David,
When I read your letter this morning I was absolutely appalled. I couldn't even respond because I was so upset. Why? I don't know....perhaps it brought back bad memories for me. You certainly have quite the history behind you and now I understand somewhat the need for the 300 dose of duragesic. It worries me, but I do understand. As for me, I don't know if you have read my story on the quilt but maybe some time you could take the time to do so. The one thing I don't think I included on it was that all of the surgeries that I had performed from 1991 to 1997 were done basically by the same doctor, same hospital. It was a teaching hospital. At several points during my treatment, when everything seemed to go wrong, I had student doctors say that I had Munchausen's disease...or that I was causing damage to myself to gain attention ( I haven't quite figured out how I gave myself umpteen hundred hernias or fistulas, but oh well.). Each time I heard this I would get upset and say something to my surgeon. He would tell me that he never suspected this, that there were reasons behind all of the problems that I developed (how about an abdomen totally filled with adhesions for starters...but he never, ever admitted that was a problem) and he would insure me that he would have a talk with the interns. Yet, with each new set of interns I went through the same issues. The straw that broke the camel's back was when I was having the last reallly major surgery with him. I requested that I see a psychologist as I was suffering with severe depression (who wouldn't after 26 operations in five years and about 45 in my life at the time). This psychologist spent no more than 10 minutes with me. Half way through the conversation she asked me if I ever did anything to harm myself. I told her that the only thing I ever did was scratch my incision because it itched. This woman had the gall to place the Munchausen's diagnosis on me and my surgeon did not argue it. Six months
after this surgery, which was supposed to be the cure all to all of my hernias, I developed yet another huge hernia. I sought out care all over this country, but no one would touch their mess. I had a number of doctors bring up the Munchausen's crap. So, I was stuck going back to this surgeon for more surgery. Less than two months following this procedure I had the biggest hernia I have ever had. But, that is when I developed a backbone. Instead of getting better I was getting worse. With the help of some people on the IAS I was able to say NO MORE! I still very desperately needed a hernia repair since it majorly affected my urostomy and kidney flow. But, I wasn't about to let this man touch me again. Unfortunately, after being turned down by doctor after doctor, I felt it necessary to return to this man. Luckily, I brought my IAS advocate with me and together we heard his lies. He outright denied that adhesions were a problem, yet in his next breath told us that having the hernia repaired wouldn't end my pain.
My story goes on from there, but you can read it on the quilt. Right now I struggle to live through each day. There is no hope for me. I will never be able to get the SprayGel or any other cure that is out there. My faith has directed me towards stopping others from taking the same paths I have. I have suffered total renal failure on a number of occasions, am not a candidate for either dialysis or transplant, yet the good Lord has seen me through it all. Together we can all move mountains in trying to change the treatment we receive.
God Bless You.
Karla
Littlerock29@aol.com wrote: I hate to hear that you have such an insensitive physician with such bad bedside manners and I understand your anger and I sympathize with you. When I was run over by a semi head on, I held an anger that I couldnt seem to shake. I went from being a carefree do what I wanted to do person, to a person with a spinalcord injury with my insides ripped apart cripple. Not only did the split second change in my life anger me, but I was a bit younger with marriage on my mind and I had a sixty thousand dollar a year job that I could no longer return to. I had no feeling in my legs, nor from the waist down for that matter and I lost sixty pounds and was wasting away. I could'nt find a surgeon who would touch me, but they ran up over 40,000.00 in medical bills just hoping to collect from my misfortune. I lost everything I had ever owned just to keep a good name and keep my bills paid. One evening, I got reall! y ill and had to go to the emergency room, and a friend dropped by just in time to take me, only to find out that I was dying of kidney failure. Wel while I was in the emergency room they called in a surgeon, and a neurosurgeon that had already denied trying to help me. Why the neurosurgeon was called in I still do not know, but my friend watched as he ran needles into each of my toes until they were gushing blood. I looked down at my feet and asked where all the blood came from because I had no feeling in my lower body. My friend looked at me and said that I never flinched or made a move as the neurosurgeon ran the needles into each of my toes. I said naturally I did'nt flinch because I had no feeling in my lower body. My friend was almost sick and he asked the doctor what he was going to do. The doctor who was checking my kidney function said that I was to stay in the hospital because I had no kidney fuction. I was crying in severe pain from my kidneys, because kidne! y pain is worse than any crushed bones that I had in my back or neck
. Well they admitted me into the hospital for two weeks and got my kidney function stabilized to the point that I could be released when the neurosurgeon happeed to walk in. Out of the blue he told me that I was not going to go home and I asked him if he changed his mind about doing the spinal surgury on me. The clown loked at me and said no I am having you admitted to the nineth floor of Babtist hospital, which I thought nothing of because I was hoping that he had found a surgeon to help me and work on my back. When I got to the nineth floor, I realized that the doors were locked and they had no televisions in the rooms and no phones. I was in a wheelchair and I went to the nurses desk to see just what was going on. She pulled me aside and told me that this kind of thing happened all of the time, and that the neurosurgeon had admitted me to the psycho ward in order to collect insurance money. Not because I ! had no place to go, because my parents were living and I had many friends whose doors are always open to me, but he had me admitted for a minimum of 72 hours just so he could run up a bill. I was madder than a hornet and demanded to see someone. A bit later this psychiatrist came up and called me in and she was mad because she was'nt supposed to work until the afternoon. It was'nt five minutes that we talked and she asked me stupid questions about suicide or if I had ever thought of killing someone. I said yes I want to kill me a neurosurgeon for what he has done, the idiot is a greedy nutcase. I said that I had no reason to be in the psycho ward because I am not crazy, but if they did'nt let me out that I was going to show them crazy. I told her that I would run the wheelchair right through the door and leave. Man I was mad! Well I calmed down and asked her if she knew this doctor who happened to be my family doctor and she said yes i know him quite well. I told her to give! him a call and ask him for a diagnosis of my medical problem. Five minutes later they
were apologizing to me and opening the doors to let me go home to my parents. When I got home, my grandmother was visiting from Kansas. She is a millionaire and wont part with a dime. I told her what happened and asked her for a loan to go to San Francisco to see a specialist who would operate on me, and that I would pay her back when the case was settled from the truck running over me. She had the nerve to tell me that if the doctors had me locked up that it must be all in my head and refused to lend me a dime. To make a long story short, no one in the family has spoken to my selfish grandmother since.. I know just what pissed off can be. I was insulted by the hospital, the neurosurgeon, and my own grandmother all in one day.Now this is a true story! It happens that I am a christian, so I am forgiving of the idiots that tell patients that it is all in their head, and I went down the same ! road that you have just traveled many times until I found a surgeon in Phoenix Arizona that felt my pain just by looking into my eyes, and took the risk of paralyzing me and the redicule of possibly loosing his license to practice medicine, and did the necessary surgury to get me on my feet. I have had four surguries in each of the last four years, and I feel like a gutted fish and my legs dont work right so I have to use a cane to get around, and I cant go far because I am really weak in the legs, but thank God for those doctors who do care and refuse to redicule anyone. They see pain every day so they become numb to it. I told you what happened to me so that you would know that we know what you are going through. Say a prayer for the insensitivity of the doctor and find one who cares about his or her patients, and dont let it get you down. I would ignore the bill also and pay the doctor who listens to you and cares enough to do the tests and carry through with your treatme! nt. Of course I can say that because I have over a half a million dollars in medical bills, but I make
real sure that the doctors who cared enough to care for me when I need it get paid as best as I can. I have been paying one doctor for eight years now and he may never collect all of his money that I owe, but he never has asked me for a dime and he will treat me in a heartbeat. Now thats a great doctor and a greater man. Like Jesus said' " pray for those who persecute you, for they have their reward here on earth, but their eternal reward will be cast into outer darkness in the day of judgement" I'll keep yu in my prayers Dave
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