Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 DO ANYONE KNOWS ABOUT A SUMMER CAMP IN TEXAS FOR TEEN WITH JRA?,,, MY DAUGHTER SASHA IS 14 AND SHE WAS DIAGNOSED WITH SYSTEMIC JRA 6 MOS AGO,, SHE'S DEPRESSED AND IT'S HARD FOR HER TO UNDERSTAND WHY SHE HAS JRA. I WANTED FOR HER TO START COMUNICATION WITH TEENS WITH JRA ,,,,,,,,,,,,,,,,,,,,,,,,THANKS wrote: There are 20 messages in this issue. Topics in this digest: 1. I HATE this damn disease! From: " Grant & Jo " joking70@... 2. Re: I HATE this damn disease! From: " ajaomom@... " ajaomom@... 3. Re: I HATE this damn disease! From: " Ashlee Blair " ablair@... 4. Re: I HATE this damn disease! From: " snooksmama@... " snooksmama@... 5. Update on Uncle Rusty From: " snooksmama@... " snooksmama@... 6. Re: Update on Uncle Rusty From: " sonia1md " sonia1md@... 7. Re: I HATE this damn disease! From: " Alia.Pranke@... " Alia.Pranke@... 8. OT: prayer request From: " Tepper, Michele " MTepper@... 9. Re: OT: prayer request From: " Terri Berube " TerriBer@... 10. Re: News of Uncle Rusty and Tree From: " Tepper, Michele " MTepper@... 11. Re: I HATE this damn disease! From: " Tepper, Michele " MTepper@... 12. Re: possible JRA From: " Tepper, Michele " MTepper@... 13. Re: New to the board, have an OT/504 school question...AJ From: " Connie White " jasperkelseyrose@... 14. Re: I HATE this damn disease! From: " ajaoky@... " ajaoky@... 15. Re: I HATE this damn disease! From: " Jo & Grant " joking70@... 16. 's Sleep Test From: " Robbin40@... " Robbin40@... 17. Re: 's Sleep Test From: " sonia1md " sonia1md@... 18. Re: possible JRA From: " Beth Yohnk " yohnkmom@... 19. Re: 's Sleep Test From: " Robbin40@... " Robbin40@... 20. Re: I HATE this damn disease! From: " misty_o_c " misty_o_c@... ________________________________________________________________________ ________________________________________________________________________ Message 1 From: " Grant & Jo " joking70@... Date: Sun Apr 30, 2006 2:34pm(PDT) Subject: I HATE this damn disease! It's Bayly's 4th birthday today. He has been wanting and wanting and wanting Tigger slippers. We finally found him some, his little sister Violet gave them to him for his birthday. He can't wear them because there's not enough support for his little swollen disfigured left ankle, and he fell over. GOD I HATE THIS DAMN DISEASE!!!! Jo (crying my eyes out here) ________________________________________________________________________ ________________________________________________________________________ Message 2 From: " ajaomom@... " ajaomom@... Date: Sun Apr 30, 2006 2:39pm(PDT) Subject: Re: I HATE this damn disease! Jo................I am sitting here crying right along with you!!! This is an awful disease, and Tigger slippers should be able to always fit and be worn comfy......there are so many struggles for our kiddos.............give Bayly a great big birthday hug from across the sea.....luv ya hon, take care....i will keep on prayin!!!! Luv and hugs, Aj and Holly (12 yrs old, systemic jra since 9/94) _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 I hate this disease too!!! I have been a lurker for about a year. my now 5 yo has arthritis in just about every jount and they also thout he had perths disease also, He was diagnosed after the ortho thought he broke he foot and fingers and thought I was causing child abuse to him. My Ped. called to the arthritis diag. He is on the max dosage of injection of mx and still not working we are off to the rheumy this afternoon. We went to disneyworld during easter and he could not walk. the cast member would not let us use our handicap pass to see the haunted house ride (I guess he did not look handicap in his stroller) so I carried hinm on line for over an hour. Tomorrow my 7 yo goes for surgery on her ears to see if a tumor grew back the is robbing her of her hearing Thurs. I go to my nuerologist to see if I have ms or if I continue on with a spianl tap for more tests. Thanks for letting me vent carol --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Vent away Carol! You've earned the right. I am sorry to hear you are going through all of this. I hope the rheumy can give you another path that will help your son and I also hope your daughter's hearing is saved. Hugs to you and I'll keep you in my prayers, Michele ( 19, spondy) Re: Digest Number 3645 I hate this disease too!!! I have been a lurker for about a year. my now 5 yo has arthritis in just about every jount and they also thout he had perths disease also, He was diagnosed after the ortho thought he broke he foot and fingers and thought I was causing child abuse to him. My Ped. called to the arthritis diag. He is on the max dosage of injection of mx and still not working we are off to the rheumy this afternoon. We went to disneyworld during easter and he could not walk. the cast member would not let us use our handicap pass to see the haunted house ride (I guess he did not look handicap in his stroller) so I carried hinm on line for over an hour. Tomorrow my 7 yo goes for surgery on her ears to see if a tumor grew back the is robbing her of her hearing Thurs. I go to my nuerologist to see if I have ms or if I continue on with a spianl tap for more tests. Thanks for letting me vent carol --------------------------------- How low will we go? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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