How to Talk to Your Doc, part 1

A True Story:

(Zebra: Basically, in soft-boiled layman's terms, a person with a set of severe debilitating symptoms with no real diagnosis because they don't test positive for anything)

A husband of a friend of mine, when they had recently moved to the area, goes to see the new PCP. (He also happened to be my PCP). He tells the new PCP that he is a "Zebra", has been dx'ed with CFIDS, and needs a new doc to manage his care.

His (and my) PCP, says its becoming more and more common, refills his meds, including the Provigil, and POOF, our hero the Zebra continues to get the care he needs to function most of the time. It doesn't really matter that the Zebra's Provigil is a bandaid on a sucking chest wound, he's got a doc who will give it to him so that he can get around the fatigue and monitor his condition without prejudice. You may argue that CFIDS is simply a set of symptoms of something else, not really a true diagnosis and something they should continue to try to diagnose. While you'd be right, Mr. Zebra knows he's lucky for what he has. He's lucky he didn't get laughed out of the office. The chances are that they will never know what is really wrong with Mr. Zebra he knows that, so he is thankful he is being treated symptomatically.

Many of us aren't even that lucky. I was dismissed for years and years, like most people with chronic disease and pain. Sometimes it still happens, and I still get very anxious when I have to see a new doctor or specialist because I am a little shell-shocked from what I have coined as my "Many Misdiagnosi". That being said, I have some hard won wisdom I'd like to share.

Many mistakes people make in doctor/patient communications can be seen online in forums can contribute to the problems for all of us. Now, before I get accused of blaming the victim, I want to make clear that I am not blaming the patients for all of the problems. I do believe, however, through mistakes I have personally made and the subsequent learning experiences, that we as patients do fall into traps that exacerbate our bad doctor/patient communication issues.

I am beginning this series so that other patients do not make the communication and doctor evaluation mistakes that I have made - many of which I see others making that are often cheered on by members of support groups.

It is this blogger's opinion that Michael Jackson is simply rife with medical and emotional issues and probably is not an authority on healthy communication. That being said, his "Man in the Mirror" song applies here anyway. You cannot change a damn thing unless you start with yourself. You cannot change your doctor's views by force any more than you can make a drunk stop drinking or an addict stop snorting. When you try to force your view on a doctor, your co-dependency is showing, and NEWSFLASH: Docs are trained to pick up on codependency as a mental illness. (As a side note, speaking very generally, they seem much more skilled at this than at detecting chronic organic or genetic disease.)

Would you like some Ambilify with that?

You have to start with yourself, changing your PERCEPTIONS and your COMMUNICATION SKILL SET and your EVALUATION PROCESS.

I will use real life experiences of my own and of others' to back my statements when applicable. Know that while changing your approach will work towards improving your life, it will not work with all doctors all the time. This is why the evaluation process is so important. If you improve your communication skills and your doctor is still a pig headed ego ridden ass with a God complex, you'll want to move on fast before you waste more time and money. That's why I will start with the interview process first.

Yes, Interview Process.

You, Dear Reader, are a consumer. You are a patient, a client, and a customer. You should approach this relationship with your doctor like you would a lawyer, auto mechanic, IT guy, or landscaper. You are paying for a service whether you have insurance or not. You are paying for expertise for things, like a defense lawyer, that you cannot do on your own. Buying prescription drugs online without seeing a doctor might be popular, but like going to Mexico to be given Malaria to spike a fever to kill other bacteria, it is a really really really bad idea. You need medical advice and a prescription writer, and someone to safely monitor you. But you need to find the right one for you.

Would you hire a new employee without an interview? Would you keep an employee you've hired who consistently (not once but consistently) made mistakes and consistently underperformed on evaluations? Of course you wouldn't.

We will, in the coming weeks (maybe even months...who knows?) look at this step by step, interviewing new doctors, evaluating current doctors as a matter of course, and your personal responsibility when it comes to your care.

The fun part is that if this catched on, with all the competition out there, the bad eggs will be reduced to either changing their way or losing money.

I hope that you, Dear Reader, will chime in with your thoughts and ideas, even in healthy debate and disagreement. We are all in this together and I, too, am still (and will always be) learning.

The New President's Answer

Since I tend to be a patriot at heart, I try real hard to respect, if not like, whomever the leader of the US is at a given moment. Even when I disagree with things they say or do.

As a result, I was very interested to hear that the new president was aware that 70% of insurance company claims are for chronic diseases. What is his solution?

Let's fight obesity.

Sigh.

It is this blogger's belief that obesity is a very important issue in the United States. Please, no comments that I am dissing the large folk, OK? I know it is a problem and while I am not even a little obese, I do recognize that it is a serious health issue. Its simply not the focus that will solve all our scariest problems.

Obesity is linked to high cholesterol (which I have and am not obese), diabeties, heart disease, hypertension, poly cystic ovary disease, and a bunch of other big nasties. All very serious problems wihout a doubt. What's more, they are all pretty expensive problems, too!

Ever see the price tag on Lipitor?

So, if we fight obesity in this country, I hypothesize that the cost of healthcare will come down for the rest of us, at least it seems to be what the new administration thinks!

Sounds good, right?

On the surface, yes. It very well may be a good place to start. After all, there are reasons I am not in charge of the country and that I don't make the rules. I'm not what you would call a diplomat and I make George Bush look like a pretty eloquent speaker (who also has Lyme but is ashamed of it, it would seem.)! I'd be fumbling over the names of newspapers I read worse than Sarah Palin because some days I am lucky I remember my name much less what I read.

So maybe I am splitting hairs, but I would have felt much more fulfilled if President Obama said he would like to start with the obesity issues.

My issue? When it comes to Chronic Diseases, in many cases the docs know where to start looking for medical problems in the case of obesity. They look for the sugar issues. They look for heart disease. While some (not all) heavy folks do not like to be told they have to lose weight and many avoid the doctor because they do not like to be patronized about their weight (and who can blame them as doctors CAN be very patronizing to those too heavy AND too thin?), many do get inspired to do something about it. Many control their sugar or cholesterol through diet and exercize when it was brought on by being overweight.

What's really bad though is that heavy people DO get sick for reasons other than their weight, and many are dismissed because the docs blame everything wrong with them on their obesity. So, make no mistake, its a problem no matter how you turn it.

And what about those issues not being brought on from weight? Doctors do not even begin to know where to search for the problem. There is the problem! When doctors cannot look at you and tell you to lose the weight and exercize or take an antidepressant, many have no idea WHAT to do!! Right now they have a pretty firm handle on the prescription pad for the Lipitor or the Welbutrin, but when it goes beyond that, many of our doctors are not equipped to handle trouble shooting, diagnosing, or maintaining patients that do not fit into the obese or depressed category.

That is scarier than the epidemic of obesity. Much scarier. When children grow to adulthood never being diagnosed with genetic disorders even when all the signs were there from birth, when teens lose their formative years suffering from a vector born disease that isn't diagnosed, and when this sets patients up to see out nefarious-types for doctors who claim to cure all their ills in their own desperation for themselves or their children, we have a problem much larger than obesity.

Another Lyme Disease Blog? Oh NO!

Yes. Its true.

I was bitten by a tick.

Many, in fact, over the years that I grew up in the Great State of New Jersey. In 1987, I got a "virus" that wouldn't go away. It was never treated as an infection, as my WBC was not elevated. I was 16, almost 17.

It took a 20 year journey to find out what was wrong. Many misdiagnosi (my coinage) took place in the meanwhile.

I also may have been born with a genetic disease, of which I never knew, called Ehlers-Danlos Syndrome. My family will be confering with a geneticist this winter to confirm/diagnose or even possibly get a differential diagnosis. Life is just chock full of surprises sometimes.

On this journey of mine, I have learned a few things about pain, doctors, medicines, and, oh, yes, community support forums and 'activists'.

I have learned a lot about the controversy surrounding Lyme Disease. I have learned about the infighting within said community, and the politics, scams artists, and activists that are really in it for their own benefit, profit, and recognition. I have learned a lot about other communities as well, such as the hypothyroidism community, the "alternative medicine" community, and subsets of autoimmune disease communitites.

In the spirit of the AA quote that is attibuted to Einstein that mentions how doing the same thing over and over expecting different results is insanity, I give you my blog.

I have talked with some in the Lyme Community about necessary reform in the actions that the sufferers and (some) doctors take that bring down the validity of the cause. I have seen similar issues in other communitites BUT the Lyme Community takes the cake for hysteria, spreading bad information, threats against narrow-minded scientists and doctors, turning their backs on the sickest, and the inability to deal with certain political and common-sense truths.

There are reasons why doctors do not want YOU, the patient, going on the internet to get disease information, self-diagnosing, self-medicating, and chatting with sufferers who very well may be internet trolls, disguised marketeers pretending to be in your best interest, or, even worse, diagnosing you.

Those who are sick cry for answers. It is not easy, as there are so many layers to the problems we face as a nation and a world in getting diagnosed and properly treated for illness and pain. The problem is not just with the doctors, the big pharma, little pharma, IDSA, politics and elected officials, insurance companies, or the internet. While these aforementioned things are huge hurdles and need to be addressed for change, they should not be used as 'scape goats when the chronically ill communitites are in need of reform, real protections, and people who speak the truth.

I said when I got better I would dedicate myself to the causes. I am not better. But I realized if I do not start with myself, and take that step, I'm no better than anyone else. I am also starting a NEW discussion group here (links will be up when it is time to start). I hope to get others, smarter and more eloquent than myself to write some articles on this blog with me as we move forward.