My Doctor Is Killing Me
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.
Add A New Comment Report Abuse
Add A New Comment12 Comments
All I can say is WOW. You are very courageous for sharing your story with others. You are turning frustration into action. I think others are going to learn a lot from hearing your story. You are right -- you need to advocate for your own health & it is a journey unto itself. I am on my own journey & didn't even realize until the other day that I had ovarian cysts. I asked for a copy of my ultrasound results & that is when I saw that info. Two doctors have looked at these results before me and neither of them mentioned this to me. By being proactive, I learned more. This is not an easy thing to do, but isn't your own well-being worth the extra effort? Can you also keep us posted on EmpowHer.com? I look forward to hearing more about your journey back to health.
Thanks so much for your response. Yes, I plan to put my posts here as well, and I'm currently reading a MUST book, "Our Daily Meds" by Melody Petersen. It's astounding how much medication is handed to us without our symptoms being studied as reactions to previous medications. And more so, how much medication is given without it being tested against anything other than placebos, rarely in humans, and oh, yeah....the demographic of women is virtually ignored.
Ratmando, your story is astonishing. And it's frightening to think it may be repeated over and over again with women who aren't as able as you were to finally take charge of your own information and become your own advocate.
I've bookmarked your blog, and will be interested both to read some of your back-posts and keep up with your future work. I think what impresses me most is that after 30 years of a difficult health journey, your attitude is smart, positive and proactive. Which is not to say that you sweep any negative feelings under the rug -- they are part of your story, and are important. But you are able to walk the thin line between emotion and bitterness, and I find that phenomenal.
Please look in on Empowher often -- you are just the kind of woman who helps other women looking for answers. Thank you, and take care!
Thanks Diane- I am finding very like-minded people here. It's astonishing how little we know about the people we are expected to trust the most. I appreciate all of the stories I'm reading.
Might sound a little 'sick', but in some ways (not all), you can also consider yourself lucky. I have had the most horrible manifestations from EDS all my life, but have always adjusted to them until . . . I woke up one morning only to have any life I've ever known completely gone forever from nothing more than just waking up.
I completely agree with the medical community in general is lacking in a generation where care is all about the almighty buck. After I was originally diagnosed w/ EDS (at the age of 14), it took me approx 18 years to ever find anyone that could medically re-confirm my diagnoses - so I had paperwork to present to all the others who obviously have zero knowledge about the disease or its devastating effects. I have never run into so many uneducated, and even unmotivated 'medical professionals' in my life. Unfortunatley for me, that was as far as I got - since it's near impossible trying to find anyone to monitor/ manage me with any sort of expertise on the disease (that they haven't gotten off of the internet - which is overly obvious once they walk in the door & start poking/ prodding). I have been actually told by dr.s that they have no time (and are actually losing money) by seeing me since I/ my history is too time consuming & they had more patients (e.g. textbook cases) that they could see in volume. It was suggested I go to a medical institution where they have more time to research, etc. & take their time - have been through several only to be told that they have absolutely no idea of what to do w/ me (surprise, surprise)
Well anyhow, that one lovely morning that was the last day of the only life I've ever known/ lived, my spine became the next victim of this no cure/ no treatment disease. Aside from the plethera of manifestations, it seems that my entire spine is rapidly degenerating - at an even faster rate than the rest of my joints, tissue, etc. So now I spend most of my days bed ridden, staring at the same 4 walls, sleeping from all the narcotics that barely even touch the chronic severe pain or staring at the stupid tv (that I absolutely cannot take anymore). Oh, did I forget to mention that the 20 different spine specialists (they usually sweep any true understanding of EDS under the rug), have all concurred that I need a full spinal fusion (from neck, down) - yet I'm inoperable due to the EDS. Nothing like a catch 22 to mix things up a bit! I am completley incotinent, have lost feeling/ use of many of my extremities, & have so many other mechanical & spinal nerve damage than I even care to think about. My autonomic system is going haywire - effecting my heart, breathing, etc., have all the fun edema, vasculits (which is another serious issue w/ most of us), etc. etc. etc. plus all sorts of actual spinal cord compression from either lax vertebrae (of the ones that haven't collapsed yet) oh, whatever . . . it is so overconsuming that I just can't even think about it anymore
But I guess my point is, it can always get worse. I know there are people out there that are even worse than me. So all we can do is just keep pluggin' away & do whatever we've got to do to get through the day - right? Sometimes I get angry when my body doesn't work the way it should, but for whatever weird reason - I never get depressed. Just keep pluggin' away - try to find that one specialists (who is God knows where) that might actually be able to do something. It is beyond frustrating, but don't ever let it get to you. Stay proactive. When they say no, you turn around and look somewhere else for the RIGHT answers.
In this day of designer diseases (e.g. the ones that everyone has turned into a lifelong cause to help), it's a real shame that other really serious & potentially life threatening diseases are so far from the minds of the medical community. We EDSers have all been through it, and keep going through it - doctors who have never heard of the disease, nevertheless know what to do w/ you while you're standing in front of them. Medicare doesn't exactly help either (know your plight there) - bad enough that I get substandard treatment b/c they don't want to pay for anything (b/c we don't fit the 'normal' mold) You just have to keep pluggin' away . . . and try your best not to let it all get to you. I always say sh*t happense, and it usually happens to me . . . but at least I'm glad that is me & not someone else that I love (who would never be able to handle it), ya know? Just keep pluggin' away & have faith that somewhere, somehow, some day you'll run into the right person who will be able to help make some difference in your life and your condition(s). That's about all any of 'us' can do.