FIRST PERSON: A TRUE STORY OF A PWC
By Colleen Blanco
From Fall 2013 Forum
I have your illness. This could happen to you at any moment in your life. I knew that the Texas Medical Examiner’s Office was going after pain mills and unscrupulous M.D. `s, D.O`s. and pain mill doctors. That is a must for quality care for most patients. There are many over-inflated egos here and many physicians abuse the system for profit. I have seen PWC`s die due to lack of their Doctor’s understanding of their illness. It broke my heart when my neighbor died. I saw her decline and requested her husband to allow me to accompany her to her CFIDS Doctor. Rather than follow a simple request, he made an appointment for himself making it impossible for me to go with her. She died early the next morning. I was there.
This is Texas, the Lone Star State. We have our heroes here such as Sam Houston and Stephen Austin, after whom our capital is named. We have a problem. We must depend on a flawed system of health care to serve those with CFIDS/ME, FMS, Gulf War Syndrome, other similar illnesses and also serve our Vietnam veterans. Currently, we must depend on flawed and inflated laboratories that have serious problems with testing for a sophisticated illness such as ours. They lack the complex instrumentation that only research companies and universities have. That being said, the high volume of testing is not regulated correctly, nor is there titration of equipment in place to watch for and recognize catastrophic false results.
I was a victim of scandalous proportions. My civil rights were violated as a person with an intractable pain syndrome that accompanies this illness, known as CFIDS/ME. My health care provider does not recognize Quest Laboratories. My son drove me to my pain doctor. I was immediately given a cup to have a urinalysis. I knew this was coming and I was looking forward to it. I was asked the day before to bring a piece of paper outlining my current allergies and the pain medicines I had taken. I did so on the day before my appointment. I went in to see my pain doctor at the appointed time. He came into the exam room and sat down and smiled, asking me how I felt. I told him, “I am not in pain. Thank you”. He did not ask me the when the last time was that I took my precribed Klonopin, Soma, Vicodin, Neurontin, Doxipen or changed my patch. I cannot take Morphine or Methadone. I, like many PWC`s, have unusual reactions to many drugs. We all react differently as did my neighbor who is on our Memorial List. My urine was tested for the presence of the medications I take. I was astonished when I read the report from Quest Laboratories. Their test indicated I had NOT taken any of the medications that I DID, in fact, take!
I recall the words of Dr. Larry Sharp, "Do not take strong medications unless you absolutely must do so. Vicodin can kill your liver. Soma is a muscle relaxer and your heart is a muscle. You do not want to relax your heart too much. Only take Soma if you are in so much muscular pain that you must.” He also quoted a paper on The National CFIDS Foundation’s website, "We're the canaries in the coal mine." I have never forgotten that. I have not forgotten the wise words he spoke to me before he left for Afghanistan. He said to me, "You’re going to have a hard time out there. You will not like the new medicine doctors. You, Kiddo, are going to see the face of hell!" Oh, how true those words have been.
I think we all have the moral ability to be true to ourselves. I have struggled with the lack of information available in medical universities that do not teach students about this disease. Rather, after graduation, these same young minds are educated via the sales representative from Big Pharma. Most Physicians do not know how to read research papers, nor do they have the time. Most doctors view their patients as a potential threat via malpractice law suits as they come through the door, but no matter what, they will pay their bill. That kind of thinking must stop.
It is an abominable practice for physicians to view patients as a threat, all the while treating them for an illness that they lack the education to understand. Doctors do not get to the heart of the matter. Nor do many visit our website to educate themselves as an ongoing process of discovery. Putting it simply, most line their pockets and walk away.
There is a moral dilemma here. Who can the patient trust as their doctor? How many can honestly say that their doctor is a true doctor like my former doctor in Fort Worth Texas, Dr. Larry Sharp? He knew my illness. He studied it. His own wife and child have this same illness. His own peers could not find out what was causing his loved ones to be ill. He spent tens of thousands of dollars looking for an answer.
The book, And the Band Played On, by Randy Shilts, is about the AIDS epidemic in America. It was written shortly before Shilts passed on in the 1980`s. There is an interesting section about the reaction of the blood bank business community to the unfolding disease called AIDS. When the blood bank leaders gathered to determine whether or not they would spend the money to make sure the blood supply was free of infection, they chose not to do so. It would cost too much money.
But back to my urinanalysis. It was negative for all my medicines! As required by law in the state of Texas, I was notified of the test results within twelve days. I called my Doctor’s office and was treated with hostility by the lady who answered the phone. I requested that my UA be retested by a DNA Genomic sample and have a recall of my UA from Quest Laboratories. The following day I was called by someone from the doctor’s office whom I had never spoken to before and was told that they, meaning Quest Labs, had thrown out my urinalysis on the fifth day. I was also told that the doctor treating me for pain had told this same woman to be kind to me. I am always kind; it is my nature to do no harm. Yet she had to go out of her way to be kind to me? I find that so strange. I am guilty unless proven innocent in the form of a laboratory report from a company that one can look up on the Internet and see multitudes of lawsuits stemming from erroneous lab results. This reminds me of Freud's illusion that all women have hysteria because of an overactive uterus. I no longer have a uterus, but if you want to see hysteria just go ahead and piss me off.
All we PWC`s have had these same false negative reactions to medicines. I just wonder how far up the food chain this goes. As you know our food has chemically engineered by-products that could change our testing. GMO`s stand for genetically modified organisms. What are these organisms? Put it on the label and show it to the doctor so he can determine if it is safe. The FDA passes drugs through the same system. Later we see big lawyers scooping up the mess on INFOMERCIALS such as 1-800-Bad-Drug. Who can you trust anymore? There is sophisticated instrumentation available that can detect if our medicines are being absorbed into our bodies. All of our bodies are different. This is the basis of PWC`s. We all have the same illness. There is no fanfare from the CDC who, as I remember so well, diverted fourteen million dollars designated for research on CFIDS/ME into the study of measles! The accountability is no longer there. Where is accountability of the 14 trillion dollars missing from the Pentagon one day before the day of shock and awe following 9/11? Ironic, isn't it? No one has been held accountable in a country that is supposed to have transparency.
It is wrong that one doctor can do so much harm to so many human beings, yet I see it every day. Many people on the Internet have support groups that will testify about unnecessary surgeries, done for profit, that damage the human body and cause intractable pain. I, like you, have a disease that causes that same process. It may not be in my lifetime that a cure is found, but I sure do not want to live the rest of my days in intractable pain. We all have our own belief system. I choose to trust a system that looks after me. After all, there are days I pray for death, just like you, and then I’m happy that prayer wasn’t answered. We experience needless ongoing suffering on the human body.
I do not think Robert Oppenheimer*, in his wisdom, knew just how far up the food chain of DNA genomics this illness would appear to raise its ugly head. It is here and we are all waiting for a more transparent government to tell citizens the truth.
[Ed. Note: *Oppenheimer is known as the father of the atomic bomb and had a leading role in the infamous Manhattan Project where innocent babies were injected with radiation.]
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606