Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi Kat, What an ordeal you've been through! It was good you could share your whole story...it is important to summarize it. And you shared it with the perfect group. Unfortunately your symptoms are not new to many of us. This group can be very, very helpful. Our various symptoms are so weird that I felt like I was going crazy before I was finally diagnosed. It is good you've decided to find a new MD and that you're getting into a RH MD right away. Hopefully, your RH MD will have a recommendation for an ophthalmologist, also. You're actually lucky that the ER fiqured out what you had...many of us have taken a long time (ten+ years is not unusual) to get diagnosed. Reiter's is a fairly rare condition. I find myself educating folks all the time about it. I've made copies from the links from this group to give to my MD's...the good ones are not threatened because learning is more important to them than their ego. Hang in there and stay in touch. You are on the right track. I'll keep you in my thoughts and prayers, Kat. Love, in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Hey Kat L, I'm gonna post this to everyone as well, but figured you'd like the info personally too. You need to see a rheumatologist. The pain and swelling isn't going to go away unless the actually arthritic damage in your joints is healed. The prednisone is a symptomatic treatment not a curative treatment. I tell you my story to see if it helps you at all: Three weeks ago I was at work all weekend, Thurs. - Sun. I work in theatre and when my theatre puts up a new show, we stay at the hotel the theatre is in all weekend before it opens, we call it tech weekend. Anyway, by Sunday night it had begun to burn fairly badly when I peed. I got home and told my wife. She gave me some uristat she had and told me to see the doctor in the morning. I got up, still painfully to pee and noticed that both my eyes looked like they were infected with pink eye. Took a trip to the doctor who gave me Levaquin and Vigamox, which I replaced with TobraDex at the behest of my Ophthalmologist father-in-law. Levaquin screwed up my stomach so I switched to Bactrim DS. Whether a intestinal infection or a reaction to antibiotics, I had diarrhea from Weds. - Mon. Now, Friday of the week, so five days after the pink eye and bladder infection, I woke up and my left foot was in searing agony. I hobbled back to the doctor that day to give a stool sample and he said I had an inflamed sheathing on a tendon in my foot. He gave me celebrex and told me to see him first thing on monday. Now this is where I lucked out. He said it was funny, because there was this really rare syndrome called Reiter's Syndrome in which an infection can cause Pink EYe, a UTI and then Arthritis. SO he ran an HLA-B27 blood test. I went home. Saturday morning, my right foot is in the pain my left one was. Sunday, I can't move my left elbow, By Monday morning, I couldn't stand because right knee is so swollen. I go to the doctor, my neighbor had to carry me to and from the car and my wife drove. He takes one look at me and gets me into see the first rheumatologist who'll see me, who happens to be a Doctor in Chicago named Dr. Katz who did his fellowship at s Hopkins in reactive arthritis and has the license plate number HLA B27. So, Dr. Katz put me on 60mg of prednisone and 10mg of Methatrexate. In two days I could walk again. By the following Monday, I was moving around fine with just stiffness by the end of the day. Since he has lowered the Predisone 10mg per week (I'm starting at 40mg today actually) and upped my Methatrexate to 15mg per week. Seems to be working well. By the way, I'm HLA B27 negative, which means even more rare than just having Reiter's. Fun, huh? Hope some of this helped. Email me with anything. Stay strong. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Hi Kat: Welcome to the group. I'm pretty new here too. Reiter's is a scary and otherwise troubling condition to have, especially when one hasn't yet been diagnosed. I never had the eye problems, just the arthritis and weird skin rash on my palms for about 3 months. Since that initial attack 19 years ago, I still get sporadic attacks of pain in one side or the other of my sacroiliac joints that last a day or two. I know I am one of the lucky ones who are not chronically plagued by the terrible symptoms of RA. I hope you feel better very soon. All of you in this group are in my thoughts and prayers. Take care. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 I did manage to get an appointment - I will be seeing a rheumatologist tomorrow afternoon. How lucky you were to find a doctor that actually studied Reactive > Arthritis! I started calling around to the Rheumatologists today. Here's > how that went... > > Me: " Do you all treat Reactive Arthritis? " > Receptionist: " Do we treat what? " > Me: " Reactive Arthritis. " > Receptionist: " What do you mean - Reactive Arthritis? " > Me: " Never Mind. Thank you. " Click. > > I haven't been able to get through to the other clinic - either they are > too busy or there's something wrong with the phone lines. > > There's one where I actually talked to a nurse and she knew what ReA was! > But the receptionist is so busy I can't get through to make an appointment. > I'm afraid it may be months before I can get in, and I don't know what to do > about the pain until then. I will probably end up trying to call the ER > doctor (since she knew about ReA) and see if she can call me in a refill of > Pred. Right now it's just my right ankle that's red and swollen, but I know > the left will swell up soon. > > You know, this has never happened to anyone in my family at all, so I > wonder if I don't have that gene either. > > Thanks for the replies everybody! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Kathleen, If you find a Rheum. you want to see, ask your regular internist or family practice doctor to call and make the appointment for you. As I mentioned in an earlier e-mail, our Rheum got it on the first visit but a patient can only get to him if he is referred by another physician. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi Donna... That’s a riot... I just so happen to have 4 Maine Coons and 4 Domestic Cats... who all tend to be more “doglike” than your typical cats... But I can definitely see the connection with some cats... Do you know the author of the book? My BIL Charlie... likes the cats... kept calling to them as if they were going to come like a dog... and some of mine do come when called... He met his new 6 month old great-nephew and didn’t connect at all... Spoke to him like he was addressing an adult... The cats were all pretty relieved when he left yesterday... he bothered them when they were napping and eating... and his motor skills are so tense and jerky they really didn’t enjoy his “petting.” I’d love to see him get a cat or dog... something to care for and nurture... but then he’d have to deal with a vet... a petsitter when he traveled... and that would just send him over the edge I’m sure... plus I’m sure that his routine would be disrupted by a cat or dog and that would send him into a panic... For anyone who likes cats... I do own and moderate a group called Kittyworld... all breeds... lots of Maine Coon folks... I bred for a short time and showed as well under Colecoon Maine Coon Cats... We have a lady in our cat group whose 2 year old son is moderately autistic... already receiving early intervention... Please check out my FURtography at my pbase link in my signature. Oprah’s show today is on Living with Autism.... CC Carm, I'm not sure how to tell you to approach this. But I could not resist your quote about cats. There is a book called All Cats Have Aspergers. It may not help you with your problem, but I am sure that you will enjoy it. Donna [sPAM] ( ) New Here... My name is Carm. My husband and I are retired elementary school teachers. I have worked with student’s Dxed with AS. I’m the step-mother of a 27 year old step-son and the sister-in-law to a 68 year old brother-in-law both with Asperger’s Syndrome... I believe that our son has been Dxed... has not shared it with us... but did come out as a gay man at 16 to us... I think that this is more painful for him than that... This past week as things worked out both he and his uncle were staying with us... He is very subtly affected in comparison to his uncle who SCREAMS- AS.... My brother-in-law has NEVER been Dxed. He is keenly aware that he is different- he describes himself as introverted-shy and agoraphobic... The question I have for the group is: How can we open up a meaningful dialogue about AS with each of them? Charlie- 68- has lived out of town from us the entire length of our relationship... 14 years... He visits and stays with us for a week/10 days at a time... just left yesterday... after a week’s visit... He was home for a 50th reunion... He has one friend from his HS years also living in the SW-USA... He and his wife are very gracious to him... His friend is an incredibly loyal person... His wife has always been in a quandary about why her PhD husband would continue to deal with such a strange individual... We met them for the first time as they returned for this reunion this week... He is very affected- in that his condition calls attention to itself... to the point where it leaves anyone encountering him wondering-what’s wrong with this guy... at this point in life it comes off as early senility... He is highly intelligent, a kind sweet man, single-hermit-type- it amazes me that he will travel across the country to visit his brother and family... Physically he has a very strange gait... hips thrown forward... looks off-balance- facial expressions are very odd, he has ticks- clearing his throat and then sounds like he is going spit something out... but doesn’t... He has OCD involving hoarding paper products...He has echolalia- repeats the last thing you said... Yeah, Yeah, and repeats... He uses the same expressions to show compliance- agrees with everything you say... YEAH... Well that is true... Self-stimulating rocking... Hand gestures resemble the needle on a long play record album... some times does wild hand flapping- circular motions... will be seated and suddenly stand up... etc... BUT... he was in the military... and held a government job until retirement- 7 years ago... His behavior has become even more pronounced since he has no real social models now that he is home alone all day... My step-son Jay on the other hand... has none of the physical manifestations that would call attention to him... but has an awful time with friendships... employment... he currently is working aboard a cruise ship in a position where he is more or less his own boss... which is working out very well... He struck up a friendship with a prominent gay couple in our area... who took him in for a period of time... One partner was a psychologist... and I’m SURE he diagnosed him and definitely COACHED him to respond to others in a more caring way... he seems to be much more empathetic than when he was a young man... He tries to use proper facial expressions... tone of voice... As a child he looked and sounded like Eeyore from Winnie the Pooh... Has been treated and continues to be treated for clinical depression... His friend in his communications with us during some rough spots used the term behavioral disability... Has never said AS to us... Anyway... Charlie is back home... Jay is coming to stay for one more week this weekend before returning to the cruise ship... I think the time has come to let Jay know that we know... and I really want to be able to congratulate him on the hard work to blend in with others... improve his relationships... etc... Charlie KNOWS he’s not like everyone else... Is there a definitive book, website, something that I can use to say... Look we know... We understand... This is what it is... There’s a reason for your difference... Please feel free to email me privately or on the list... Thanking you in advance for any suggestions or help... CC Carm Cole Cats never strike a pose that isn't photogenic. ~Lillian Braun~ Photography http://www.pbase.com/carmcole No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.0/929 - Release Date: 7/31/2007 5:26 PM No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.0/929 - Release Date: 7/31/2007 5:26 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.0/929 - Release Date: 7/31/2007 5:26 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2007 Report Share Posted August 3, 2007 I might be responding late to this,,,,,,but it sounds like you have it all covered!!! I don't think you'll do anything or say anything wrong. Just say what you want to say. You "speak" very elequently. Good luck and keep us posted. Enjoy your week. RobinCarm Cole <8GR8CATS@...> wrote: My name is Carm. My husband and I are retired elementary school teachers. I have worked with student’s Dxed with AS. I’m the step-mother of a 27 year old step-son and the sister-in-law to a 68 year old brother-in-law both with Asperger’s Syndrome... I believe that our son has been Dxed... has not shared it with us... but did come out as a gay man at 16 to us... I think that this is more painful for him than that... This past week as things worked out both he and his uncle were staying with us... He is very subtly affected in comparison to his uncle who SCREAMS- AS.... My brother-in-law has NEVER been Dxed. He is keenly aware that he is different- he describes himself as introverted-shy and agoraphobic... The question I have for the group is: How can we open up a meaningful dialogue about AS with each of them? Charlie- 68- has lived out of town from us the entire length of our relationship... 14 years... He visits and stays with us for a week/10 days at a time... just left yesterday... after a week’s visit... He was home for a 50th reunion... He has one friend from his HS years also living in the SW-USA... He and his wife are very gracious to him... His friend is an incredibly loyal person... His wife has always been in a quandary about why her PhD husband would continue to deal with such a strange individual... We met them for the first time as they returned for this reunion this week... He is very affected- in that his condition calls attention to itself... to the point where it leaves anyone encountering him wondering-what’s wrong with this guy... at this point in life it comes off as early senility... He is highly intelligent, a kind sweet man, single-hermit-type- it amazes me that he will travel across the country to visit his brother and family... Physically he has a very strange gait... hips thrown forward... looks off-balance- facial expressions are very odd, he has ticks- clearing his throat and then sounds like he is going spit something out... but doesn’t... He has OCD involving hoarding paper products...He has echolalia- repeats the last thing you said... Yeah, Yeah, and repeats... He uses the same expressions to show compliance- agrees with everything you say... YEAH... Well that is true... Self-stimulating rocking... Hand gestures resemble the needle on a long play record album... some times does wild hand flapping- circular motions... will be seated and suddenly stand up... etc... BUT... he was in the military... and held a government job until retirement- 7 years ago... His behavior has become even more pronounced since he has no real social models now that he is home alone all day... My step-son Jay on the other hand... has none of the physical manifestations that would call attention to him... but has an awful time with friendships... employment... he currently is working aboard a cruise ship in a position where he is more or less his own boss... which is working out very well... He struck up a friendship with a prominent gay couple in our area... who took him in for a period of time... One partner was a psychologist... and I’m SURE he diagnosed him and definitely COACHED him to respond to others in a more caring way... he seems to be much more empathetic than when he was a young man... He tries to use proper facial expressions... tone of voice... As a child he looked and sounded like Eeyore from Winnie the Pooh... Has been treated and continues to be treated for clinical depression... His friend in his communications with us during some rough spots used the term behavioral disability... Has never said AS to us... Anyway... Charlie is back home... Jay is coming to stay for one more week this weekend before returning to the cruise ship... I think the time has come to let Jay know that we know... and I really want to be able to congratulate him on the hard work to blend in with others... improve his relationships... etc... Charlie KNOWS he’s not like everyone else... Is there a definitive book, website, something that I can use to say... Look we know... We understand... This is what it is... There’s a reason for your difference... Please feel free to email me privately or on the list... Thanking you in advance for any suggestions or help... CC Carm Cole Cats never strike a pose that isn't photogenic. ~Lillian Braun~ Photography http://www.pbase.com/carmcole No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.11.0/929 - Release Date: 7/31/2007 5:26 PM Building a website is a piece of cake. Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi Phoebe, If your child began having symptoms after their " well baby shot " it could be the mercury poisoning (mercury is used as a preservative in solution) brought on the seizures. Mercury can be flushed out of their system by eating animal fats and coconut oil. To bring your child back to complete health the best diet is offered by Bee @ / She is also building a new site where the info will be easier to look up: http://www.healingnaturallybybee.com/ Nan New here... Posted by: " Phoebe Brummett " brummettp@... brummettp Date: Mon Dec 10, 2007 4:21 pm ((PST)) I am new to this sight and have a 16 month old who at 13 months was said to have epilepsy. My husband and I do NOT want to treat with the chemical based treatments that are normally used b/c of the baby's age. I was researching epi on the computer and saw where Candida might contribute to seizures. I decided to take Kylie off sugar and we went from 20 atonic seizures per day down to 3, if any, per day. Some days we still have some that seem worse than others, but I was wondering if anyone else has had any experience like this. Anything would be helpful!!!! Commitment is the willingness to be uncomfortable! It is the willingness to stay on track even if something is too hard or takes too long! -- Austin ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I would suggest you go to the reference files section of this site. Great information on studies and results. It seems there are very broad based experiences with on this site, so you will find that many people have specifics that might confuse you. In general however, the game plan that our infectious disease doctor laid out for us was as follows: 1. Keep a detailed diary of your child's temps, symptoms, etc. 2. He started our son (Nikitas, 4 years old), on Cimetidine (brand name is Tagamet). He takes two does daily of a 1/2 tsp. Studies suggest less than 30% of people on this find it works to eliminate the condition. We are to monitor our son while he's on this. If he gets two fever episdoes, then it will not work and we need to go down another route. 3. He also gave us prednisolone in the event he did fever. This is a corticosteroid. We give it to our son when he starts a fever and it wipes it out within a couple of hours. The only short term problem is that is causes episodes to come with more frequency - that is, the intervals between episodes become shorter, so you get freaked out! This usually subsides and the episodes go back to normal over time. 4. Many have suggested that removal of tonsils and adenoids has shown great promise. Studies, though limited, offer some shimmer of hope. There are others on this board however, that have not been as successful. Tough decision to have your child undergo surgery. 5. Many on this site also claim to have some success with Singulair - an allergy medication. We have not discussed this with our doctor as of yet as we continue to monitor our son's progress on Cimetidine. 6. Studies suggest that this affects boys more than girls and that the syndrome should resolve itself somewhere between 8-12 years of age. The good news is that the studies suggest that there are no known long term negative impacts from . Hang in there. This is a nightmare for sure and one that leaves more questions and answers. It makes the daily anxiety of life grow tremendously. This is a great site and the people here are wonderful. Everyone is searching for answers. Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I would suggest you go to the reference files section of this site. Great information on studies and results. It seems there are very broad based experiences with on this site, so you will find that many people have specifics that might confuse you. In general however, the game plan that our infectious disease doctor laid out for us was as follows: 1. Keep a detailed diary of your child's temps, symptoms, etc. 2. He started our son (Nikitas, 4 years old), on Cimetidine (brand name is Tagamet). He takes two does daily of a 1/2 tsp. Studies suggest less than 30% of people on this find it works to eliminate the condition. We are to monitor our son while he's on this. If he gets two fever episdoes, then it will not work and we need to go down another route. 3. He also gave us prednisolone in the event he did fever. This is a corticosteroid. We give it to our son when he starts a fever and it wipes it out within a couple of hours. The only short term problem is that is causes episodes to come with more frequency - that is, the intervals between episodes become shorter, so you get freaked out! This usually subsides and the episodes go back to normal over time. 4. Many have suggested that removal of tonsils and adenoids has shown great promise. Studies, though limited, offer some shimmer of hope. There are others on this board however, that have not been as successful. Tough decision to have your child undergo surgery. 5. Many on this site also claim to have some success with Singulair - an allergy medication. We have not discussed this with our doctor as of yet as we continue to monitor our son's progress on Cimetidine. 6. Studies suggest that this affects boys more than girls and that the syndrome should resolve itself somewhere between 8-12 years of age. The good news is that the studies suggest that there are no known long term negative impacts from . Hang in there. This is a nightmare for sure and one that leaves more questions and answers. It makes the daily anxiety of life grow tremendously. This is a great site and the people here are wonderful. Everyone is searching for answers. Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi There! I too have a son 20mos, he has been fevering since a few months before his 1st birthday. You will find that just about everyone here is doing something to try to manage the condition. If you peel though the archives, you will find answers to some of your questions, but often times the posts may lead you to more questions reading about everyone's collective experience. I think the questions you are asking are questions that all of us are seeking answers to. I don't think there are answers, which is what I find most frustrating. For me, my son fevers every 21-24 days, but he is fevering right now, and I only had a 5 day break this time between episodes!!! It's the first time with this short of a break and I'm going nuts without sleep--I'm not kidding, I feel like I'm sometimes losing my mind with exhaustion. I can't tell if he's actually " sick " this time or just having an episode. For me, the lines between sick and healthy are so blurred. I do plan things around fevers and I have learned to accept that sometimes I can't get the things done that I've planed and invisioned. I very often can't make it into work, much less login from home, we miss out on play dates and social time, holiday plans are sometimes ruined, the house doesn't get cleaned when he's sick and dinner does not get cooked. Any " career " that I wanted to have is on hold indefinitly because someone needs to be available at the household at a moments notice and my husband is the primary earner, so he can't do the heavy lifting. This lack of planning and always dealing w/ the unexpected and the resulting disappointment used to really get me down, but I am starting to relax a bit and tell myself " c'est la vie " . I used to fight the illness (this may sound strange, but some may relate), but now I just go with it and make do. When my son is fevering, I just say extra prayers thanking God that this is our only medical problem-it helps. As a fellow mom with a young one as well, I know how you feel watching such a little one suffer with such an aggressive fever and miserable symptoms-it is terrible not being able to communicate with them and ask them what they feel and ask them what more you can do to make it a little easier. These kids have such strength to endure this an bounce back to their happy selves after the 5 days of misery. All I can offer is a token of empathy as another parent who is experiencing what you are and all the ups and downs we deal with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi There! I too have a son 20mos, he has been fevering since a few months before his 1st birthday. You will find that just about everyone here is doing something to try to manage the condition. If you peel though the archives, you will find answers to some of your questions, but often times the posts may lead you to more questions reading about everyone's collective experience. I think the questions you are asking are questions that all of us are seeking answers to. I don't think there are answers, which is what I find most frustrating. For me, my son fevers every 21-24 days, but he is fevering right now, and I only had a 5 day break this time between episodes!!! It's the first time with this short of a break and I'm going nuts without sleep--I'm not kidding, I feel like I'm sometimes losing my mind with exhaustion. I can't tell if he's actually " sick " this time or just having an episode. For me, the lines between sick and healthy are so blurred. I do plan things around fevers and I have learned to accept that sometimes I can't get the things done that I've planed and invisioned. I very often can't make it into work, much less login from home, we miss out on play dates and social time, holiday plans are sometimes ruined, the house doesn't get cleaned when he's sick and dinner does not get cooked. Any " career " that I wanted to have is on hold indefinitly because someone needs to be available at the household at a moments notice and my husband is the primary earner, so he can't do the heavy lifting. This lack of planning and always dealing w/ the unexpected and the resulting disappointment used to really get me down, but I am starting to relax a bit and tell myself " c'est la vie " . I used to fight the illness (this may sound strange, but some may relate), but now I just go with it and make do. When my son is fevering, I just say extra prayers thanking God that this is our only medical problem-it helps. As a fellow mom with a young one as well, I know how you feel watching such a little one suffer with such an aggressive fever and miserable symptoms-it is terrible not being able to communicate with them and ask them what they feel and ask them what more you can do to make it a little easier. These kids have such strength to endure this an bounce back to their happy selves after the 5 days of misery. All I can offer is a token of empathy as another parent who is experiencing what you are and all the ups and downs we deal with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi, I just wanted to add my 2 cents worth. For the most part everything that you wrote was what our specialists have recommended too. So thank you for taking the time to give your steps of helping stop the pain. It makes me feel a bit more comfortable that we have been told accurate information. Thank you, Suzanne mother of 6.5 year old son Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi, I just wanted to add my 2 cents worth. For the most part everything that you wrote was what our specialists have recommended too. So thank you for taking the time to give your steps of helping stop the pain. It makes me feel a bit more comfortable that we have been told accurate information. Thank you, Suzanne mother of 6.5 year old son Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Hi ! It was so encouraging to hear from you. The fact that you haven't let get you down is amazing! It is awesome to see how such little children can bounce back after something like this every 3-4 weeks, like it never even happened. I am just in awe of my son for being so strong, as I'm sure you are with your son, too. It really is so hard to watch the days tick by, knowing that his fever is coming soon and there is nothing I can do to stop it. I guess I have resigned myself to the fact that I'm not going to fight this anymore, and actually deal with it too, and it has helped tremendously. I think my son was picking up on my anxiety and stress during each of his episodes, and that just compounded the problem. We also have a 3 month old son, and I'm just praying like mad that this doesn't happen with him, too. I don't know if I could handle 2 little boys fevering like my oldest does. The lack of sleep you mentioned is so hard! Our son tends to vomit when his fever spikes, so that is always fun. We usually have a middle-of-the-night shower every month because he vomits all over, the poor little guy. We've tried to head it off with Tylenol and Motrin, but it hasn't helped, so we just deal with it as it comes now. I think our sons got at nearly the same age. Do you know if that is the typical age of onset? I just have so many questions! It was very kind of you to offer some encouraging words. I really do appreciate it. I hope your son is feeling better, the poor baby! Those darn fevers. Anyway, I hope to hear more from you in the future. Thank you! Borisch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Hi ! It was so encouraging to hear from you. The fact that you haven't let get you down is amazing! It is awesome to see how such little children can bounce back after something like this every 3-4 weeks, like it never even happened. I am just in awe of my son for being so strong, as I'm sure you are with your son, too. It really is so hard to watch the days tick by, knowing that his fever is coming soon and there is nothing I can do to stop it. I guess I have resigned myself to the fact that I'm not going to fight this anymore, and actually deal with it too, and it has helped tremendously. I think my son was picking up on my anxiety and stress during each of his episodes, and that just compounded the problem. We also have a 3 month old son, and I'm just praying like mad that this doesn't happen with him, too. I don't know if I could handle 2 little boys fevering like my oldest does. The lack of sleep you mentioned is so hard! Our son tends to vomit when his fever spikes, so that is always fun. We usually have a middle-of-the-night shower every month because he vomits all over, the poor little guy. We've tried to head it off with Tylenol and Motrin, but it hasn't helped, so we just deal with it as it comes now. I think our sons got at nearly the same age. Do you know if that is the typical age of onset? I just have so many questions! It was very kind of you to offer some encouraging words. I really do appreciate it. I hope your son is feeling better, the poor baby! Those darn fevers. Anyway, I hope to hear more from you in the future. Thank you! Borisch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Reading your message sounds so familiar My sons has had fevers since about 9 months and I remember he was even sick at his 1st Birthday party He has missed out on so much as have I I am lucky to be able to work around his schedule but everything has to be on hold when he has a fever His last episode was pretty bad I even had to carry him to the bathroom he was so weak I have a 2 month old which only makes sleep a distance memory I am just starting to get to the point where I know I can't " fight " the fevers anymore and just try to plan around them but it is just awful to see him suffer I just wish he would grow out of this He is 4 and I can't imagine how much this will effect him when he starts school he has already missed so much preschool and I feel the older he gets the harder it is for him to deal with it Most of my friend's children get the occasionaly cold or ear infection and I can't imagine what that would be like I only hope the new baby will be OK but is something I stress about it is nice to have a place to vent I am so glad I found this group Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Reading your message sounds so familiar My sons has had fevers since about 9 months and I remember he was even sick at his 1st Birthday party He has missed out on so much as have I I am lucky to be able to work around his schedule but everything has to be on hold when he has a fever His last episode was pretty bad I even had to carry him to the bathroom he was so weak I have a 2 month old which only makes sleep a distance memory I am just starting to get to the point where I know I can't " fight " the fevers anymore and just try to plan around them but it is just awful to see him suffer I just wish he would grow out of this He is 4 and I can't imagine how much this will effect him when he starts school he has already missed so much preschool and I feel the older he gets the harder it is for him to deal with it Most of my friend's children get the occasionaly cold or ear infection and I can't imagine what that would be like I only hope the new baby will be OK but is something I stress about it is nice to have a place to vent I am so glad I found this group Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi , I love to hear of someone with Stills who is managing well...it gives someone like me who is newley diagnosed some hope and what could be better then that??? Mandi Florida In a message dated 2/28/2008 1:14:12 P.M. Eastern Standard Time, kwalters@... writes: Hi all! I'm Kirsten. I got sick when I was four, but thought maybe I just had intense allergies, because my mom's allergies are so bad. I missed a lot of Kindergarten, because they didn't like a kid with some strange rash coming into a classroom already plagued with childhood sickness. They told me that I had Leukemia and six weeks to live right before I turned six. The doctors demanded that I be put on chemo right away, but my mom - who had some medical training at the time - knew that I wasn't fully symptomatic of Leukemia and knew that I didn't have it. After about a year of researching, we found out on our own that I had Still's Disease, and went to the doctors with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in Eugene, Oregon. I don't know if he still practices, but he was always so great with me. My mom pulled me out of school after they made me run a few miles for some fundraiser that they knew I was not to participate in. I took naprosyn for a while, but my stomach couldn't handle too much of it. I was also on asthma medicine and fluoride for my still terrible teeth. I ended up taking just Aleve when I was about 8 or 9, and that's all I've taken since. Though I had insurance up until two years ago, my mother refused to take me due to the grudge she held against the doctors who misdiagnosed me... sadly, that also includes the dentist. I don't have poor health, but I am trying to get insurance back so that I can get proper treatment. I went back to school in 8th grade, took all advanced classes in high school, and started college as a sophomore. I moved from the rainy Northwest to the snowy Midwest for school, but funny enough my joints are better here, even in the -40 degree weather. I have a full ride at Carroll College and am majoring in Religious Studies with a minor in History. My family moved out here with me, and I don't really get along with my mother very well. She's suffering from separation anxiety I think. I am 19 (04-26-1988) so that might be why. She also tries to baby me a lot because of my JRA. I continue to fight her tooth and nail about it because I know more of what my body can handle. Despite that, I have a great support system in my little sister (who showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is a great guy as well, and I just talked to my biological father for the first time last month. I work two relatively physically demanding jobs and go to school full time. Somehow I still manage to be online a lot. I enjoy playing video games, because they are a great workout for my fingers. My biggest passion though is music - I taught myself piano, and started to write and compose songs a few years ago - another great finger workout. Thank you all for taking the time to read my note. I hope you are having a good day, hopefully devoid of unneeded and unwanted pain. -Kirsten (KirBir) **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi , I love to hear of someone with Stills who is managing well...it gives someone like me who is newley diagnosed some hope and what could be better then that??? Mandi Florida In a message dated 2/28/2008 1:14:12 P.M. Eastern Standard Time, kwalters@... writes: Hi all! I'm Kirsten. I got sick when I was four, but thought maybe I just had intense allergies, because my mom's allergies are so bad. I missed a lot of Kindergarten, because they didn't like a kid with some strange rash coming into a classroom already plagued with childhood sickness. They told me that I had Leukemia and six weeks to live right before I turned six. The doctors demanded that I be put on chemo right away, but my mom - who had some medical training at the time - knew that I wasn't fully symptomatic of Leukemia and knew that I didn't have it. After about a year of researching, we found out on our own that I had Still's Disease, and went to the doctors with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in Eugene, Oregon. I don't know if he still practices, but he was always so great with me. My mom pulled me out of school after they made me run a few miles for some fundraiser that they knew I was not to participate in. I took naprosyn for a while, but my stomach couldn't handle too much of it. I was also on asthma medicine and fluoride for my still terrible teeth. I ended up taking just Aleve when I was about 8 or 9, and that's all I've taken since. Though I had insurance up until two years ago, my mother refused to take me due to the grudge she held against the doctors who misdiagnosed me... sadly, that also includes the dentist. I don't have poor health, but I am trying to get insurance back so that I can get proper treatment. I went back to school in 8th grade, took all advanced classes in high school, and started college as a sophomore. I moved from the rainy Northwest to the snowy Midwest for school, but funny enough my joints are better here, even in the -40 degree weather. I have a full ride at Carroll College and am majoring in Religious Studies with a minor in History. My family moved out here with me, and I don't really get along with my mother very well. She's suffering from separation anxiety I think. I am 19 (04-26-1988) so that might be why. She also tries to baby me a lot because of my JRA. I continue to fight her tooth and nail about it because I know more of what my body can handle. Despite that, I have a great support system in my little sister (who showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is a great guy as well, and I just talked to my biological father for the first time last month. I work two relatively physically demanding jobs and go to school full time. Somehow I still manage to be online a lot. I enjoy playing video games, because they are a great workout for my fingers. My biggest passion though is music - I taught myself piano, and started to write and compose songs a few years ago - another great finger workout. Thank you all for taking the time to read my note. I hope you are having a good day, hopefully devoid of unneeded and unwanted pain. -Kirsten (KirBir) **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi KirstenJust wanted to reply and say hello as I am around your age, i'm 23, and i was diagnosed at 15. I too was tested for leukemia but luckily was not told I had it! Thats a terrible misdiagnosis. Also just wanted to say I empathise with the frustration you feel over your mother being over-protective. Mine is exactly the same, and while when i was younger, and especially going through University it enraged me, as I have got a little older I have become much more tolerant and even appreciative of it. You'll probably find that by the time you get through college on your own she will see how independent you can be and lay off a little. It's only because she loves you so much. Other than that, well done for achieving so much despite your stills - I too got through school and University and am now training to be a music teacher - I play too, piano and violin. Which drugs are you on now? Take care Kate (UK) > > Hi all! > > I'm Kirsten. > > I got sick when I was four, but thought maybe I just had intense > allergies, because my mom's allergies are so bad. I missed a lot of > Kindergarten, because they didn't like a kid with some strange rash coming > into a classroom already plagued with childhood sickness. They told me that > I had Leukemia and six weeks to live right before I turned six. The doctors > demanded that I be put on chemo right away, but my mom - who had some > medical training at the time - knew that I wasn't fully symptomatic of > Leukemia and knew that I didn't have it. After about a year of researching, > we found out on our own that I had Still's Disease, and went to the doctors > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in > Eugene, Oregon. I don't know if he still practices, but he was always so > great with me. My mom pulled me out of school after they made me run a few > miles for some fundraiser that they knew I was not to participate in. > > I took naprosyn for a while, but my stomach couldn't handle too much of > it. I was also on asthma medicine and fluoride for my still terrible teeth. > I ended up taking just Aleve when I was about 8 or 9, and that's all I've > taken since. Though I had insurance up until two years ago, my mother > refused to take me due to the grudge she held against the doctors who > misdiagnosed me... sadly, that also includes the dentist. I don't have poor > health, but I am trying to get insurance back so that I can get proper > treatment. > > I went back to school in 8th grade, took all advanced classes in high > school, and started college as a sophomore. I moved from the rainy Northwest > to the snowy Midwest for school, but funny enough my joints are better here, > even in the -40 degree weather. I have a full ride at Carroll College and am > majoring in Religious Studies with a minor in History. My family moved out > here with me, and I don't really get along with my mother very well. She's > suffering from separation anxiety I think. I am 19 (04-26-1988) so that > might be why. She also tries to baby me a lot because of my JRA. I continue > to fight her tooth and nail about it because I know more of what my body can > handle. > > Despite that, I have a great support system in my little sister (who > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is > a great guy as well, and I just talked to my biological father for the first > time last month. > > I work two relatively physically demanding jobs and go to school full > time. Somehow I still manage to be online a lot. I enjoy playing video > games, because they are a great workout for my fingers. My biggest passion > though is music - I taught myself piano, and started to write and compose > songs a few years ago - another great finger workout. > > Thank you all for taking the time to read my note. I hope you are having a > good day, hopefully devoid of unneeded and unwanted pain. > > -Kirsten (KirBir) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi KirstenJust wanted to reply and say hello as I am around your age, i'm 23, and i was diagnosed at 15. I too was tested for leukemia but luckily was not told I had it! Thats a terrible misdiagnosis. Also just wanted to say I empathise with the frustration you feel over your mother being over-protective. Mine is exactly the same, and while when i was younger, and especially going through University it enraged me, as I have got a little older I have become much more tolerant and even appreciative of it. You'll probably find that by the time you get through college on your own she will see how independent you can be and lay off a little. It's only because she loves you so much. Other than that, well done for achieving so much despite your stills - I too got through school and University and am now training to be a music teacher - I play too, piano and violin. Which drugs are you on now? Take care Kate (UK) > > Hi all! > > I'm Kirsten. > > I got sick when I was four, but thought maybe I just had intense > allergies, because my mom's allergies are so bad. I missed a lot of > Kindergarten, because they didn't like a kid with some strange rash coming > into a classroom already plagued with childhood sickness. They told me that > I had Leukemia and six weeks to live right before I turned six. The doctors > demanded that I be put on chemo right away, but my mom - who had some > medical training at the time - knew that I wasn't fully symptomatic of > Leukemia and knew that I didn't have it. After about a year of researching, > we found out on our own that I had Still's Disease, and went to the doctors > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in > Eugene, Oregon. I don't know if he still practices, but he was always so > great with me. My mom pulled me out of school after they made me run a few > miles for some fundraiser that they knew I was not to participate in. > > I took naprosyn for a while, but my stomach couldn't handle too much of > it. I was also on asthma medicine and fluoride for my still terrible teeth. > I ended up taking just Aleve when I was about 8 or 9, and that's all I've > taken since. Though I had insurance up until two years ago, my mother > refused to take me due to the grudge she held against the doctors who > misdiagnosed me... sadly, that also includes the dentist. I don't have poor > health, but I am trying to get insurance back so that I can get proper > treatment. > > I went back to school in 8th grade, took all advanced classes in high > school, and started college as a sophomore. I moved from the rainy Northwest > to the snowy Midwest for school, but funny enough my joints are better here, > even in the -40 degree weather. I have a full ride at Carroll College and am > majoring in Religious Studies with a minor in History. My family moved out > here with me, and I don't really get along with my mother very well. She's > suffering from separation anxiety I think. I am 19 (04-26-1988) so that > might be why. She also tries to baby me a lot because of my JRA. I continue > to fight her tooth and nail about it because I know more of what my body can > handle. > > Despite that, I have a great support system in my little sister (who > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is > a great guy as well, and I just talked to my biological father for the first > time last month. > > I work two relatively physically demanding jobs and go to school full > time. Somehow I still manage to be online a lot. I enjoy playing video > games, because they are a great workout for my fingers. My biggest passion > though is music - I taught myself piano, and started to write and compose > songs a few years ago - another great finger workout. > > Thank you all for taking the time to read my note. I hope you are having a > good day, hopefully devoid of unneeded and unwanted pain. > > -Kirsten (KirBir) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hey Kate! I only take Aleve now. I've gotten to the point where I can meditate and get out most of the pain, so I only take Aleve when I have a flare pretty much. I hope I like my mom again soon, lol. Kirsten ________________________________ From: Stillsdisease on behalf of Kate Sent: Thu 2/28/2008 12:35 PM To: Stillsdisease Subject: Re: New Here... Hi KirstenJust wanted to reply and say hello as I am around your age, i'm 23, and i was diagnosed at 15. I too was tested for leukemia but luckily was not told I had it! Thats a terrible misdiagnosis. Also just wanted to say I empathise with the frustration you feel over your mother being over-protective. Mine is exactly the same, and while when i was younger, and especially going through University it enraged me, as I have got a little older I have become much more tolerant and even appreciative of it. You'll probably find that by the time you get through college on your own she will see how independent you can be and lay off a little. It's only because she loves you so much. Other than that, well done for achieving so much despite your stills - I too got through school and University and am now training to be a music teacher - I play too, piano and violin. Which drugs are you on now? Take care Kate (UK) On 28/02/2008, Kirsten Walters <kwalters@... <mailto:kwalters%40cc.edu> > wrote: > > Hi all! > > I'm Kirsten. > > I got sick when I was four, but thought maybe I just had intense > allergies, because my mom's allergies are so bad. I missed a lot of > Kindergarten, because they didn't like a kid with some strange rash coming > into a classroom already plagued with childhood sickness. They told me that > I had Leukemia and six weeks to live right before I turned six. The doctors > demanded that I be put on chemo right away, but my mom - who had some > medical training at the time - knew that I wasn't fully symptomatic of > Leukemia and knew that I didn't have it. After about a year of researching, > we found out on our own that I had Still's Disease, and went to the doctors > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in > Eugene, Oregon. I don't know if he still practices, but he was always so > great with me. My mom pulled me out of school after they made me run a few > miles for some fundraiser that they knew I was not to participate in. > > I took naprosyn for a while, but my stomach couldn't handle too much of > it. I was also on asthma medicine and fluoride for my still terrible teeth. > I ended up taking just Aleve when I was about 8 or 9, and that's all I've > taken since. Though I had insurance up until two years ago, my mother > refused to take me due to the grudge she held against the doctors who > misdiagnosed me... sadly, that also includes the dentist. I don't have poor > health, but I am trying to get insurance back so that I can get proper > treatment. > > I went back to school in 8th grade, took all advanced classes in high > school, and started college as a sophomore. I moved from the rainy Northwest > to the snowy Midwest for school, but funny enough my joints are better here, > even in the -40 degree weather. I have a full ride at Carroll College and am > majoring in Religious Studies with a minor in History. My family moved out > here with me, and I don't really get along with my mother very well. She's > suffering from separation anxiety I think. I am 19 (04-26-1988) so that > might be why. She also tries to baby me a lot because of my JRA. I continue > to fight her tooth and nail about it because I know more of what my body can > handle. > > Despite that, I have a great support system in my little sister (who > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is > a great guy as well, and I just talked to my biological father for the first > time last month. > > I work two relatively physically demanding jobs and go to school full > time. Somehow I still manage to be online a lot. I enjoy playing video > games, because they are a great workout for my fingers. My biggest passion > though is music - I taught myself piano, and started to write and compose > songs a few years ago - another great finger workout. > > Thank you all for taking the time to read my note. I hope you are having a > good day, hopefully devoid of unneeded and unwanted pain. > > -Kirsten (KirBir) .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hey Kate! I only take Aleve now. I've gotten to the point where I can meditate and get out most of the pain, so I only take Aleve when I have a flare pretty much. I hope I like my mom again soon, lol. Kirsten ________________________________ From: Stillsdisease on behalf of Kate Sent: Thu 2/28/2008 12:35 PM To: Stillsdisease Subject: Re: New Here... Hi KirstenJust wanted to reply and say hello as I am around your age, i'm 23, and i was diagnosed at 15. I too was tested for leukemia but luckily was not told I had it! Thats a terrible misdiagnosis. Also just wanted to say I empathise with the frustration you feel over your mother being over-protective. Mine is exactly the same, and while when i was younger, and especially going through University it enraged me, as I have got a little older I have become much more tolerant and even appreciative of it. You'll probably find that by the time you get through college on your own she will see how independent you can be and lay off a little. It's only because she loves you so much. Other than that, well done for achieving so much despite your stills - I too got through school and University and am now training to be a music teacher - I play too, piano and violin. Which drugs are you on now? Take care Kate (UK) On 28/02/2008, Kirsten Walters <kwalters@... <mailto:kwalters%40cc.edu> > wrote: > > Hi all! > > I'm Kirsten. > > I got sick when I was four, but thought maybe I just had intense > allergies, because my mom's allergies are so bad. I missed a lot of > Kindergarten, because they didn't like a kid with some strange rash coming > into a classroom already plagued with childhood sickness. They told me that > I had Leukemia and six weeks to live right before I turned six. The doctors > demanded that I be put on chemo right away, but my mom - who had some > medical training at the time - knew that I wasn't fully symptomatic of > Leukemia and knew that I didn't have it. After about a year of researching, > we found out on our own that I had Still's Disease, and went to the doctors > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer in > Eugene, Oregon. I don't know if he still practices, but he was always so > great with me. My mom pulled me out of school after they made me run a few > miles for some fundraiser that they knew I was not to participate in. > > I took naprosyn for a while, but my stomach couldn't handle too much of > it. I was also on asthma medicine and fluoride for my still terrible teeth. > I ended up taking just Aleve when I was about 8 or 9, and that's all I've > taken since. Though I had insurance up until two years ago, my mother > refused to take me due to the grudge she held against the doctors who > misdiagnosed me... sadly, that also includes the dentist. I don't have poor > health, but I am trying to get insurance back so that I can get proper > treatment. > > I went back to school in 8th grade, took all advanced classes in high > school, and started college as a sophomore. I moved from the rainy Northwest > to the snowy Midwest for school, but funny enough my joints are better here, > even in the -40 degree weather. I have a full ride at Carroll College and am > majoring in Religious Studies with a minor in History. My family moved out > here with me, and I don't really get along with my mother very well. She's > suffering from separation anxiety I think. I am 19 (04-26-1988) so that > might be why. She also tries to baby me a lot because of my JRA. I continue > to fight her tooth and nail about it because I know more of what my body can > handle. > > Despite that, I have a great support system in my little sister (who > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad is > a great guy as well, and I just talked to my biological father for the first > time last month. > > I work two relatively physically demanding jobs and go to school full > time. Somehow I still manage to be online a lot. I enjoy playing video > games, because they are a great workout for my fingers. My biggest passion > though is music - I taught myself piano, and started to write and compose > songs a few years ago - another great finger workout. > > Thank you all for taking the time to read my note. I hope you are having a > good day, hopefully devoid of unneeded and unwanted pain. > > -Kirsten (KirBir) .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 That's fantastic, I try to use natural methods like that as much as possible, I go to Tai Chi which is helpful too. Sounds like you're doing ok though. I'm on steroids, (still!) a new drug Tocilizumab (which is helping a lot) and methotrexate - so keep it up!K. > > Hey Kate! > > I only take Aleve now. I've gotten to the point where I can meditate and > get out most of the pain, so I only take Aleve when I have a flare pretty > much. > > I hope I like my mom again soon, lol. > > Kirsten > > ________________________________ > > From: Stillsdisease <Stillsdisease%40yahoogroups.com> on > behalf of Kate > Sent: Thu 2/28/2008 12:35 PM > To: Stillsdisease <Stillsdisease%40yahoogroups.com> > Subject: Re: New Here... > > Hi KirstenJust wanted to reply and say hello as I am around your age, i'm > 23, and i was diagnosed at 15. I too was tested for leukemia but luckily > was not told I had it! Thats a terrible misdiagnosis. Also just wanted to > say I empathise with the frustration you feel over your mother being > over-protective. Mine is exactly the same, and while when i was younger, > and especially going through University it enraged me, as I have got a > little older I have become much more tolerant and even appreciative of it. > You'll probably find that by the time you get through college on your own > she will see how independent you can be and lay off a little. It's only > because she loves you so much. Other than that, well done for achieving so > much despite your stills - I too got through school and University and am > now training to be a music teacher - I play too, piano and violin. Which > drugs are you on now? Take care > Kate (UK) > > On 28/02/2008, Kirsten Walters <kwalters@... <kwalters%40cc.edu><mailto: > kwalters%40cc.edu> > wrote: > > > > Hi all! > > > > I'm Kirsten. > > > > I got sick when I was four, but thought maybe I just had intense > > allergies, because my mom's allergies are so bad. I missed a lot of > > Kindergarten, because they didn't like a kid with some strange rash > coming > > into a classroom already plagued with childhood sickness. They told me > that > > I had Leukemia and six weeks to live right before I turned six. The > doctors > > demanded that I be put on chemo right away, but my mom - who had some > > medical training at the time - knew that I wasn't fully symptomatic of > > Leukemia and knew that I didn't have it. After about a year of > researching, > > we found out on our own that I had Still's Disease, and went to the > doctors > > with our prognosis. I saw a great rheumatologist for a while, Dr. Meyer > in > > Eugene, Oregon. I don't know if he still practices, but he was always so > > great with me. My mom pulled me out of school after they made me run a > few > > miles for some fundraiser that they knew I was not to participate in. > > > > I took naprosyn for a while, but my stomach couldn't handle too much of > > it. I was also on asthma medicine and fluoride for my still terrible > teeth. > > I ended up taking just Aleve when I was about 8 or 9, and that's all > I've > > taken since. Though I had insurance up until two years ago, my mother > > refused to take me due to the grudge she held against the doctors who > > misdiagnosed me... sadly, that also includes the dentist. I don't have > poor > > health, but I am trying to get insurance back so that I can get proper > > treatment. > > > > I went back to school in 8th grade, took all advanced classes in high > > school, and started college as a sophomore. I moved from the rainy > Northwest > > to the snowy Midwest for school, but funny enough my joints are better > here, > > even in the -40 degree weather. I have a full ride at Carroll College > and am > > majoring in Religious Studies with a minor in History. My family moved > out > > here with me, and I don't really get along with my mother very well. > She's > > suffering from separation anxiety I think. I am 19 (04-26-1988) so that > > might be why. She also tries to baby me a lot because of my JRA. I > continue > > to fight her tooth and nail about it because I know more of what my body > can > > handle. > > > > Despite that, I have a great support system in my little sister (who > > showed symptoms of JRA at 2) and my boyfriend of six months. My step dad > is > > a great guy as well, and I just talked to my biological father for the > first > > time last month. > > > > I work two relatively physically demanding jobs and go to school full > > time. Somehow I still manage to be online a lot. I enjoy playing video > > games, because they are a great workout for my fingers. My biggest > passion > > though is music - I taught myself piano, and started to write and > compose > > songs a few years ago - another great finger workout. > > > > Thank you all for taking the time to read my note. I hope you are having > a > > good day, hopefully devoid of unneeded and unwanted pain. > > > > -Kirsten (KirBir) > > . > > > > Quote Link to comment Share on other sites More sharing options...
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