In search of a few good doctors

Finding a good doctor is hard. I’m not even going to take into account insurance and payments for today’s discussion.

Doctors, like everyone else, have personalities. Sorry, but we do. Some more so than others but I digress. The patient-doctor relationship is interesting. It’s one of the few times where we let a stranger into our very private world, almost immediately, and we TRUST them with our lives. Did you do that with your husband or wife? How about your coworkers? Probably not. Physicians get to be a part of very intimate parts of our lives both happy (birth of a baby) and sad (death of a loved one). We inherently trust them unless they show us a reason not to trust us. We rely on their expertise to help us make decisions. What medication is best? When should I have this procedure? Some personalities click instantly and some no matter how hard you try the relationship just doesn’t’ work for some reason. Patients have fired me for various reasons, and I’ve released patients from my practice for various reasons. The relationship wasn’t beneficial to either party, and that’s not good medicine.

What happens when that relationship becomes a patient doctor patient-doctor relationship? I am no longer the expert, or at least I shouldn’t be. Finding a doctor who knows more about my disease can be a challenge. I NEED a doctor that knows more about my disease than I do. One it will keep me on my toes to continue researching my disease, and two it makes the person who needs to be the expert the expert. I want to do what I want to do. My husband loves it when I do that. There’s a great example from the movie My Big Fat Greek Wedding. The man might be the head of the family but the woman is the neck and she can make the head turn which way she wants. I can very easily go to a doctor and say this is what I want, this is the medication that I need, ok and go. And you know what, a lot of doctors when they are treating another doctor they let us do that. STOP IT RIGHT NOW. They are not the doctor at that time. I am not the doctor. I am the patient. If anyone else came in an demanding a certain treatment, I’d look at them like they had 5 heads and say … um ok? Why do you pay me again??? OH, right, to make the decision that is best for you. But what you need and what you want may not be the same thing.

I need the doctor to have answers to my questions. I didn’t bring you a question for no reason. I assuredly spent hours researching it in text books and asking every doctor friend I have because that’s what I do. And unlike the general population I have access to the same reference material you do. I am not on wiki or watching Dr. Oz. I’m reading pubmed, Up to Date, or reviewing the latest clinical trials. I ask because there is no consensus or no one I know knows the answer. You better be ready for your A game. I’m going to bring the hard questions. It’s ok to tell me you don’t know, I didn’t either.

Interviewing a patient doctor can be a challenge. I know why you ask certain questions during the interview. I know why you are ordering blood work, I know what diseases you are looking for. I’ve already come up with a differential in my head for all my ailments. I probably have a plan worked out too. I have the ability to lead you down a treatment plan maybe intential or not, becasue I gave you the right answers. Almost every new doctor I meet, once they hear that I have edema wants to check my thyroid. My thyroid is normal. It’s almost perfect normal. So you know what, I often don’t talk about the edema much, because once you hear there’s pretibial edema you are going down the rabbit hole of checking my thyroid.  I’d probably do the same. Guess what? My thyroid will still be normal. Every test ever done for my edema has been normal. Despite 5+ physicians evaluating the edema, it is still there. Certain medications work and certain ones don’t. But that’s ok, because my current medications do work. You know what I don’t want you to do, mess them up. It took close to two years to get my diuretics figured out so I did not have a potassium of 2 or princess puffy feet. (And yes I was checked for hyperaldosteronism, and it was negative). I once let a cardiologist adjust my medications for a week. I gained 12 pounds of fluid and could no longer wear shoes. I waddled my princess puffy feet down to his office and said, see… this is what happens when you change the medication. But hey, I gave you the ability to see it for yourself.

I shouldn’t get special treatment in your office (I mean I’ll take it, but it shouldn’t be required). If you don’t treat me with respect why would you treat any patient I referred to you with respect? If I don’t think you are good enough to be my doctor, why would you be good enough to take care of my patients? We get referrals all the time from family members, oh you took care of my mom and she loved you so we sent our entire family to see you. Amplify that to 2000-3000 patients who need referrals. Likewise with your office staff. If I can’t get my medications refilled or a prior authorization completed I know you aren’t getting my patients completed.

The good news… you can use medical words. I’m still a peer, just a peer that is a patient at the moment. You all the medical words you want. Get out that 12th grade reading level material. I so love making fun of the patient handouts written on a 4-7th grade reading level. Geez, tell me something I don’t know. (They are good for everyone else, just not for me).

I don’t really envy any of my doctors. I have high expectations for my medical care. I’m probably considered a difficult patient. Don’t waste my time. Listen to what I have to say. This shouldn’t be any different than treating any other patient. All patients deserve to have their time valued and their thoughts listened to.

I have a new patient appointment tomorrow, I hope he’s ready.

What’s the biggest challenge you find in finding a good doctor for yourself?

 

First

This last weekend I flew to Minneapolis. The flight attendant went through the regular routine of safety checks. How to use the seat belt, please insert the metal buckle and pull the strap. Are there really people in this world that can’t use the seat belt without being told, on second thought no I don’t want to know that answer. If the cabin pressure were to change suddenly oxygen masks will drop down from the overhead compartment. Pull the mask to start the flow of oxygen. Place your mask on before assisting others. Such a profound statement from something that I hope I never have to use.

PLACE YOUR MASK ON BEFORE ASSISTING OTHERS.

As physicians we take care of others. It’s kinda our job. Most of us are pretty good at it.  It’s what we do. We fix people. We care for others ALL day. Even when we are not working we are working. I have yet to find a way to completely detach my brain from my patients or students when I leave work. It might not be the first thought in my head but there’s always a smoldering thought somewhere in there, oh Mrs. So and so should be switched to this medication because I think the cost will be better for her and she might have less side effects. I wonder how the students did on their exam. I think so and so might be having a hard time. We are givers. It is in our nature as physicians to care for others.

PLACE YOUR MASK ON BEFORE ASSISTING OTHERS.

Are we taking care of ourselves first? Probably not. Maybe a little, but if you are like me, you aren’t doing a very good job. Not to say everyday is a bad day, but overall I could be doing better. I tell patients all the time who suffer from care taker fatigue you can’t care for your loved one if you don’t take care of yourself. Do I heed my own advice, sometimes? My husband would tell you I am not a good patient. He always asks, what would you tell your patient to do, and EXPECT them to do? Because those are different. I would want them to take care of themselves, whatever that means for them. Everyone’s self care needs are a little different. But how can they expect to care for someone else when they aren’t even applying to their own life?

PLACE YOUR MASK ON BEFORE ASSISTING OTHERS.

A few weeks ago I spoke to the college athletes. I showed them a picture of a fancy sports car and then a picture of a clunker car. Who wants to the be sports car? All hands shot up. Who wants this clunker car without wheels? I think one wanted to sell it for parts. If we think of our bodies like cars its easier to think about what we need to do to take care of them. I like to think that gasoline is sleep. If I get good sleep on a consistent basis I wake up with a full gas tank. I can go pretty far that day. If I don’t sleep well, I wake up with half a tank or a quarter tank. I’m not going very far that day. When I hit E, I have to sleep. Sometimes I slam into E, but that’s a different story. The car is never going to preform the way we want it to if you only have a half a tank of gas. Next up is food and exercise. If we take our very expensive high octane requiring car and put bottom line gasoline in it, what happens? I actually don’t know, because my knowledge of cars is minimal, but I’ve been told it’s terrible for engine. I’m a people fixer not a mechanic. What about the oil? Take the oil out, or don’t change it. That engine isn’t running. In fact it might just stop all together. Take the inside of the car. Sun beats down on the seats and the dash. It can discolor the leather. Or maybe you have cloth interior. Someone spills something on the seat. We need to take the time to care for the inside of the car. We need to do the same for our own minds be it meditation, prayer, or self reflection. The outside needs to be cleaned as dirt and mud from the road will get on it. I know I don’t feel like I am ready to start the day until I’ve taken a shower. Putting on real clothes can change your attitude. We had a bunch of snow days last month, I don’t think I put on real clothes for 3 days. By then end of the snow days I felt like a slug. Ugh. So we have to take care of the outside too.  You don’t have to wear suits or fancy dresses, full make up or whatever. Just have pride in yourself and shine it up every once in a while. We don’t think twice about putting gas or oil in our cars. We clean up the inside and the outside, because we want them to look good. Most physicians I know, we leave ourselves last. We give and give and give and give until nothing is left. How do we continue caring for others when we can’t take care of ourselves.

PLACE YOUR MASK ON BEFORE ASSISTING OTHERS

My best tip. Super comfy awesome sheets. They make my bed magical and amazing and therefore my sleep is better. I don’t care if science proves this is wrong, I believe it and that is what matters.

What challenges do you face putting your mask on first? What’s the best advice you’d give a patient? Why aren’t we taking our own advice?

Remember

PLACE YOUR MASK ON BEFORE ASSISTING OTHERS

 

Disbelief

When I was diagnosed with narcolepsy I laughed at the doctor. No really I did. I was sitting in the neurology office waiting to hear the results from my latest sleep study. I had already had two previous sleep studies that didn’t provide much more information as to why I was so tired and sleeping all the time so why would this one be any different. I was expecting to hear the same thing, we don’t know why you are tired, it’s probably because you work too much. It’s probably because you are a resident and you take overnight call. You’re tired because your a female and hormones are weird.

He sat down and asked a few more questions about sleep paralysis and dreams. I didn’t really know why he was asking them. When he was finished he said, well I have good news, we know what’s wrong with you. Wait what? There was something actually wrong with me. You mean the feeling of tired wasn’t normal for everyone else. Falling asleep eating, showering, trying to turn the light off in my bed wasn’t normal? He said you have narcolepsy without cataplexy. No. I couldn’t have narcolepsy. I never fell down and just went to sleep like TV and movies portray narcolepsy. He continued explaining and I continued not believing him. He mentioned something about medications, I stopped listening right after he said you have narcolepsy. How did every doctor I know miss it? I spent 90% of my time with doctors. The other 10% I spent sleeping at my house. The cats weren’t really helpful in keeping me awake, in fact I think they encouraged me to take naps… snuggle time, can not escape. All my friends were in medicine either nurses, doctors, respiratory therapists, physical therapists or dietitians. How did no one notice?

I left the doctor’s office with a prescription for provigil. I called my PCP who is one of the most brilliant physicians I’ve had the opportunity to work with and told him the neurologist says I have narcolepsy. No you don’t. That’s what I said, except I think I might. I thought about all the times and places that I fell asleep. Concerts, bars, restaurants, watching TV, eating, watching movies, the shower, trying to turn lights off. My friends joked it was what I did, oh she’s sleeping, it’s her thing, she’s a resident, she’ll be ok. None of those things were normal. If my patient had told me those things, I would have said, you know what, that’s probably not normal.

I started medication but I still tried to pretend I didn’t have narcolepsy. Narcolepsy wasn’t going to affect my life. I was bigger and stronger than narcolepsy. I was totally going to be “normal”. I was 1 month from starting my first real physician job. Residency was winding down and 12 years of studying was finally paying off. This little diagnosis was not going to get in my way.

Fast forward 2 year. I came home exhausted from work. I fell asleep trying to put shoes on so I could go exercise. My friend texted me and asked why I didn’t meet her to run. What? It was an hour later. I was suppose to go running, but then I fell asleep with my face in the carpet of my bedroom one shoe on and one shoe off. She had already gone running so I took the other shoe off. I sat there on the floor and did the ugly cry. I’m not talking a little cry. The ugly cry is the cry that makes your face contort in not so pretty ways with snot and tears streaming down your face. There are no words just grunts and sighs. It is a cathartic cry, but never fun. I didn’t want to be sick. I was tired (literally) of being sick. It wasn’t fair. Why did I have to be the “sick” one. Why couldn’t I cope better? After all if I just ate right and went outside for fresh air I’d feel better and more refreshed. Except it didn’t matter. Nothing made my brain not want to sleep at random times. Nothing made my sleep feel restorative. Medications make it kinda sort of better. But my medications come with a whole list of side effects. Medication and work. No medication and don’t work. Medication and these other medications to counteract side effects from the first medication so you can work. None of the choices were good.

After two years of trying to pretend narcolepsy might go away, or the doctor was wrong, or whatever I told myself to feel better, I realized narcolepsy is not going away, in fact it might be getting worse. For the first time I had insight into my disease. But it wasn’t pretty. It wasn’t a happy place. It was a land of struggle and opposition. You might be able to go back home, but you can never return to the land of denial.

I really liked denial.

 

Patient doctor?

Sick is defined as affected by physical or mental illness. No one wants to be sick. If you have never been sick, you are lucky. I am not that lucky.

Sure I had a few cold growing up, I even had tonsillitis during summer camp and missed most of the fun. The first time I was truly sick was during my first year of medical school. I spent my entire high school and college career planning to go to medical school. I wanted to help people and cure them from their ailments. Or at least that’s what I wrote on my personal statement and said during my interviews. Why do you want to be a doctor? I want to help people and I have the skills to do so.  Someone should have asked me, how do you know how to help the sick when you have never been sick? I didn’t know what it was like to go to a doctor, yet all I wanted to do was BE the doctor.

Doctors who become patients can be a challenge both for the physician treating and the physician being treated. We don’t like to give up control. We modify our medications or treatment plans, because after all we know best. We are the DOCTOR. Except we’re not we are a PATIENT.

I don’t like being a patient at all. In fact I have white coat hypertension. Hilarious, right? Going to other doctors makes me nervous. Why? Because I know what you are looking for and I know why you are doing certain tests. I don’t like it.

But here I am, with a chronic disease that has no cure. I will continue caring for myself and then caring for others. I know what it is like to have medications that cost exorbitant amounts of money. I know what it is like to not have access to your medication because the insurance company needs a prior authorization and the doctor’s office has not completed the form. I know what it is like to have your appointment rescheduled and ruin your entire day.

I searched for other doctors with my disease and found 2. I am sure there are more but they are trying their best to keep their head above water and survive.

It is ok to have a chronic disease and still be a doctor.