I just caught up on all the posts to the list and must say you are an admirable group of people!! I stumbled across one of Ed's newsgroup posts and the moment I clicked on his home page link, I felt as if I had found a home.

For many years now (really all of my life since the disease is hereditary) I have struggled with pain. I have been told the textbook list of excuses, from "it is all in your head" ....... to "you have to learn to live with it!!" ......... and everything inbetween. I have been to relaxation therapy, biofeedback therapy, hypnosis therapy, recreational therapy, visualization therapy, etc, etc etc. All of this as reasons NOT to prescribe pain medications. I admit that I did learn coping skills for which I am eternally grateful, but never experienced any real relief from pain.

After I graduated from college I married a military person. For the first time in my life, I was put in touch with Doctor's that weren't afraid to prescribe medication for pain. Those were the best years of my life. I was a healthy weight for once, worked a full time job, and attended tons of social events~~~~~WOW I was NORMAL. Military doctors weren't concerned with insurance, malpractice suits, lucrative practices, et al that civilian docs are.

The marriage ended in Jan of 1997~~since that time, I have once again been at the mercy of civilian doctors. What a nightmare. I have been to an untold number of doctors, including the Mayo Clinic (6 months of testing with at least 20 docs) and have basically been told "we won't treat you here"......... but not in those terms .......... but that is what they meant. I feel like I am in a game of "hot potato" and I'm the potato!!

I found one compassionate Doctor in the town I currently reside in and though he wouldn't prescribe the meds I had under military care, he would prescribe Fiorinal. It did help blunt the pain, but I had to give up my job because I never could make it through a full day. Last summer, this dear healer passed away. Since that time I have been back on the treadmill of civilian care. The number of times I had been turned away after initial consultation had left my hopeless, majorly depressed and very frustrated. I have had NO pain medication for 8 months now. When if becomes completely unbareable, I go to the ER. So every once in awhile I will get a shot of demoral that allows to experience a few hours of relief. The worst part is when the medication wears off!!

I watched the 48 hours episode on chronic pain and sobbed through most of the program. The barbaric way chronic pain sufferers are treated should be outlawed!!

The next day I found Ed and his wonderful site. I wrote to him immediately wanting to be sure I became of member of this list before the elegibility was closed. This has become my lifeline of hope.

Just a short bit about what is ailing me. I have Peutz Jeghers Syndrome. Here is a link that gives a brief overview: http://www.mdanderson.org/~hcc/13_1PJSstudy.html This barely covers the bascis but it will give you a general idea.

For this disease or conditions related to this disease, I have had 14/15 abdominal surgeries. Now you know where the majority of my pain is originating from: scar tissue and adhesions. A bit about me: 35 year old female, divorced, no children, now almost completely housebound. I live in Savannah, GA with 4 cats and my long time canine companion Ophelia.

Thanks for reading this far and thank you all for contributing not just the information, but also your hearts.

Teresa~ More of my story

Lorin, I had a totally different experience with military doctors. Prior to my marriage, I was with my lifelong doctors at Duke and Bowman Gray. So I was a bit spoiled from that care.

Our first major duty station was Fort Hood. Now let me tell you it was a bear getting into the system. There were just so many people and every department I went too there was a triage "nurse" that would look at my records and see Peutz Jeghers Syndrome which they would have no idea what it was, soooooo would decide that I could go on the regular list and at Fort Hood that meants months of waiting for an appointment.

In the gastroenterology department the nurse sent me away and refused to even ask a doctor about the disease. Well I just sat down in the floor of the waiting room and cried. The desk secretary came over and whispered that she would give my records to a doc on the other side (the department was split) and for me to go home and wait for the call. When I walked in my door the phone was ringing. It was the head of gastroentorology and wanted me back at the hospital stat. So I went was escorted past the _itch that had sent me away to the docs office. He profuse apologized and from that moment on I never had another probem with military care. It was like a dream world. I had an excellent gastroentorogist in Texas/Dr. Opelka. He used a surgical technique on me that had only been used in Switzerland. It was such a success he was asked to present the case at the National Medical Convention. I was able to go from 1988 to 1997 without having to have major sugerary for the PJS. The longest I had ever gone before that was three years at the most between surgery.

Everytime we would move, the doctors would already have me set up at the next duty station. The doctors there had a heads up and if something came up that couldn't be treated at the military facility I would breeze right through the non availbility part and be off to see a civilian specialist.

When we were finally stationed here at Hunter, once again I had fabulous docs at Winn. They were amazing. My pain started to be severe during this time. They tried my on different pain meds until they found the one that would offer the relief I needed to live comfortably. That was the demerol. Also, if I had one of my "episodes" where the pain would have me screaming all I had to do was go to the Winn ER the doc would see the orders on my chart to start a heplock and get the demerol/phenerghan stat.

I was like in a dream world of medical care. I new my doctor's home phone numbers etc. During this time I worked a job that required me to be there 6-7 days a week at least 10 hours a day and some travel to other offices on the weekends because I was the regional manager as well as being the manager of my home office and a full time counselor. I was loving life. Oh I had to have some surgeries like hystorectmy and other's but it was all a breeze because I had such a wonderful support system with my docs and family.

I should have known something this good was too good to last. My ex-husband was sent on an isolated tour to South Korea. I stayed here because of my job the house pets and my mother was ill.

6 months before my husbands return, my mother died of bone cancer of the age of 48. When my husband came home for good he told me he had met someone while he was taking his masters degree program in Korea. She was Canadian and he wanted to marry her.

I knew that I was getting very sick from my disease again. I was bleeding internally and losing weight at a rapid rate. Also almost everytime I ate, I would become destended which is the sure sign of a blockage. Well, I was trying to deal with the divorce, only takes 45 days here in Georgia and figure out about insurance etc. A few months after his return I was hospitalized through emergency. My nutrution levels, blood counts, body weight were so low that they had to build me up for six days before they would even chance the surgery. Well it was semi successful ........ I'm not dead. But since that time I have had a pain in my lower left quandrant of my abdomen that feels like someone is sticking me with a knife.

Oh and BTW my ex-husband had the divorce papers delivered to me in the hospital while I was recovery from the surgery. So within a 8 month time period, my mother died and my husband divorced me for another woman.

Since the surgery was my introduction back in the civilian world of care, I was sure that these docs would be able to see with their own eyes what hell my body and insides have been put through and I would have no problems with them. Nope all my case did was scare their pants off. When they saw that I had been on a regimen of demerol with the military docs. Whoo they hit the roof. Civilian doctors just don't prescribe controlled substances for chronic pain associated with an incurable disease because I will have this all my life and no one was going to start me on controlled substances when I am so young because of the major damage the drugs would do to my body over time. So this is where I am. The military docs didn't mark me as a drug seeker, the civilian docs seeing the types if meds I had received under military care made that determination. It has plaqued me throughout trying to find a decent doc.

I am now homebound, no job, no husband, no family, have lost down to 92 lbs in weight but luckily back to 112 (I am 5'10") and miserable from the pain 24/7.

So I hope you will see why I liked the military docs and feel like the civilian docs have ruined my life.

TERESA