Chronic Illness such as Lupus

lupus

LIKE GRIMMS’ FAIRY TALES

CREATURE IS BORN INSIDE HER

NOT EMBARRASSMENT

Lupus is an autoimmune disease. The immune system gets a little confused and senses a part of the body as if it is an invader such as a bacteria or virus. So it creates antibodies which cause “friendly fire” that damage some of the body’s own cellular proteins. 85% of victims are female.

The full name of lupus is Systemic (the whole body) Lupus (wolf) Erythematosus (Red). The often bright red facial rash is called a butterfly rash because of it’s shape. It occurs in less than half of lupus sufferers. Ulcerations on the face can occur as well. Many of the internal organs can be affected.

A 14th century physician thought the facial ulcerations looked like wolf bites. In that age of superstition, some people feared these victims were werewolves. It wasn’t enough to just be ill!

Lupus is not usually a curable disease. However it can be controlled with medications to partially suppress the immune system and keep the wolf at bay.

INTERVIEW

The interview for this posting is with Dr. Mark Thorson, a recently retired Internal Medicine (Internist) physician from a small to medium sized town in Southwest Washington. The care of patients with chronic illness is a very important aspect of an Internist’s job. Lupus is just such a chronic illness. The name Internist implies caring for people’s insides. However Internists evaluate and treat various skin conditions as well. The skin has been described as the largest organ of the body by some.

INFORMATION ABOUT HIS CAREER AND THE ROLES OF VARIOUS PROVIDERS OF HEALTH CARE

Dr. Thorson: “I’ve treated a lot of patients for chronic illness, such as Lupus. Some patients have been crippled by it and others have only small residual effects.”

He describes the roles of specialists, subspecialists and primary care. Internists are a type of specialist; caring for adults only. The name subspecialist is confusing because, in fact, they are really superspecialized; highly trained in specific areas of medicine. There are subspecialists in many medical fields including rheumatology; the subspecialty devoted to connective tissue diseases such as lupus and rheumatoid arthritis. He notes that subspecialists provide some primary care at times as well, especially cancer clinicians due to the patient being at their facility so much of the time during treatment. When conditions such as lupus are stable, then Dr. Thorson usually provides the primary and urgent care.

Dr. Thorson: “Most of my patients had chronic illnesses. Over half were 65 years of age or older. Their  chronic condition included diabetes, tobacco use, obesity, anxiety, depression, irritable bowel syndrome, and asthma, to name some of the more common ones. One can get depressed if you have a chronic illness.”

He feels that high blood oressure (hypertension) is so common and treatable that it usually shouldn’t be considered a chronic disease. He notes that some doctors now are specialists for only the elderly. They are called geriatricians or gerontologists. He notes that several have come and left his community. Most of the primary care providers such as internists, family doctors, nurse practitioners and physician assistants provide the care of the elderly in his town, as in most places. The field of gerontology as a subspecialty is relatively new.

HIS PHILOSOPHY

Dr. Thorson: “It takes a team to get the job done. The most important quality is to be a genuinely caring person; to have a heart of caring; to have a heart of servanthood. This isn’t a job. This is a profession; this is a calling. This is true for all medical providers. I’ve been blessed with excellent nurses. The home medical model is not tied together only by the electronic medical record, but by caring hearts.”

He describes the 3 overarching attributes of being a good health care provider. He calls them the 3 “A”s: Able, Amiable, and Available. He notes the importance of going the extra mile for patients on occasion to obtain optimal care for them; activities such as filling out forms to request medications requiring prior approval; or taking the time to encourage patients to consider treatment they are resistant to taking. He recalls an 80 something (a 20 something at the other end) finally accepting an antianxiety medication for a lifelong battle with anxiety. He told Dr. Thorson that made him feel “the best I’ve felt in my life”.

REWARDS OF BEING A DOCTOR

Dr. Thorson: “You get to know families. The old time family doctor had a better idea of what people were likely to get since he knew the family so well. One of the joys is to be able to learn all along the way….intellectual challenge. It’s a strategy to not allow oneself to get emotionally overburdened. You can care for someone and not get grief-stricken or depressed when they have problems. I rarely went to funerals when I was in practice. Now that I’m retired, I go more often to share in the family’s grief. It’s important to go to funerals. I think young people benefit from hearing the eulogy to find out what it means to live a good life. My patients have taught me a lot. I thought I knew everything when I first came to town. I had a few patients cut me down to size and teach me important lessons, such as humility and patience. When I retired, I was pleased that a number of my patients said I earned it…and told me they would miss me.”

RETIREMENT ACTIVITIES

Dr. Thorson: “I can be a safari guide to help former patients and friends negotiate the medical care system. I work one evening monthly at the local free medical clinic. It is wonderful. It’s nice not having to learn a new electronic record (the clinic still uses a paper chart). People in this community really care about those who have no insurance such as immigrants and unemployed. I’ve seen families of former patients there. I still keep up with the medical sciences. I set up quarterly meetings for the local medical staff to discuss clinical cases. We often review common conditions that presented in an unusual way that you should not ever forget or they had an unusual complication of a disease process that you really need to be anticipating.”

DIFFICULTIES OF BEING A DOCTOR

Dr. Thorson: “Some clinicians are overloaded with things that crowd out patient care.  There were not enough hours in the day and there were lots of things added on including record keeping which took me a lot of extra time. The EHR (electronic health record) has helped some but has not been the ultimate solution. Part of it was my problem but partly it’s due to the electronic medical record not having intelligence. None of these systems even have artificial intelligence, much less real intelligence. I believe there have been improvements in the electronic medical record but I don’t believe that overall it truly improves efficiency. Productivity drops 20-30% and never gets back to where it was before. Clicking a box isn’t nearly as important as doing what you’ve been doing or should have been doing all along to help the patient. As an example, with tobacco use, you try to find the right emotional hook to help the patient quit. Clicking a box that you did so doesn’t really add anything.”

The use of measurements of how well clinicians provide quality care is called quality metrics. A recent survey of primary care physicians reported in AAFP News September 8th, 2015 noted that over half of them feel the increased emphasis on quality metrics has had a negative impact on quality of care. 47% said new trends in health care have made them consider an earlier retirement. About half felt that Information Technology has not overall contributed positively to patient care.

Dr. Thorson: “Staff turnover is maybe a problem. But clinicians (anyone providing patient care) often only stay in our community for 3-5 years. Our community is underserved. It is a mission field in the sense of increased socioeconomic needs. The economic base of our community has been damaged. Many of the good jobs have left. Many who could move elsewhere have left. Many of those who have stayed don’t have the skills to market themselves. So you have a lot of unemployment. The statistics don’t show the situation. Drugs cost the community; with family problems; child neglect; poor educational encouragement by these families for their children; poor prenatal care due to alcohol or drugs; more learning disabilities; more special needs kids. Rural America has lost its industrial base. If you are a man and can’t earn a living, I think that’s depressing….in our culture. Though there are a lot of single parents, they often still are highly involved in the children’s growth and development.”

FURTHER BARRIERS TO OPTIMAL HEALTH IN OUR SOCIETY

Dr. Thorson: “There is a problem of affordability. The middle class is losing affordable medical insurance. The working families may have deductibles in excess of $5000 per year range now. Even though both parents work, they can’t access adequate health care due to the high costs. If you are retired on Medicare or chronically on welfare, you can often get decent health care. It has a lot to do with lobbying power. Such as the AARP lobby for the Medicare population. If a child has a cold, the family is more likely to ride it out and get advice from the telephone advice nurse. It might cost $1000-$2000 for an emergency room visit for a stomach ache…..And these are the working people….They are paying the taxes….They are being punished. I worry about a society that tells the average working people that you are going to carry a disproportionate share of the load.”

COST TRANSPARENCY AND CASH

Dr. Thorson: “Even as a patient myself I couldn’t find out what some treatments cost. This is the only industry where the cash paying customer pays the highest price. Most businesses will give a discount for cash. But not in the medical care system. This is wrong. Doctors need to have knowledge of costs so they can balance in their judgment the wise use of resources. The ACA (Affordable Care Act) has not solved all our health care system problems, though it is rightfully providing medical care access to the poor and uninsured.  I mentioned the negative effects on the middle class. Another deficiency of the ACA is a lack of a tort reform due to the power of the trial lawyer lobby. The ACA term is an oxymoron. It’s obviously not affordable health care (for many). Now we are finding out the true cost of the ACA. If we had known earlier, the law would have been modified.”

UNHEALTHY LIFESTYLE CHOICES BY PATIENTS

Dr. Thorson: “People will always do that….That’s human nature. Medical care givers need to help motivate people who are trapped by life circumstances such as a bad family situation, unhealthy habits, and drug use. Perhaps the medical home model will help especially if the patient is motivated to get better. People get trapped in their own bodies. Some get electric scooters. I have tried to help patients get bariatric surgery (obesity surgery) but it just cost too much and insurance would rarely cover the surgery. Some went to Mexico and had it done there. Probably the best thing we are doing for obesity is the lower Columbia School Garden  program that teaches children about growing food and healthy food preparation. Benefits will take a generation. For people with self-inflicted illness such as Methamphetamine addiction who develop permanent psychosis, long term treatment with medication costs $400-$600 monthly. Drug addiction has a tragic cost to society both socially and financially, but medical treatment is less costly than imprisonment.”

LIVING IN A SMALLER COMMUNITY IN AMERICA

Dr. Thorson: “It’s harder to attract professionals to come to our community due to contracting support for schools. You only need one child to get caught up in the drug culture and you’ll wish you hadn’t moved here. But it can happen in rich school districts. It’s more pronounced here. I still think it’s a wonderful place to live; with a lot of recreational activities, and a lot of wonderful people who have stayed here. If you to want to make it a better place, you can do it. Organizations include a hospital, churches, recreational groups, clubs and civic organizations, caring organizations providing social services, Habitat for Humanity, and various youth groups to name some. There’s a lot of need but there’s also a lot of opportunity. I have no personal interest in entering into politics but I would like to occasionally write a letter to the newspaper editor. In my medical practice, people didn’t usually want to know my political beliefs, especially until they knew I really cared about their well-being.”

FURTHER COMMENTS ABOUT SOME DILEMMAS OF HEALTH CARE COSTS AND ACCESS TO CARE

Dr. Thorson: “When the workers at a local mill went on strike, they immediately lost their HMO insurance, since the company will not pay the health care insurance premium during a strike. In the past I would still see my patients when they were on strike. I don’t know how the billing department handled it. I wrote off a lot of bills in situations like that. If everyone in America were in an HMO, you’d discover what the true costs of health care are. When only a percentage of people are in HMO’s, it makes the HMO look very efficient. There has been a flood of new patients into the health care system now that the poor have better access to health care insurance through the ACA. This is creating problems of access as well.”

The “flood of patients” Dr. Thorson refers to is stressing the health care system by making it harder for newly insured patients to find a health care provider. There’s irony in the notion that now that they have insurance, there’s no one available to care for them. Fortunately it’s not to that point yet. But it is causing some states and municipalities to scramble to find solutions.

SUMMARY

Some people say our health care system is a house of cards waiting to fall apart. Others say we have the best health care on earth. The truth seems to include aspects of both views. What do you observe about our health care system that you like? That you don’t like? What are the barriers to you being as healthy as you think you should be?

Thank you, Dr. Thorson

The Brain

brain1-e1437433699285

GRAY AND WHITE MATTER

INAUSPICIOUS JELLY BLOB

SEES AND PAINTS RAINBOWS

The brain’s nerve cells (neurons) connect with each other at arrays of synapses. Try to imagine all the stars in our galaxy. There are 1000 times more synapses in each person’s brain: 125 trillion.

Yet there’s still plenty of extra room in your skull. The brain contains 60% fat, quite a bit of which is cholesterol. Ten times more numerous than the neurons are the glial cells. They help coat the neurons with insulation and help them construct more synapses.

Emily Dickinson said, “The brain is wider than the sky”. Leonardo Da Vinci said, “All our knowledge has its origins in our perceptions”. Mark Twain said, “Of all the things I’ve lost, I miss my mind the most”. Twain also said, “Be careful about reading health books. You might die of a misprint”.

Prism for Health

brain1-e1437433699285If our bodies are compared to beams of light, then having a better understanding of our bodies is like a prism that reveals the myriad colors that comprise us. This website and blog is the beginning of a project to better understand our bodies, its conditions and diseases, and to analyze barriers to achieving good health.

Each post will begin with an illustrated haiku poem depicting an aspect of the human body such as an organ, a body function, a condition or a disease. This will be followed by a description of the illustrated haiku. Following that will be a “musing” about an aspect of the barriers to seeking good health.

I plan a posting at least every month initially. The key to this project is your input. I will summarize your inputs in the next edition. They will help inform the topics for that post. Between us, my mission is for us to develop a better understanding of our body’s and mind’s normal and abnormal functioning and to better understand why so many of us do not put good health as one of our top priorities. I suspect this process will be “preaching to the choir” for many people interested in this blog. Nevertheless, the choir can impart beautiful music to the congregation.

The future mission of this project will be to “muse” about the music needed to reach the congregation, and enlisting more people to join the choir; to continue the church metaphor. If you are concerned about the future for our children’s and grandchildren’s health, not to mention our own, then please contribute to this site. I welcome people’s personal experiences and ideas for better understanding barriers to achieving good health and breaking through those barriers.

The first illustrated haiku will encompass all the rest. Our brains are of course the key to our future. They are also potentially the key to us having no future. So I like to think positive and believe there’s no time like the present to start putting our heads together for good. To get this blog rolling, give me your thoughts on our ability to seek good health in our country; in our culture.

But always remember to consider the source. Mark Twain said “Be careful about reading health books. You may die of a misprint”.

Cordon Bittner