Guest guest Report post Posted September 5, 2008 Mandy, I was so depressed when I was in the hospital and first diagnosed that I couldn't even function. I'm glad you are feeling mentally better... I wish something would stop the aches for you. What is it with Social Security 'punishing' you for working? It doesn't make sense, does it. It's the same up here in Canada with Social Assistance (which I'm on)... it doesn't even come CLOSE to paying my bills, yet I'm being given less because I moved in with family. Chin up, good luck. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 5, 2008 What a small world. I used to work someone from Snohomish. We still stay in contact, working for the same company. Her name is Carol Wilkerson. Tom > > Remember that person with Still's disease that heard about us from my > husbands Ex. Well, she called us tonight. She is trying to get into the > group. I sent her the address at Yahoo. > Anyway, she is having trouble getting in and is thirsting for info. So > I do have her address, so without breaking confidentiality, you > experienced puter people, help. > We all talked for a good 45 minutes. Was great! Ah and there is another > person with Still's that grew up in our same area. We are going to try > to get together. We both are from Seattle and the Edmonds area. > (Growing up, as we live in the lovely podunk town of Snohomish now) > Love, Steph > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 5, 2008 What a small world. I used to work someone from Snohomish. We still stay in contact, working for the same company. Her name is Carol Wilkerson. Tom > > Remember that person with Still's disease that heard about us from my > husbands Ex. Well, she called us tonight. She is trying to get into the > group. I sent her the address at Yahoo. > Anyway, she is having trouble getting in and is thirsting for info. So > I do have her address, so without breaking confidentiality, you > experienced puter people, help. > We all talked for a good 45 minutes. Was great! Ah and there is another > person with Still's that grew up in our same area. We are going to try > to get together. We both are from Seattle and the Edmonds area. > (Growing up, as we live in the lovely podunk town of Snohomish now) > Love, Steph > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 5, 2008 What a small world. I used to work someone from Snohomish. We still stay in contact, working for the same company. Her name is Carol Wilkerson. Tom > > Remember that person with Still's disease that heard about us from my > husbands Ex. Well, she called us tonight. She is trying to get into the > group. I sent her the address at Yahoo. > Anyway, she is having trouble getting in and is thirsting for info. So > I do have her address, so without breaking confidentiality, you > experienced puter people, help. > We all talked for a good 45 minutes. Was great! Ah and there is another > person with Still's that grew up in our same area. We are going to try > to get together. We both are from Seattle and the Edmonds area. > (Growing up, as we live in the lovely podunk town of Snohomish now) > Love, Steph > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 6, 2008 Mandy Hey gal man do I know how not wanting to talk to any one feels same as well the family and friends deal been there done that and not a good feeling . any hoot I wish you the very very best I mean that . about SSI and working part time I would talk to a ssi Lawyer and find out that way as I know there is a dollar amount that you can not make over but under that I believe you can get ssi and if maybe cutting back hours a bit would help to get it at lest them may be by getting Medicare with it's parts would be cheaper then your insurance but then again com-pair your coverage to Medicare and see what is best and go that way as in the long run right now you may be better off they way you are working part time and the coverage you have but then again may be your might not be . I know that I would have been lost with out a ssi lawyer my self and I would have given up long time ago . as it was it was almost three years from when i field to when i finally was given the okay you can get ssi and talk about a log three years . it was worth it in my case . now others some get it in the first try some between the first and were i did . now days it seams ssi is becoming a bit more knowledgeable about stills and fibo then they were even 5 years ago. even if i was turned down a year ago I would go talk to a lawyer and take all the records i could and info I have and see what they say now never know and what the worse thing they can say no? if they do what have you lost nothing but if they say yes well there ya go a chance i feel worth tacking any hoot worth a try as who knows they may have raised the monthly income you can make and you may now be under that or your med cost my be able to cover some of the over part just never know but the lawyers know how it works and that is there job because if they do not win for you they do not get paid so they are not going to take it and tell you that you have a chance unless they feel you do because if they do there wasting there time and money not yours any hows hugs to ya and know you have family and friends here depressed sick or happy as hell and feeling fine as toady frog we all still care and are here for you and most of us have been there a time or to if not more hugs the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown ----- " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 6, 2008 Mandy Hey gal man do I know how not wanting to talk to any one feels same as well the family and friends deal been there done that and not a good feeling . any hoot I wish you the very very best I mean that . about SSI and working part time I would talk to a ssi Lawyer and find out that way as I know there is a dollar amount that you can not make over but under that I believe you can get ssi and if maybe cutting back hours a bit would help to get it at lest them may be by getting Medicare with it's parts would be cheaper then your insurance but then again com-pair your coverage to Medicare and see what is best and go that way as in the long run right now you may be better off they way you are working part time and the coverage you have but then again may be your might not be . I know that I would have been lost with out a ssi lawyer my self and I would have given up long time ago . as it was it was almost three years from when i field to when i finally was given the okay you can get ssi and talk about a log three years . it was worth it in my case . now others some get it in the first try some between the first and were i did . now days it seams ssi is becoming a bit more knowledgeable about stills and fibo then they were even 5 years ago. even if i was turned down a year ago I would go talk to a lawyer and take all the records i could and info I have and see what they say now never know and what the worse thing they can say no? if they do what have you lost nothing but if they say yes well there ya go a chance i feel worth tacking any hoot worth a try as who knows they may have raised the monthly income you can make and you may now be under that or your med cost my be able to cover some of the over part just never know but the lawyers know how it works and that is there job because if they do not win for you they do not get paid so they are not going to take it and tell you that you have a chance unless they feel you do because if they do there wasting there time and money not yours any hows hugs to ya and know you have family and friends here depressed sick or happy as hell and feeling fine as toady frog we all still care and are here for you and most of us have been there a time or to if not more hugs the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58 Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info If you find yourself in a hole, the first thing to do is stop diggin'. In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown ----- " Taking my gun away because I might shoot someone is like cutting my tongue out because I might yell `Fire!' in a crowded theater. " -- Venetoklis a government and its agents are under no general duty to provide public services, such as police protection, to any particular individual citizen... -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 2, 2008 I just got a E-mail back form 's mom. And she is just one smart woman trying to deal with this too. I wish I was her. Maybe my son could have had a better life. Cause all I can give him is love. i guess i was a little bitter thanks for being here moms char ************** Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2008 Hi Char, I found her! Here is the link to her caringbridge site if anyone wants to check her out. http://www.caringbridge.org/cb/viewHome.do Pat Bombardier Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 6, 2008 We never used prednisone because our son's fevers were already only 2 weeks apart and it makes the fevers come sooner and sooner. I have read messages from other members who have tried prednisone and noticed it caused 'rages' in their children. We were referred to a rheumatologist who prescribed liquid naproxen for Tyler. He took it every day in 2 doses 12 hours apart. For him it dropped his fevers from 105-106 down to 102 and lessened his stomach discomfort (Motrin caused vomitting often). The rheumatologist said in some children it stops the fevers, but it did not work that way for Tyler. After about a year on the naproxen he started having more severe episodes again. He began having throat involvement with large painful glands. We opted for a T & A this last August 5th. So far he has not had a fever, and I am hoping it will be successful in the long run for him. I am sorry to hear about your son. It must be difficult dealing with school and his fevering. There is a study that was done on the success of T & A for children with - it is in the links if you would be considering this route. Pruden Tyler Pruden 2yr 9mo old fevering since 3 months - T & A 8/5/08 fever free so far Dylan Pruden 6 months old Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 6, 2008 Hi Lynn, I'm not from the Rochester area but am from Redwood Falls, MN (southwest part of the state). Who was your ID dr.? I took my daughter to see Dr. Robein at the U of MN. Payton doesn't have an official diagnosis yet but we are working on it. We haven't tried prednisone yet. Payton actually hasn't had an episode since we went to see the Dr. during the end of August (her episodes are 6-8 weeks apart). I have been debating on using prednisone with her next episode. Suzi Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 6, 2008 Lynn, Couple of thoughts on the Prednisone. 1) For us, the fevers came much closer together - from an average of 35 days down to 10-12 days. 2) We found we really needed to wait until the fever got to about 102-103 (her spikes were always in the 105-106+ range). If we dosed too soon, it did not stop the fever. 3) We started with a 2 mg/kg dose (please see another posting I sent on Prednisone dosage calculator). We found that a .6 mg/kg dose was all that was needed, but that was after a lot of trial and error 4) Dani had a very aggressive reaction to the Prednisone - it usually lasted 2-3 days afterwards. It seemed to get worse with each episode, until we reduced the dosage to .6 mg/kg (for a 32-35 pound child - about 3 mls, vs. our original dose of 2 Teaspoons (i.e., 10 mls).) We tried Cimetidine with no luck. We got to the point that we were unwilling to put so much medicine in such a little body if a T & A would help. She needed a new ear tube anyway, so we just did the surgeries at the same time. She has been a very healthy and very happy little girl ever since then. Tonight, I actually ran across my spreadsheet of episodes that I took to her last Immunologist appointment and chuckled - we just don't even worry about it any longer. Please refer to the study for T & A and look up Licameli online. There is more and more research, and so many parents on this board have had success. There are a few cases where it hasn't worked, or there have been a few episodes and/or symptoms without the fever. But for us - we've had 10.5 months fever free! Welcome. Ginger - Atlanta, GA Daughter - le, 3 years old (fevering since 7 months, diagnosed at 15 months, T & A on 12/11/07, Fever-free since 11/16/07) Son - Jay, 17 months old ----------------------------------------- ==================================================== This message contains PRIVILEGED and CONFIDENTIAL information that is intended only for use by the named recipient. If you are not the named recipient, any disclosure, dissemination, or action based on the contents of this message is prohibited. In such case please notify us and destroy and delete all copies of this transmission. Thank you. ==================================================== Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 7, 2008 Lynn, I am from the Minneapolis area. My son had his tonsils taken out by Dr. Lander at Minneapolis Children's Hospital. He works for Pediatric ENT Associates located next to Children's Hospital in Minneapolis. He has treated many patients. The office number is 612) 874-1292. My son had his T & A in July and has been fever free since...Only time will tell. For now... we are cherishing every healthy day since the T & A. Dr. Lander is very knowledgeable about . I would reccomend setting up a consultation with him. Amy- Mom to -Age3-T & A in July 08-Doing great Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 7, 2008 the link for that caringbridge site doesn't work Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 8, 2008 Try this one...http://www.caringbridge.org/visit/sarahnicole From: and <bissons@...> Subject: Re: hi Date: Tuesday, October 7, 2008, 9:39 AM the link for that caringbridge site doesn't work Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 Hi Jade, I'm Tom...38 with type 3. Welcome! -------------- Original message ---------------------- From: Jade Theriault <radiofinger@...> > > > > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I > have no idea what I'm doing lol. So...HI!!!! > > > > > > > > > > Jade > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 Hi Jade! I'm Amy, 29, type I/II, and mama of two kiddos age 5 and almost 3. I'm a latte addict, love music, and being outside. amy On Oct 30, 2008, at 7:52 PM, Jade Theriault wrote: > > > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me > here so I have no idea what I'm doing lol. So...HI!!!! > > Jade > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 dang! that was a fast response! i thought itd take days! Jade Re: hi Hi Jade! I'm Amy, 29, type I/II, and mama of two kiddos age 5 and almost 3. I'm a latte addict, love music, and being outside. amy On Oct 30, 2008, at 7:52 PM, Jade Theriault wrote: > > > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me > here so I have no idea what I'm doing lol. So...HI!!!! > > Jade > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 thank you! Jade Re: hi Hi Jade, I'm Tom...38 with type 3. Welcome! -------------- Original message ---------------------- From: Jade Theriault <radiofinger@...> > > > > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I > have no idea what I'm doing lol. So...HI!!!! > > > > > > > > > > Jade > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 Hi Jade! I'm 29, married, mommy to a beautiful baby girl, and a Senior Analyst for Hewlett Packard. Welcome! Milinovich, SMA Type I Wife to , Mommy to - 18 Months Old! http://www.myspace.com/kindrana http://s174.photobucket.com/albums/w107/boramir/?start=0 ________________________________ From: Jade Theriault <radiofinger@...> Sent: Thursday, October 30, 2008 7:52:22 PM Subject: hi Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I have no idea what I'm doing lol. So...HI!!!! Jade Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 nice to meet you! Jade hi Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I have no idea what I'm doing lol. So...HI!!!! Jade Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 hey jade, your aunt is soooooooooo bossy ;-) i am 45 and have sma 2, and live with one poodle, two hens, and two men in england linda 2008/10/31 Jade Theriault <radiofinger@...> > > nice to meet you! > > Jade > > > hi > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I > have no idea what I'm doing lol. So...HI!!!! > > Jade > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 Hey, Jade! I'm glad you logged on. This is a great group of people from all over the place. As for calling me bossy...she's just sore cuz I kick her butt more often than not in Scrabble. ;-) I think you'll find this to be a good place to ask questions about growing into adulthood, building a career, raising a family...all with a disability. It's helped me a lot and I've made some good friends. Love you...now do your homework before I get in trouble with your dad for distracting you! ;-) > > hey jade, > your aunt is soooooooooo bossy ;-) > i am 45 and have sma 2, and live with one poodle, two hens, and two men in > england > linda > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 ACTUALLY, i think i win more often! 2008/10/31 Alana <alrt@...> > Hey, Jade! I'm glad you logged on. This is a great group of people > from all over the place. As for calling me bossy...she's just > sore cuz I kick her butt more often than not in Scrabble. ;-) I think > you'll find this to be a good place to ask questions about growing into > adulthood, building a career, raising a family...all with a > disability. It's helped me a lot and I've made some good friends. > > Love you...now do your homework before I get in trouble with your dad > for distracting you! ;-) > > > > > > > hey jade, > > your aunt is soooooooooo bossy ;-) > > i am 45 and have sma 2, and live with one poodle, two hens, and two > men in > > england > > linda > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 Do you guys play scrabble online? I want to play! :-) On 10/30/08 8:46 PM, " Alana " <alrt@...> wrote: > Hey, Jade! I'm glad you logged on. This is a great group of people > from all over the place. As for calling me bossy...she's just > sore cuz I kick her butt more often than not in Scrabble. ;-) I think > you'll find this to be a good place to ask questions about growing into > adulthood, building a career, raising a family...all with a > disability. It's helped me a lot and I've made some good friends. > > Love you...now do your homework before I get in trouble with your dad > for distracting you! ;-) > > >> > >> > hey jade, >> > your aunt is soooooooooo bossy ;-) >> > i am 45 and have sma 2, and live with one poodle, two hens, and two > men in >> > england >> > linda >> > >> > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2008 ooo i luv poodles! Jade hi > > Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I > have no idea what I'm doing lol. So...HI!!!! > > Jade > > Quote Share this post Link to post Share on other sites
