This the beginning of what I hope will be the end of the issues with the doctors I've discovered over the last five years whose primary goal is to ignore symptoms, family history, and actual visual clues- and JUST look at numbers on lab tests. This is the story of anyone who has been taken the advice of "managed care", and who has ever been part of the Veterans Health Care system in the United States. This is the story of me, but it could very well be yours, too.
In 1979, I was diagnosed with Ehlers-Danlos syndrome. I was also diagnosed with Petit-Mal epilepsy, IBS, and major clinical depression. This was a year that would start the spiral of misdiagnoses, unwarranted medical procedures, and numerous tests that could have ALL been averted had one doctor simply listened. I have never been given genetic testing. I have never been given anything other than symptom cover-ups. For the last thirty years, my doctors have been killing me.
Ehlers-Danlos is a connective tissue disorder. My joints are hypermobile, often snapping in and out of sockets, and my skin is very supple, almost baby-like. As I worked in a medical school bookstore, I was leaning on a desk and an orthopedic professor noted this. He said to me, "You are contorted, have you been tested for EDS?" That was probably the worst pick-up line in the history of mankind, but I fell for it anyway, and said "not at all".
Within weeks, I was to be prodded and poked by Harvard Medical School's most prized students who had never actually met anyone who could contort and twist every single limb simultaneously without the training of a Chinese Acrobatic Academy. I was stretched, poked, pulled and puttied. I felt like a Cape Cod taffy pull, without the fruit flavoring. During the entire circus, I never once was given a copper test, nor any genetic testing, which would have verified the diagnosis. There are a number of illnesses which produce hypermobility. According to Harvard Medical, I was the poster child of the disorder, and certainly ended up in magazines and classroom discussions for several years.
Nothing really came of this until 1984, when I was in the United States Navy. My spine had several subluxations, and I had slipped several discs over a short period of time. Within a few months, I was once again part of the Newport News Medical Center at the Naval Base, providing a freak show, and pointing out the ways I could wrap my own fingers around my hands, and bend over so far that my shoulders could touch the floor.
This time it wasn't the harmless twisting of a trick monkey performing for the doctors. This time, I had some serious pain attached to the dislocations. I was given Body Scans, which included radioactive isotopes and the impossible task of staying perfectly still for several hours as a machine ran up and down me. My relatively small frame was becoming increasingly hard to live with- the patellas were sliding, and the spine was harder to control. I became a victim of the exact demonstrations designed to teach medical professionals how to handle people in my condition.
In 1986, I was given an honorable discharge from the USN due to medical issues. I was the test subject for Robaxin, Valium, and even a chiropractic class, but nothing was helping. For several months as I awaited discharge, I was so medicated, I'd have violent mood swings, and bouts of depression that were greater than I had experienced before. Before the medications, the depression was something I had known about, but the mood swings never happened before. I was always relatively laid back, and fairly chilled out, if not happy. The idea that I could be grouchy just seemed too weird. Yet, there I was having emotional fits of rage, for no reason other than not being able to handle all the medications.
I had no idea this was the beginning of the life that would be mine for the next three decades. This was the beginning of it all. What about your story? When did it start? Who were the first people to discover you as a tester for medications? Treatments? Mistreatments? For the next few blogs, we'll walk through the stories. We'll discover why our doctors are trying to kill us rather than find a cure for what really is going on....maybe we'll find good doctors.