Day 4 of the WEGO Health Activist Blog Challenge: Why I Write About My Health Issues

Posted: April 5, 2012 in Do Doctors Care?, History, Pain, symptoms and diagnostics
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I am a complex patient. I have lots of physical issues. I do not enjoy any part of my intricacies. It makes doctors dread seeing my name on their schedule.
Since I was 6 years old, it was clear that the illnesses I experienced frequently were not typical. I intuitively knew that doctors didn’t like to deal with me because I wasn’t a simple textbook case of anything. At age 12, I was diagnosed with ulcers. I sustained myself on instant mashed potatoes and plain macaroni with butter. Around the same time, a friend of my Mom’s noticed these odd rashes I would get on my face, and how my joints would sometimes be swollen, causing me to walk “gingerly.” A friend of mine from school had diffuse leg pains one day and left school early. It sounded like the kind of pain that my mom always referred to as “growing pains.” My friend returned to school back a month later with a diagnoses of Legg-Perthes.
Why was it that this pretty little girl who only had a few sick days from school, is now suddenly treated as though she is a princess? She got special hours at school – when she went to school. People donated crutches to her so she could get around when her legs hurt.
I was jealous. I had lots of pains too! I was often out sick because I was unable to breathe properly. It was unfair – I had suffered since I was age 5 with all sorts of strange and unexplainable illnesses. No one gave me days off of school. No doctors were going out of their way, running tests, taking x-rays, trying to find out what was wrong with me. It isn’t hard, even as a preteen, to notice that for some reason, my physical problems were just not that important to the doctors. They were not very nice to me when I saw them. Once a doctor told me I probably had cancer…then turned to my mom and laughed.
By the time I was 16, I had amassed a myriad of odd complaints. I was always given the same prescriptions: Afrin, antibiotics, and cases (24 bottles at a time) of Mylanta. I was in college at 16, And since I wasn’t old enough to hang out and drink yet (in the olden days, drinking age was 18), I immersed myself in books, spending all of my time in the medical periodicals and textbooks trying to figure out what was wrong with me. This research paid off when, at age 17, I became engaged. I went to my doc for the mandatory premarital RPR blood test (for syphilis).I was called back in to the doctors office for the results a few days later. Odd, since they gave my soon-to-be-husband his results over the phone. I sat in a room for several hours. No one would see me. Finally, a doctor came in I had never met before and explained what the problem was – my RPR was positive. This meant I had syphilis…UNLESS, he explained, I had something called an “autoimmune disorder.” I lit up, and excitedly related all of my “odd” symptoms no doctor ever cared about before: unilateral joint swelling; facial flushing on one side, not the other; a butterfly-shaped rash on my nose and cheeks, cyclical bouts of stomach distress and nausea…all symptoms I had read about in the medical texts about something called “lupus.” My second RPR thankfully came back as a “biological false positive,” which, at that point in history, was part of the diagnostic criteria for these autoimmune disorders. This doctor changed me – he listened to me, he believed me, he took knowledge I had found through my research, and showed me how it applied to my condition. This experience taught me that if I was to get ANY attention from doctors for my symptoms, I would have to do my own research, and bring this information to doctors so they could then test me for these conditions. And then, I may get the help I need!
Annnnnd, the rest, as they say, is history. I learned how to research medical journals at the local hospital library-it was free! (Keep in mind, this was way, way before the internet, back in the late 70’s and early 80’s.) My interest in medical stuff led me to become a volunteer EMT with IV, defib and trauma certifications. I taught CPR classes to doctors (prerequisite to their required Advanced Cardiac Life Support classes). I taught legal aspects of emergency medicine as part of EMT certification classes. I really should have tried to go to medical school…
Over the years, my self-acquired research skills helped me to get standard-of-care treatment for a large ovarian cyst, when I was only being offered sub-par treatment by the military (I was a military wife); I was able to obtain tests that confirmed I had several autoimmune and blood-clotting abnormalities, even after a “specialist” had labeled me as “just seeking attention;” I successfully and naturally treated my Raynaud’s Syndrome back in the 1980’s with supplements just now getting a plethora of media attention from Dr. Oz and his colleagues (enough to shock my rheumatologist into documenting my successes with his peers); I educated my ophthalmologist about why my vision was consistently changing (a multitude of autoimmune conditions effect the eye – however, the lens of the eye is made of tissue similar to the tissues that swell in joints, therefore, visual disturbance often correlates with cyclical joint swelling.)
I don’t wish to bore you with all of my research endeavors, but I am quite proud of two of my recent successes – the discovery of the cause of a major and painful change in my, ummm, boobs ( I call it my “Dolly Parton Syndrome”). Six doctors didn’t know why, and five of the six literally gave up and offered me no further testing, hope or inquiry. I uncovered the direct cause through a basic Google search. Within 15 minutes, I had several PubMed articles that provided a detailed description of the biological cascade causing my DPS.
In 2004, I found the research of a most intuitive neurosurgeon, Dr. Aaron Filler, whose reseach and developments in peripheral nerve imaging was astonishing – the type of “back and leg” symptoms I had been experiencing since 1997 were Dr. Filler’s speciality. I literally read every one of his research papers over the next few years. In 2009, I underwent one of his neuro imaging studies – the MRN. The results of this study made me so happy – the increasing pain I was experiencing had a visible cause. I wasn’t making it up. It was real. Not only did I have 2 genetic anomalies, but I had atrophied musculature, and four nerves adhered to each other. The sheer elation of being vindicated, even though I had a major physical issue, was an almost unbelievable victory for me. The thousands of dollars spent on many specialty physicians (orthopedic surgeons, physiatrists, neurosurgeons, interventional radiologists, low back pain “specialists” – many of whom were neither helpful nor kind – and the years of pain, the loss of my career…how much better could my life have been had just ONE of these doctors spent some time perusing some online CME activities, or read a peer-reviewed journal in their area of expertise, or did a PubMed search for the constellation of symptoms a young woman in obvious distress presented in their office one day…that is exactly how I found Dr. Filler. And, several others with symptoms like mine have found him incredibly helpful as well. He has made a difference in many lives world-wide.
Why DO I write about my health issues? I want other people to learn the cause of and solutions to their pain and health problems. I want their doctors to be a source of trust, hope and comfort, not the originator of humiliating comments, such as “what you claim to have can be managed with 800mg of ibuprofen,” or being called “immature and emotional” during a procedure involving multiple spinal injections – without the humane administration of mild sedation (protocol at most pain management centers). A patient shouldn’t be paying a physician to be the herald of public accusations of doctor-shopping “to obtain drugs to sell to your friends;” or the author of comments in their medical records accusing them of “attention-seeking.”
I write to educate people to advocate for themselves. If they don’t, no one else is likely to step up and do it for them. I use my real-world experiences to illustrate what is going on in Western medicine. Everything I relate about my experiences with medical professionals is FACT. It has happened to me. It shouldn’t be happening to me – or to anyone else.

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Comments
  1. Nick says:

    I totally dig your style :-), i feel im in the exact same boat as you in almost every way, which is a real comforting thing when you know you are not the only one on the face of the earth who is in constant pain, being mistreated and misunderstood and i guess you could also put being absolutely screwed in the behind by all the “physicians” with their own agenda’s already planned out before they enter the room.
    i have no insurance and i’m only 24, and can’t work due to the physical nature of being a S.W.A.T team paramedic, and having a number of old football injuries, that have developed into RSD/CRPS, which is a chronic pain condition that is progressive and incurable. After receiving “the top medical treatment” in phx, az And sd.ca with no help improving the quality of my life i finally by the grace of god found the best doc who would bend over backwards to help ease my pain. unfortunately i had to move back to phx two yrs ago and have been going through the gauntlet and total bs of trying to find a dr that cares and does not have another agenda that is totally self-serving. in two weeks i go to a new pain doc and i’m crossing my fingers that it will pay off and i can start living again but just know you are not alone and have a friend you can talk and relate to if ya ever are feelin crappy or have or are looking for any info on treatments. thank you again for putting your voice out there for a just, worthy, and necessary cause, there are too few voices out there for the millions of us suffering everyday throwing away money on useless procedures and meds when the ones that could and do help are kept under lock and key and you have to be lucky or have a magical flute to receive the care that is essential and beneficial to these debilitating, horrifying, under treated, and real diseases, illnesses and injuries with no fault of the patients. i wish you the best andkeep having a voice, i know i could do some activism for the pain community and healthcare system that seems to be worry about profits more than upholding their Hippocratic oaths, instead just a whole but of hippo critic behavior.

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