I've been chronicling my story at http://MyDoctorIsKillingMe.blogspot.com, and it's about being a female patient in the Veterans Medical system; it's about being a woman misdiagnosed with several major illnesses including Lupus and MS; it's about being an advocate for ALL women who are mismanaged by Health Management Organizations. We are more than numbers in a blood test, and it would be wonderful if HMO's realized that an average isn't normal for everyone. (For instance if someone offered you 2-8 slices of pizza, would you be able to eat 5- the mid range of "normal"?)
Since I was 13, I had amenorrhea, dismenorhea, clinical depression, and IBS. By the time I was 20, I was already treated for epilepsy, Lupus, Crohn's disease, Anxiety, PTSD, and had been on nearly 10 antidepressants. Over the next 24 years, medications were handed to me to "Shut me up", to "prove you're wrong", and to "test out what happens". As a result, I now have a dead thyroid gland. When I finally saw a gynecologist who agreed to test me, and learned I have Polycystic Ovarian Syndrome, we discovered the damage was complete, and I am sterile. The cysts likely had grown since I entered puberty, and is the probable cause of most of my depression, and female disorders.
In 1980, I was diagnosed as having Ehlers-Danlos syndrome by an instructor at Harvard Medical School who observed my joints in contortion as I worked at their book store. For years, I ended up with a variety of dislocations and subluxations that were mistreated with steroids and muscle relaxants. Both of these treatments further created damage to the joints. In my 40's, I was given morphine, oxycodone, and was told my pain was something "to live with" because the minor fractures left behind by the bone rubbing against bone was something that is part of Ehlers-Danlos.
It was these very pain treatments that further damaged my immune system, and I now have weight gain, without any explanation, of nearly 80 pounds- that further damages the joints. I lost 50 pounds in a matter of weeks without any change in diet or exercise, and then gained another thirty. According to the Veterans Administration, my weight is not a result of their treatments, despite the fact I had been a size 5 for a majority of my adult life, until they administered their special brand of care.
For years, no doctor would allow me to see any of my blood tests. I finally had enough when I turned 42, and found myself in a hospital with pancreatitis, sinus infections, and gallstones. I now demand my blood work documentation be handed to me before I leave any appointment. According to my tests, which doctors had told me were "normal", in the last ten years, there is a progressive increase in Estrogen, an increase in eosinophils, bilirubins, white cells, triglycerides, and sharp drops in DHEA, proteins, and oxygen levels. My prolactin jumps and drops substantially every few months, and I've been told I was menopausal from the time I was 30.
The thyroid panels showed TSH had been steadily increasing by 1-3 points per year since I started pain medications, and no one, not even a lab tech noticed that my weight had increased by 10-15 pounds PER MONTH during any treatments that involved prednisone. My body temperature has steadily gone from 98.9 to 97.1, and no one noticed. And, I have edema in my hands, feet, and face that causes so much swelling I am unable to bend fingers, or stand up. This year, I ended up with symptoms of false Pregnancy- including skin discoloration and breast milk- finally revealing a single blood test that showed my estrogen levels were three times normal range.
I researched the standard WebMd.com and wellness sites listed in search engines. I discovered Cushing's Syndrome, Polycystic disorders, and Hashimoto's through the hundreds of patient blogs. My cortisol tests kept showing "normal" range yet I was denied LIFE insurance because I had a HIGH CORTISOL level. The more I learned about Ehlers-Danlos, the more I discovered that many of the medications I faithfully took as a dutiful patient caused me more damage. Because I'm on Medicare, I risk having doctors who do NOT monitor health history, symptoms, or even health records simply because they need to follow MEDICARE guidelines. And, whenever I complain about feeling fatigue, and lack of libido, I am told I need to change my antidepressant medication. Anti-depressants, by the way, are the number one cause for decreased libido in women.
My doctors are killing me, despite an oath to "first do no harm". Since I have put my trust in their education, I have only become increasingly sicker. It wasn't until I put the effort into my own advocacy that I learned about the issues caused by ovarian cysts. It was only through my medical studies that I was able to distinguish the symptoms of Ehlers-Danlos from those of Lupus- and Fibromyalgia. Because of my research, I was able to find specialists who understand hormonal issues, and because I have kept records of the medications I was given, it was proven that prednisone caused a marked decrease in my immunity. Hashimoto's was a direct result of mismanaged health care, that relied solely on numbers on tests rather than the facts of symptoms, family history, and health history.
My hope is that all women will learn to become better advocates, and self-reliant in determining their own directions in health. I am still learning. I am still discovering. And, I found this site through that constant need to be a more alive, vital, and a human- being. I hope some of you read the blog and post your own stories to it. And, I hope I can offer assistance to others who have been tossed around by health care professionals who are given their directives from administrations that rely on bottom dollars rather than the wholeness of the mind and body.
By the end of this year, as I turn 45, I hope to finally have full control over weight, pain, and certainly the disabling illnesses which have created migraines, depression, and edema. The journey will continue on my blog, and hopefully through the friendships I gain through sites like this.