What is Remission of Rheumatoid Arthritis, Part 3

The Story of Remission

Once upon a time, there was no effective treatment for Rheumatoid Arthritis. Eventually, various substances were found to assuage some symptoms, at least slightly. And then one day, doctors thought they had found a cure in cortisone. However, they soon learned that they were mistaken.

During our lifetime, substances have actually been engineered by scientists to have a great effect upon most people with RA. Symptoms of RA can often be decreased enough to enable some RA’ers to live a life that can appear almost normal – to total strangers anyway. This has brought notions of remission into the scope of treatment goals for RA.

History of RA Treatment Goals

1) The first goal was clear: make Rheumatoid Arthritis patients feel better.
2) Disability was generally treated with surgery.
3) Increasingly, however, the goal of treatment for RA has become to thwart joint damage.
4) More recently, “clinical remission” has become a typical goal of RA treatment.
5) I believe it is also important to discover ways to prevent the harm that Rheumatoid Arthritis does to other body systems in order to extend life expectancy.
6) My desire is to make a cure for Rheumatoid Arthritis the primary goal of research and then treatment.

If we are not sick, why do we still have to take medicine?

Clinical remission of Rheumatoid Arthritis does not mean cure. If you have followed Parts 1 and 2 of this series, then you have realized that by now. Medication can reduce symptoms by a certain percentage. If that reduction is great enough, then it may be labeled “clinical remission.” That is distinct from an organic remission which is spontaneous and not drug induced. Either kind of remission is temporary in almost every case. (See The Four Courses of Rheumatoid Arthritis, Part 1.)

Here is where you are glad that this blog is written by a real live RA’er.

Why on earth do they get to call this remission?

1) RA’ers in clinical remission are expected to continue to use strong medications (including DMARDs and steroids) which have powerful side effects and can cause serious damage. They live with the side effects, expense, and regular blood tests that the medications bring.

2) The damage of Rheumatoid Arthritis can continue during the so-called remission to both joints and other body structures. RA probably will still affect the lifespan of the patient.

3) What if cancer patients in remission had to continue receiving chemotherapy, radiation, or surgery? Would they question the use of the term remission?

Maybe remission is just not the correct word. Since there is a reduction of symptoms, and contraction of some indicators, and a slowdown of the disease progression, I have thought of a better word. If Rheumatoid Arthritis were an economy, they would call it a recession. How about calling it a “clinical recession”?

Is There a Typical Rheumatoid Arthritis

Complications to understanding Rheumatoid Arthritis

Rheumatoid Arthritis is a complicated disease. I am not speaking of symptoms, medications, and lifestyle changes. I mean mechanically speaking – on a molecular level. It is complex and multi-level in its schemes.

That is one reason that experiences vary so greatly between RA patients: Which joints are affected? How many joints? How quickly does it spread through the body? Which other body systems are affected? How much destruction is there in the joints? Are additional autoimmune diseases involved? How does the Rheumatoid Arthritis initially present (what I call the “onset story”)?

What is typical Rheumatoid Arthritis?

Last year, my rheumatologist began to say that my Rheumatoid Arthritis was beginning to look atypical. I did not understand that since the only RA that I knew was my own. Around that time, I began to dig in to investigate what is the typical Rheumatoid Arthritis experience.

I wanted to do the research for myself. WHAT is typical? I read everything I could find.

I have read several books and what is called “typical” differs from author to author. But, I also began to scrutinize narratives of RA’ers all over the internet. And I also have connected with many one on one. What I have seen and heard from hundreds of RA’ers has not fit nicely into the neat categories or descriptions of any author.

Questions need answers

Every little thing that I learn raises more questions. If you have been reading this blog, you have heard me raise some of them. Can Rheumatoid Arthritis be understood or cured without answering any of them? I do not believe so.

To read a few of the questions that I have already raised, see The Four Courses of Rheumatoid Arthritis, part 1 , Is This the Best Time to Have Rheumatoid Arthritis, part 3 , and What Makes Diagnosing Rheumatoid Arthritis So Difficult?

The only thing that I am certain of is this:

If there is any discrepancy between the experiences of people with Rheumatoid Arthritis and those who academically describe and define this disease, it is the descriptions that are wrong – not the RA’ers.

It is not that they got their symptoms in the wrong order. Shame on them for not doing their RA right.

It is not that they have fallen short by missing a symptom on the list. How could they be so negligent?

It is NOT that the patients have failed the blood tests. The blood tests have failed the patients. The tests have failed to sufficiently demonstrate the presence of the disease. That is not the patients’ fault.

Why is it so typical to have atypical Rheumatoid Arthritis?

This week, I have driven across three states hoping to find one small part of the answer.

Mortality and Rheumatoid Arthritis

Is this the best time to have Rheumatoid Arthritis, Part 2: Quantity of Life

This is the second post in a series which addresses the question, “Is this the best time in history to have RA?” Yesterday, we looked at “quality” of life. Today we look at “quantity” of life, or longevity.

This might be depressing, so, I’ll try to make it brief. I have read some pretty ugly statistics about Rheumatoid Arthritis lately. And some of them are about life expectancy.

Mortality Gap

“Excess mortality” is consistently associated with Rheumatoid Arthritis. Some research shows that the mortality risk for RA-ers is about 38% greater than for the general population. It was even worse for women who have a 55% increased risk compared to women without Rheumatoid Arthritis. And no miracles of modern medicine have changed that.

In fact, when compared with the general population, the mortality gap has actually been widening. That’s right. Rheumatoid Arthritis patients are not experiencing the same improvements in survival rates as their peers without RA.

Mayo Clinic doctor Sherine E. Gabriel said this: "In fact, RA subjects did not even experience the same improvements in survival as their peers without arthritis, resulting in a worsening of the relative mortality in more recent years, and a widening of the mortality gap between RA subjects and the general population throughout time."

Reasons

At least half of deaths of those with Rheumatoid Arthritis are cardiovascular related. Although modern cardiovascular interventions have improved life expectancy for the general population, the same is not true for RA-ers. They say more research is needed to look for the reasons.

I do have some theories:
(1) Recent improvements in cardiovascular disease mortality are related to improved medication, diet, and advanced surgical procedures. Maybe RA-ers do not get cardiovascular disease for the same reasons that others do. So the treatments do not adequately tackle the heart disease of RA-ers.

I also wonder whether:
(2) The heart disease in RA-ers responds differently to those innovative treatments, or
(3) Heart disease in RA-ers is less treated because it is not diagnosed as frequently or as early.

How should we respond to the Mortality gap? Next time, in part 3, we look at how research can aim to make this a better time in history for those who do have Rheumatoid Arthritis.

Sources quoted:
medscape
About.com
Science Daily

Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life

We hear it all the time: “this is the best time in history to have RA.” How true is that? Let’s examine the facts.

But first, what RA-er can hear that said without a reaction of dismay? No one who actually has Rheumatoid Arthritis claims that there would be ANY good time to have RA. Of course, we are too polite to say it that bluntly, but it’s accurate.

"QUALITY OF LIFE"

One study showed that RA-ers who took abatacept (Orencia) had improved quality of life as measured using standardized questionnaires. The patients felt that they could do more. But how much more? Could they do what they could do before the onset of Rheumatoid Arthritis? No. They could do more with Orencia than without Orencia. That is improvement, but it is also relative. Let’s break down that “quality of life” slogan.

How does Rheumatoid Arthritis affect quality of life?

Pain

Pain has an obvious impact upon quality of life. For most RA-ers, treatment with DMARDs reduces pain to some extent. But, there are also answers to what I call Leftover pain. Today there are innumerable medications and therapies to treat pain.

Why do I know so many RA-ers who live in so much pain? I have read research which proves that doctors routinely under-estimate the pain of their patients. Proper pain management would be one of the most dramatic ways in which modern advancements can improve the RA-ers’ quality of life.

Depression

Numerous studies have shown that depression follows Rheumatoid Arthritis like footprints in snow. Rheumatoid Arthritis makes an impression on a life that cannot be ignored. If the RA is severe or not successfully treated, the impression can be deep. Our Rheumatoid Arthritis and Depression post looks at this more closely.

Disability

How can you measure the impact of disability on quality of life? The statistics paint a dreary picture. Researchers say they are difficult to track due to inconsistencies in Rheumatoid Arthritis diagnosis, especially across various countries. (See How is Rheumatoid Arthritis Diagnosed?)

Career-ending disability due to RA is still extremely common. Eighty percent of RA-ers say that every aspect of daily life is more difficult. One-third of RA-ers no longer do the same work within 5 years of diagnosis. After 10 to twenty years, half are considered severely disabled. Two-thirds say they have difficulty getting out of bed. And one-third cannot get dressed on a hard Rheumatoid Arthritis day. (Some stats quoted here on About.com.)

Fatigue

I call RA fatigue the Kryptonite of Rheumatoid Arthritis. RA fatigue incorporates low energy, physical weakness, and rapid exhaustion all in one fine package. If you read What Causes the Fatigue of Rheumatoid Arthritis, you know that studies show that modern Biologic treatments for Rheumatoid Arthritis do reduce fatigue for many RA-ers.

Relationships

There is a frustration in not being able to describe to others the pain, weakness, and disability of RA. Sometimes they are too intense for non-RAers to imagine. This communication problem leads to improper expectations. And worse, the Rheumatoid Arthritis that causes all of these problems is invisible – unless you have x-ray vision.

All of this can bring confusion and disappointment. Difficulty in understanding how grueling Rheumatoid Arthritis is can create a barrier between people. Well people don’t want to hear about pain and illness all of the time; and RA-ers don’t like being misunderstood.

Every day, RA-ers communicate to me their aggravation that people “just don’t get it.” The strain this places on relationships is obvious. Loneliness is too often the result.

Outlook

Rheumatoid arthritis is a progressive disease. So RA-ers know that life will probably get harder instead of easier. Eighty-one percent of us report feeling frustrated that we are no longer in control of life.

Then again, Rheumatoid Arthritis can sometimes have remissions. And some patients with less severe RA obtain good control with drugs. Alternatively, the destruction of RA can be answered with astonishing surgical techniques. So, the forecast of the future is not necessarily bleak. But, it is still rather foggy.

Is this the best time in history to have RA? Tomorrow, in part 2, we look at QUANTITY of life: Mortality and Rheumatoid Arthritis

Can I Delay Treatment for Rheumatoid Arthritis? part 2

Is it safe to delay treating Rheumatoid Arthritis?

If you re-phrase this question six different ways, and search using Google, you will get a lot of good information about why Rheumatoid Arthritis treatment should NOT be delayed. So, I guess that’s the Google-vote. But most of us do not make decisions based upon a Google-vote. We need more rationale than that.

So, why do some delay treatment for Rheumatoid Arthritis? Let’s examine a few reasons.

Fear:

The side effects to RA medications are startling to behold. Perhaps there is fear that the medication will be worse that the Rheumatoid Arthritis. There may also be a misconception that RA medications are all addicting and will cause lifelong dependence.

Most of the time, the best therapy for fear is information. For example, medicines prescribed for disease control (DMARDs) for RA are not considered addictive. And learning about what Rheumatoid Arthritis can do to a body goes a long way toward making the medicines sound downright safe.

Of course they are not completely safe; but neither is driving a car, walking across the street, or eating rare meat. However, all of them are safer that living with untreated Rheumatoid Arthritis.

Uncertainty:

Not knowing what to do can make any problem worse. So much is unknown when it comes to Rheumatoid Arthritis. We don’t know what causes it. And we can’t say why some fare so much better than others.

However, evidence is piling up that early and aggressive treatment of Rheumatoid Arthritis may be our only hope to reduce future disability. Listen to the doctors at the University of Kansas Hospital: “Early treatment may significantly control the course of the disease…” And NIH says: “Early, aggressive treatment for RA can delay joint destruction.”

No, they can’t tell you why you have RA. They can’t tell you how bad it will get. The cause and the cure are both uncertain. The only thing that is certain is that studies have shown that for some RA-ers, early treatment can slow damage.

Remitting RA:

Rheumatoid Arthritis that remits is more difficult to track. For those who have remitting RA, the disease can lessen at times so that life seems normal. Palindromic Rheumatism (or Palindromic RA) can remit for even long periods. One can go crazy trying to figure out what brings on flares or remissions. However, if Rheumatoid Arthritis symptoms are recurrent, it is important to get thorough exams to determine whether damage is occurring.

Hopelessness:

Sometimes it seems like relief is an impossible dream. Going on the RA meds is akin to wrestling with windmills. Even the folks we know who are using DMARDs have not gotten well. Why take all the risks if it might not even help?

That’s a really tough one. There is NO promise that the medicines will even work! But, some things are sure: Hope can grow stronger if we work at it. And it is worth the trouble because God has a purpose for each of us. Your loved ones need you to survive. Every life is worth living.

Denial:

As I explained in yesterday’s post, it is actually very easy to convince yourself that you are not sick enough to need treatment. Of course, nobody really wants to believe that they are sick enough to need chemotherapy. Actually, you can get a lot of help in this: others would also prefer to believe that you are not that sick.

Denial is useful as a mechanism for managing crises. It is an excellent temporary help in times of tragedy. However, it tends to wear out its welcome… When the time has come to deal with a problem, we might have to throw denial out like bad food.

More?

Maybe you know other reasons. Please use the comment box to tell us about them.

Also Recommended:
What Makes Diagnosing RA So Difficult?
How Is RA Diagnosed?
Hope in a Spray Can

Remember: 60-2-3. That’s 60%; 2 years; 3 months
“Studies have shown that damage to joints occurs in 60% of people with rheumatoid arthritis within 2 years. Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a …rheumatologist within the first 3 months after symptoms appear. As soon as rheumatoid arthritis is diagnosed, early treatment includes medications known as …DMARDs.” (University of Kansas Hospital)

How is Rheumatoid Arthritis Diagnosed? Part 1

Why is it so hard to diagnose RA?

Rheumatoid Arthritis is a mystery even to doctors. The diagnosis is a subjective process even though many of the symptoms are clearly measurable. Every book or article I read says that it is difficult to diagnose. Why?

It is only in recent years this disease actually has a name and any identity at all. Rheumatoid Arthritis has never had a single definitive test to prove diagnosis. It was in 1987 that the American College of Rheumatology (ACR) adopted 7 guidelines, created by a committee, which are used in the clinical diagnosis of RA.

While there are seven criteria on the list, rheumatologists may diagnose RA if only four of them are present. They include symmetrical presentation of arthritis; arthritis of the fingers, wrists and hands; positive Rheumatoid factor blood test; morning stiffness; rheumatoid nodules; arthritis in 3 or more places; and radiographic (X-ray) evidence of changes.

Often, clinical guidelines use words like “suggests” or “indicates” diagnosis of Rheumatoid Arthritis. Doctors use these guidelines to decide whether a patient has Rheumatoid Arthritis. Two doctors can decide that a particular patient does have RA even if the criteria are not precisely satisfied.

Why do so many people with Rheumatoid Arthritis go months, and even years before getting an RA diagnosis? I recently met a lady who went to 13 different doctors (including several rheumatologists, I believe!) before finding her RA diagnosis. And, why are so many told they are “atypical”? Why do I meet countless precious people who have RA and are being treated for RA, but do not fit the mold of the 7 guidelines?

I am starting to wonder whether the ACR’s RA mold is getting moldy. It’s getting old already. Things have come a long way since 1987. Consider two things:

First, Medical Advancements:

There are medical tools which were not yet widely available in 1987. There are ultrasound and MRI machines, even small portable ones which can view the inside of the joints. There are also improved CAT scans and bone density scans.

The old Rheumatoid factor (Rf) test was only about 75 % accurate. Many people who are diagnosed with RA do not have a positive Rf. However, a newer test measures another antibody which is present in rheumatoid diseases called the cyclic citrulline-containing peptide. The anti-CCP test is about 90% accurate. There are other antibodies, too. And just recently, the possibility of another new test came over the horizon when another piece to the RA puzzle was found.

There are many other examples of advancements, but these are some which are glaringly obvious and can be understood even by laymen.

Second, the internet:

With the advent of the net, there is a vast amount of evidence about the specific symptoms and indicators of Rheumatoid Arthritis. I know there are a million quacky wacky websites out there. Not that! There are a substantial number of solid legitimate blogs and forums where patients have been documenting the details of their RA. Researchers never had such vast records available to compare and analyze.

A report by the Centers for Disease Control (CDC) found an average of 36 weeks between onset and diagnosis of Rheumatoid Arthritis. That’s nine months. Again, why? They state that “early disease recognition is challenging as only half of those who eventually develop RA initially present with features specific to the condition.”

Do they think there is something wrong with the way that “patients present” or with the diagnostic criteria? Why aren’t the “features with which they present” being considered specific to the condition? Remember, these are not just folks who they bumped into in the elevator; these are patients “who eventually develop RA.” What did they have during the first nine months before the RA diagnosis? Were they RA WANNABES?

The causes of Rheumatoid Arthritis are not known. The cure is not known. Accurate and prompt diagnosis remains elusive. Maybe the patients are correct and the criteria are inadequate.

A Summer Read for Rheumatoid Arthritis Warriors! part 3

An American History story about character and disability, part 3

A few years ago, I took my little home school on a field trip. We spent a day at Arlington National Cemetery. And the next day, we traveled to Gettysburg to stay with my daughter’s godmother. In preparation for the trip, I read a few Lee biographies. That has been an extraordinary component of our school – we could read about a person or a place, and then go check it out for ourselves. The Lees were extra special to us since my husband - and children - are related to them.

During the long car ride to Virginia, I devoured the fascinating Lee stories. I was extremely moved by Ann’s invalidism and her son’s devotion. I kept interrupting whatever the kids were reading to relate another amazing tidbit.

The accounts that I read were so old that the only word used to describe Ann was “invalid.” Isn’t that what it is when you give a wrong credit card number: in-valid. How can a person be invalid? I know the author was only using the language of his day, but still, are some people valid and others in-valid? It sounded dreadful.

Fast forward twenty months. Another field trip to Virginia. More Lee stories in the car ride. But this time, they read like mystery stories to me. What is the mysterious illness that plagued these precious ladies? I weighed every word and examined every clue. I announce my theory to my captive audience in the car.

At Lexington, we toured Washington and Lee University, where the Lees served after the War and where they are buried. There are museums and memorials to them. I remember standing in the doorway to the chapel and listening to a guide tell the story of Mary Custis Lee.

She said that Mary suffered from a painful disease. I could barely do it another moment, but I wanted to stand where I was - next to the guide. She said that Mary was disabled by Rheumatoid Arthritis. I sucked air and whispered “I knew it!” She pointed out the doorway across a yard. She showed us where they used to lift Mary down into a hot spring to occasionally relieve her pain.

The tour guide had admitted what I knew had to be the truth. She was the first person I heard use that term with regard to Mary. It all made sense to me. I was just beginning treatment for my own RA. I knew what it was that I saw in the stories just as Robert knew when he saw Mary’s plight.

Even the many pregnancies made sense now. My rheumatologist had explained to me that pregnancy was the only reprieve for women in former days. Rheumatoid Arthritis usually remits during pregnancy. So, many women would become pregnant eagerly. It makes it easier to understand how and why they continued to have more children with the added burden of the illness.

Of course Ann and Mary Lee had much in common: They were the closest thing to royalty that Americans have. They were both educated and generous ladies. They had married soldiers. They had each enjoyed the devotion of Robert. They suffered immensely from Rheumatoid Arthritis without prednisone, Enbrel, or even aspirin.

But there is one thing more: As I stood looking after the place where Mary would be humbly lowered into warm water to gain some temporary relief, I admired her. And think of Ann raising five children with no money and no husband and a handicapped daughter. Each was a Warrior. They never were defeated; they did not yield to fear or become dis-couraged. And they never became bitter. They agreed with Job that we must accept the adversity in life as well as the good that God sends.

Summer Read for Rheumatoid Arthritis Warriors, part 2

An American History Story, continued...

The lady aristocrat who was raised in such privilege was Ann Hill Carter, granddaughter of the colonial magnate of Virginia “King Carter.” The washed up soldier she married was Henry “Lighthorse Harry” Lee of Revolutionary War fame. Their fifth child was Robert Edward Lee. The Academy where he excelled was West Point.

Less than two years after the death of his mother, Robert E. Lee married socialite Mary Anna Randolph Custis. All of the tragedies of his parents were behind him and the young couple looked forward to life with faith and optimism. They spent much of their first years living with her parents at Arlington, the mansion Mary’s father had built as a memorial to his adopted father, George Washington.

Since Robert was in the military, he was frequently relocated. Sometimes Mary, or “May” as he called her, went with him. And sometimes, she remained with family. She was very devoted to family.

However, Mary was also an educated lady who studied several languages and read the newspaper every day. She was socially aware and strongly opposed slavery. She followed her mother’s footsteps in working to educate black children wherever she was stationed.

Mary was a gifted artist. Some of her paintings are displayed today at Arlington. She actually had many talents, but she also had been somewhat spoiled as the only surviving child of her illustrious parents. It was difficult for her to adjust to the hard work of running a household on her own – and one with 7 children and a husband who was frequently absent.

However, Mary was extremely industrious and generous. She found ways to reach out to anyone in need. When her husband was working as a superintendent at his alma mater West Point, she looked out for the young cadets. In later years, during the Civil War, she organized groups to knit hundreds of pairs of socks to send to soldiers. She always found needs that she could somehow minister to.

But Mary’s life had taken an unexpected turn. Shortly after the birth of her second child, Mary became gravely ill. She was plagued with the pain, swelling, and stiffness of what we call today Rheumatoid Arthritis.

She was never able to walk properly again. Periodically, her health would improve. However, the symptoms would return and her condition would worsen. (It was the same pattern of flares and remissions which is familiar to many dear readers of this blog.)

In 1857, Lee returned home from an assignment in Texas in response to an urgent message. His famous father in law, George Washington Parke Custis, had died and Lee was needed to execute the estate. When he arrived at Arlington, he was shocked to see for himself the dramatic changes in his delicate bride.

People said of Lee: Never was a man so changed and so saddened. Robert had seen this before. He recognized that Mary’s condition mirrored that of his beloved mother Ann. He knew what Mary’s future held. Lee grieved: I have no enjoyment in life now but what I derive from my children.

Robert was no pessimist. However, he had intimate knowledge of the suffering which his beloved would endure. Together they often went to visit the “curing waters” of the mineral springs of Virginia. They lived out their lives in the midst of the painful Rheumatism. Mary moved about with great difficulty, using wheel chairs and canes.

Mary had five more children and continued her life of service to others. The cheerful way she faced her trials impacted many lives. Although frequently bedridden, she believed that every child of God is useful to him, saying, “There is no such thing as an indolent Christian!”

Her response to her disability even influenced Mary’s legendary husband. Her example was one of constant submission to the will of God. She relied upon God’s arms to bear her up in her constant pain and frequent deprivation of two wars. She wrote,

“I do not improve at all in walking & have to be lifted in & out of carriage by 2 men & the physicians do not give me hope that I shall be any better – sad it is – not to renounce all hope. I can only pray & strive for submission to God’s holy will.”

Lee biographers have acknowledged the influence of both Ann and Mary upon his character. They taught him how to practice contentment in the face of grave disappointment. Douglas S. Freeman stated, “The man who was to order Pickett’s charge at Gettysburg got part of his preparation for war by nursing sick women.”

Much of our mystery is revealed today, yet part remains. What connection is there between the Lee story and yours truly?

A Summer Read for Rheumatoid Arthritis Warriors!

American History Story About Character and Disability, part 1

Once upon a time there was a beautiful heiress. Her name was Ann. To the consternation of Ann’s father, she married a poor widower who had once been a soldier. However, the dashing soldier also had aristocratic roots. In fact, he later became the governor of his state.

They did not live happily ever after. Misfortune and adversity plagued the young family. There were illnesses, bad investments, and betrayals. Sometimes, Ann’s husband became reckless in his attempt to regain some of his wealth. Once, he even served time in debtor’s prison.

Finally, outrageous circumstances caused Ann to be left to raise her children alone. Her husband was injured by a political mob and maimed for life as a new war broke out nearby the family’s home. Desperately, he would search out medical relief in the Caribbean. The President of the United States helped to arrange assistance for him.

Ann, who had been brought up in wealth and comfort, was left with children to raise and educate and bills which could not be paid. They had little money, but plenty of extended family to help them. Ann had given birth to six children in all. Her favorite was a son, her fifth child.

The son was about six years old the last time he saw his famous father. The father died when the boy was eleven. He inherited his mother’s love of horses and her expertise in handling them. She taught him to read the Bible at her knee.

Although he was skilled at fishing, hunting, and all sports, the lad spent much of his time doing housework and marketing! His mother had become what was called in those days “invalid.” She taught the boy how to manage the house, the property, and the horses for her as she became more and more “disabled,” as we say today.

As the boy grew older, he became even more devoted to his mother. He was able to attend school because of Ann’s family connections. But after classes, he did not play with the other youths. He would hurry home to care for his mother. He never complained about his responsibilities; he even counted it as a joy to entertain her.

Most afternoons, the young man would take Ann for rides through the neighborhood. He would carry her to a carriage and place pillows around her to make her as comfortable as possible. He would fasten the curtains carefully and amuse her as he stuffed newspapers into any cracks which could cause drafts.

It was noticed by all that Ann’s son was “devoted” to her. As her illness progressed, he waited on her like a nurse. He administered her medicines and every comfort that he could find to divert her mind from her pain.

Eventually, the son grew up and left to attend an Academy. His mother’s famous words: How can I ever live without him? He has been son, daughter, and protector – all in all to me.

A friend of the family stated that the boy had learned from his mother at an early age to practice “self denial and self control.” She had faced her adversity with grace. At the Academy, he was graded on character as well as academics; his marks were always close to perfect.

Everyone who ever knew the man said that he retained these virtues throughout his life. But his mother had not only taught him by her words. She had taught him by her neediness. She had found a way to be both mother and father to him. Her life demonstrated to him patience, kindness, and faith.

After he graduated, the man spent the next few months of his life the same way that he had spent his youth: nursing Ann. She had struggled to raise her five surviving children while battling the destructive disease. Now, at only 56, she was dying from it.

Ann’s favorite son administered her medicines and fed her. He read to her and told amusing stories from school. When he could do nothing more, he sat with her as she died.

Stay tuned to Rheumatoid Arthritis Warrior for Part 2 of our Summer Read. Who is this famous family? What will happen to Ann’s virtuous son? NOTE: Some modern versions of this story call Ann’s illness “Rheumatism,” “arthritis,” or Rheumatoid Arthritis.