Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 > We've started some diet changes for our 3 boys: 4 1/2, 3 1/2, and 10 > months and will be seeking mercury detox eventually. All information > will be greatly appreciated. Here is my general info page, with links to other sources http://www.danasview.net/chelate.htm > Are their any legal proceedings in the process concerning Immunizations > and Thimerosol. Yes. Scroll down this section, at the end I include law firms taking cases http://www.danasview.net/parent3.htm#vaccines Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 I use to spend all my summers in Battle Creek!! I took my daughter there for the first time last year and may take the entire family this year. First I would get the book Children with Starving Brains. Get the 2005 edition only. This book will explain the detox process etc. Also join the EOH group. If you don't have the book Evidence of Harm by Kirby please get it. Glad you found Generation Rescue!!!!!!! Yes there are legal proceedings going on - Waters and Kraus is the law firm. 's book tells you more. Welcome!! Kathy Hybl in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi Vera, I took Remicade and four days later experienced pancreatitis. Also had near death experience due to servere infections. It was discovered after remicade I had a non-cancerous stricture of the common bile duct. I don't believe the remicade was responsible for the stricture. However, I can tell you that it was probably the cause of the pancreatitis and most definitely the horrible infections. It was the infections that they told me were going to kill me. I did have surgery twice and that has helped. Although to this day I can not fight a simple cold. If I get a cold, virus, anything it will last for a long time and it will be hard to get over it. I had the flu a year and a half ago, it lasted over four weeks. I did call the people who makes remicade and they have advise me to never take it again. Of course it has never been a thought to that it again. Hope this helps, if need any more information just let me know. Lynn and Vera Penick wrote: > My name is Vera and I have joined your wonderful group. > > My husband has had RA since he was 27 and is now 71. His medications > stopped working so his Rheumatoligist suggested Remicade. After the first > infusion of Remicade he began having pain in his lower back then both legs > and the front of one thigh have become numb. He's been x-rayed and back > problems are ruled out. So the thinking is his problem is a side effect of > the Remicade. Any problems such as he's having are listed as possible side > effects in the litature. > > Have any of you experienced such side effects after you were given > Remicade?? Did it clear up over time?? > > Thank you, > Vera/Central Florida > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.323 / Virus Database: 267.7.5/18 - Release Date: 6/15/2005 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Welcome, Vera! Sorry to hear that your husband is having such troubles. I don't recall anyone having symptoms like this with Remicade, but there have been a few similar reports with Enbrel in the group. How many infusions of Remicade has he had? How long after the first infusion did he notice the symptoms? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] new member > My name is Vera and I have joined your wonderful group. > > > My husband has had RA since he was 27 and is now 71. His medications > stopped working so his Rheumatoligist suggested Remicade. After the first > infusion of Remicade he began having pain in his lower back then both legs > and the front of one thigh have become numb. He's been x-rayed and back > problems are ruled out. So the thinking is his problem is a side effect > of > the Remicade. Any problems such as he's having are listed as possible > side > effects in the litature. > > Have any of you experienced such side effects after you were given > Remicade?? Did it clear up over time?? > > Thank you, > Vera/Central Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Welcome to the group, Vera and ! You will find wonderful information, and meet lots of great people. I have never taken Remicade, but sure you will get some answers from other members. Hugs, Tawny > My name is Vera and I have joined your wonderful group. > > > My husband has had RA since he was 27 and is now 71. His medications > stopped working so his Rheumatoligist suggested Remicade. After the first > infusion of Remicade he began having pain in his lower back then both legs > and the front of one thigh have become numb. He's been x-rayed and back > problems are ruled out. So the thinking is his problem is a side effect of > the Remicade. Any problems such as he's having are listed as possible side > effects in the litature. > > Have any of you experienced such side effects after you were given > Remicade?? Did it clear up over time?? > > Thank you, > Vera/Central Florida > > > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.323 / Virus Database: 267.7.5/18 - Release Date: 6/15/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 In a message dated 6/20/05 1:01:14 AM GMT Daylight Time, viking_warlock@... writes: Hi all. I am new to this and been diagnosed with pa for last five years. I am taking diclofenac, mtx and sulphasalazine. I dont sleep well and find the fatigue very frustrating. my ps has flaired knees, elbows, scalp, ears and lower back. I hate taking medication. pa affecting areas, the list is too long. Hi viking, Welcome to the group. You will find plenty of people here who will be able to identify with what you are going through and will hopefully be able to help you in some way, either through info, answering any questions you may have or just being there to listen. I hope you find what you are looking for. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hello Shirley and welcome, You have come to a place where many people can show you a spirit of courage you won't believe. My hat is off to them and my heart goes out to them. I am one of the lucky ones. Got RA at 58 and so far have a mild case. Are there doctors who specialize in pain management in your area? Perhaps if so, one of them might be able to make you somewhat more comfortable. Kathy in Ct [ ] NEW MEMBER HELLO EVERYBODY AND KK, I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES.. I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT HAVE...ECT...ECT... ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK SNAPPED, INSTANT AND SEVER PAIN. TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY. I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME- OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!! MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360... SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS. FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE TWICE WITH LITTLE COMFORT. AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING, BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY GOOD ODDS. IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE. I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!! OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE BANKRUPTCY!!! I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi Shirley. Welcome to the group! It's a great bunch of VERY imformative and caring people here....so I'm sure you'll find the support you need. I can't even begin to understand the pain you're experiencing with you back. The only advice I can give you is to make sure you have good pain management/control. Reaching out to this group is a good start to making sure you're connecting with other people who live in chronic pain or understand what it's like to be dealing with pain on a daily basis. Don't isolate yourself, because it can lead to depression. Just one other thing I was going to mention: Shortly after losing my job because of RA, I went to see an employment counsellor. (Silly me, thought I could actually re-train for a job before I even had my disease/pain under control!) I was asked if I had mourned the loss of my old life yet. I started to cry right there in the office in front of the counsellor. Obviously, the answer was " no " . Take the time to mourn for the loss of your old lifestyle. Things do get better, I promise. You learn ways of coping with the pain and managing your life so that you can still do some of the things you used to. Hang in there... > HELLO EVERYBODY AND KK, > > I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM > SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES.. > > I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I > MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A > VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING > PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE > PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT > HAVE...ECT...ECT... > > ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A > LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I > BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK > SNAPPED, INSTANT AND SEVER PAIN. > > TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE > HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I > WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS > BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY. > > I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME- > OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN > ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE > PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND > SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!! > > MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED > FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE > AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR > SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME > HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360... > > SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS. > FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD > CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS > AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT > BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT > L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE > SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE > TWICE WITH LITTLE COMFORT. > > AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS > NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND > OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO > SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING, > BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND > OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY > GOOD ODDS. > > IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY > DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM > CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I > TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE. > > I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY > LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE > WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!! > OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH > MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE > BANKRUPTCY!!! > > I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Welcome Shirley, I am so sorry that your in so much pain. We all go through pain and frustration, and it's so hard to deal with. There's no easy way, just take each day, and do the best you can. It does help to have a good doctor, that understands your pain, and tries to work with you to make your life a little easier. I'm glad your here, this is a wonderful group, Tawny > HELLO EVERYBODY AND KK, > > I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM > SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES.. > > I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I > MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A > VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING > PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE > PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT > HAVE...ECT...ECT... > > ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A > LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I > BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK > SNAPPED, INSTANT AND SEVER PAIN. > > TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE > HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I > WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS > BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY. > > I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME- > OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN > ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE > PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND > SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!! > > MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED > FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE > AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR > SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME > HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360... > > SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS. > FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD > CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS > AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT > BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT > L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE > SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE > TWICE WITH LITTLE COMFORT. > > AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS > NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND > OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO > SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING, > BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND > OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY > GOOD ODDS. > > IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY > DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM > CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I > TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE. > > I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY > LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE > WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!! > OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH > MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE > BANKRUPTCY!!! > > I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Hello, I have so much empathy for you and to try and help you I would say this. I have severe RA and degenerative disc disease that has been making the discs in my neck rupture one by one. I have a bunch of other things wrong with me but we won't go into them...something else with the spine is that I have problems with my lower back too but they keep saying they will wait to deal with it when they get all my other problems taken care of...ha ha ha Anyway, what I wanted to say to you is get a third and fourth opinion till you find someone who is competent to help you. In tennis just recently, Dent had problems with his ankle - he went to 5 doctors before a doctor found out he had a bone chip in his ankle that was causing the problem...MRI's don't tell the whole picture - I had one that showed no problem - a little bulging but who can't handle a little bulging - the next showed the disc ruptured...go figure. I was told by my doc that he didn't want to do my last surgery that the odds weren't in my favor...I told him I would take the odds rather then do nothing - at least I had a chance to get better and my quality of life did improve after the surgery - I could move my hand above my head for the first time in over a year. Doctors don't know everything and you have to push sometimes to get them to do anything - if there is a chance that they can do something they should...plus - do all the research you can yourself so when you walk into the doctors office you are pretty knowledgeable about the treatments and procedures that might help you. One last thing, Terry told me about a patch that the doctors prescribed for her called Lupiderm...it is a lidocaine patch and I asked my doc for a prescription for it. The first day I got them my lower back was in excruciating pain. I could hardly stand up and figured it would be another 3 to 4 days that I would be down again - I put on the patch and within 1/2 mile driving I started feeling better. The patch numbs the nerves in the area enough to dull the pain but it doesn't take any sensations away. You might ask your doctor for these and see if they give you any relief. I wish you the best of luck - but please don't give up - keep searching for answers and keep pressing for them...ask for more opinions and you will eventually get to the doctor who is supposed to help you. God bless, Althea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Dear Shirley, Greetings to you! My name is . I have been dealing with chronic pain since 1989, sometimes excrutiating pain due to lupus, arthritis, osteoarthritis, fibromyalgia,connective tissue disease, and herniated discs in the lumbar region ( " not bad enough for surgery " ) and migraines. I'm only giving you this list to show you that while I may not " know " exactly what you feel, I do understand " pain. " I have seen a Pain Specialist since 1999 - he literally saved my life. I felt like I had some dignity again, instead of living like a caged animal to this pain, I was a valuable human who deserved to be out of pain. (I don't know how much sense I'm making, I've been up all night (long story) and I can tell I am sort of babbling! Lol! I wanted to ask you to read my post about RA Meds because at the bottom is some info re opiate pain meds (I'm sort of a resident expert in the area) that I think you could benefit from. Shirley, You absolutely deserve to have your life back- to the extent possible, and that means first and formost that your pain needs to be under control! You deserve this! Also you might want to refer to my post re " To the New person to the group, and those new to RA " (or something to that effect!) because there are some coping strategies and my " two-sense " worth re " the right MD " and how to interview to find him or her! Sorry to keep referring you- it's just that at one time (or two!) I sat down and really took my time to put my thoughts down, and right now I feel like I would have a hard time thinking thru a paper bag! Anyway, you really have my sympathy, and I hope this helps in some way P.S. I have never heard of " your husband making too much for you to qualify for ssdi! " Are you sure about this? It's supposed to be based on YOUR income as an individual (that is once you are awarded at all, then the AMOUNT you receive, is based on your life-time income). Love, > HELLO EVERYBODY AND KK, > > I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM > SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES.. > > I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I > MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A > VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING > PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE > PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT > HAVE...ECT...ECT... > > ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A > LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I > BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK > SNAPPED, INSTANT AND SEVER PAIN. > > TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE > HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I > WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS > BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY. > > I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME- > OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN > ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE > PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND > SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!! > > MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED > FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE > AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR > SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME > HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360... > > SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS. > FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD > CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS > AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT > BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT > L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE > SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE > TWICE WITH LITTLE COMFORT. > > AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS > NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND > OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO > SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING, > BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND > OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY > GOOD ODDS. > > IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY > DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM > CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I > TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE. > > I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY > LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE > WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!! > OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH > MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE > BANKRUPTCY!!! > > I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 Welcome, Loretta! Do you have RA? I've had migraines since childhood, but they run in my family (and those related to me who have them have no other medical problems). Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New Member > Hello Everyone, > > I just found this site last night and today I decided to join in the > group, it will be nice to have someone who knows what it is like to > live with this disease and the pain that goes with it. They call it > and autoimmue disease and they do not want to put a name on it yet > because of insurance reasons and yet I started with it years ago and > now it is where I just have pain and the pills only help so much. > > I also have migrains with it that I am on pills for as they would > never end. Do any of you have them with this disease? I hope to get > to know each of you better. > > Loretta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 Loretta, Glad to have you in the group. I have not been a member that long myself. Everyone here is full of information. They have been a great help to me. hope you feel better soon. Beth(AR) --- teaforeight <teaforeight@...> wrote: > Hello Everyone, > > I just found this site last night and today I > decided to join in the > group, it will be nice to have someone who knows > what it is like to > live with this disease and the pain that goes with > it. They call it > and autoimmue disease and they do not want to put a > name on it yet > because of insurance reasons and yet I started with > it years ago and > now it is where I just have pain and the pills only > help so much. > > I also have migrains with it that I am on pills for > as they would > never end. Do any of you have them with this > disease? I hope to get > to know each of you better. > > Loretta > > > > > ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Welcome Loretta, I'm so glad your here, and will enjoy getting to know you, Tawny > Hello Everyone, > > I just found this site last night and today I decided to join in the > group, it will be nice to have someone who knows what it is like to > live with this disease and the pain that goes with it. They call it > and autoimmue disease and they do not want to put a name on it yet > because of insurance reasons and yet I started with it years ago and > now it is where I just have pain and the pills only help so much. > > I also have migrains with it that I am on pills for as they would > never end. Do any of you have them with this disease? I hope to get > to know each of you better. > > Loretta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Shirley, I think if I were you that I would seek yet another opinion. Have you been to a excellent institution such as Mayo Clinic in Rochester, MN or s Hopkins or a place that specializes in backs like the Texas Back Institute (http://www.texasback.com/index.htm)? It doesn't sound as if you have adequate pain medication either. I'm really sorry that you are suffering like this. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] NEW MEMBER > HELLO EVERYBODY AND KK, > > I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM > SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES.. > > I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I > MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A > VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING > PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE > PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT > HAVE...ECT...ECT... > > ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A > LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I > BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK > SNAPPED, INSTANT AND SEVER PAIN. > > TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE > HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I > WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS > BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY. > > I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME- > OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN > ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE > PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND > SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!! > > MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED > FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE > AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR > SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME > HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360... > > SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS. > FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD > CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS > AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT > BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT > L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE > SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE > TWICE WITH LITTLE COMFORT. > > AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS > NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND > OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO > SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING, > BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND > OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY > GOOD ODDS. > > IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY > DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM > CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I > TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE. > > I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY > LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE > WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!! > OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH > MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE > BANKRUPTCY!!! > > I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 Hi. I'm a new member, too. Two of our 3 kids, aged 18 and 20 are at either end of the autism spectrum. I'm just now starting the oral chelation for our daughter, Darcy. I was referred here from another list when I said I didn't trust doctors and was going to try the oral chelation protocol myself. I appreciate any support or info I can get. My background is in journalism and disability rights activism. Our daughter uses facilitated communication. We live in Denver. Glad to find this list. -Carolyn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 Hi, Welcome to the list. I lived in Denver (between Wash. Park & DU) for a while as did my brother and family including my nephew with DPT-triggered autism. I got my undergrad degree in Journalism from MU and have worked in social services for 20-odd years. S S (I'm chelating myself, but work with kids on the spectrum.) <tt> Hi. I'm a new member, too. Two of our 3 kids, aged 18 and 20 are at either end of the autism spectrum. I'm just now starting the oral chelation for our daughter, Darcy. I was referred here from another list when I said I didn't trust doctors and was going to try the oral chelation protocol myself. I appreciate any support or info I can get. My background is in journalism and disability rights activism. Our daughter uses facilitated communication. We live in Denver. Glad to find this list. -Carolyn<BR> <BR> __________________________________________________<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2005 Report Share Posted July 3, 2005 Hi , Welcome to our group. Sorry you have been diagnosed with pa but it sounds like you have had it awhile so it will be good to treat it. yes.,..I get pain in my breast bone and clavicle as well as all the ribs. I also get soft tissue pain in the whole area mentioned. Hope the docs can help your daughter. How old is she? regards, marti > I my name is shelly and was just told I had Pa one month ago. Years > ago I was told I had fibromyalgia but the Dr. said he thought is was > just pa all this time. He put me on 15mg methotrexate. this is making > me sick so my primary Dr. Gave me prochlorperazine. So will see how > that will be. I have a question. Does anyone have pain in thier brest > bone area? My daughter has had problems with her chest hurting and is > in the pain clinic at childrens but they cant find out what is the > matter. I thought I read somewhere on this site about chest pain and > with me just finding out I have PA I was just wonder right now if this > is what my daughter might have but in her chest instead of her hands > and feet. any info would be great. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2005 Report Share Posted July 5, 2005 --- zoeena2002 <shellysmith4@...> wrote: > Does anyone have pain in thier brest > bone area? My daughter has had problems with her > chest hurting and is > in the pain clinic at childrens but they cant find > out what is the > matter. It's costochondritis, inflammation of the soft tissues in the chest. I first experienced it as a teenager. I've been told it can be inflammation of the points where the ribs meet the sternum, or inflammation of the mucles and tendons of the chestwall and between the ribs. - http://www.emedicine.com/emerg/topic116.htm ===================================================== Stein http://www.noblefusion.com/astein http://www.livejournal.com/users/astein142/ http://darkart42.deviantart.com/ ----------------------------------------------------- " Do or do not. There is no try. " - Yoda ----------------------------------------------------- " If you're tired of fighting battles with yourself If you want to be somebody else, change your mind... " -- Sister Hazel ===================================================== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 i too have had some pain in the chest bone area. it actually protrudes a bit and sometimes the muscles right there at the sternum spasm up and hurt really bad. it is a sensitive area. never knew what it was. keri Re: [ ] new member --- zoeena2002 <shellysmith4@...> wrote: > Does anyone have pain in thier brest > bone area? My daughter has had problems with her > chest hurting and is > in the pain clinic at childrens but they cant find > out what is the > matter. It's costochondritis, inflammation of the soft tissues in the chest. I first experienced it as a teenager. I've been told it can be inflammation of the points where the ribs meet the sternum, or inflammation of the mucles and tendons of the chestwall and between the ribs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 -Hi Marti, My daughter just turned 17 and has been going through this for about 2 years, I just wish we could find something to help her. shelly -- In , " snowbound22003 " <mlw402@a...> wrote: > Hi , > > Welcome to our group. Sorry you have been diagnosed with pa but it > sounds like you have had it awhile so it will be good to treat it. > > yes.,..I get pain in my breast bone and clavicle as well as all the > ribs. I also get soft tissue pain in the whole area mentioned. > > > Hope the docs can help your daughter. How old is she? > > > regards, > marti > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 Hi , I sure hope they can find something to help your daughter also! I was ill during my teenage years and sure can commiserate with her. I know it is worse when it is your daughter. My mother may have suffered more than I did. Interesting on the acupressure. best, Marti > > Hi , > > > > Welcome to our group. Sorry you have been diagnosed with pa but > it > > sounds like you have had it awhile so it will be good to treat it. > > > > yes.,..I get pain in my breast bone and clavicle as well as all > the > > ribs. I also get soft tissue pain in the whole area mentioned. > > > > > > Hope the docs can help your daughter. How old is she? > > > > > > regards, > > marti > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 > I my name is shelly and was just told I had Pa one month ago. Years > ago I was told I had fibromyalgia but the Dr. said he thought is was > just pa all this time. He put me on 15mg methotrexate. this is making > me sick so my primary Dr. Gave me prochlorperazine. So will see how > that will be. I have a question. Does anyone have pain in thier brest > bone area? My daughter has had problems with her chest hurting and is > in the pain clinic at childrens but they cant find out what is the > matter. I thought I read somewhere on this site about chest pain and > with me just finding out I have PA I was just wonder right now if this > is what my daughter might have but in her chest instead of her hands > and feet. any info would be great. Thanks Hi I do experience chest pain. It comes and goes. I had a cat scan of my chest and it showed inflamation on my breat bone. I took Ibuprofen, but now I am on enbrel. I'd say I feel 20% better. Its been a month and a half and at times I still feel the ache in my chest. Maybe your daughter has PA?? Take her to a rhumey, and tell them your history. My brother and sister both have psoriasis and probably have pa too but they have not been diagnosed. They experience pain in their back,knees achey at times. Its worth a shot. Good Luck... Debbie in New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 Hi, Denice and welcome. There is no scientific test for PA so it is made by a clinical diagnosis. The presence of P could indicate PA but you could have other things going on that could suggest something other than PA. However, it sounds as if PA is a real possibility. A dermatologist is NOT qualified to make a diagnosis of PA - for that you need to see a rheumatologist. You would not rely on an OB-GYN to treat a problem with your eyes and you should not rely on a demie to treat a joint or bone disease. Please arrange to see a rheumatologist asap. There are many sites on the internet that will help you find the right diet for you. Hope people here can help you find some of the right answers. Kathy F. In a message dated 7/17/2005 7:26:21 AM Eastern Daylight Time, DeniceP234@... writes: Hi, I joined this group to learn more about PA, which I think I have but haven't been diagnosed yet. I stumbled across PA info on the internet when I was trying to find information about recurring pink eye, which I have. When I read the list of symptoms for PA, I was astouded at how many of them I had. I have an appt. with a dermatologist at the end of the month, (I need to start there first.) Here are my symptoms, pain and swelling in fingers, especially in the morning, scabs on my scalp that weep when I pick at them, white thick skin on tops of feet, recurring pink eye in right eye only, achy lower back and hips, and horribly dry skin on hands and fingers with constant cracking. I was diagnosed with eczema over 20 years ago and only started having all these symptoms in the last 3 years. I follow a really clean diet, no sugar, white flour or red meat and have noticed a major reduction in my symptoms, but they are not completely gone. If I have PA, I have it very mild compared to some of you, but I want to know everything I can about the disease so that I can clean up my diet even more, perhaps giving up the nightshade vegs. and maybe even gluten. I've never been diagnosed with psoriasis or arthritis and I have a question. If a person definitely had psoriasis and definitely had arthritis, would they definitely have PA or could you have say Psoriasis and some other type of arthritis? And is it possible that the diagnosis I recieved years ago for eczema should have really been for psoriasis? Sorry for all the questions, I should probably just wait for the end of the month when I see the dermatologist. At least then I'll know if I'm barking up the wrong tree or not. Thanks for any input, Denice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 Dave, One thought I had about getting your GF to call the counseling phone line is to call it yourself from time to time and make reference to it. Ie, " I called the counseling line and got some great advice. They told me to blah blah.. " With my dh, that might work, but I don't know your situation. No doubt about it, parenting AS kids is tough, and being in the role of a step parent must be even harder. Kudos to her for sticking with it! Liz On Jul 17, 2005, at 9:47 AM, davemarineveteran wrote: > Hi my name is Dave and I am a new member to this group. I have full > custody of my two children, Janell (9), and Trent (5). Their mom is > active duty military and not involved. Both children have been DX > with AS this past week. I knew there was something going on since > they were less than a year. I always broke down instructions > instinctively. So it kinda wasn't a surprise, although it is a > relief to know. The problem is, I have been living with my > girlfriend for over two years and she is a tremndious mom to my > children. Though we have lots of fights because she would > discipline the children and make them feel like it was there fault, > while demoralizing them. I tried to explain to her that it wasn't > there fault, but she would have none of that. She thought they were > doing it maliciously (to the step mom). She has been reading on the > AS and is finding out that it isn't the children's fault. But she > still struggles with giving the children too much information. She > has a phone number that the psychiatrist gave her that specializes > in parent counsuling and coping with AS children, but she won't call > it. How can I get her to call? > Thank you everyone for all the posts; it's kind of a mutual > consoling of sorts. I am glad I joined the group. I just wish I > could get my girlfriend to begin reading these emails as well. I > think she may be in denial. > Thanks Again > Dave > > > > > > Quote Link to comment Share on other sites More sharing options...
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