home and rest. I want to sleep in and have no energy because I cannot sleep and when I do I wake up as tired as I was when I went to bed as well as the stiffness and the pain as associated with this mess. My and my little girl watch movies together and read books but its the physical stuff she misses. The climb on daddy like I am a monkey bar jumping on me piggy back rides and the going outside to play stuff. Alot of mornings she ask me Daddy does your bones hurt today. Can I play on you? I played with them both this morning. It hurts me more emotionally than the physical pain some days when I cannot. Thanks for listening. Its nice to talk to someone who understands where I am coming from. Thanks, Dennis-Atlanta,Ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Hi , my name is Patti, I haven't been posting a lot lately becuz I have been feeling really good, but I just wanted to say a great big hi and hello and welcome. Enjoy this group and learn from them Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Wow crystal ur father sounds great,elevating couch wish that woulda been done for me ehh.If ur just starting on the methotextrate it will take a while to work took me about 6 months before i saw any results also ur doc will probally increase it gradually.Like ur kidnap story i too was kidnapped was trying to stay home and do things for myself for 1rst few months when the doctors had no clue,then my parents said thats enough ur comin home.Few days later i was addmmited with the high fever and pericardis then the joint pains rash ect almost 4 months later i finally was dx with Stills on oct 2002.My name is im from Alberta ,Canada welcome to ur little family. d.Canada New Member Hello, my name is Crystal. I have just this month been diagnosed with Stills disease. My onset was in November of last year. I " m currently taking Methatrexate, Prednisone, Folic Acid, Temazepam, Paxil, Fosamax, Protonix, Iron, Vitamin C, Melatonin, and Fiber. A lovely little cocktail in the evening. =) It seems to be helping though, so I'm not complaining. When my onset started, I was married, living in an appartment, and had a job. After about the frst month of so much pain, and not being able to do anything, my husband said he didn't want to take care of me anymore, I lost my job, and fortunately, was 'kidnapped' by my mom. She took me back to live with her and my dad, and they have been wonderful to me. My dad has made so many little modifications around the house, from elevating the coutch, to making extra steps so that I can move easier from one room to another. I have been so grateful to them. And by the way, I just got the confirmation that my husband has been served his divorce papers. =) So, right now, I'm just starting on the methatrexate, and I'm sure there will be many ups and downs before this dragon is under control. But it has given me a lot of opertunity for personal growth, and reflection. And my outlook right now, is to take the good days and do what I can with them, for tomorrow may be a bad day. Crystal Newell _________________________________________________________________ Add MSN 8 Internet Software to your current Internet access and enjoy patented spam control and more. Get two months FREE! http://join.msn.com/?page=dept/byoa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Wow crystal ur father sounds great,elevating couch wish that woulda been done for me ehh.If ur just starting on the methotextrate it will take a while to work took me about 6 months before i saw any results also ur doc will probally increase it gradually.Like ur kidnap story i too was kidnapped was trying to stay home and do things for myself for 1rst few months when the doctors had no clue,then my parents said thats enough ur comin home.Few days later i was addmmited with the high fever and pericardis then the joint pains rash ect almost 4 months later i finally was dx with Stills on oct 2002.My name is im from Alberta ,Canada welcome to ur little family. d.Canada New Member Hello, my name is Crystal. I have just this month been diagnosed with Stills disease. My onset was in November of last year. I " m currently taking Methatrexate, Prednisone, Folic Acid, Temazepam, Paxil, Fosamax, Protonix, Iron, Vitamin C, Melatonin, and Fiber. A lovely little cocktail in the evening. =) It seems to be helping though, so I'm not complaining. When my onset started, I was married, living in an appartment, and had a job. After about the frst month of so much pain, and not being able to do anything, my husband said he didn't want to take care of me anymore, I lost my job, and fortunately, was 'kidnapped' by my mom. She took me back to live with her and my dad, and they have been wonderful to me. My dad has made so many little modifications around the house, from elevating the coutch, to making extra steps so that I can move easier from one room to another. I have been so grateful to them. And by the way, I just got the confirmation that my husband has been served his divorce papers. =) So, right now, I'm just starting on the methatrexate, and I'm sure there will be many ups and downs before this dragon is under control. But it has given me a lot of opertunity for personal growth, and reflection. And my outlook right now, is to take the good days and do what I can with them, for tomorrow may be a bad day. Crystal Newell _________________________________________________________________ Add MSN 8 Internet Software to your current Internet access and enjoy patented spam control and more. Get two months FREE! http://join.msn.com/?page=dept/byoa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Buffy, you don't have a TV show, do you? LOL You've come to the right place, my new friend. You can ask all your questions and get all the answers here. In our collective experience, ANY THING that could POSSIBLY go wrong or happen has happened to one of us. On of our numbers weighed over 800 pounds when the surgery was performed, so, although your weight is a concern in your " dying on the table, " other larger than you (I presume) have come though with no complications. Now a word of advice. Stay away from Jo, Marta, Cindee, and Mel in Bama. They are trouble makers. :-) LOL Welcome, welcome, welcome, Buffy. You have our friendship, support, and prayers. Jim _____ From: MM Hi Group, I have had my consultation with Dr. Z and attended the Dec. and Jan. support group meetings in Delano. I had a surgery date of Feb. 17, but I'm not ready emotionally for surgery. I'm scared of dying on the table. I'm hoping that more communication with others who have gone thru the surgery, or are considering it, or waiting for their surgery date, will help me come to terms with the fear and also other emotions connected with this decision. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 > Hi Group, > > I have had my consultation with Dr. Z and attended the Dec. and Jan. support group meetings in Delano. I had a surgery date of Feb. 17, but I'm not ready emotionally for surgery. I'm scared of dying on the table. I'm hoping that more communication with others who have gone thru the surgery, or are considering it, or waiting for their surgery date, will help me come to terms with the fear and also other emotions connected with this decision. > > I jokingly tell people, " Dead would really be inconvenient. " Dr. Z said that an incapacitating stroke would really be inconvenient. (At my current weight, that could become my reality). For now my co- morbidities are low. I need to deal with the fear; but maybe even more important is this constant message going thru my head that I should be able to lose the weight on my own. Or that if I have surgery and lose the weight, I'll never know if I could have done it on my own without the surgery. But I would be much thinner and healthier and able to do the active things I want to do (like rollerskate), so does it really matter how I lose the wt.? Probably not. But me, myself, and I are still discussing, debating, and arguing about it. > > If any of you had similar feelings about ds, I would appreciate your comments and how you reconciled those mixed feelings. > > I look forward to being part of this group. > > BuffyS Hi Buffy, If you were at the Dec meeting you got to hear my story. I was the person who stood up front and held up pants and a shirt that 2 people could have fit in. As for dying. Well my friend Amys brother told her that either way she won. If she died , she would get to go to heaven and be with our Lord. If she lived, then she would get to feel what it is like to be thin. She was a winner and lost over half her body weight. O took that same approach. I was more afraid that something would go wrong and I wouldnt get the surgery! I am with Dr Z on the stroke thingy - that would be inconvenient! As for loosing on your own. Sigh...well we have all tried that - me for my entire life since I was 7. It just didnt work. This surgery has been a God send to me. I finally get to feel what it feels like to be a normal size. You will need to give the Drs a history of your attemps at diets....take a good long look at that...can you really lose on your own? Of course you can...can you keep it off? You wouldnt be here if you could. It is not you that failed. It is your body that is storing and not burning those calories. If you are like me, that wont change. The only chance I had is with the DS. I than God every day for this chance. It has saved my life and my sanity. (although some will argue that...lol) Keep mulling this over in your heart and mind. It is not something to be taken lightly. It will change your life and the way you live forever. For me it was for the better...and a wonderful gift from God. HTH Sharon in Onyx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 On Sat, 24 Jan 2004 14:20:33 -0800 (PST), MM wrote: > >If any of you had similar feelings about ds, I would appreciate your comments and how you reconciled those mixed feelings. > Buffy, Here's a cut/paste from a response I posted a few days ago. I think this pretty well sums up my feelings on the issue and how I handled it. BTW.. is our exchange student daughter from Germany. She, , Steve (our son) and Eadie (Steve's fiance) were what helped me get through the initial nervousness on surgery day. I knew I was doing this for me, but I was also doing this so I could be with them longer... " Nervous is an understatement. I had promise me that if anything went wrong, she'd give the option of staying with Sue or asking for a different host family. I even had an email written and ready to be sent to in case something did happen. However, I still went ahead because I knew that there was a better chance I would survive the surgery than I would survive all the problems with the excess weight. And, yes, I'd do it again. My only regret is that I didn't find Dr. K. a couple years sooner. " Hope that helps, Jerry Quote Link to comment Share on other sites More sharing options...
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