Chronic Disease

Its the individual...

This article hits the nail on the head around a lot of the current issues around chronic pain and addiction. It also is another example of another huge challenge in healthcare.

 One of the biggest challenges I see in medicine is the idea that "someone else" knows better. For any individual patient, that patient, and the doctor taking care of him or her, are going to make the best decision. It won't always be right, but it will certainly be a better decision than one make for 2.000 miles away.  Politicians, insurance company administrators, bureaucrats, "policy makers." and a long list of other people are going to know less about any given situation than the patient and the doctor. And yet, they often have as much (if not MORE) influence, in how an individual patient gets treated. 

This is true with managing pain. For a long time, doctors were very concerned about the dangers of prescribing opiates. Then a whole host of other people got involved, and basically told doctors they were not doing a good job, because we weren't controlling patients pain, not prescribing enough. Now, those very same people, are coming back and telling us we are not doing a good job because they are being prescribed too much. 

How about we let doctors work with patients to come up with the best treatment for that individual person? Complicated? No. Revolutionary? Maybe...

Its just a number (part 2)

The last post on language, diabetes, and blood sugar numbers applies not just to diabetes. It applies to most chronic health conditions. Take blood pressure management. Or cholesterol. Or any one of a number of things that are related to health.

We all want to be healthy, and we want indicators that are health is good. But the reality is that sometimes, we have work we need to do. However, instead of viewing a high blood pressure as a sign that "I am a bad person" try re-framing that to, "I'm glad I have that information, so that now I can take care of it." Instead of and elevated LDL (cholesterol) being something bad, view it as an opportunity to focus more on exercise; or on gratitude that we have found out that its high, so that we can address it with medications. 

When it comes to data related to your health, good and bad are in the eye of the beholder. Focus on the data, not the baggage that comes with it. 

Its just a number

Language matters, and the language we use to talk about blood sugars matters a lot. Sometimes, blood sugar are discussed as either “good” or as “bad.” Oh, your blood sugar is 105mg/dl, that’s a good number. Hmm, your blood sugar is 248mg/dl, that’s a bad number. Its important that you test your blood sugar. 

The trouble with this is that no one wants a bad number. As a patient, you’ve put in all this work to take care of yourself, and then… you don’t get the result you want. You get A BAD NUMBER. You feel disappointment, discouragement. Thoughts like, “If I do everything I’m supposed to, and it still doesn’t work out, why bother trying.” Or, when you test your blood sugar, that might be a test that you fail.

But guess what? Type 1 diabetes is difficult to manage. You can be doing everything right, and blood sugars still aren’t where you want them to be. You can be checking constantly, carb counting, exercising, you name… and still blood sugars are high. That alone is frustrating enough, but when you then feel like you have failed, and gotten a bad number, its enough to make you throw up your hands and say, “I quit.”

Consider the following thought experiment: a person with type one checks their blood glucose 4 times per day (or checks a CGM 12 times per day)

(4 times per day) x (365 days per year) x (50 years) = 73,000

(12 times per day) x (365 days per year) x (50 years) = 219,000

Tens of thousands (or hundreds of thousands) of numbers. If every time someone views a number, they are thinking about it as a test that can be failed, guess what? No one likes to fail tests. 

So, no more good or bad numbers. A number is just a number. Its a piece of information, like the weather. Its helpful information, so that you have data you can use to take care of yourself. No more testing (how about checking?)

Its just a number. Its just data. Use to to take care of yourself, nothing more, nothing less.

Community

As many of you know, I spend a good amount of time each summer at Bearskin Meadow Camp, in Kings Canyon/Sequoia National Park. Its beautiful up in the mountains, and a tremendous amount of fun. The camp is for children and families who live with type 1 diabetes. My first summer there was over 20 years ago. 

There are many amazing things about camp, but one of the things that I took away most strongly from this summer is the community that camp offers. People living with diabetes often feel tremendously isolated. Many of the campers and staff that come to camp feel that most of the year, no one “gets it.” In contrast, while they are at camp, everyone “gets it.” There are a whole host of issues that living with diabetes comes with, and spending time with people who have shared those experiences, is profoundly healing. Why? I think, because it dispels the notion of “I am alone.” 

I like to say that the antidote for isolation is community. 

The challenge is that the feelings of isolation that go with living with a chronic illness are not isolated to diabetes. In fact, many of the patients I see daily struggle with this feeling. The irony is that this difficulty connecting with others is universal human experience. Everyone feels it, to a greater or lessor extent. 

So, for people who are lucky enough to be able to go to camp, come to Bearskin. But, everyone and anyone can practice creating community. If you are feeling nervous about striking a conversation with someone— a neighbor, a friend, someone in the checkout line— know that they are probably just as nervous as you are. And know that both of you will be richer, less lonely, and less isolated, with a bit more human connection. Whether at camp or at home, practice building community.

Inertia

Isaac Newton’s first law says something to the effect of, “An object in motion tends to remain in motion, and an object at rest tends to remain at rest, unless acted on by an outside force.” This is true in physics. This is true in managing a chronic health condition. This is true in life. The course we are on (or that we set ourselves on) tends to remain, unless we make an effort to change it.

Most people will stick with a current job (even if its lousy!) unless really compelled to change for some reason. People will stick with a broken system (ahem, healthcare), unless really compelled to change. People will continue exercising (if that’s the habit) or not exercising (if that’s the habit), until something spurs change. The interesting thing is, even when you recognize that something is not working, the perceived effort to change it is often greater than the perceived benefit. 

Change is hard. Always has been, always will be. The good news is that the effort to change is not required all the time. For example, when I see patients who have been using opiates or alcohol, they have been using consistently for quite some time. Why? Because change is hard, and inertia is working against them. Inertia is pulling in the direction of continuing to use. However, once people start treatment, inertia is working for them.  While things don’t always go smoothly, life is now moving in a better direction, and inertia will likely keep things moving in that better direction. 

So, its important to get  on a good path, to let inertia be your ally, not your enemy. If your inertia, your habit, is to buy healthy food at the grocery, odds are you will continue to do that. If you habit is take your insulin regularly, odds are you will continue to do that. 

Is inertia working for you, or against you? Is your daily routine bringing you happiness, or bringing you closer to your goals? 

The Chains of Habit Are Too Light To Be Felt Until They Are Too Heavy To Be Broken (attributed to many people, including Samuel Johnson, Benjamin Franklin, and Warren Buffett)

Adventures in Healthcare Land (Part II)

Have you ever gone to to pick up a medication at the pharmacy, and been told, “its not covered by your insurance.” Its annoying, right? Its also annoying as doctor when this happens: I pick what I think is the best medication for a patient, and then am told by an insurance company if this is ok, or not. You know what is especially annoying? When we are arguing over pennies. 

I recently got a fax from a pharmacy. I had prescribed a medication to a patient, and before the insurance company would agree to pay for it, they needed additional justification as to why this was the right medication. Keep in mind, this was a medication to decrease stomach acid in a patient who was having heartburn. But before I spent 20 minutes filling out paperwork and faxing it back, I decided to check my inventory, and see how much it would cost the patient to get the medication from me. The answer?

$1.71. 

You read that right— about half the cost of your morning coffee. Oh, and that cost includes my mark-up. 

This is not an isolated incident, and is not the first time something like this has happened. I once had a patient wait 10 days to start a medication because the pharmacy had to get authorization for a medication for which I charge $1.53 per month (that is 5.1 pennies per day).

Now, I don’t think I can change the enormous healthcare system. I don’t think I will be able to change it even in California. But I do think I can change it for myself, and for my patients. Its a wonderful feeling; instead of getting angry about the absurdity of it, instead of trying to convince an insurance company to spend 5.1 pennies per day, instead of getting indignant because of the difficulties my patients are exposed to, build a solution that actually works. 

Putting Leather on the World

Often, complex ideas are better explained with a story than with charts, graphs, or statistics. This story comes from Buddhism, and is one of my favorites. 

    There was once a man on a long journey. As he walked the path, he found he continued to cut his feet on the sharp rocks in the path he walked. His feet were painful and bloody, constantly being cut. Being a compassionate man, he realized if the sharp rocks were cutting his feet, they were probably cutting the feet of other travelers as well. Resolving to do something about this, so set about covering the sharp rocks with leather, so as to protect both his feet, and those of his fellow travelers. 

He resolved that this would be his great work-- covering the sharp rocks with leather, for himself and his fellow travelers. 

However, the more sharp rocks he covered with leather, the more sharp rocks he saw. No matter how many sharp rocks he covered, there always seemed to be more. He and others continued to have cuts on their feet. Despite his great exertions, and thousands of sharp rocks that were covered with leather, the cuts persisted. 

    One day, a monk was traveling the path, and stopped and asked what he was doing. The man explained, and showed the monk his progress, as well as the continued challenge he was facing. The monk replied, “Don’t you think it would be better to put leather on your feet, rather than putting leather on the world?”

Treating Substance Abuse Disorders in the Medical Model

Last post, I discussed how we can view substance abuse through the framework of a chronic relapsing-remitting disease. This post, we will explore what that means for treatment. 

First, the goal of treating any relapsing-remitting disease is to induce remission— make the flare-up, or the relapse, stop. This is often (though not always) achieved through medications. Once the disease is in remission, the goal is to keep it there. 

So, how do we keep diseases in remission? Well, it depends on the disease. Hopefully, we have medications that patients can take to keep the disease at bay. Often, the first question that comes up with this is, “Does that mean I have to be on medications for the rest of my life?” The answer is not simple, and involves weighing the risks of taking a medication (with its potential side effects) against its benefits (a higher likelihood the disease remains in remission). This is not a one-size-fits-all question, and really involves discussions about the risks and benefits. 

So, if remission is the goal, what about relapses?

Well, they happen. I wish they did not. I do not encourage them. The reality, however, is that they do happen, and when they do, its vital important that they are recognized as soon as possible, and addressed as soon as possible. This is true whether we care talking about Ulcerative Colitis or Opiate Abuse. The longer the relapse continues, the more damage is done; the sooner it is recognized, the faster we can intervene and get things back on track. 

The goal with relapses is to make them as short as possible (an hour is better than a day, a day is better than a week, a week is better than a month), as infrequent as possible (once a month is better than once a week, once a year is better than once a month) and as little destructive as possible, both in terms of health and in terms of damage to those around us. 

While this model is not perfect, it is helpful. And the good news, when it comes to treating opiate or alcohol dependency in particular, is that we have some very good medications that generally do not come with a lot of side effects. However, as with pretty much any chronic disease, the best outcomes are really achieved through a combination of medications and behavior change. Its not either/or, its both.

-Justin Altschuler, MD