Love of Challenge and the Rheumatoid Arthritis Speed Limit

RACE YA!

At bedtime, the race is on. As soon as the pajamas are on, my four year-old declares, “Race ya!” He expects to win, but he still wants me to try. I think he wants me to almost win.

Some days, I can oblige. Other days, he protests, “You are too slow!” That’s when I cannot provide the adequate challenge he needs to feel significant.

SOME days, I can actually run to his bed. And I do. And I win. And he cries.

I’m sorry if it seems mean. I just don’t want him to see me as lazy… There’s no need to wonder where he gets his love of challenge.

Lately, I feel just like my son. The race is on! There is so much I want to get done.

I feel like it all needs to be done “yesterday.” I love the challenge of it all. But, I’d like to “win,” too.

Winning the race is getting it all done. Crossing stuff off the list. Getting on top of it all.

There is the problem of the speed limit enforced by RA. Mostly, I think I am doing so well “under the circumstances.”I JUST DON’T WANT TO STAY UNDER THEM. It’s uncomfortable under there.

At least I am enjoying the challenge.

Weathering Rheumatoid Arthritis

I love brisk frosty mornings. They seem to make you step brighter. I feel like I can do anything on a day that begins that way.

I love cool crispy evenings when you can wear soft fuzzy socks. They say comfort is possible; the world is a cozy place.

I love wind. And clouds. They speak of movement, freedom, transformation.

I love all kinds of storms because they are unpredictable and strong. They remind me that the world is powerful and thrilling.

Snow is one of my favorite things on the earth. Snowflakes are evidence that God delights in making us each unique. And that He renews all things; a little coat of snow makes the world entirely new!

It’s funny how anything – even the weather – can influence our attitude. We have expectations, whatever they are, and we are disappointed when they are not met: Rainouts are disturbing.

And a diagnosis of Rheumatoid Arthritis can be seen as an immense rainout.

What we need is a plan to weather the storm. What will we do if things get worse? How will we endure living with Rheumatoid Arthritis for a few more decades?

It is one thing to tolerate bad circumstances. We have all had a time when we had to “stick it out.” That is resignation.

But, it is another thing to actually persevere. That is to continue on with an attitude of persistence and resilience. That is the spirit of survival that is so prevalent in the breast cancer awareness movement.

It is toughness, but it is more than that. What I am describing is buoyancy. Weather buoys are built to weather the weather. Yes, they are bounced around, but they still send out signals defiantly. Our goal is to be like that.

My best friend is always reminding me, “You are the beach ball.” Yes, I get pushed under, but I am buoyant. So I push back up. You do get wet in the storm, but you are not shipwrecked. You don’t stay down.

As RA-ers, most of our days are filled with difficulties. Sometimes, we find shelter in God’s love. Other times, we huddle together and weather the weather with one another.

Nevertheless, I am praying for lots more of those days that I call “no weather” days. You know the kind of day? You can do whatever you feel like doing and you don’t sweat it.

There is no season such delight can bring
As summer, autumn, winter and the spring. ~William Browne

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)

Can I Delay Treatment for Rheumatoid Arthritis? part 1

That depends, can an ostrich heal thyroid disease?

One of the things that makes us warriors is our desire to survive. We fight Rheumatoid Arthritis because we want to outlive every scheme which RA has in store for us. We are determined to live the fullest and longest and happiest life that we can! That is what drives me to write this blog.

Recent posts have examined the role of doctors in enabling RA-ers to get proper diagnosis and begin treatment. Doctors do have a critical role. However, so do patients.

Can we talk about delaying treatment for Rheumatoid Arthritis intentionally?

If you or someone you love is delaying treatment, I hope something I say will help you to consider the decision carefully. First, let me tell you a story…

When I was 15 years old, I became ill with a type of autoimmune thyroiditis. It causes acute swings of thyroid hormone in the bloodstream. Alternately, it is extremely low or extremely high.

Lots of entertaining trips to hospitals to meet doctors with cool names finally brought an answer. Careful monitoring of medication finally brought stabilization. However, when you are young, you are invincible.

You have probably guessed it by now – I did go off the reservation, medically speaking. I was convinced that I could be healthier without medication in my body. I would remain healthy by dedication – mainly eating well, clean living, and exercising. I was determined.

I did not understand all that the thyroid does for basic existence. I did not understand how the disease worked either. For example, there were remissions or lulls in the activity of the disease during which I would seem perfectly fine.

But I was not fine. I ignored symptoms because I did not want to be a sick person, dependent upon medication for the rest of my life. I also did not like the look on people’s faces when I tried to tell them about thyroid disease.

Eventually, I broke down and saw an endocrinologist when I wanted to have a baby. I wanted to avoid a miscarriage, which is common with thyroid disorders. Until then, I had carefully ignored symptoms and skillfully managed them since they had not been severe.

However, the doc did not deem my story credible and he proclaimed my thyroid to be fine. I really wanted to hear that, so I tried to believe it. Maybe the military doctors at Bethesda Navy Medical Center and Walter Reed Army Hospital were all wrong. Only the President of the United States is treated there – probably inferior doctors…

The next ten years brought me 3 children and a few miscarriages in between. By now, it was fear and lack of finances which motivated my denial more than stubbornness. Then, my fourth child was born.

I never regained strength after the birth. Instead, I slipped more every day. Friends helped me a great deal. And I made my most valiant effort to be healed with nutrition. But even healthy food does not contain thyroid hormone! And no vitamin will make your body produce it!

Over months, I became extremely weak. All of this determination that I have - I was using every last bit of it to do the bare minimum to take care of my kids. Some people close to me were telling me to snap out of it. If resolve could cure, I would have been fine.

I am including very few details here of the hell of that year. My thinking became so slow that I could not read. I was trying to read a stack of thyroid abstracts that my dad had printed out. I sat for hours every night with a highlighter. By the time I would finish a line, I would have forgotten the previous one and go back.

Finally, I was convinced my illness had to be thyroid and I got myself to the health department – about an hour from home. I sat for hours in the hallway with my 4 little ones. I was still determined as ever, just determined to get treated this time.

My TSH was 478 by then - normal is about 2. (They put it in the record books!)I remember them telling me I should have been in a coma and marveling that I had been driving. My organs had begun to shut down. My cholesterol was 240.

After about a year, I recovered fully.

Some things changed after that:

1) I know an awful lot about thyroid topics now.

2) I know I had looked at the medicine the wrong way. I am not sad that I will need it for the rest of my life. I am glad that I have it so that I CAN HAVE THE REST OF MY LIFE.

My mother used to tell me never to be an ostrich. An ostrich buries its head in the sand when danger is near. That way the danger is gone. Not.

Tomorrow’s question: Should we wait to treat Rheumatoid Arthritis?

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

I am so lucky to know a dear lady who sends me letters of encouragement about this blog. She is the widow of a man who lived with RA. I always wish everyone had an opportunity to hear some of her clever and uplifting words, so today I am sharing some of them with you.

I give you my friend Dorothy, one of the funniest senior saints in the world. I hope you can hear her smile.

You know what Rheumatoid Arthritis is because your husband Gil had it, right? I know what it is and every effort you put forth is sometimes like taking money out of the bank. It is NOT like, "If you would just exercise those joints, all this would go away."

How did his RA start?

He was also a florist. It became difficult for him to even cut the stems. That is when we noticed the decline, which got severe in a short time. Most noticeable PAIN was in his hands. That is why I cringe when I think of squeezing your hand that day, but within a few months he began to have difficulty walking. He ultimately had to use a wheel chair. Remember that he was also dealing with the COPD which is probably unrelated, but compounded the RA issue.

How did people react?

ABSOLUTELY MAGNIFICENTLY! They were compassionate, supportive, loving. When Gil could no longer leave the house, they came to see him. He was so active in the church. The RA was an added burden that did really COMPOUND his original problems, causing the additional pains. And, ultimately crippled him.

Do you think you understood?

Even though I saw my husband suffer so much to the end, I am sure there is something missing in MY comprehension of exactly how it is because I personally have not endured the physical suffering. Only the pain of seeing someone you love suffer. And there is the impotence you feel in watching and not being able to help. But, it is still not the same as being the victim, of course.

Thought for the day: Never criticize a person until you have walked a mile in their shoes. That way, when you criticize them, you are a mile away from them… and you have their shoes.

People just don't have a real sense of the depth to which it reaches and the attack it renders on the body.

Do you think anyone else understood?

It is difficult to relate to RA unless you have it. I agree that a person who has not experienced RA cannot have that level of understanding & compassion. Somehow, "I know how you feel" sounds like a platitude. And you want to shout out HOW IN THE H... CAN YOU POSSIBLE KNOW HOW I FEEL? Can YOU move your arms today without screaming? Can you pick up a bag of groceries? Can you carry a pot to the stove? Can you cut a flower stem to make an arrangement for your church? Do you PRAY no one will squeeze your hand when you greet them? Then how can you know how I feel?

Do you read the blog?

Sometimes I think I am a SPY because I do not have RA. But you are such a beautiful crusader for this cause that I feel compassionate and enlightened by each message I read. HEY, I loved your "compassion" message to Mrs. Smart a_ _, uh Toes.

SO often when I read the joyfulness, then also the sadness, in your messages, I realize that in addition to the agony of having to live each day with a crippling disease that was in charge of everything Gil did - that controlled his entire body no matter how optimistic he tried to be. It was frustrating to see that even those close to him, didn't have a clue. Maybe even myself.

What was the hardest part?

He did not want PITY... just understanding. As I think you do also. It is LONELY out there when you are the only one who understands anything. And especially something which controls a MAJOR part of your life. No, he DEFINETELY did not want sympathy, but, yes... understanding. Here was a man who sewed all the drops and costumes for VBS, made CHOIR ROBES, did all the flowers for the altar. He bought them wholesale – RAW - and he cut them, arranged them, and carried them to church.

Later, we had to get them for him... he would try to tell us where to cut because his hands could not manage to cut through the hard stems. And later, we even had him tell us where he wanted them to be placed in the arrangement. He would not give it up. When he was wheelchair bound, he would have us take him to the church hall so he could instruct the others to make the VBS stuff.

So, if he had a GOOD DAY, a well meaning friend would say something stupid, like, "Well, I bet you are glad THAT crud is over" or like "Glad you are your old self again." They did not have a clue.

Maybe when YOU hear stupid stuff like the lady at the beach, it is NOT that you want them to feel SORRY for you. You just want them to UNDERSTAND. You want them to be EDUCATED about RA.

You, Mrs., have 5 kids at home! You are NOT a "gimmee stuff princess.” You do NOT want sympathy - just understanding as Gil did.

He just wanted it to be OK if he was not the same as before and if he had to back off some things. Rather than, "I guess you are tired of doing the flowers... or the VBS... or anything." Like he was glad to get rid of it. He HATED to give up ANYTHING.

What did you wish people knew?

Adding to that, I believe, is the frustration of the cavalier attitude and responses of those with NO CLUE where RA has taken a person. The road it has forced you to travel and I believe THAT is the - well, maybe even hurtful part. You shaved so "you must be all BETTER" as if a miraculous cure had taken place. Like when we get over a COLD, and feel great now. They never knew how laborious it was for him to shave, as it may be for you to wash and fix your hair, then hear, "OH, you did your hair. I am so glad you are all better."

You have been a big help to me by sharing so much about Gil.

Thank you, Kelly! Thank you for being transparent in this. I am transparent about my Life, my faith… everything except my health. I am always "FINE" … "GREAT,” etc. You make me realize that sometimes it is OK to say, when you responding to a friend, to someone who really cares, "I feel terrible", "I hurt", "I am having trouble breathing today."

Thank you, Dorothy, and I do feel like you understand.

That's why my prayer for you is constant: That God fills you with His peace and His strength so that each time you go through a tunnel, you can SEE His beacon lighting the way for you, leading you back to the mountain top. I somewhat love you, you know.

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.

The Controlled Burn Strategy of Disease Control for RA

How Rheumatoid Arthritis Medicines Work Like a Controlled Burn

Here in Central Florida, wildfires are a regular problem. Sometimes, it rains down cinders when the fires are miles away. Creepy until you get used to it.

However, I have seen several fires in my own neighborhood that were out of control. One season, we got used to going to sleep with the helicopters a mile behind our house “keeping an eye” on the fire for us. And last year, the fire came right up to my friend’s yard. Green on her side of the fence - black on the other. The firemen flooded the property line to protect her property.

The fires cannot be prevented. There is fuel. And there is heat. And there is a long dry season. So, there will be fires.

Instead, there is the strategy called “controlled burn.” The forestry service comes in and sets fires on purpose. But they do it for a good reason: they burn up some of the would-be fuel, hoping to prevent an “uncontrolled” flair later. Once, they burned right behind my house. It seemed like the swing set would catch fire.

Yesterday, when I did my shots, I thought how much they are like a controlled burn. My leg undoubtedly feels like it’s on fire. But that’s actually not my point.

It’s just that I’m doing something that appears to be harmful –but for a good reason. It is destructive. At least to the immune cells that die, it is. But, it’s for a good reason. The hope is to prevent an inferno of the Rheumatoid Arthritis through my entire body.

I have to put the methotrexate needle deep into the quad muscle. And sometimes, it rebels. There are spasms and pain for days. This week, I got new spasms on the left leg and the right leg is still injured from last week. (This is all on top of the site reactions from the Enbrel.)

But this is not the real danger. The shots and the side effects are merely a nuisance compared to the dangers of Rheumatoid Arthritis. That is like the wildfire: a menace which is difficult to get under control. And which produces irreparable damage.

Disease modifying medications (DMARDs) are the best thing there is today to put water between you and the RA. They are creepy until you get used to it, but the goal is to keep the green on your side of the fence. It beats the helicopters. They can be really loud.

The Invisible World of Rheumatoid Arthritis Speaks

Bonus: What is gray and lights up? An electric elephant.

Aren’t you amazed at the explosion of online activity related to Rheumatoid Arthritis? Of course the spammers have caught on, too. But in just the last few months, the number of genuine RA blogs has mushroomed. Every search I run turns up something new.

But it’s not just numbers. There has been a change on another level, too. You can hear fresh energy in addition to hearing new voices.

Our movement is not unified by any organization. There is not one single message, but many distinct topics and styles. So what is it that gives Rheumatoid Arthritis patients a sense of cohesiveness?

I believe that there is a noble goal, a thread which ties us all together. It is this passionate cry: We will be heard.

We have all decided that we must be heard.

This interest is no fad or hobby like so many blogs. For us, this is about our lives. We do not write or network as a mere diversion. We are putting our hoarse voices together so that we can be heard. Period.

I want to be the first to forcefully state that no matter how many there are with this message, there are not too many. Every day that this field is expanding, we are closer to an understanding of this complicated disease and then a cure. Every clear and honest voice is a contribution to that goal.

Rheumatoid Arthritis has been called an invisible illness. Our world is different from the non-RA world. And sometimes they are not even sure RA is real. What do they understand about our reality?

It is as if we are in a world like the one which Horton saved on the pink clover. I want to be like Horton, my favorite elephant. I want to encourage every voice to speak up until we are heard and the world of Rheumatoid Arthritis is truly recognized as Whoville was in the end. Each of our voices is needed.

Like the Mayor said in the story: “We’ve GOT to make noises in greater amounts! So, open your mouth, lad! For every voice counts!”

Memorial Day Tribute from RA Warrior

Courage in the blood.

Today we remember the American servicemen who gave up their lives in order to protect our lives. We remember in humility and gratitude because we enjoy so much at their expense. We realize that we could probably not do what they have done in our behalf – and in our name - as Americans.

I am mindful of numerous generations in my own family which served in the various armed forces – all the way back to the American Revolution. I cannot thank them for what they did for me. So, I thank God for them and for giving them the courage to do what they did – to fight and die to make and keep us a free nation.

Americans have a lot of national pride. And lately that’s become a bit controversial. But, what is the source of that pride? In part, it is the memory of these Soldiers, Sailors, Airmen, and Marines. We swell with pride on their behalf whenever we remember them. We are proud of what they did and who they were.

They obviously believed that America and her ideals were worth preserving. Their lives and deaths testified to that. And the testimony that they left us is quite compelling.

My own dad was a United States Marine. He helped instill in me a love for my country and for the military. Even as a child, I was awed by the honor, discipline, and commitment of those men and women. I have always wanted to be like them.

I hope that I will be able to fight whatever battles that God gives to me with that same guts and courage as a Marine. After all, that fortitude is inside of my blood as much as the RA is. That mental toughness that I admire is part of my inheritance, too.

Rheumatoid Arthritis left my glass half-full

I knew the glass was half-full.

Two months ago, I could do about half of what I could do before RA. The dr.s kept saying I should be getting even better. I really wanted that, too. The doses of my meds were as high as they could go: Humira weekly (that's a double dose); and methotrexate 25mcg by injection (much more is absorbed by injection). Maxed out at those, my functionality was at about 50%.

So, when the dr. said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the dr. and two pharmacists: Are we essentially cutting my medicine in half? They all said, "Not really."

Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had RA without these strong drugs to help them survive it. It really does help me remain hopeful - not to mention how that helps me stick myself.

Well hopefulness aside, it's been over a month. I am 5 shots into the Enbrel regimen, and it's not looking good. Every week is worse. I am productive only about 2-3 days per week now - sort of.

There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren's syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.

There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I'm falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.

Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to knowing the unseen damage that it is causing within my tendons and joints and my eyes and my nerves.

But that's not the worst. The worst thing about my half-full glass having spilled is the time that is gone. Calendar pages fly by and my life is going on without me. Ouch.

I want my half-full glass back. And next time, I will put a sippy cup lid on it.