Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Hi Marie: You came to the right place. Welcome to our support group. I hope you have good luck with your rheumtologist (RD) and that he can find some medication that will work for you to relieve your pain. It may take awhile but it will happen. Rest alot and take care until then. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Welcome, Marie! You've come to the right place to complain! We are a truly compassionate, informed group with a collectively great sense of humor. Sorry about your RA diagnosis. Please try not to worry about your upcoming visit with the rheumatologist. If this doctor is a good one, he/she will calm many of your fears and treat you with medication to relieve your pain and slow the progression of your disease. Hope you like it here. ----- Original Message ----- From: <Gilkajon@...> < egroups> Sent: Friday, September 22, 2000 10:07 PM Subject: [ ] New to this > Hi all, my name is Marie I am 33 years old and I just been diagnosed > with RA. My doctor gave me clebrex 200mg but now she said that I > have to see a rheumatology specialist because my RF is high. So I > will be going to see the Rheumatologist this week and I am kinda > scared of what he going to say. I know that it will not be good > because I get flare ups quite often almost everyday and i know that > that is not a good sign. I'm in so much pain that I get tired of > telling my family how much pain I have so I guess thats why i joined > this group so i can complain to you guys :0) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Welcome Marie, Sorry about your dx, but you've come to the right place for support and answers. At the bottom of every post are two web sites that have all kinds of great information. Also, if you have any questions just ask, someone here is sure to have an answer. It's only natural to be scared. Your life (and body) is changing before your eyes and there is nothing you can do about it. My best advice is read and learn as much as you can about your disease and treatments out there for it. Knowledge is power. Tery - FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Complain away. I know how you feel and what you mean by your family getting tired of hearing about the pain. I rarely say anything anymore either. I just take my pain pills and hope for the best. Jenna FREE SPIRIT - Starlight Writers Publications THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award; WordWeaving Award of Excellance THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee Homepage: www.geocities.com/jennakayfrancis ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Marie: I forgot if I already welcomed you or not but if not welcome, and if I did, welcome again. and a are our resident wizards. If you need some questions to be answered, chances are they are the ones to find the answers for you. I enjoy this group alot and I am sure you will as well. My sense of humor is a little off the wall sometimes so please excuse me. Sometimes I am the only one who understands what I am talking about cuz nobody replies. They are so forgiving. Anyway, hope you like it here too. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Now Jenna: I am sure your family cares alot. They just don't know what to do. That seems to be my experience at least. Everybody feels bad when I am going through a rough time but they don't know how to fix it which is what they want to do. You can always complain to us and get feedback here. We will sympathize, or tell you a joke or something cuz we understand. Take care, Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Welcome Marie, Complain as much as you want. We understand what you are going through. The best way to deal with this disease is to learn everything you can about it. There are many different meds. and all of them react differently for each of us. Sometimes it takes trying many different meds before finding out what works for you. I hope you find your magic bullet quickly and get relief. a ----- Original Message ----- From: <Gilkajon@...> < egroups> Sent: Friday, September 22, 2000 11:07 PM Subject: [ ] New to this > > Hi all, my name is Marie I am 33 years old and I just been diagnosed > with RA. My doctor gave me clebrex 200mg but now she said that I > have to see a rheumatology specialist because my RF is high. So I > will be going to see the Rheumatologist this week and I am kinda > scared of what he going to say. I know that it will not be good > because I get flare ups quite often almost everyday and i know that > that is not a good sign. I'm in so much pain that I get tired of > telling my family how much pain I have so I guess thats why i joined > this group so i can complain to you guys :0) Thanks! > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Change subscription options: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Welcome Marie, Complain away. We have been known to write a few long posts ourselves. We are very good listeners and offer our experiences for everyone to learn from each other. You will like the group. Regards, Sylvia > Hi all, my name is Marie I am 33 years old and I just been diagnosed > with RA. My doctor gave me clebrex 200mg but now she said that I > have to see a rheumatology specialist because my RF is high. So I > will be going to see the Rheumatologist this week and I am kinda > scared of what he going to say. I know that it will not be good > because I get flare ups quite often almost everyday and i know that > that is not a good sign. I'm in so much pain that I get tired of > telling my family how much pain I have so I guess thats why i joined > this group so i can complain to you guys :0) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Hi Marie, welcome to the group. I'm glad to meet you. I'm new to the group, but not new to RA. There are so many new treatments that hopefully your rheumatologist will be able to find one that will relieve the pain and slow the disease or better yet bring on a remission. Good Luck! T. > Hi all, my name is Marie I am 33 years old and I just been diagnosed > with RA. My doctor gave me clebrex 200mg but now she said that I > have to see a rheumatology specialist because my RF is high. So I > will be going to see the Rheumatologist this week and I am kinda > scared of what he going to say. I know that it will not be good > because I get flare ups quite often almost everyday and i know that > that is not a good sign. I'm in so much pain that I get tired of > telling my family how much pain I have so I guess thats why i joined > this group so i can complain to you guys :0) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 new to this >Dr. group, >I just heard Dr. Goldberg for the first time yesterday at the >conference in Iowa on medical tx for autism. I want to pursue this >avenue right away, and am wondering if anyone in the Minneapolis area >knows of a physician familiar with Goldberg's protocols or would be >open to the ideas? I will be making an appt. with Dr. Orchard, an >immunologist at the U of M, but don't know what his attitude will be. >Thanks so much! >Carla H. > > > > >Responsibility for the content of this message lies strictly with >the original author, and is not necessarily endorsed by or the >opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 Hi Carla, I was at the conference as well. I met someone from MPLS who gave me the name of a Dr. that is somewhat paralleling what Dr. G is doing. (As I was informed) The woman's name is AJ and the Dr.'s name is Dr Gianucci? I am not sure of the spelling because I was verbally informed. I would check into her and actually let me know what you find out. I thought the conference was great!! I really do like Dr. Goldberg though and if you can see him, I would!! Good Luck! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 Carla, Welcome to the list! My son is a patient of Dr. Goldberg's and we have been extremely impressed with the care he has received. He has only been on the protocol for 7 weeks and the autism specialist who saw him last week (and had not seen him since we started the protocol) was AMAZED. When you see someone every day I don't think the changes are as dramatic so it was encouraging to hear her. She said his color is wonderful, he has lost the " allergic shiners " and is a lot more focused. (we noticed the better color in his face the second week on nizoral). I wanted to encourage you to keep seeking help but also prepare you for the roadblocks (as many other parents here can also). When I first got on this list, I got on the phone to the Oregon Health Sciences neuroimmunologist to inquire about the theory and autism figuring he would know. I contacted him as a professional (I'm a nurse practitioner) about a " patient " (hey, I was desperate!) Anyway, he dismissed the whole area as " way out in left field " . I was stunned. How can these guys who are presumably well educated in the immune system miss this? I trusted my better instincts and eventually we decided to go the the expert and stop trying to find a substitute. I'm glad we did. The results speak for themself no matter what the " professionals " say. Good Luck!! This list is a great starting point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2001 Report Share Posted March 24, 2001 When you asked the specialist for his opinion on did he actually say that he had bothered to read any of the literature? I have had the same experience and finally started pinning people down and as yet have not found anyone who has actually done the reading! The best revenge is a good life. Take your child back in another year and then point out how many other children could have been helped if referred to a clinic...in another year we should have quite a few more than just California! Kathy -Northern New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 , Your son is entitled to Early Intervention Services through your state, if he qualifies. In NJ I think it is 33% delay in 1 area or 25% in more than 1. I think most states are about the same. You are certainly doing the right thing. He is at a good age to begin therapy. Perhap before the tubes he was really hearing things distorted. In order to ease your own frustration of not understanding him you may want to create a picture book for him so he can show you what he wants. You can also reinforce with the word. ANd please know you are not alone. So many of us still cannot understand our kids 100% of the time out of context. Hang in there. denise Mom to 4 with verbal apraxia > My son is two years old and recently had tubes in his ears. The > doctor told me after the surgery that he had a 30% hearing loss in > his left ear. To hear him talk is a little unnerving. Being his > mother you would think that you could understand what he is saying, > but most of the time I can't figure out what is comming out of his > mouth. He is currently undergoing test for speech therapy through > disiblity claim. Am I doing the right thing??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Thank You for that, this is the first time I do not feel alone! THank you again > > My son is two years old and recently had tubes in his ears. The > > doctor told me after the surgery that he had a 30% hearing loss in > > his left ear. To hear him talk is a little unnerving. Being his > > mother you would think that you could understand what he is saying, > > but most of the time I can't figure out what is comming out of his > > mouth. He is currently undergoing test for speech therapy through > > disiblity claim. Am I doing the right thing??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 You are lucky that he was diagnosed so early! The same age as my son who is now 7.The earlier that he is diagnosed the better chance that he will do well.I am, no expert either just a Mom but everything that I read or have read said that the earlier the easier to help them.your child will not get over apraxia but with early intervention he will be able to lead a normal and fulfilled life in the " regular world " .Good Luck.Hope this helps.Gretchen Missouri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 : I believe you are doing the right thing. One of my daughters had ear tubes when she was 2-1/2 years old and her hearing increased dramatically.....she heard as though she had " swimmers ear " ...and had reduced hearing. My point is that we practically understood nothing of what she said...so we went to speech therapy and enrolled her into our early intervention pre-school in our district. It definitely helped us! She did not have apraxia, but it was definitely beneficial to give her therapy as soon as possible. The earlier we help our kids, the better off they are in the long run. Good luck. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Amy, First welcome, then run don't walk to get the book the Late Talker cowritten by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Amy, After reading the book " The Late Talker " PLEASE start your child on the Pro-EFA by Nordic Naturals. You will find parent testimonials on this website and in your book. We have noticed a wonderful change in our son starting the very night we gave him his first dose of fish oil. All therapists noted the change also, and we did NOT tell them we were giving our son fish oil. I think these are your most important " first steps " to getting your child on the road to talking. BEST OF LUCK!!!!! Kathy (mom to , 22 months and suspected apraxia, who said Dada for the first time the night we started Pro-EFA!) > Amy, > > First welcome, then run don't walk to get the book the Late Talker cowritten > by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Sherri, Your son sounds alot like mine at that age . He was also IUGR and a preemie , also has GERD and was borderline Failure to thrive ... See any common ground? Anyway , my doctor has also said things like " PDD-NOS " but since the year after that DX , my son was properly DXed with Motor Planning problems, Sensory Intregration Disorder,Apraxia, & Dystharia. It all can " look " Like Autism or PDD-NOS . Basically my son doesn't have a clue at where is little body is in space, let alone his mouth ! So we do tons of OT , and Oral Motor etc..And of Course Pro-Efa and a good Multi-Vit. I still have lots to learn about my darling son .. But this List has helped me more than anything !Just ask questions and the awesome people on this list will try and do anything to help . Get your son started on Pro-Efa and keep working to find the best help in your area ! And most important .Keep your chin up .. I think that might be the hardest part ! Take Care , Marie > Hi, I just am grasping the idea of apraxia with my son. DS is 21months old, was 4 weeks premature with IUGR, and then was a GERD baby with failure to thrive. I have been concerned with his communication skills, but heard all the premature babies are slower, and his growth issues delayed him as well, so it was a wake up call when his ped recomended ECI programs. (Course she didn't know who in my county to contact & after two weeks still hasn't got his forms into them). After talking to the ECI intake, I started reading, and found the late talker book & I lost my concern DS had autism (suggested by ped), and began reading about apraxia. During his interview with ECI they immediately asked me if I had been thinking about apraxia & said they would have the speech therapist contact me to set up an interview & then schedule. So for a week now I have been nervous and trying to calm my fears. > I have lots of questions. Eci only recomended 45 minutes a week, from reading I do not think that is enough, but I can't pay for private after his medicaid will runs out ... & Texas lowered the financial limits for the texcare program so soon no insurance. Does apraxia qualify for medicaid waivers? > I am thinking ASL might be good for us to learn, since his frustration level is very high. > But basically I am so lost as what to do. I have so many questions all jumbled up so I can't even figure out where to begin. > > A little personal: DS is 21 months, says dah- for dog, diwty, beeth-beep and lots of vowel, m, & d sound babbling... however dog & beep are about the only things that relates to what he is doing. Ex: he can say a high pitched nasal no type sound, but when he really means no, he shakes his head.... When prompted it seems like the word is there, but he can't connect the dots or say the sound. Basically grunts and whines. When read to he will move his lips and try occasionally but nothing comes out. He can follow multi-step directions, seems to have 4 goals in life: escaping-good with locks, figuring out how to fly off various furniture, terrorize the dogs, and keep mommy home. Since birth he has had lots of screaming fits, the first year was at least 8 hours of crying a day... now we are down to about 2 plus bedtime battles, but the episodes are increasing- probably due to frustration. We have a very good support system, after I left my ex husband, I moved in with my parents & uncle & they are all trying to figure out what we need to do to help as a team. Right now he is not in daycare, and my family keeps him while I work. I am a paramedic so I work 24hr shifts, which I am sure increases his clinginess. Also that explains why I tend to get way behind on list-servs too. > Like I said I am finally out of denial that something is seriously wrong, angry that his MD didn't refer him to ECI when she diagnosed FTT- which is an automatic inclusion into the program. There is lots more to ask and learn but I just cant express all of those thoughts now- but I have covered the primaries with DS: speech and his tantrums..he has other " quirks " but hard to list at the moment. > > Thanks for listening, any advice is appreciated > BTW I am a bit south of the Houston Tx, co area > Sheri > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Hi Kathy, Welcome to the group. I'm sorry I can't answer any of your insurance questions. I would think though that a second band would just be a continuation of treatment. I'm sure someone here will be able to help you out. Does he have torticollis? Is that why you're looking into PT? Most babies with tort qualify for Early Intervention, it's a free service provided by most if not all states. Her pediatrician can let her know how to contact Early Intervention, they'll come to her house for her son's PT, if he qualifies. Keep us posted. \--- In Plagiocephaly , " kabrooksy " <Kmbrooksy@a...> wrote: > My cousin (almost a sister to me) has a child with torticollis and > plagiocephaly. He is 7 months old. He has one DOC band and now > needs another. The insurance has refused the second band but will > possibly OK a starband. The doctor wants a DOC band. He has been > without a helmet for 5 weeks since they cannot afford one. The child > is also deaf in one ear as well. > > I am just going through the websites and files now. She lives in the > Dallas region. She does not have a computer. She has been fighting > the insurance company. Does she continue with her fight and appeal? > He needs a helmet now. Or does she look for financial support > elsewhere? If so, where? Will he need a third helmet? Where does > she ask for physical therapy? How often does he have to go to p/t? > Can she do the p/t at home? > > I am sure this covered in many of your posts. I do appreciate it. > She is at her wits end. > > Thank you. > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hello Kathy Welcome to the group. Like has already told you, it would be really helpful if your cousin contacted Early Intervention. In most states you can self refer for torticollis. If her son qualifies they will come out to her house, and do the therapy for free. As far as insurance appeals go, maybe the ped can write a medical nec letter, and I would not stop fighting them. Sometimes it just takes a few appeals before they pay. Good luck, and let us know how it goes. Do try though to get started on working with the torticollis. Sandy Willow's mom --- In Plagiocephaly , " kabrooksy " <Kmbrooksy@a...> wrote: > My cousin (almost a sister to me) has a child with torticollis and > plagiocephaly. He is 7 months old. He has one DOC band and now > needs another. The insurance has refused the second band but will > possibly OK a starband. The doctor wants a DOC band. He has been > without a helmet for 5 weeks since they cannot afford one. The child > is also deaf in one ear as well. > > I am just going through the websites and files now. She lives in the > Dallas region. She does not have a computer. She has been fighting > the insurance company. Does she continue with her fight and appeal? > He needs a helmet now. Or does she look for financial support > elsewhere? If so, where? Will he need a third helmet? Where does > she ask for physical therapy? How often does he have to go to p/t? > Can she do the p/t at home? > > I am sure this covered in many of your posts. I do appreciate it. > She is at her wits end. > > Thank you. > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 I am in the Dallas area too...did she go to Cranial Technologies? We are scheduled to go there next week for the casting for my son. About the insurance...if she goes to CT, surely she has been talking with about the insurance issues? If not...have her ask for her. She seems pretty knowledgeable about the insurance matters. From what I have read it seems like they should cover it out of conituation of treatment since it was an approved plan of care in the beginning. But you know how ins. co. are about not wanting to pay for anything they don't have to. What is the reasoning behind their denial? I am an occupational therapist and although I don't work in the pediatric arena I do think that the therapists at CT should be able to give her a home program to either eliminate or reduce the need for hands on therapy. I have heard that early childhood intervention is a good way to go for therapy. Again....I work in geriatrics so this is all new to me. After my experience now with CT, though...once my kids are school age...I think I might try to switch over! Good Luck with everything! Camille Arlington...Mom to ...6 mos...to receive DOC band 9/15 > My cousin (almost a sister to me) has a child with torticollis and > plagiocephaly. He is 7 months old. He has one DOC band and now > needs another. The insurance has refused the second band but will > possibly OK a starband. The doctor wants a DOC band. He has been > without a helmet for 5 weeks since they cannot afford one. The child > is also deaf in one ear as well. > > I am just going through the websites and files now. She lives in the > Dallas region. She does not have a computer. She has been fighting > the insurance company. Does she continue with her fight and appeal? > He needs a helmet now. Or does she look for financial support > elsewhere? If so, where? Will he need a third helmet? Where does > she ask for physical therapy? How often does he have to go to p/t? > Can she do the p/t at home? > > I am sure this covered in many of your posts. I do appreciate it. > She is at her wits end. > > Thank you. > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Welcome to the group. I'm glad that you found it. No it isn't odd. It is good that they are going to do regular xrays of your child's head. It helps to rule out that the sutures have not closed prematurely. I would not worry; that is really rare. Luckily, we found out the results (from the xray tech) right after they took them (that they were negative). Your son may cry during this but it is over pretty quickly. Then when we met the neurologist (a few weeks later) he looked at them too and he also concluded that they were negative for premature closing. If you don't find out right after the xrays are taken, try calling your ped (a day or so later) or the referring physician and see if they can tell you over the phone. It is just nice to get that taken care of and ruled out before your son starts wearing the band. But again, don't worry because it is very very rare that the sutures prematurely closed. Just take it one day at a time. I know it's easy for me to say now. Just take each bit of information as it comes and discuss things with your husband. I learned so much from the people in this grp and all the info. available in the files, links, etc. It will be harder on you than your child. Trust me when I say that it will not bother him one bit to wear a helmet. Children adjust really well. THEE HARDEST part is when they make it YOUR decision on whether or not to do it. I figured that we had nothing to lose and everything to gain. Check into ins. if that is a factor for your decision. I was willing to pay for it in full if ins. denied bcz we wanted to ENSURE that it rounded some. Dr.'s say that it can take a few yrs to round out but at that point it would be too late to wear a helmet. It will be Ok and we will help you along the way.....take care. Sue Colin F. 1 this Fri. 9/24 STARband grad 9/15/04 Buffalo, NY --- In Plagiocephaly , " babykellan " <babykellan@y...> wrote: > My son seems to have what looks to us like Brachycephaly. Also, his > brow is very sloping. Our dr. said, yes, there is some flattening, > but it will round out on its own. This bothered me and I contacted a > dr. who deals with cranio issues and before even seeing my son, they > prescribed X-rays (skull series) and then they will evaluate him with > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > company will have someone there when the dr. sees my son in case they > decide to prescribe a helmet? I am so nervous. I don't want to do > anything to my son that isn't necessary and it is hard to put your > trust in people you don't know. What is the typical process for > diagnosis? Is is odd that they would prescribe x-rays without even > seeing my son first? > > Looking for advice, > > babykellan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Thanks for your welcome. I am in conflict because our pediatrician kind of blew my concerns off (not in a cruel way) and because It seems so freightening to " alter " my son in any way. I am sure you all understand that. It is hard to know who to trust or whether to go with my instincts etc. I will try to post some pictures. My son's brow has sloped since birth and I suspect is was from a tight uterine environment (he was so tight inside that he came out with toes crossed). The flattening in back seems uniform and I definitely see it in photos. Thanks again for your encouragement! Our appointment with the craniofacial specialist isn't until October 15th and by then our son will be 5 months. We would be dealing with Prescision Prostheics and Orthotics in St. Louis. Does anyone out there know anything about them???? Kellan's mom . > > My son seems to have what looks to us like Brachycephaly. Also, > his > > brow is very sloping. Our dr. said, yes, there is some flattening, > > but it will round out on its own. This bothered me and I contacted > a > > dr. who deals with cranio issues and before even seeing my son, > they > > prescribed X-rays (skull series) and then they will evaluate him > with > > the x-rays in hand in a few weeks. IS THIS TYPICAL? The orthotics > > company will have someone there when the dr. sees my son in case > they > > decide to prescribe a helmet? I am so nervous. I don't want to do > > anything to my son that isn't necessary and it is hard to put your > > trust in people you don't know. What is the typical process for > > diagnosis? Is is odd that they would prescribe x-rays without even > > seeing my son first? > > > > Looking for advice, > > > > babykellan Quote Link to comment Share on other sites More sharing options...
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