When I first started learning about what was going on with this body of mine, I started out by reading the medical texts books put out by Merck. The Merck Manuals are the most looked-to sources for medical professionals, and the Physicians Desk Reference is the one guidebook found not only on the desks of medical practices, but in the Pharmacists tool kit. It's even used by those who determine the outcome of disability applications. I figured, these two sources would be the primary information location, and I would easily discover all that I needed to know about Ehlers-Danlos, IBS, and depression. I was in for a rude awakening.
The internet became part of my daily life back in 1986, when I was a student at Massachusetts College of Art. I signed onto a BBS, with a 300 baud modem, on an Apple Lisa, that probably cost more than my current car. I was studying computer graphics on an IBM Targa and an Apple IIGs, and video on an Amiga 500. (I can now do all of the work I had with three computers, on one laptop in a fraction of the time, and most grade school kids learn what I did when they're still in kindergarten.) But I have nearly 23 years of experience on line, and I know there is as much false information available as there is truth. Wikipedia is not part of my studies, except for hobby based activities. Rumors make for bad medicine.
Nothing is more dangerous to our health than doctors who are intimidated by our willingness to learn. Today we can read any complaints against our doctors no matter where they've practiced. We can read others experiences with medications, and we can meet entire communities of people who are experiencing our symptoms. It was via the net that I met others who served as 'test dummies' to rheumatology students, and found out about the Ehlers-Danlos National Foundation. I discovered that there are even better organizations overseas, with Italian doctors who are in current trails with EDS patients. And, I learned that medications that were handed to me in almost a cavalier fashion were going to leave long-term effects that would create life-long struggles with autoimmunity.
The first time I said to a doctor, "I don't think I've been battling depression since I was a teenager, I think it's hormonal, and I think it's useless to hand me yet one more antidepressant", you could just about hear the doctor smirk. I had a dent on the top of my head where I was pat, and heard, "No dear, you're on the internet too much, and you've been doing reading, hmm?" We have to remind the doctors, a majority of them spend less than one hour of learning time about our particular illnesses back in med school, yet, we spend several hours a DAY researching medications, alternative therapies, and certainly updated research. I have a subscription to Lancet, New England Journal of Medicine AND Merck's website. I don't just visit WebMd.com checking a symptom checker. I had understood that my symptoms were directly related to my cycle and I had a long term record to prove it.
Each cycle, whether heavy, light, or in between, I noticed when I would bloat. I would mark out on a chart when I would have mood swings. Each week, I would note that there were days when my edema was extreme, and other days when I would have to urinate at least once every 35 minutes. The VA gave me a new GYN after my regular doctor there was fired. The new person in charge of my health is Dr. Mary Schram, and she was the first one who looked at the records I kept and said to me, "I think you have Polycystic Ovaries, and I want to get you in for a sonogram."
Sure enough, the tests showed I had built up years of scar tissue and years of cysts on my ovaries and fallopian tubes. I am extremely intolerant of estrogens. I had already known for many years that I was unable to carry a child, and with a genetic disorder, that wasn't a priority. But, I had struggled with many years of depression, and the idea that my hormones were directly related to this made far more sense than anything else I had discovered. And, I never could stay on any one birth control pill for longer than a few months. Every time I had soy, I would become ill. My body was screaming at me "PAY ATTENTION TO YOUR HORMONES!" and I was trying to get a doctor to hear it, too. Finally, Dr. Schram said to me, "Your ovarian cysts are causing havoc on your body."
For years I was given so many antidepressants, antipsychotics, and other mind related medications I was destroying the thyroid, my own hormone regulation, and certainly had caused issues with my liver and pancreas. My gallbladder reacted with stones and pain. My thyroid reacted by turning off, and growing nodules. My pituitary reacted by sending adrenaline and my body had an irregular melatonin level. Nothing can work the way it was intended as all the regulators in my system were altered by misinformed medical professionals who dismissed symptoms. My immune system now has begun to fight against every joint in my body. The swelling and pain proves to be incapacitating, with edema being the one symptom that no doctor ignores.
I learned about Polycystic ovarian disorder and studied it for years. I had always suspected that my body was responding to the nodes. I can tell you the exact days of the month that I will be in deep depression, the exact days I will have manic mood swings, and the days I will be running back and forth to the lavatory. Yet, because I researched my own condition, I was dismissed by many people who claimed to know better what my body was doing.
Today's questions- What have you discovered about your body online that you would like a doctor to explore? Have you been to European and Asian websites to learn about your condition? Do you find there are people on line who are more inclined to know about your situation than your local doctors?