Tuesday, June 30, 2009

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?

Monday, June 29, 2009

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.

Sunday, June 28, 2009

What is Palindromic Rheumatism?

How many kinds of Rheumatoid Arthritis are there Anyway?
Nobody knows for sure, but the more you learn, the weirder it seems. Here is a type of RA which you may not know about. It is rarer than the four general courses of Rheumatoid Arthritis which are in our cute chart.

The word “palindromic” comes from two Greek words. (Believe It Or Not: I do read Greek, well ancient Koine Greek anyway. And I do still use a lexicon to help me. Well, back to our program…) Palin is from a word that means again. And, dromos is from a word that means run. So a palindrome runs both ways, like the words “ewe” and “eye.”

Palindromic Rheumatism (PR) or Palindromic RA starts and stops spontaneously. It is a periodic arthritis. It can affect a few joints or a single joint at a time. It usually last only a few days.

The remission period is unpredictable. So the time between attacks varies. However, flares can become more frequent over time.

How is Palindromic Rheumatism like regular Rheumatoid Arthritis?

They are similar in symptoms:

There is pain, inflammation, and disability when a joint is affected. There is of course no known cause or cure. Typically, it affects adults between the ages of 20 and 50. Intriguingly, people with PR often fail the same tests as people with RA – blood tests, that is. The anti-CCP test, the Rheumatoid factor test, and the ESR or sed rate are all used to indicate either RA or PR. However, these blood tests can also be negative in both of these forms of arthritis.

They are similar in treatment:

Palindromic Rheumatism is usually treated with both NSAIDS and steroids (often by injection since few joints are involved). Sometimes DMARDs are prescribed for PA also.

How is Palindromic Rheumatism different from regular Rheumatoid Arthritis?

The most significant difference between Rheumatoid Arthritis and Palindromic Rheumatism is that PR does not usually cause any permanent damage to joints. In part, Palindromic Rheumatism is diagnosed by the absence of radiographic changes (X-rays often give evidence of RA.) And unlike RA, PR is an equal opportunity offender: it attacks both genders equally.

Is Palindromic Rheumatism related to regular Rheumatoid Arthritis?

Maybe. About half of the time, people who have Palindromic Rheumatism develop what I call “full blown” RA. Some doctors have speculated about why tests which are quite specific for Rheumatoid Arthritis also correlate with Palindromic Rheumatism. One theory which I have come across, more than once, is that PR is actually an abortive form of RA. In fact, many who have PR actually take DMARDs in hope of forestalling the onset of RA.

More questions about Palindromic Rheumatism?

Johns Hopkins has a detailed article on PR.
Rissa, the author of the wonderful RA poem, has a new PR group.
In Britain, there is a PR society with some good information about PR.

NOTE: The more I learn, the more obvious it is to me that this disease is one unruly character in all its forms. Thank God we are living in a time when we can be so linked up to one another. Coming soon at R A W: a surprising account from American history.

Friday, June 26, 2009

The UK's "Campaign Against Ignorance" of Rheumatoid Arthritis

Studies show that people do not understand very much about Rheumatoid Arthritis. There are many misconceptions. But, you probably already figured that out on your own.

In the UK, the National Rheumatoid Arthritis Society is trying to change that. They have an entire campaign about it. They call 2009 the “Year of Rheumatoid Arthritis.”

The director of the NRAS said that they were shocked at the “alarming ignorance” about RA. People do not realize what the symptoms are or who gets Rheumatoid Arthritis. They confuse it with Osteoarthritis a.k.a. “regular arthritis” or OA.

There is also confusion about the seriousness of the risks involved in RA, such as heart disease. It is not seen as a systemic disease. People do not recognize how it brings suffering and disability.

When I first heard about this “Year of RA,” I told friends it was the “coolest thing since ice cream.” I even sent a link out in an email. It was proof of what I knew by experience – and it’s always good to be validated.

I told one rheumatologist about the UK campaign and he called it unnecessary. He said, “I don’t think people are confused about RA. They know enough.” At the time, I was too shocked to reply.

But now I realize that it was a clue to our predicament. That same guy did not approve of using the internet to research RA. (I had given him a printout of the UK NRAS campaign article.) I guess he felt like knowledge is dangerous.

He is not worried about whether people understand Rheumatoid Arthritis. He does not encourage patients to learn more about RA. He does not approve of passing around printouts from the internet. He has never read an RA blog. He is ignorant of the ignorance.

But ignorance is not harmless. Ignorance of Rheumatoid Arthritis is especially dangerous. People who are already affected may not be able to receive the support that they need. Others may not receive an early diagnosis due to ignorance of the disease.

The UK campaign also seeks to encourage early treatment of Rheumatoid Arthritis. That is the only key we know which may help curb damage. People do not seek treatment if they do not know what RA symptoms are or that it is a serious life threatening disease.

So here is our situation: most people do not know what RA is. But, we know a lot about it. We need to speak up. We need to declare war on ignorance just like they are in Britain. We cannot wait for the medical professionals to do it for us. Some of them may be satisfied with the status quo.

Thursday, June 25, 2009

It's Ok to Laugh if You Have Rheumatoid Arthritis

Life with RA can still be funny.

Funny things happen every day. I can laugh at almost anything. It just takes a certain perspective.

Sometimes my son doesn’t appreciate my joking so much about the RA. If I make a funny comment about how bad it is, he might look at me pleadingly and say, “Mommmma, that’s not funny!”

“Yes it is,” I told him recently. “It depends on your point of view.” I always talk to my sons in terms of sports analogies, so I talked about how hard it is to tell whether or not someone stepped out of bounds when you are sitting at the other end of the field. Point of view is everything.

My son loves me so much. He was young when I “got sick” with Rheumatoid Arthritis. He wrote me a note about how mad he was at this “evil disease.” I will always cherish that.

He went with me to my very first rheumatologist appointment. But he stayed in the waiting room. He did not see how rudely I was treated. The man typed on a laptop without looking up at me. He never looked at me. He talked while looking down at his keys. Eventually, he and his laptop escorted me to the door.

Of course, we reported the episode to the family in the car on the way home (two of my kids had been in the room with me). Years later, we were laughing about the incident with a friend who also has arthritis (both RA and OA). She had had the exact same negative experience with Dr. Laptop! Neither of us had kept him as a doctor.

My son heard us recall the story and offered to me his reaction: “You know the world could be a lot nicer if doctors would treat people right.” I think my son was calling a penalty on Dr. L. From his view anyway, the man was out of bounds.

And then, my son laughed out loud, “You know what, Momma? I think maybe the guy was playing video games on his laptop the whole time. He just never looked up because he didn’t want to stop. And he did not want you to see what he was really doing.”

We laughed. That’s very amusing, son. See? You can find the funny side to anything. You just have to look for it.

Wednesday, June 24, 2009

Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

There is a difference between disease control and pain control for Rheumatoid Arthritis.

There is no cure for RA. You probably gathered that from yesterday’s blog. However, there are medications which can curb many of the effects of RA by actually cutting it back.

These are the medicines referred to as DMARDs: disease modifying anti-rheumatic drugs. The most common are methotrexate and Plaquenil. There are others, but those are used the most today because they are considered the most safe and effective.

Biologics like Humira, Remicade, and Enbrel are also used to attack the disease. Think of them as a newer subgroup of DMARDs. For a very few people, DMARDs bring on a thorough remission of the Rheumatoid Arthritis.

If you have taken them, though, you know that they are not a cure. They reduce the disease by attacking the immune cells which attack us. But those immune cells continue to multiply and fight back. That’s one reason that I say this is like war.

The disease has its weapons – various B and T cells and the cytokines they produce. And you have yours – medications, nutrition, and various therapies. If we had a cure for Rheumatoid Arthritis, then we could fire that ONE weapon and be done with it. Someday we’ll be there.
Meanwhile, back at the ranch…

We sit in our tank and fire our big DMARD guns at the RA. And we cut the enemy down to a more manageable size. But, then we still have to deal with what I call the “leftovers” – the many symptoms of Rheumatoid Arthritis which are left after the DMARD has worked its magic.

To fight those, we use “extra” medications which include the following:

Steroids, which reduce inflammation quite effectively;

NSAIDs, which also reduce inflammation and pain, but less effectively;

Various other types of pain relievers or pain blockers, including narcotics;

Treatments, therapies, and medications for every other extra-articular symptom of RA such as drops for dry eyes, iron for anemia, heart disease medications, anti-depressants, or medications for relaxation and sleep, yoga, and massage therapy.

As warriors against Rheumatoid Arthritis, we usually try to take as little total medication as we can take – and still be able to live our lives fully. Most RA patients live with lots of “leftover” pain.

Why is that?

There are 3 reasons for this:

1) We want to protect our organs from permanent damage due to long term use of too much medication.

2) We want to avoid side effects of medications, which often compound some symptoms of the RA.

3) We do not like being judged as weak by others because we are dependent upon medication.

It can be hard when you are deciding whether to take more medicine so that you can get out of bed or whether you want to save your stomach, liver, or kidneys. It’s like a game of Risk.

It is war. So we need to be strategic. If we are going to use any “big guns,” then they should be the ones which can do the most damage to the enemy.

If we were shopping, we’d ask: What will give me the most bang for my buck? Usually, that means giving priority to taking whatever combination of DMARDs will provide us the most disease control possible. Then, after that, we decide how we’ll go after the leftovers. We have to - so that we can function.

It’s not a perfect strategy, but it will do until the cavalry comes – with the cure.

Tuesday, June 23, 2009

So Glad Your Rheumatoid Arthritis Is Cured

“I am so glad to see that you are better now.”

I get these comments frequently and I am trying to understand them. Often, it occurs after I have washed my hair. Someone will come up and say, “I am glad to see that you are finally better.”

It is awkward. And so are my reactions.

Should I answer, “Why, yes, isn’t it a miracle”? No, sarcasm is not the right approach.

Should I ask, “Is that your way of saying I look nice today”? No, too rude.

Should I say, “No, I do not feel any better; I just managed to finally wash my hair”? Probably I should, but I don’t.

What I do is try to hide my stunned look. I feel embarrassed for both of us. I wrestle for an appropriate response.

Can I tell you what it feels like I hear being said to me? It sounds something like this: Thank you for not acting sick today… I knew you did not have an incurable disease… You can be alright if you want to be....

If I had actually gotten well in some way, they would be words of comfort and encouragement. But, I have very obviously not gotten better. The comments are said as I struggle to stand or walk. It feels like someone is belittling my suffering.


Here are the cold facts: It is so hard to style my hair now that I only do it a few times a month. Hand, wrist, and shoulder dysfunction make mascara and nail polish a rarity too. My appearance has been one of the casualties of Rheumatoid Arthritis. That’s pretty typical from what I’ve observed.

I am doing my best to survive. I am still a woman and my appearance does matter to me. But living matters more.

I got a phone call last weekend while I was working on my son’s birthday cake. It took me almost all weekend to make the special cake, since my hands kept wearing out. The lady who called is a sweet lady. However, after a few moments she said, “Well, I am glad that you are better now.”

Dead silence. Huh?

It wasn’t my hair. She couldn’t see me, but I had not even brushed my hair that day. I had to save all my strength for the cake. What did she mean? I can only guess. Either she is believing something that she wants to be true or is she sending me a gentle message to stop acting sick. I am still not sure.

I can only say that people have a lot of strange reactions to this misunderstood disease and this is one of the weirdest. Has anything like this ever happened to you?

Monday, June 22, 2009

Rheumatoid Arthritis and Depression

New Depression / RA Study Is Not Surprising
Rheumatoid Arthritis is in the news this week. It seems researchers have found that most RA patients battle depression. The study was done with 75 RA patients, mostly women.

Was anyone surprised? I have never met anyone diagnosed with Rheumatoid Arthritis who did not experience at least some depressing thoughts over the diagnosis. It is a normal reaction to news of such horrifying proportions.

For me, it was like a sentence without a crime. Of course I grieved! I grieved the myriad things which I had planned but would never do. I grieved my future. I grieved the delight of running on the beach. I grieved the pleasure of being able-bodied.

There is a normal grief process with several stages. Psychologists call it the normal grief process for a reason. It is considered healthy to encounter and process grief in each of those ways. And then it can be put aside.

Clinical depression is a more lasting sadness. It is like getting stuck. Often, counseling or even medication is needed to become un-stuck.

That’s the catch. Most things in life tend to cycle around: We have hard times, but they usually pass. Then there are some better days. There is an opportunity during a stronger period to process what has occurred.

But Rheumatoid Arthritis never reads the rule book. It tends to only progress. (That means “get worse.”) So, there may never be a period of lower stress during which you can process the feelings and move forward. Instead, there are often more shocking developments and more losses to grieve as the days go on.

It is pretty difficult to avoid getting stuck. Remember the diagram of the 4 courses of RA? Who could scale those peaks and not fall into a pit?

What can we do?

We can allow ourselves to grieve. We can purposely move through the normal stages, even if we must do it repeatedly (since the onslaughts of the Rheumatoid Arthritis are repeated). We can even welcome the grieving as healthy since we have honestly lost much.

Second, we can connect with others who understand and validate our grief. Often, those close to us do not understand what Rheumatoid Arthritis is or have denial issues about RA. Imagine trying to process grief over the death of a friend while folks are telling you “It’s not so bad.” As if it really is not. As if there had not been a death. That denial would not help the grief process.

Third, we can examine our medications and supplements. The study in the news today found that RA patients who use steroids are more likely to become depressed. Some supplements like Omega fatty acids are good for the RA symptoms and for our brains. Discuss depression with a doctor and consider what might be changed.

Fourth, of course, if we become truly stuck, we should ask for help. Sometimes, as mentioned, this means counseling or medication. At least for a spell.

Once in a Bible study on I Peter, I was taught something that really helped me: Stop being surprised at the trial you are enduring. You have brothers who are enduring the same suffering all around the world.

Peter was referring to persecution. But, it helps so much to stop being surprised at our suffering. No one is surprised at the grief of a cancer patient. Getting diagnosed with Rheumatoid Arthritis is bad news. We ought to grieve.

RA / Depression study: Science Daily article UPI article Pysch central

Sunday, June 21, 2009

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.

Friday, June 19, 2009

What Causes the Fatigue of Rheumatoid Arthritis?

What Causes RA Fatigue?

The fatigue of Rheumatoid Arthritis is a weariness that rest cannot cure. It is tiredness without the benefit of the pleasure of activity. Over 90% of RA patients report fatigue as a clinical symptom. It is counted second only to pain as the greatest difficulty of living with RA.

Where does this weariness come from? What causes us to feel precisely like Superman with Kryptonite pushed in his face? Does anybody know?

Likely, there are multiple contributing factors. Most suspicious-sounding to me are the Cytokines. These are chemicals which some scientists believe cause the fatigue of colds and flu. They are the chemical messengers of the immune system. There are over 150 different kinds of these protein-based molecules.

These chemicals are used by cells as a means of communication. Cells can talk to each other through Cytokines, but in Rheumatoid Arthritis, excess amounts of them are produced and dumped off into the bloodstream. Some theorize that they cause several RA symptoms, including fatigue, anemia, sleep problems, and skeletal muscle shrinkage. (See conquering Rheumatoid Arthritis by Thomas Lee, Ph.D., p.47).

One reason that I’d be willing to blame the Cytokines is that they are reduced by TNF blocking medications (like Enbrel). And guess what results? Yes, usually fatigue is lessened. This is one of the reasons that fatigue is said by some to mirror disease activity or reflect inflammation levels: when medications slow inflammation, fatigue tends to moderate.

The fatigue of Rheumatoid Arthritis is not caused by exertion. However, activity can aggravate it. It sounds like “heads I win; tails you lose.” Rest is critical to surviving life with Rheumatoid Arthritis, but it will not prevent the fatigue.

Funny thing: I have read as many times that depression causes the fatigue as I have read that fatigue causes depression. This is not a fair fight. We have to fight the fatigue while we are in a state of chemically-induced tiredness. And we must fight back depression from an exhausted state. And how could we be anything BUT fatigued when managing such extreme pain levels over an extended time?

Other legitimate theories for explaining the fatigue of RA include anemia and nutritional deficiencies. Red blood cells can be reduced by both the disease and some of its treatments. Similarly, both Rheumatoid Arthritis and many of the medicines prescribed for it tend to curb normal appetite.

I read some abstracts and medical journals to see if anything new is being uncovered about the fatigue of RA. One experiment was done with mice to show how inflammation impacts the brain. Immune cells infiltrate the brain which, according to one reporter, causes the proverbial brain fog.

I don’t know how the mice are coping, but I’m sure hoping for answers – because I am tired being tired. How did Superman ever solve that Kryptonite problem, by the way? It was blue Kryptonite.

Thursday, June 18, 2009

Do Men Get Rheumatoid Arthritis, Too?

Do Guys Get RA Too?

I have always thought how wretched it is that Rheumatoid Arthritis comes along in the prime years of a woman’s life. She’s either chasing small children or climbing a career ladder. It is heartbreaking that at the time when life is the most demanding, she is disabled. There are no accommodations. No excuses. Nothing can rescue her. Pretty sad, huh?

And then one day, I saw a man who had the same RA that I had. My heart just broke. He stood up the way that I do, pushing off with the elbows. Then, he walked like I do: slow and awkward. So that’s why people stare.

I could overhear him talking with the nurse. He has a family. Oh, my gosh. Of course: he has a family to support. They are counting on him to go to work every single day. And he has no accommodations. No excuses. Nothing to rescue him.

Expectations will be difficult for him to meet - except when they are impossible. His disability will be public. There may be shame and humiliation to go along with horror of the RA diagnosis.

Yes, women are more frequently diagnosed with Rheumatoid Arthritis than men – studies say 75-79% of RA-ers are female. And many studies show that women even experience more severe RA than men. But, men are less comfortable asking for help. And there is more shame for them in being weak.

The gender differences are more than skin deep. Men tend to have more involvement with larger joints. They are more likely to have heart damage from RA. But some studies show there may be fewer bone erosions and eye damage. Of course, no man or woman on earth wants to have Rheumatoid Arthritis, regardless of the where it hits.

I would like to recommend two RA blogs which are written from a man’s viewpoint. If you’d like to hear how a man is fighting Rheumatoid Arthritis, check them out: RA Guy and Living With Rheumatoid Arthritis. We will also discuss this on the Rheumatoid Arthritis Warrior Facebook page.

So much for the battle between the sexes! Instead, we’ve got a real battle to fight against Rheumatoid Arthritis. This time, we are on the same side.

Wednesday, June 17, 2009

Rheumatoid Arthritis Warrior's Birthday

One Month Birthday

Today Rheumatoid Arthritis Warrior on Blogger is one month old. This page is more than my blog about Rheumatoid Arthritis. It is my battleground. But it is more than my personal battle. Rheumatoid Arthritis Warrior is a small part of a larger crusade to understand and cure this devastating disease.

It seems like ages ago, in my fourth post, I just blurted out these lofty aspirations. I’ve had some time to eat my words. But, I have instead embraced these as my goals for Rheumatoid Arthritis Warrior:

1) Education of the whole world about what RA really is.

2) Helping a few RA-ers to get more out of their lives.

3) Be one tiny (but bright and shiny) dot in the “connect the dots” puzzle that is finding a cure for Rheumatoid Arthritis.

I am grateful for the encouragement of the first “blog Followers” who have encouraged me and spurred me on. There have also been lots of emails to cheer me on. That is especially valuable to me, since this is my first blog. I jumped in with two feet one Sunday afternoon while watching my son play on the swing set. I just started typing in the little Blogger window…

Actually, I have been researching Rheumatoid Arthritis and preparing for this blog since I learned I had RA. I just did not know it! I kept learning… and thinking… and dealing with one new symptom after another one… until one day, I could not hold it in any more. I think it was like a volcano at that point.

There is obviously momentum building among many with RA. It is more than just an outburst like the old “I’m mad as hell and I’m not going to take this anymore” rant from the 1976 movie “Network.” This is not a passing tantrum: we are working for change. I plan to continue to work in concert with other RA-ers, bloggers, and friends of RA-ers to continue to extend our influence.

This week, Rheumatoid Arthritis Warrior surfaced on Facebook and found out there are plenty of RA-ers and friends of RA-ers there. I hope you will pay a visit to the Facebook page. There will be more fun links, photos and good opportunities to get to know people. You can start a discussion topic or post on the Just Fans Wall. In only four days, we have found 50 Fans. When we get to 1,000 Fans, Rheumatoid Arthritis Warrior will be eligible for a username.

Thank you to all of you who blog on your own: Go get ‘em!

Thank you to all who comment here: You keep the conversation going!

Thank you to all who post links to this site on Facebook or anywhere else.

Thank you to paint.net for cool free photo editing software.
And thank God for friends who encourage me to do crazy things like this.

Tuesday, June 16, 2009

Poem by Friend of Rheumatoid Arthritis Warrior

Counting the Ways Rheumatoid Arthritis Affects My Life...
I am so glad to bring you this treat, a poem written by Rissa. She has Palindromic Rheumatism, a more rare form of RA, which you will read more about here on RA Warrior.

I love the way she gives so many details of life with Rheumatoid Arthritis in so few words. She certainly gives a window where those who don’t have RA can peek into a life with RA:

The terrorizing pain; the unexpected disability; the frustration with numerous medical tests; the ridiculous lack of understanding, even from doctors…

Thank you to Rissa! You give us a lighthearted view of such a heavy-hearted topic. You lift us up today.

Monday, June 15, 2009

The Difference Between Osteoarthtitis and Rheumatoid Arthritis

What is the difference between Osteoarthritis and Rheumatoid Arthritis?

Sometimes, you can show how much you care by disclosing what you know. But, other times, you can show how much you care by acknowledging what you don’t know.

A good friend asked me this week to explain the difference between RA and OA. I was really impressed with her. It took courage to admit she that did not know. Do you know how many people have asked me that? She is the first one.
How many people do I hear ask, “What is Rheumatoid Arthritis anyway?” Very, very few. They usually don’t already know. So, I wonder why not.

Anyway, that is the hand we’re dealt. So here is my short answer:

Think of Osteoarthritis like rust. If you have a favorite tool and you use it a lot, it can start to get rusty and worn. That’s OA. You can sometimes clean it up with chemicals or a salt scrub. That’s like getting arthroscopic surgery done to clean up a knee.

Who does OA strike? Anyone who has used a joint excessively: mainly that means old people and athletes.

RA is more complicated. It would be a bit more like leaving a brand new tool in a bucket of battery acid overnight. It is suddenly ruined. You better buy a new one.

That is the sudden destruction and disability of Rheumatoid Arthritis. Joints and their supporting tissues are suddenly destroyed and left disabled. Little holes in the bone called erosions tell the story of some erosive substance which has eaten away the flesh.

The joints cannot be cleaned out on an outpatient visit. Frequently, joints must just be replaced.

Where does RA strike? Joints, organs, nerves, muscles, tendons, and bones in children, women, and men of all ages, but most frequently between 30 and 50.

Thank you to my friend for asking that very basic question. I am grateful that she gave me permission to share, so I tried to give a simple answer. With a short answer, perhaps more folks will be able to understand.

For a more complete answer, stay tuned to Rheumatoid Arthritis Warrior. I know that my friend will because she cares. I know she cares because she told me what she did not know.

Sunday, June 14, 2009

The Four Courses of Rheumatoid Arthritis, part 2

Once you have looked over the four courses which RA can take, you might wonder, so what?

What difference does it make to my treatment? Do I have any influence on which course my RA will take? That is the 64 million dollar question. And the answer is this: MAYBE.

All of the currently used DMARDs have the goal of altering the course of Rheumatoid Arthritis. There is a lot of controversy over whether that is actually possible. The American College of Rheumatology is urging doctors to use more aggressive treatments than were thought necessary only a few years ago.

The goals of treatment are remission, and then a cure. (Stay tuned to RA Warrior for an upcoming post on remissions of RA.) Meanwhile, what does this mean if you are an RA patient? It means get a doctor who wants to access your disease accurately, and then treat you as aggressively as possible, considering your apparent disease course. Tell him/her you don’t want to ride the Tower of Terror!

If you are on courses 3 or 4, and if the DMARDs scare you, try to learn as much as possible about what RA can do to you. That will scare you more! That will probably help you be ready to go on offense.

There is another aspect of this that is difficult. It is unclear what it is that brings about a remission. Usually, it is spontaneous. It is believed that, for some, it has can be brought about by a combination of DMARD medications.

Spontaneous remission tends to make us superstitious. It comes out of the blue. Whatever supplement was tried last is given credit. It is like the way we wear a lucky shirt because it might help the team win. However, none of these things bring actual remissions to people who are in the fourth group. Hmm… I think a real cure would.

What difference does it make to me? How does it impact my life decisions? Knowing more about RA and what course it may be taking can help you to make many other decisions. It always helps to know what to expect.

Here is a short list of decisions to which RA status is relevant:
* Should I have a baby?
* Should I buy a particular house (with hills, stairs, land…)
* Should I change careers?
* Should I live closer to extended family?

One of the worst things about Rheumatoid Arthritis is that we have no idea where it will hit us next. Knowledge will make it less mysterious. Let’s begin today with the big picture. And we will keep learning from there.

Finally, what difference does it make to each other? Some people with Rheumatoid Arthritis get remissions. Some don’t. Some have more permanent damage that continues during remissions. Some have less. Armed with these facts, we can understand one another better and not assume that everyone is like we are. Oh, and, by the way, I’d wear the lucky shirt, anyway.

Friday, June 12, 2009

The Four Courses of Rheumatoid Arthritis, part 1

What are the four courses of RA? I had hoped that they would be appetizer, salad, entrée, and desert. But turns out they are not.

The names which I made up for them are Cyclone, Roller Coaster, Avalanche, and Tower of Terror. Maybe I live too close to Disney.

Historically speaking, there are four general courses which Rheumatoid Arthritis can take. These are the general patterns which have been observed over many decades. They describe the course that the disease will take. In spite of individual differences, patients generally fit into one of these categories.

On the day that you get your RA diagnosis, no one sends you an IM (instant message) to tell you which course the disease will choose. However, if you know about the typical patterns, you can probably identify yours within a few years. Arming yourself with information is always a good thing.

The first course of Rheumatoid Arthritis is pretty simple to understand. You get RA and then the RA goes away within six months. The pain and stiffness of RA does not lead to permanent damage. Neither the cause of the disease nor its disappearance can be fully explained medically. Only 5 to 10% of all those diagnosed with RA are in this category.

The second course of Rheumatoid Arthritis is more common – typical of about 15% of RA patients. The symptoms of RA come and go periodically. The peaks are commonly called flares. Periods between the flares (called remissions) seem more like life before RA. It becomes possible to exercise or do things that people who are in the midst of Rheumatoid Arthritis anguish cannot do. However, it is completely impossible to predict when the RA will return.

The third course of Rheumatoid Arthritis is the most common. This pattern is very similar to pattern number 2. The same pattern is seen with flares and remissions alternating. The difference is the damage which occurs because there is always some inflammation, even during the lulls. And the flares tend to worsen over the years.

About 75-80% of RA-ers will never have a complete remission. The third and fourth groups make up that number. Group three is the larger one.

Finally, the fourth course of Rheumatoid Arthritis is one in which there are not remissions. The disease only progresses. There is only flare. Or maybe there are no flares. Depends upon your viewpoint, I guess.

Thursday, June 11, 2009

Rheumatoid Arthritis Tips Book Review

This is my review of 250 Tips for Making Life With Arthritis Easier.

Sounds like an amazing book. But actually, if you are an efficient homemaker, you may have heard some of them before – like cooking extra food and freezing the leftovers; and getting family members to participate in meal planning.

Hey, I actually get them to help cook. Or better yet, to take their own turn cooking!
Tips #77 and #65 suggest having someone put your various detergents into smaller, more manageable containers for you. If you have not done this, do it as soon as you are able. It is a good idea. I had to do that a few years ago.

Changing doorknobs or other hardware is another good idea. But, it does require help to do. I like #161 and I had done it right away: replace dishes and cookware that is too heavy.

Another one that I have already adopted is using a jelly-roll type pan underneath of baking dishes which are difficult to handle, like pie pans. Personally, I have taken to avoiding the big oven entirely so that I will not have to bend down and try to lift heavy pans. I bought a large toaster oven and that can do most of my everyday baking. And I have 5 kids!

Other good tips are related to making use of certain tools like utility carts, grabbers, and Lazy Susan turntables. There are a few good suggestions for adapting to life in a wheelchair. Similarly, I like the ones which address being confined to bed.

The most creative tip is #214: avoid any pressure on your feet from bedding. Build up a footboard and lay the covers across it so they will not even touch your feet. Now that would have helped me when my feet were doubled in size from RA swelling. Hope I never need to use it!

My very favorite tip in this book is to get a lightweight vacuum (#71). This is very important unless you have a maid. I searched for a couple of years and finally got the best lightweight vacuum in the world. It is a Simplicity Freedom. I have been through 7 vacuums and now I am have died and gone to vacuum heaven. It is the lightest and the strongest - and it may be my last vacuum. For the first time in over 3 years, I can actually vacuum. But only if I really want to!

For the most part, the book is common sense; we all need that. However, I did find many of the tips had to do with getting organized or cleaning. Maybe this would be good for someone who has issues with feeling organizationally-challenged. My problem centers more on a sudden and extreme disability.

While I feel apologetic to be negative about something done by the Arthritis Foundation, I did not feel that the editors understood what living with RA is like (the book is for both RA and OA). Tip #70 says, “Use permanent marker to mark quart, half-gallon, and gallon lines on your cleaning bucket. The markings will make it easy to mix the right amount of cleaning solutions.” There is NO WAY I am using a cleaning bucket! But that’s me.

There were several other examples of this though, like cleaning out the lint trap of the dryer with a dryer sheet. Ouch.

I was so excited when I saw this book at the library. Finally, I would find out how to make life with Rheumatoid Arthritis come easier. But, not so much. I was mostly disappointed because I could see that the editors did not relate to my actual difficulties in living with RA.

Most of the tips are not specifically appropriate for Rheumatoid Arthritis. And some others are just plain not feasible if you have RA. I recommend that you save money and get the book from the library. You can read it casually while watching a baseball game this summer. Find a few good ideas, and laugh off the rest.

I also have a tip for the Arthritis Foundation: perhaps one day you can update the book using contributions sent in by actual RA patients. And then, have someone with Rheumatoid Arthritis edit the new book, too.

Wednesday, June 10, 2009

Rheumatoid Arthritis Warrior on the Road

A Window into the Life of a Professional Patient

Tuesday morning I watched my clock tick up to the alarm time of 6 a.m. I hated to get out of bed early. It is my comfortable place. In years past, I eagerly shot up at that hour regularly to garden. But no longer.

These days, I don’t want to move because I will find out where it hurts. So I try to absorb the fluffiness of the feathers into myself. I want to save up the comfort and take it with me.

Tuesday, I dragged myself to the kitchen sink to wash my hair. It takes about an hour for me to wash and blow-dry, so I only do it 2 - 3 times per month. But I feel like a princess. Compared to when I remember I doing it every 6 months!

I was out the door at 7:39. Victory - only 5 minutes behind!

Uh-oh. Big problem. I forgot breakfast. No food, no Advil. I forgot my banana. My daughter brought me a Pop-Tart, just in case. Sometimes, it’s like she’s the mom. Too much sugar I tell her; only if I get desperate.

I have my first appointment of the day at 8 a.m. The physical therapist and I discuss a variety of topics and I try to tell her about my new blog. She’s trying to understand what Rheumatoid Arthritis is. I appreciate her effort.

My second appointment has been moved up to 9:45. So, I do the math and figure out there is time for a quick BOGO egg biscuit at McDonald’s. I force myself to eat it so that I can finally take my Advil and vitamins. (It’s just too hot and tasty, you know?)

We shoot down I-95. I’m early to the endocrinologist: just the usual, in and out. Weight, vitals, and meds list. Pulse high from coffee. She laughs about it.

No mention of RA. Is the nurse even curious why I can’t walk right? Weird. I know it’s all in my chart.

The next appointment is at 10:50: the good internist. Once again: weight, vitals, and meds list. Pulse much lower already. We laugh about the coffee again. New blood orders.

There are still errands to run and chores at home, but a load is lifted. I feel free as a bird. I won’t have another day like this one for at least a couple of weeks.

Tuesday, June 9, 2009

Pyramid Approach to Rheumatoid Arthritis Trashed

Pyramid v. Surge

If you’ve read many books or articles on the treatment of Rheumatoid Arthritis, you may have heard of the treatment pyramid. During past decades, this was the general treatment plan for all RA patients (regardless of disease course type).

Here’s a brief summary of what is was like to climb the pyramid:

If you have pain, you use otc NSAIDS. If it gets worse, and you have obvious inflammation, you use prescription NSAIDS. If you come back to the doc asking for something stronger, you get an actual steroid prescription. If you don’t get better after a couple of years, you get some kind of DMARD (disease modifying) prescription. Low dose. If you keep complaining, you may get to add a second DMARD. By now, you may have had a surgery and a steriod injection or two. If you are stubbornly not cured, you may end up eventually on a combination of DMARDS and NSAIDS which hold your symptoms at bay (called a season of remission) – except for when you flare. Of course, the newest medicine available at the top of the pyramid is a Biologic (read Enbrel, etc.) However, by that time, you have lots of irreversible damage.

I feel hopeless just reading that. Who could climb that pyramid without getting hurt?

That was then.

Good news:

The pyramid has been scrapped! In recent years, the ACR (American College of Rheumatology) has begun to recommend inverting the pyramid. They realized that all that time RA patients were in pain, they were also suffering damage. Damage from day one!

Now they will use stronger medicines earlier in the course of the disease. And prescribing larger doses and more combinations is becoming the new standard treatment for Rheumatoid Arthritis. I call it the SURGE. (Think: war.) The goal is to bring remission sooner and prevent more damage.

Some who have been sick with RA for decades have lived through all the changes. I lived through the same thing with Hashimoto’s disease (an autoimmune thyroid disease). During the 30 years that I have been diagnosed, they have thrown out the books twice - and rewritten them! Oops. That has had a big impact on the treatment that I am able to receive.

Of course, medicine is a practice and most doctors are practicing it the best that they can. But, they can’t learn to do any better if we just keep quiet about it. I want patients to be a part of this process as we continue to re-write the books.

Monday, June 8, 2009

Can Rheumatoid Arthritis Kill You?

This post is a reaction to the many times I have heard “At least it’s nothing serious.” Well, some things about Rheumatoid Arthritis are downright serious. So, I want to place a warning to my readers that today I am utterly serious. For once, I have found something that is not a joking matter at all.

A few months ago, I read an old interview with Debra Norville about her mother who had RA. The author said that she had “died of Rheumatoid Arthritis.” Norville’s mom is not the first, of course. My own grandfather’s life was cut short and RA apparently was part of that.

Let’s look at a few facts:

(You do not need to read the all links to understand my point, but even though it was tedious, I wanted to provide them for anyone who may need to begin a particular search. And they prove my point, too.)

- Rheumatoid Arthritis can attack the spine. When the C-1 vertebra is affected, pressure on the spinal cord can lead to paralysis or death. Clinical neurology book

- Inside of the larynx are the Cricoarytenoid joints (the vocal cord joints) which bring the characteristic hoarseness of RA. Both the swelling and the nodules can interfere with ability to breathe. Sometimes, a tracheotomy is required. Here is a discussion of this. Health central discussion

- Rheumatoid Arthritis of the pericardium (heart lining) interferes with heart function. There are also nodules and inflammation of the muscle itself. Web md

- RA can attack the lungs in a similar way to the heart, inflaming the lining, or causing nodules. The pleurisy and the scarring both can be life threatening. Mayo clinic

- Rheumatoid Arthritis patients sometimes die from infections because the treatments suppress the immune system. About.com

- Heart attack and heart disease risk is much higher. And much less recognized. RA causes inflammation and blockages of arteries. About.com

- Rheumatoid Arthritis is associated with a shortened lifespan. Some reasons, like constant inflammation, are obvious. Others are not yet known. Studies show that the mortality gap is not improved by treatments. Medscape

- More widely known is the greater risk of cancer for RA patients. Some attribute this to the treatments used, but this is uncertain.

- There are dozens of other lesser known complications of Rheumatoid Arthritis which can contribute to early death including involvement of blood vessels, nerves, and other vital organs.

Some of these problems are rarer than others. Most of them are fairly low in incidence when measured separately. However, taken together, there is reason for concern. Risk increases with the severity of the disease; RA patients with a severe form of Rheumatoid Arthritis are more likely to see one of these in their future.

Maybe we do not talk about this because we do not want to dwell on fearful things. Maybe it is because we are too busy with learning to walk on knee replacements or trying to get our insurance to pay for the shots.

But, I worry because you can’t seek treatment until you know that there is a problem. Most of these problems are frequently undiagnosed in RA patients until they become severe. Why is that? That is a good question.

Sunday, June 7, 2009

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!”

Friday, June 5, 2009

The Use It or Lose It Approach to Rheumatoid Arthritis

Does Use It or Lose It Work for RA?

Gee, I hope you won’t mind another beach story. Here is a different view of the same beach.

Right about the time I was finally diagnosed with Rheumatoid Arthritis, I got a call from a friend who was coming to the coast for a vacation. “Bring the kids and come out to the beach and see us,” she said. I really love to visit friends. Of course, I love the beach. And, like most people, I hate to say, “No.”

So, I set out to manage the beach. At this point, the RA had only disabled my shoulders and my feet. It was pretty early in the process. However, the disability was extreme. I no longer washed my own hair, much less styled it. Walking was difficult. My kids helped me do everything that I did do - and did the rest for me entirely.

Like I said, this was early in the RA process. So I did not think about how my friends would react to the Rheumatoid Arthritis. I assumed that they would accept me as they always had, and perhaps even sympathize with my plight.

These friends had always been particularly kind to me. We had laughed and cried and prayed together. They had noticed more than once when I needed something– and given it cheerfully without having been asked. So I was shocked at the reaction to what RA had done to me.

At first, there were merely disapproving looks because I let the kids carry all the stuff onto the beach. There were lots of stairs around the condo and I was having a hard time getting around. I had learned to lean on the shoulder of my son to help me walk. I did not say anything, but I was always several paces behind my friend. She’s the “Why walk when you can run?” type – like I had always been. (See Makeovers and Bag Ladies.)

I just couldn’t keep up with her and she seemed a bit annoyed about it. But, I hoped I was wrong in my perception. Maybe she was stressing over something else.

When we were finally seated on the beach chairs, I waited for a good opportunity to tell her about the RA. It was awkward, but it never occurred to me to give up. She was a friend, after all.

However, neither sympathy nor empathy was forthcoming. There were a few comments about how her pains were worse than mine. I would rather be friendly than pushy, so I gave up pretty easily.

She carried my beach chair on the way back up to the car. I will never forget what she said to me, “You know, Kelly, what I have always believed? You either use it or lose it. Do you know what I mean?”

If only I could find a way to live in her reality – where Rheumatoid Arthritis is not real. How can I get into THAT reality? I only gulped. I did not reply. But now that I have had a few years to think about it, I know what I should have said:

“You know what I have always believed? Compassion – I always say – you either use it or lose it. Do you know what I mean?”

Thursday, June 4, 2009

The Shifting Sand of Rheumatoid Arthritis

Life With RA Is Shifting Sand

The other day, I took my kids to the beach. Well, they kinda take me now, really. I just drive.

It’s always good for a perspective boost. Look out at that horizon and realize that your problems are small – and that the world is a beautiful gift to us. Maybe it even makes us more aware of a Creator who is powerful like the waves which can’t be controlled.

These are good things. But this time, it was something less subtle that spoke to me. It was the way the ground kept disappearing beneath my feet while I stood at the shore.

We were trying to scoop up handfuls of wet sand to find shells. The waves made it hard to stand up to begin with. But, on top of that, they kept carrying away the sand beneath my feet. Hey, wait! Where am I supposed to stand?

I thought it was a lot like Rheumatoid Arthritis. It keeps taking away the place where you are used to standing. And you are left with the holes. If you don’t do something immediately, you will fall right into that beautiful ocean. You have to actually pick up each foot and replace it on the new ground.

My four year old is still figuring this all out. So he does go down, of course. Onto his backside.

When RA takes away ground, we are left tottering until we find a new place to stand. We have to literally adjust. Life is like that for every one – the need to adjust. It’s just that with Rheumatoid Arthritis, it’s more like trying to stand on the shoreline: you have to adjust again as soon as you are stabilized.

So, you adjust… and adjust… and adjust… and adjust…

How long can you stand there on the shifting sand? After a while, it was too much. I was exhausted and gave up my spot to shell hunters with healthier knees. Of course, the Rheumatoid Arthritis will not do me the courtesy of letting me walk away. So, there has to be another remedy.

As RA continues to remove and change the landscape beneath us, we must find ways to adjust repeatedly. We learn that is our reality now. For survival, we adjust: We change our medications. We look for a new doctor. We replace the doorknobs. We learn to ask for help. We learn ways to treat a new symptom…

We adjust…and adjust… and adjust…

It’s never stagnant or dull. We are not stuck in the status quo. We are always on our toes – except for when we fall on our behinds.

At least there is a great view of the horizon from the shoreline.

Wednesday, June 3, 2009

Preventative First Aid for Rheumatoid Arthritis

Practice "Preventative First Aid"

Many Rheumatoid Arthritis drugs are immuno-suppressant. That means that they work by reducing immune cells or impairing the function of certain types to immune cells. While this usually helps to reduce RA symptoms, it leaves the RA patient with lowered ability to combat invading bacteria.

There are several steps that can be taken to reduce the chances of harm due to living with a suppressed immune system. I call this practice “Preventative First Aid.” Sometimes, there’s just not a convenient word to choose “off the racks.” So I made up this expression.

At first, Preventative First Aid sounds like an oxymoron. Regular first aid is usually used to provide immediate assistance after an injury occurs. Preventative First Aid is designed to prevent injury or illness.

It can be used to mean either preventing minor injuries from occurring or preventing them becoming more serious. Often, this means taking special care, the way a diabetic does with his feet. He cannot allow even the opportunity for infection.

Here is a list of some of the ways that I have learned to practice Preventative First Aid. I hope you will list more of your own in the comment window below.

* Wash your hands and keep your own clean towel, not a community towel.

* Wear gloves when using tools which could injure hands (rubber gloves, gardening gloves, or latex gloves – I love the blue ones sold at Sally made for hair coloring). Tight gloves do hurt to put on, so buy them large.

* Wear Band-Aids to protect a particular finger when using tools which are sharp like a sewing needle or a paring knife.

* Thimbles are nice, but they can be too difficult to use. It just depends upon the finger in question. I did find at a quilt store a new soft latex thimble that is much more comfortable.

* Minimize sores, infections, and decay in the mouth by using impeccable dental hygiene. Floss daily. Disinfect any mouth appliances with a good professional cleaning agent (I like Smile Again – you can buy it online). My dentist also cleans my night guard while I receive my regular check-ups, a must.

* Prevent cracks in the skin with the regular use of lotions, especially after frequent hand washings and before bed.

* Protect any small cracks in the skin from becoming infected. Keep antibiotic ointment and a Band-Aid handy (I keep some in my car or purse) to treat any minor scratch, burn, or pinprick before it gets infected. I have learned to inspect my hands at bedtime; it is amazing how many times I have awoken with finger infections that are hot and red because of a tiny cut which seemed barely visible before. This can be prevented.

* To prevent being cut, use whatever scissors are most comfortable to cut food in the kitchen - instead of using a knife.

* Take in lots of healthy foods and vitamins. Don’t cut corners on protein or vegetables. Your body needs them to rebuild tissue and you’ll feel stronger, too.

* Prevent dehydration. Hikers and scouts know that this helps to prevent illness or injury from becoming more serious. For RA-ers, it is important because water dilutes toxins and transports nutrients within the body.

* Eat pro-biotic foods like yogurt. These healthy bacteria may strengthen proper immune responses in a suppressed immune system. They also help the digestive system to deal with the stress of medications. Some researchers also think that pro-biotics may even have anti-inflammatory properties.

Tuesday, June 2, 2009

Baloney About Rheumatoid Arthritis

How Do You Spell Baloney?

“Baloney,” I muttered to myself the first time I saw an ad for a Rheumatoid Arthritis drug. My jaw would have dropped – if I could have opened it. Who am I kidding? If I could have, I would have liked to throw something at the TV or at least the producer of that ridiculous commercial.

I don’t think they are still running it. A woman sits on the beach watching children play. And since she is supposed to have RA, she sits massaging her knee firmly with her hands.

Here is what I was thinking:

1) How did she get so close to the shore? Did she walk on that knee through the sand? There is no one else around. Did she carry that lawn chair herself?

2) If her knee hurts, why is she rubbing it so hard? Rheumatoid Arthritis makes joints so tender that it is painful even to brush against them lightly.

3) What person with Rheumatoid Arthritis can rub anything firmly like that? Aren’t the hands supposed to be the first to go? (Well, with me it was the feet; I like to do things the hard way.)

It was not a realistic depiction of RA. So that same company has a new ad series. Instead, a woman goes dancing through her day – either managing her huge dog with ease or enjoying fine dining with her romantic interest. Her life is bliss. Thanks to the drug. Baloney.

How about the magazine ads? Every time I open a magazine, there is an ad for a Rheumatoid Arthritis drug which pictures the hands of a senior citizen. Hey, I hope I grow old, too, in spite of RA. But, most people get RA between the ages of 35 and 50. And we are having a hard time getting the message out about that.

Why can’t they use a young hand in just one ad? I plan to ask them and I hope you will, too. Why can’t one ad ever show a man with Rheumatoid Arthritis? At least twenty percent of RA patients are men. Don’t you think people would react strongly to see how RA can destroy a man in the prime of his life? Why is there not ever a single child? Now that would evoke some concern. That’s right; there are at least 3 types of RA which make up Juvenile Rheumatoid Arthritis.

For that matter, why can’t they ever once use a real RA patient in an ad, instead of the bouncy actress? I bet there are thousands of RA patients who would do it for free just to get the truth out. Take that back - we need the money – our treatments are really costly.

That reminds me: when I first went on biologics, my RA doctor told me how angry she is that they even HAVE ads for these drugs. Her opinion: “If you have RA, your doctor knows about the biologics. And if you do not have RA, no one is going to prescribe them for you. What are those ads FOR? It is a waste of money which could be used on research or helping patients get the most expensive medicine in the world, which they need to live.”

At least those ads are for a drug which actually treats arthritis. The one that really aggravates me lately says this: “For many people with arthritis, not treating is not an option.” This medicine is not an arthritis treatment. It is a temporary pain reliever. This ad confuses people about what arthritis is. If they mean Osteoarthritis, they should say so. Perhaps they do not so that they can sell more of the drug. That is the point of advertising, right?

How about this one? What are they claiming their drug can do? A picture of barbells has the caption: “Arthritic joints need strong muscles to protect them. Tylenol Arthritis Pain.”

If they want to advertise, I say fine. I like a free market. Could they at least promote truth about the reality of Rheumatoid Arthritis at the same time? Wouldn’t that build trust, which is what strengthens sales in the end?

Beats the baloney they serve up now.

Monday, June 1, 2009

Hope for Rheumatoid Arthritis in a Spray Can

Hope, the noun, is like oxygen. Hope, the verb, is like breathing.

Living with Rheumatoid Arthritis requires hope. Of course, we hope for a cure. We hope that the medicine will work. We hope the doctor will listen. We hope that the insurance covers our tests. We hope people will understand when we can’t do what they expect us to do. How are we going to get this much hope?

A couple weeks ago, I read this blog on hope and it really got me thinking. I totally agreed that hope is essential. In fact, it is like oxygen; we need it to go on. That’s unmistakable.

But I kept thinking, how do we get it - and keep it. Why do some seem to have more of it? Sometimes, I wish I could buy hope in a spray can. That way I could spray it like air freshener as I walk through the world.

After wrestling with it, I realized that hope is not only a noun, but also a verb. The thing “hope” is what we pursue. We all want to have plenty of it and never run out. We’d like to have enough to share. When we are compassionate, we give out some of it to one another. Or God can give it directly to us.

However, hope, the verb, is harder to nail down. We say, “I hope things will change,” and we are trying to will it to be so. We strain towards that goal. Indeed, hoping is something to do. We can either do it or not.

When we do it, it is a choice to do it. It may not be a conscious choice usually, but still it’s a choice - like how much ice cream to eat or whether to wear a seatbelt. There are some things which we can do both deliberately and automatically, like breathing. Hope, the verb, is like that.

If hoping is hard to do, maybe we can get better at with practice - like speaking French or decorating cakes or playing tennis. It’s like a muscle which needs to be exercised so that it can grow stronger. That’s what we are doing when we practice hope against heavy odds; we are weightlifting. When we have to keep on doing it and it seems no end is in sight, we are wait-lifting, too.

If we exercise our hope muscle, we may get really good at it. Then, folks will wonder why we have so much more of it than other people seem to have. “That’s okay,” you can say, “I am willing to share the fresh air. My spray can is full. Breathe in deeply.”

Holly's article on Hope at Health Central