Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Debbie, I am sorry that you are in so much pain. A company called Advocare has some products that could help with that pain and to possibly eliminate it over time. I would like for you to e-mail off list and I can tell you what they have that helps. they have several products that help strengthen the joints and lubricate them. They have others containing folic acid and other vitamins and minerals that your body might be lacking. There are others that replenish the skin and help it become more tone. I'd really like to help you if you'll let me. TTYL! -- Pam Independent Advocare Distributor > From: " deb1958au " <dcampbell@...> > Reply-Rheumatoid Arthritis > Date: Sun, 27 Jan 2002 04:27:17 -0000 > Rheumatoid Arthritis > Subject: New To This. > > Hello Everyone, > > My name is Debbie and I am from just near Sydney in Australia. > > I was diagnosed with a very rare form of Rheumatoid Arthritis (Entro > or Enthropathic). This started about 6 years ago but I was diagnosed > around 6 months later after numerous tests. After all these tests I > was told there was no specific medication for this so they just trial > and error with the normal med's for severe Rheumatoid. > There are only around 20 people in Australia with this and less than > 500 world wide. > I would love to know if anyone on this list has this form of > Rheumatoid or you know some one. > I don't know what to expect from this in the future and the doctors > can not tell me as there are not enough people in one country to do > studies. > I do not suffer any more or less than someone with bad rheumatoid but > I am finding that there is more to this every month with my own > experiences. > I went off my med's for a operation (total hysterectomy). The doctor > told me to stop them 2 day's before but to start them again the night > after the operation. I was in a lot of pain before surgery but > nothing after. I went back on my med's that night and I thought every > thing was back to normal. I came home 8 day's later and had the first > day at home and I was fine. I woke the next morning in agony and > could not move. I was like this for 4 week's with the local nurse > coming around twice a day to wash me and get my medications. > My family and friend were here to help me in every other way but the > pain was the worst to date I have ever experienced. When I started to > be able to sit and stand with support I had rails put in on the > stairs (out-side)and the shower and toilet. In total I was like this > for 3 months. It turned out it was a major flair up of the arthritis > for which no one was expecting. Not even the Specialist. > I am of interest to the doctors because it is so rare this form and > they don't get to see this. > This effects from my jaw down to my toe's > Great lot of help to me. > I have had a knee reconstruction 4 years ago but it is back to as bad > as it was before and the other knee is just as bad now. My hip's are > a major concern and my feet. I have huge lumps in my muscles in my > arm's and leg's and large dint's. They tell me it is all from this > form of Rheumatoid A. > I have other problems as well. Crohn's Disease, Glaucoma and Eschemic > Heart Disease. > > My medication's for the Arthritis are as follow. > > Methotrexate Injection's weekly ............25 mg > Dolobid 500mg .............2 tab's twice daily > Plaquenil 200mg ...........1 tab twice daily > Prednisone 5 mg ...........1 tab daily > Has gone as high as 180 mg daily > Folic Acid .............10 mg daily > > I was on Celebrex but they did absolutly nothing for me. > > My pain med's are. > > Panadine Forte....3 tab's every 4 hour's > Endone.......2 tab's as required (usually twice daily) > Tramal.......150 mg.....1 tab twice daily > Morphine tab's 60 mg......1 tab when required > > I am on a heap of other medications for my other problems and I am > sure I rattle when I walk. > I have been on these set med's for 18 months now and they seem to be > doing most of the job so far. I still get exhausted very easily and > there is very little I can do with my family but they are very > understanding and supportive. > Sorry to go on and on but I did not know how much you would what to > know straight off. > I hope some-one can advise me and I hope I can be of some help to > others. Just looking to talk this through with others in a similar > situation. > Thank you for taking the time to listen. > > Debbie. (Australia) > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Hi , welcome! Well, on another positive note, now that you have the dx, you know how to approach his needs, can get help re any school needs (hopefully) and maybe some services outside school! Picky eating - oh yeah, a lot of us can connect with that! single mom, 3 sons , 22, with OCD, dysgraphia, Aspergers > > Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the " baby talk " he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 God Bless You. My heart goes out to you. My son is 14 and just diagnosed. I have accepted his little mannerisms and have just (after 11 schools and 2 yrs of homeschooling) found a private chrisian school that has an autism director. Maybe, once he is in these surroundings he will mature and find his self esteem. As for your son, does he have a speech therapist? I needed one when i was his age because I couldnt say my Rs or Ss. I sounded like and talked like a baby. What i did is STOP talking all together untill the school dragged in a pschiatrist and had my look at those ink blotted butterfly pictures. They gave me a speech therapist then told my father to be nice to me. LOL Dont sweat that little stuff, just make sure your son is getting the best tools, care and enviroment to grow in to the man he is meant to be. Bring on that peanut butter! > > Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the " baby talk " he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 OMG...I also spent years as a child because I couldn't pronounce my Rs,Ss,Ws etc in speach therapy. I never until now put that together with my son. I remember now, how embarrassed I was to be pulled out of class to see the speech therapist and the picking on, I got. I guess, that is why I become so active in local politics and love to give speeches now. I had literally blocked those years out of my head. TY > > > > Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the " baby talk " he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 I didn't know there were any Christian schools with Autism directors. Just wondering, if you don't mind sharing this, what state do you live in? My dd loved her teachers in her Christian school, but the kids and the teachers knowledge about her Aspergers was lacking in every grade, but 1st grade in which her teacher had attended a workshop about it. She's in public school now that has an autism director, but I don't feel what she's learning is carrying over outside of the small group she attends for speech. We miss the Christianity throughout the school day so much, too. Take care! -Kari > > > > Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the " baby talk " he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 I had to have speech too, and still can't say some R words, can get R and W sound mixed up. But all 3 of my sons also needed speech therapy, figured it's hereditary maybe. > > > > God Bless You. My heart goes out to you. My son is 14 and just diagnosed. I have accepted his little mannerisms and have just (after 11 schools and 2 yrs of homeschooling) found a private chrisian school that has an autism director. Maybe, once he is in these surroundings he will mature and find his self esteem. As for Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 We have to take time for ourselves to grieve and feel sad and down so we can get stronger to move on and dig in to the hard work of learning to do what we can to help our kids. And it can be exhausting. I go through periods where I really make things simple on myself, paper plates, easier dinners, earier to bed, more sleep. I love sleep. take care of yourself, Pam > > Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the " baby talk " he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 It's all so very over whelming, some days I can't see past my tears. I so appreciate this forum and your willingness to share your experience strength and hope. Blessing to you all!! From: Pamela <susanonderko@...> Sent: Thu, April 7, 2011 9:18:08 PMSubject: ( ) Re: New to this. We have to take time for ourselves to grieve and feel sad and down so we can get stronger to move on and dig in to the hardwork of learning to do what we can to help our kids. And it can be exhausting. I go through periods where I reallymake things simple on myself, paper plates, easier dinners,earier to bed, more sleep. I love sleep. take care of yourself,Pam >> Excuse me, if I am repeating this post. My 9yo son was recently dx with Aspergers. I am happy to have an answer....but very depressed over the answer. He is my baby, I love him to death, but the "baby talk" he never grew out of, the not eating anything but a specific brand of peanut butter, his quick temper and lack of coordination led us to seek proffessional advice.> Quote Link to comment Share on other sites More sharing options...
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