How to promote your own health as a partner with doctors and your insurance company

     My husband Sam came home from Belize with a lot of souvenirs--hand-carved earrings, woven chairs and hammocks, an embroidered purse, and a wonderful strain of ecoli.  Since then, we've been on a journey to get him well.

     I'm no stranger to doctor's offices myself.  I have an auto-immune condition that is definetly fibromyalgia and sometimes parades as lupus.  My symptoms often require expensive testing.  Sam's current condition demands lots of communication with the doctor's office. 

Here are some principals that guide us:

1. Doctors are very busy

2.  They don't know how sick you feel.

3.  They may not think of every question to ask, so list even symptoms they don't ask about.

3.  Don't hesitate to phone if your condition worsens.  Keep calling until you get the person you need to consult. 

4.  Ask for copies of all tests--keep a file of them.

5. Record symptoms on a calendar or diary if they are prolonged.

6.  If your doctor is not helpful, change doctors

    Some of my idiosyncrasies are that I look up every symptom and medication on the internet.  Do I grow paranoid?  No.  I usually find that the things I fear are ruled out by the conditions that actually exist.  For instance, I researched extraovarian cysts, because I have one.  I found that my doctor is being very cautious and is checking it as frequently, or more often than is recommended.  This boosts my confidence in her.  I also found that this type of cyst seldom develops into full-blown cancer.  Whew!  What a relief. 
     Another measure we take is to guard our pocket-books.  My husband records all bills, how much insurance pays, and then we save all documentation.  We keep track of deductibles ourselves and call both the insurer and provider if records don't match.  In 75% of the bills, there are errors--to our detriment.  We have saved ourselves hundreds of dollars this year alone by finding errors that were corrected easily.  I hate to sound cynical, but something is drastically wrong when billing departments and insurance companies make so many mistakes.  One simple problem was that a certain test appeared to be the same to my insurance company.  Twice, they denied payment.  After my third phone call, they finally made the adjustment, and I paid only $11.
      I also keep up with the latest treatments and medications.  In the case of a chronic illness, it pays to know the newest research.  Most doctors don't mind switching patients to a newer, less toxic, more effective, or less expensive medicine. They want to know if something is not working as it once did, or whether you are having an odd reaction.  Doctors are not God.  They are more like auto mechanics adjusting this and trying that.  Communication is the key.  Sometimes, oddly, I have had to fight my way through a watch-dog receptionist to get to a nurse or doctor, but we ended up saving a lot of time.  
     Sam's ecoli adventure seemed to improve, then he worsened over the weekend.  Neither of us is inclined to frequent emergency rooms, as we are sending kids to college and saving for Cancun.  So we stalled until Monday, and I began calling the doctor's office every 30 minutes.  The receptionist kept giving me snooty messages. 

"The doctor is with a patient now, why don't you just bring your husband in?"  For what, if the doc couldn't see him?

"I can't tell you any information.  I can only give your husband this information."

"We can't send his records on to another doctor unless your husband comes in and signs papers."

"The doctor will call you. He's with a patient."

I asked to talk to a technician, I asked whether Sam's tests were in, I told the receptionist that my husband was very ill and I was concerned that he couldn't sit comfortably in the waiting room.  He was too attached to the toilet.  She kept giving me non-answers and acting impatient.

Finally, a doctor called me back at 4:00 PM.  They had been waiting for his blood test to come in--now why couldn't the receptionist have called and told me that?  It seemed after the blood test came in that there was somewhat of an emergency, and they needed to see Sam immediately.  I had him in there in fifteen minutes, and they saw him quickly.  It seems that Sam was supposed to stay for an examination on Friday before the awful weekend, but technicians had drawn his blood and sent him on his way.  He is showing some signs of kidney problems, and the doctor is concerned that the branch of ecoli may be one that damages the kidneys.  Further blood tests are helping us make decisions. 

     In this procedure, we also made some errors.  Sam thought that the doctor wanted to make lots of money by asking him for return visits. He was as stubborn as a puppy suspecting neutering.  It turns out that they wanted to be sure his ecoli wasn't ruining his intestines and kidneys.  Also, I decided on my own to give Sam some imodium to get through the weekend.  In our case, it didn't even slow things down, but they told us that with ecoli a patient needs to let it all run through rapidly.  I should have gone to the doctors' visits with him, as he wasn't catching all the information communicated.

     My final conviction is that each of us must take responsibility for our own health care.  Our doctors see lots of bodies, but we each have just one body.  It makes sense that we have more to gain or lose in promoting our own vibrant health than any health care professional does. And dedicated doctors expect us to be proactive in decisions about our own bodies.  We need to cultivate and court wellness like an elusive sweetheart, especially as we age.