Tuesday, September 8, 2009

RA Warrior has moved to rawarrior.com

Hello. If you see this message, come find me!
My blog has moved to my new website at this address: http://rawarrior.com/

Friday, September 4, 2009

What is Remission of Rheumatoid Arthritis, Part 3

The Story of Remission

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

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

History of RA Treatment Goals

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

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

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

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

Why on earth do they get to call this remission?

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

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

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

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

Thursday, September 3, 2009

What is Remission of Rheumatoid Arthritis? Part 2

Clinical Remission

Rheumatology doctors look for something that they call “clinical remission.” And there are several different descriptions of clinical remission. As I mentioned at the end of yesterday’s post, Science Direct has listed 6 different descriptions of clinical remission of Rheumatoid Arthritis.

The American College of Rheumatology adopted a list in 1981 of six criteria. If 5 out of 6 of them were satisfied for 2 months time, that was classified as a clinical remission. In 2007, the ACR adjusted the list and the standard. It is now 4 out of 5 criteria, making it easier to classify people as being in a state of remission. “No fatigue” was removed from the list.

Here is a look at the current criteria:

Complete clinical remission is defined as presence of at least 4 of the following 5 criteria for at least 2 consecutive months:
- morning stiffness equal to 15 minutes or less
- no joint pain by history (meaning according to patient)
- no joint tenderness
- no joint or tendon-sheath swelling
- ESR lower than 30 in women (20 in men)

Note: Please see my recent posts on tests for RA regarding ESR and CRP levels.)

What difference does it make?

Rheumatoid Arthritis can continue to damage the patient.

Researchers are beginning to realize that even patients who appear to be in a period of clinical remission are possibly continuing to experience damage due to RA. According to one study in the Netherlands, “Whether radiographic progression (that is x-ray changes revealing damage) is entirely dependent on the presence of joint inflammation is a matter of debate; some evidence suggests that radiologic progression may continue in patients who appear clinically to be in remission…”

This would mean that the patient should definitely not suspend treatment aimed at forestalling damage. And it would beg the question of whether the use of the term “remission” is actually appropriate to begin with.

The authors point out the obvious need for better methods of detecting joint damage. “Better diagnosis of joint damage will assist in our quest to attain and document full remission in RA.”

Patient treatment

The criteria doctors use to judge the state of Rheumatoid Arthritis in a patient directly affect treatment decisions. Patients who are considered to be in remission are usually assigned a less aggressive treatment protocol. As stated above, unseen damage to joints and other body systems can continue while inflammation appears to have abated.

Here is one example: “Rheumatoid arthritis is a major risk factor for heart attack as a study of 114,000 women indicated. The risk of a heart attack in women with rheumatoid arthritis was double that of other women” (Medterms).

My question: Does so-called “clinical remission” have any influence on this statistic? Mortality rates for Rheumatoid Arthritis say, “No.” See my post on Mortality.

Drug trials

This one is thorny. The criteria that a pharmaceutical company uses for its drug trials make the drug to appear more or less effective. If one drug trial uses a stringent definition of clinical remission, its product may appear to be less effective than another company which uses a more relaxed standard.

An amusing account of ankles.

I read a couple of articles about an interesting debate that took place over the last couple of years. Rheumatologists were arguing that joint counts (swollen, tender, or disabled) ought not include feet and ankle joints. One elaborate study “proved” that it does not matter whether ankles and feet are counted. In other words, there is no difference in the DAS (disease activity score) as it relates to criteria for remission according to NIH.

Read their conclusion for yourself: “…inclusion of ankles and feet only rarely influences the definition of overall disease activity status, especially the presence or absence of remission.”

Here is the funny part. This is a direct quote. I promise you. It is a footnote to the study above:

“Finally, an important clinical consideration should be discussed. The mere fact that ankles and feet have been excluded in the context of certain composite scores does not justify their omission in the evaluation and management of individual patients with RA. In contrast, since their involvement is common and they bear highly important functional roles…”

They are reminding doctors who read their report to go ahead and treat the ankles and feet because they are functionally very useful parts of the body of the person affected. I find it hysterically funny that they consider it necessary to say such a thing.

Or maybe just sad.

Next time: Remission and RA, part 3. We’ll ask, “Are we still sick if we are in remission?”

Wednesday, September 2, 2009

What is Remission of Rheumatoid Arthritis?

Can Rheumatoid Arthritis go into remission?

I always thought that remission was like the Holy Grail – hard to come by. However, I never realized that it was also hard to identify.
When somebody has cancer, he fights for remission. His whole family prays for remission. The remission itself may be elusive, but he knows what it is! It is no more cancer. At least for the time being…

It is not so with Rheumatoid Arthritis. They haven’t really decided what it is. Look at what one rheumatologist said: “To a considerable extent, defining remission in RA is like defining pornography; we have great difficulty agreeing on a definition.”

How many RA’ers go into remission?

That depends upon who you ask.

According to NIH, rates of remission of Rheumatoid Arthritis vary from under 5% to over 16% because of differing definitions. Those ranges are substantiated by much of what I have read. One study reported on Medscape says the remission rate can be up to 20% using certain criteria. Compare that to what one doctor said in Arthritis Today: “If you get treated within two years of the onset of RA symptoms, you have more than a 50 percent chance of achieving remission.”

Is he saying that over half of those who are treated early (during the first 2 years of RA) will get remission?

Alas, I am not a doctor. But, I have read dozens of abstracts and detailed reports on remission. I have never read anything like that, however he qualifies it.

It also depends upon how you ask.

There are various sets of criteria which fulfill various definitions of remission. NIH concluded: “The use of different definitions of RA remission leads to different results with regard to remission rates...”

Two broad definitions with one basic distinction

1) There is a generic understanding of “remission” with a connotation that we all know. One online dictionary defines remission as the “absence of symptoms of the disease and return to good health.” In part, Wikipedia says, “a cure(that) is the end of a medical condition.”

2) There is a big difference between that and what rheumatologists often call “clinical remission.” They are referring to a specific set of criteria which usually does not include the “absence of symptoms” or a “return to good health” or a “cure.”

Hopefully, I did not confuse you. I will leave you today with a link to a wide-ranging set of definitions of remission of Rheumatoid Arthritis. It gives 6 different descriptions of clinical remission with varying criteria. It is at Science Direct.

Next time, we’ll look closer at how the rheumatologists define remission. And we’ll ask why it matters to us.

Tuesday, September 1, 2009

Some Answers for Rheumatoid Arthritis Just Bring More Questions

If stress weakens my immune system, why doesn’t that cure me?

And other weird questions no one will answer…
Many people advise me to avoid stress since it can weaken the immune system. I’m sorry, but there’s just something funny about that. I’ve been sort of afraid to ask, but don’t I WANT my immune system weaker? Don’t I take meds to knock it to its knees? Doesn’t that make stress my friend? If I could just get enough stress, wouldn’t I be cured?

Some of these questions just beg to be asked. They are just too embarrassing to say out loud. Why do medicines for Rheumatoid Arthritis have to make you feel lethargic and gain wait? We can barely move around already. Why can’t treatments for Rheumatoid Arthritis make you lose weight and have more energy like the ones for ADHD?

Here is a really tough one: When I say, “I CAN’T,” why does everyone hear something different? There must be something wrong with the reception. People hear, “I don’t want to.”
Listen, I do not even mean to say, “Well, I would do that, but it would hurt.” I REALLY mean, “I CAN’T do that right now.” I should probably just say it louder. That works with the TV when the reception is bad, right? Just turn it up.

I have more questions: If rest is so good for me, why does it make me so stiff? How am I supposed to sit down and rest when my knees and hips don’t want to bend? If we have made so much progress in the world, how come shoes were custom made to fit in the pioneer days, but there are so few to accommodate Rheumatoid Arthritis?

Another: And why am I told to protect my joints on one page of a “living with Rheumatoid Arthritis” book. And then on a different page of the same book, I am encouraged to exercise using those same joints. Why is the exact same motion considered to be dangerous in one context, but healthy in another context?

More ironic questions: Why do people think if you have Rheumatoid Arthritis, moving to Florida will cure it? (I live in Florida; No go.) Why do people tell us “No pain, no gain”? What are we supposed to gain from pain anyway?

And here’s one: Since there are so many cures for RA on the internet, why doesn’t my doctor know how to cure me yet?

I would like to take a vacation someday. I hope it won’t reduce my stress so much that it would increase my immune activity. That’d be bad for my RA – and really stressful.

Monday, August 31, 2009

Working and Rheumatoid Arthritis

Rheumatoid Arthritis is a thief. It steals so much from our lives. Very often that includes the ability to make a living.

There are ripples out from this one issue into every other area of life. Here’s a short list I bet you could add to.

Self-respect
Standard of living
Health coverage
Relationships
Loss of your productivity to family, employer, and society

My heart breaks from what I hear every day:

One woman left her husband because he could not work any longer. She could not accept his being on disability. Maybe she saw him as lazy because his disability is invisible to her.

One woman I know is terrified of losing her health insurance and her house. Actually, I have heard that from more than one person, come to think of it.

I know one lady who works for a man who will not acknowledge the physical problems her Rheumatoid Arthritis brings. Her boss makes her stand on her feet for hours doing a job which could possibly be done while sitting.

A dear friend of mine still works at her job every day; but I do not know how she makes it through each day. She is literally not able to anything else besides her work. There are fears about how long she will be able to do this.

One person told me she knows she is no longer a “viable” employee so she will be laid off from her job soon.

I know many RA’ers have had to trade down to a job that they like less, but is more suitable.
Then there are many like me (and the restaurant owner in the video) who were self employed when RA disabled them. She said, “Now I feel even if I applied to somebody else for a job, they wouldn’t want me.”

What about you? Let’s begin a conversation on this which may help one another. At the same time, we will be letting the non-RA world see what we deal with.

How has Rheumatoid Arthritis affected your ability to work at a job?

Related posts:
Functional Measurement of Rheumatoid Arthritis
6 Ways to Get Hard Projects Done With RA

What Causes the Fatigue of Rheumatoid Arthritis?

Postblog: I have just noticed that one of the blogs that I follow also wrote a post on working and RA! (Good job Terry.) Here's the link to that blog for a clear view of his work with Rheumatoid Arthritis pain. The blog is called Dual Sport Life.

Friday, August 28, 2009

Woman’s Day Reply to Rheumatoid Arthritis Comments

Many have been asking about me Woman’s Day magazine’s RA article.

Here’s what happened.

On July 15, I gave my sincere response to a one page article in Woman’s Day on Rheumatoid Arthritis. Many of you responded to the online version of that same article with comments that were intelligent and straightforward. Some of those comments were good enough to be whole blog posts! And there are over 30 of them!

As I mentioned in that post, I also began attempting to directly respond to the magazine’s editors.

Fast forward to August 21. I mentioned the Woman’s Day article in a blog post on the mythical RA. That day, someone left a url for the author of the article in a comment on the blog. After I checked it out, I did email her directly.

Here’s where we stand.

On August 25, I got a reply email from the author of the article, Judi Ketteler. Judi sent me the magazine’s reply. Here it is:

A Note from the Editors:Thank you all for your comments. We know that RA can cause severe pain, suffering and disability and certainly didn’t want to undermine that fact. This online story ran as a one-page article in the magazine under our “Checkup” column. The column (and story) is designed to provide a basic primer and is aimed primarily at people who are not familiar with the condition. It’s factually correct and the author interviewed a top rheumatologist. That being said, there are limitations to what we can cover in such a short amount of space. If we cover RA in the future, we hope to include real-life patient stories and provide more detailed information.

This was this past Tuesday. That was my first indication that someone at Woman’s Day was going to acknowledge us. I took some time to consider how to react.

What does this mean to us?

Someone close to me used to tell me: Some days chicken; some days feathers. If you’re from Texas, you’ll get it. The rest of us try.

I am predisposed to sports analogies and relate almost anything to football. So, I say: You win some, you lose some.

We lost this way.

The editor’s at WD actually think that what they wrote is “factually correct” and a “basic primer” on “the condition.” It is excruciatingly obvious that they think that they are right. Unfortunately, the actual facts about Rheumatoid Arthritis are evident to us every day.

We won this way.

At least we know the score. Where we stand is more apparent than ever. We have a 2-front war on our hands: 1) We fight Rheumatoid Arthritis in our own bodies and lives. 2) And we fight misperceptions about RA, too.

The WD article hit a hot button with RA’ers because it is an illustration of what we deal with every day: friends and neighbors who misjudge us because of RA; family members who refuse to adjust expectations or offer appropriate assistance; a general public which doubts the serious nature of our illness; employers who fail to recognize our limitations; and certain doctors who view us as weak-willed whiners. My son says, “People misjudge by appearances.”

But we are in the fight. We are on the field. The game is not over.

Recommended reading:
My original post: Woman's Day Article on Rheumatoid Arthritis
Taking RA seriously: Can Rheumatoid Arthritis Kill You?
On the lighter side: Weathering Rheumatoid Arthritis

Thursday, August 27, 2009

Blood Tests for Rheumatoid Arthritis, part 2

Substantial numbers of RA’ers have “normal” test results

In my last post, I posed the question: Is There a Blood Test for Rheumatoid Arthritis? I told you that the answer is yes – and no. I went on to describe the “yes” by summarizing four principal blood tests used in diagnosing Rheumatoid Arthritis. Now it is time to elaborate upon the “no.”

I found this startling:

You may already know that there is not a blood test to definitively measure Rheumatoid Arthritis. No blood test can be used to precisely diagnose RA in all patients. But just as importantly, there is not a test which can reliably gauge the degree of RA within a patient.

But, wait, it gets more interesting:

The most thorough study of the usefulness of these tests was a large study conducted in both Finland and Tennessee. Almost 2,500 patients were studied over a period of 25 years. The CRP, sed rate (ESR), and Rheumatoid factor (Rf) were all monitored.

Look at some of the results. ESR was normal in 45% (Finland) and 47% (Tennessee) of patients. CRP was normal in 44% and 58%. And all Rheumatoid factor (Rf) tests were negative in 38% and 37% of patients.

Why does this matter?

Doctors commonly use these three tests to “monitor disease activity.” That means they are looking to these numbers to show whether the disease is active and whether a patient’s current treatment plan is adequate. Some doctors are more reliant upon them than others. I have met one rheumatologist who says that he relies upon them completely.

So read this carefully:

Many RA’ers experience plenty of active and damaging Rheumatoid Arthritis while one or all of these indicators are “normal.”

Here are a few cases in point:

~ “Sometimes also patients with rheumatoid arthritis have low CRP response in relation to the severity of the disease.” Axis-shield

~ “By the same token a normal sed rate is meaningless in a patient with known SLE if they are having symptoms of a flare." (Sounds like this rheumatologist considers the lab test pretty useless to measure flares in Lupus.) Nathan Wei, MD, FACP, FACR

~ “However, a low CRP level does not always mean that there is no inflammation present. Levels of CRP may not be increased in persons with rheumatoid arthritis and lupus. The reason for this is not known.” University of Southern California

~ “Many people with active RA have inactive values of ESR/CRP and many with inactive RA have active values.” Journal of Rheum.

~ “Both ESR and CRP were normal in 33% and 42% of patients” in the large study mentioned earlier. Journal of Rheum. abstract

What is the bottom line?

Only a small percentage of RA’ers actually had abnormal results to all three blood tests (ESR, CRP, and Rf) in the huge Finland / Tennessee study. “All 3 tests were abnormal in only 28% in Jyväskylä (Finland) and 23% in Nashville (Tennessee).” The authors of the study concluded: “Normal ESR, CRP, and RF are seen in a substantial proportion of patients with RA at this time.” Journal of Rheum. abstract

There is hope.

I had already spent many grueling hours researching for this series when I happened upon an article entitled The Many Myths of Erythrocyte Sedimentation Rate and C-Reactive Protein. I was thrilled to find a rheumatologist who holds the following viewpoint. “Learning when to ignore a test and when to rely on it lies at the heart of good medical care… It is, perhaps, time for more research about testing and measurement in clinical practice.” I recommend the article in the Journal of Rheumatology by Frederick Wolfe, M.D.

Tuesday, August 25, 2009

Is there a blood test for Rheumatoid Arthritis? Part 1

Yes and no. There are at least four. But, actually, there is none. Allow me to explain…

Do the tests pass the tests?

What are the tests?

1) Rheumatoid Factor

For the last few decades, Rheumatologists have relied heavily enough upon the Rheumatoid factor test that it is part of the American College of Rheumatology (ACR) guidelines for diagnosis. However, many Rheumatoid Arthritis patients do not have high enough levels of this antibody to be considered “Rf positive.”

Those RA’ers are referred to as “seronegative.” Sometimes, I think they are considered the stepchildren of the RA community. Too often, they are initially told by their doctors that they do not even have Rheumatoid Arthritis. Of course, that makes it impossible for them to receive that “early aggressive treatment” which the ACR is now urgently recommending.

The Rheumatoid factor is actually only one of the antibodies which can be found in people with Rheumatoid Arthritis. I think it got to be the one called “Rheumatoid factor / Rf” because it was the first one identified. It is an antibody to immunoglobulin. It was discovered in 1940 using sheep blood cells.

Another problem with the Rf test is the number of false positives. At least 2% of the general population test Rf positive.

2) Anti- Cyclic Citrullinated Peptide

The anti-cyclic citrullinated peptide is another antibody (immune protein). It is directed against certain amino acids (peptides) containing citrulline. It is often called the anti-CCP.

The anti-CCP has excellent prognostic value because it is strongly associated with more aggressive forms of Rheumatoid Arthritis. This is also a more specific test, which means that, if it is present in the blood, there is a 90-95% probability that there is RA. And CCP antibodies are often present in blood years before symptoms develop. It could be used to pursue early diagnosis for the all-important “early treatment.”

3) Sed Rate

The erythrocyte sedimentation rate is also called the sed rate or the ESR. The sed rate is a simple screening test. Blood is allowed to settle in a test tube for one hour. The reading or “rate” is the number of millimeters of red blood cells that fall to the bottom of the tube in one hour.

The sed rate is considered an inflammatory indicator. High rates often correlate with inflammation. An extremely high sed rate is often the first indicator of a cancer tumor, for example. However, a sed rate itself is not diagnostic, so it usually leads to more tests.

Sed rates can be unreliable unless the blood is handled properly at all times. There are also several conditions other than inflammation which can influence the test results. High sed rates are considered strong indicators, but normal ones are less conclusive.

4) C-Reactive Protein

The C-reactive protein is often referred to as the CRP. This is also a non-specific marker of inflammation. High results indicate acute inflammation. CRP’s are also being used as a measure for heart disease.

However, many physical conditions can either raise or lower the CRP. The patient’s diet or medication regimen can alter a CRP result. There is also a more sensitive version of the CRP test, called the “high sensitivity C reactive protein assay.” (We will have much more on the CRP in the next post!)

Are these tests adequate?

Next time, we will look a bit deeper. Exactly how accurate are these tests? How many RA’ers fail them?

A few footnotes:

The Truth About Rheumatoid Arthritis Will Be Told!

I got some good news this week that I know will make you smile, too. Let me back up a bit.

A few weeks back, the company which markets Remicade put up a new website about Rheumatoid Arthritis. It is a video series presented in a “talk show” format. It is highly polished and full of star power. The “host” is Deborah Norville.

When I heard about it, I was eager and excited. A long time ago, I had read that Norville’s mother had died of RA. At one point, I had made an attempt to reach Norville for an interview, but had not gotten a reply.

I hurriedly watched the video segments. However, my enthusiasm burst quicker than a cheap balloon. I sensed the presence of my arch enemy: the mythical RA. I could tell that the script writer did not understand Rheumatoid Arthritis.

To me, the worst video was the one on exercise. You’ll never guess what they called it! Yep you guessed it: “Use It or Lose It.” When I first heard that, it was like the Grinch stole my Christmas.

Here is how I felt: How can I accomplish my goal of telling the whole world about the real Rheumatoid Arthritis when…

1) The big money goes into a slick presentation which contradicts what I know to be true?

2) How can we ever get anyone to listen? I am just one blogger.

HOWEVER, here is what followed:

1) I made my opinion of the video known those in charge. I tried to represent “the real RA” and what has been shared with me by so many RA’ers.

2) They listened! Based on my input, they are making changes to the script of the exercise video.

This is what they told me: “The new copy has been adjusted to be more reflective of varying levels of ability for people living with RA.” They sent me examples of the changes.

They even changed the name of the video segment on exercise to “Stay Active at Your own Pace.” And they are taking my conversations with them into consideration as they draft new scripts future video segments. I will keep you up to speed on that.

I know they have a way to go until their site reflects the same brutally accurate version of Rheumatoid Arthritis that you see on Rheumatoid Arthritis Warrior. But, this is a step in the right direction. And, even more important, it is proof that someone is listening.

(Pssst: it's not a pizza! It's a monster cookie.)

Links:
The New Way RA Video Website
My Original Comment on the Videos
(if you want to add a comment on the Johnson and Johnson page, please watch the videos first)
Will the Real Rheumatoid Arthritis Please Stand Up (re: mythical RA)
One Month Birthday (where my original goals are listed)

Monday, August 24, 2009

Should Rheumatoid Arthritis Patients Exercise, Part 2


Should Rheumatoid Arthritis patients exercise or not?

There was a bit of a backlash to the Part 1 blog post to this series on exercise and Rheumatoid Arthritis. A few people even unsubscribed. But, staying out of trouble is not a goal of this blog. Truth-telling is.

Specifically, what I have challenged is the kneejerk “Use it or lose it” approach to exercise and Rheumatoid Arthritis. It is simply ironic when joint protection is considered. As I explained in Should Rheumatoid Arthritis Patients Exercise, Part 1, I do not oppose exercise generally.

Recently, I wrote that “Use it or lose it” should be re-written. It ought to be: If you can exercise, you should; If you can’t, you should not.

Logic

Let me paint a picture for you: massage is a good thing, right? Everyone knows it can be very beneficial in the right context. However, imagine massaging a sunburned back.

Doesn’t work, does it?

That’s the same thing as prescribing exercise for Rheumatoid Arthritis patients who are damaged, inflamed, or barely able to move.

Are people saying that the crutches, canes, wheelchairs, and braces of many RA’ers are just props and that they need to cast them aside and rise up and walk? Or are they implying that those with Rheumatoid Arthritis are in this condition because they were too inactive to begin with? We just need common sense on this issue.

It’s one of those things that does not need to be explained to those of us who know. The problem is, it is nearly impossible to explain it to those who don’t know. How can they know what they cannot experience?

Bluntly, if you are still able to view exercise as helpful to you, then you can probably still exercise. And you probably should – whether you have Rheumatoid Arthritis or not. If you are not sure, it’s easy enough to find out.

Experiments

Several months ago, I could not resist the draw of my kids and the tennis rackets. I determined to hit a few with my 12 year old. I could barely hold onto the lightweight racket. But, my willpower is iron.

I managed to force my wrist to awkwardly hold out that racket. I thought: I WILL do this! And then my child tapped a ball in my direction. It felt like a cannonball hit my racket. The shock of that ball sent pain through my hand and arm that did not fade in a few moments.

I did not give up. Over and over, I tried to ignore the pain. I missed more and more balls because my hips would not let me move sideways. I did not want to, but eventually I had to quit, of course.

I did not complain. I had done this voluntarily. I just had to know whether I could hit the ball. It looks so easy…

For several days, my hand and wrist were useless. Was it worth it to play a bit of really crummy tennis? No.

However, I am hoping it was worthwhile for another reason. It was a useful experiment. Think of it as a research trial.

Tomorrow in Rheumatoid Arthritis and Exercise, Part 3: more homemade RA research trials and a piece of exciting news on this topic.

Friday, August 21, 2009

To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

Swimming with dragons

This RA Warrior is a dragon slayer. There is one particular dragon who is my arch enemy. It is the mythical version of Rheumatoid Arthritis.

I imagine that as it deceives people about Rheumatoid Arthritis, there is less concern about whether a cure is needed for the real RA. The mythical version of RA is probably not a stranger to you. However, let’s warn any newbies among us about what it looks like.

The mythical version of Rheumatoid Arthritis is a few aches and pains mixed in with a large amount of lethargy. It also includes some stupidity about medical treatments and how easy it is too cure anything at all today. Finally, the mythical RA tends to infect people who have no ambition or self esteem, but try to get attention and assistance by acting sick.

I know none of you has the mythical version of Rheumatoid Arthritis. I don’t either. That’s the reason so many of us reacted the way we did to the Woman’s Day article this summer which treated RA a bit lightly. It seemed that the writer was confused about the real RA.

Fighting the misperceptions about Rheumatoid Arthritis is one front of our war because the mythical versions of Rheumatoid Arthritis just don’t raise much concern for a cure. There is no need to spend lots of money doing research to cure whining. And meanwhile, since people don’t know the truth about the real RA, they may not afford RA’ers the assistance that they require one on one.

This RA Warrior is also athletic. However, the real Rheumatoid Arthritis makes it fairly impossible to express that characteristic. But, today, I got to do it a little.

I got to swim for a few minutes. I absolutely love to swim. I taught myself to swim when I was 18 years old in order to conquer my fear of water. (I had been pulled out of the water by a lifeguard when I was 10.)

One day, I swam 110 laps in my mom’s pool. Of course, a lap was only 7 strokes. I would swim every day of my life if I were able.

Today, I swam a few light laps until my shoulders and elbows could not take any more. Then, I rested in warm sunshine. When I knew it was my last chance, I got back in the water to see if I could do just a bit more. My hip would not let me kick, so I swam a couple of laps pulling my left leg as a dead weight. It was my choice. I was ecstatically happy to do that.

Why?

Because I am not lazy or lethargic. I am not stupid, unmotivated, or whiny. I have the real RA which fights my athletic desires. And I fight back like a warrior. And always doing the best that I can is who I really am.

And, by the way, if you ever see me sitting on a sofa with my feet on a pillow, I am still doing the same thing: I am doing the best that I can do. But, you can bet I’d rather be swimming.

(If you have not read the fantastic comments posted by RA Warriors on the Woman’s Day website, you should! Here is a link. I just went there again and it reminded me that the readers of this blog are topnotch!)

Want more Warrior?

Inspiring story: A Summer Read for Rheumatoid Arthritis Warriors!

Or for a smile: Laughter as a Weapon Against Rheumatoid Arthritis

Thursday, August 20, 2009

Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

Adjusting expectations

Today, I have a treat for you – a visit from an extraordinary friend. She speaks with authority because she speaks from experience. In 1946, her body was attacked with polio from head to toe, even her brain.

She fought her way back and regained use of most of her body. However, several disabilities persisted. Today, she lives with Post-polio syndrome.

But these facts are not her best qualifications to talk to us about living with chronic disability and persistent pain. Let me tell you what I think those are:

Ms. R. is the most sincerely joyful person imaginable, even in the midst of difficulty. She was the first Non-RA’er I ever knew who had an obvious understanding my challenges. Repeatedly, her words have hit the nail on the head even though she had no clue what challenges I faced that day. So, whenever she gives me any advice, I take heed.

Recently, I asked Ms. R., “Can you tell us how to deal with people’s expectations as we become less-abled? How do you explain that you cannot do what you used to do anymore?”

Here is her reply:

The hardest person for me to convince is myself. I go through, as honestly as I can, a question and answer quiz of my "Yes, I can" and "No, I can't" appraisals. I still go through a guilt trip regarding the negative answers.

Fortunately, I have accumulated a number of years' experiences that help me. My physical situation does not stay static, so there is always the challenge and taffy-pull about being a malingerer or a coward.

When I finally come to as honest an appraisal as I can, I step out and either accept the challenge of the expectation, or I say, "I am sorry, but I cannot do that." If the other person is open to any further explanation of my answer, I share my processing. If the other person is not open to needing or wanting any further explanation, I say nothing further.

Whatever the outcome, I leave myself and any others concerned in God's care and loving wisdom. Those of us challenged to move our body, or to think clearly for more than a few minutes without resting, do have to work out rules that we can function by. We become sensitive to the people around us, because we thrive when they express confidence in our judgments of what we can and what we cannot do. Hooray for votes of loving and respectful confidence in us by others!

Then there are the times that people write us off according to their own perceptions. Take courage and lean on the Lord and those friends and family that He gives us. The only good thing about fighting to move or function is that we do learn to lean upon our Father's loving promises and presence.

Tuesday, August 18, 2009

Thumbnail Photos and Rheumatoid Arthritis Warriors

Real life RA'er meet-up

Something special happened to me yesterday. While on my trip, I got to meet a fellow RA Warrior in person. It was sweet.

I think we were both excited just to see each other in the flesh. It is great to get to see the real person behind the thumbnail photo. And even better to get a real hug.

We could also swap RA stories and compare hands. Stuff you can’t see in the thumbnail.

A couple of times, Cindy has been a source of encouragement to me. Of course, I am much happier encouraging others, as I’ll bet you are too. Oh well, maybe I will get my chance to be the encourager another time.

It was helpful to me to hear her tell about her process of acceptance of the Rheumatoid Arthritis diagnosis. We also laughed about the ridiculous cures that have been offered to us such as multivitamins. The visit was much too brief though.

Still, she earned the new handle “Pizza Dealer” after we spent half an hour trying to get a pizza delivered to my hotel. Finally, she ended up having to negotiate in person while she went to recover the pizzas. She seemed unflappable. What a fantastic lady.

I know that each one of you is a real flesh and blood warrior just like Cindy and I are. What a privilege it is to talk with you every day here on the blog. Until we can all meet in person, I will be thrilled with the thumbnails.

Monday, August 17, 2009

Is There a Typical Rheumatoid Arthritis

Complications to understanding Rheumatoid Arthritis

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

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

What is typical Rheumatoid Arthritis?

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

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

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

Questions need answers

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

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

The only thing that I am certain of is this:

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

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

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

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

Why is it so typical to have atypical Rheumatoid Arthritis?

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

Friday, August 14, 2009

Old and New Adages for Rheumatoid Arthritis


Unbreakable Laws?

Funny, here we are at the one of the most beautiful beaches in the world. And I haven’t seen it yet; it is pouring. Makes me think of Murphy.

Murphy’s Law: If anything can go wrong, it will go wrong.

When I was a little kid, my parents introduced me to Murphy and Murphy’s Law. We even has a little book with all of the corollaries and axioms. I learned Murphy’s Law was like gravity – an unbendable law.

Of course, when I was a little kid we put a man on the moon. And I watched on T.V. So much for gravity.

Murphy’s Law is a real law, like gravity. Things do tend to go wrong. This is a fallen world. But we repeatedly overcome gravity, don’t we?

Mottos

Murphy’s Law is not my motto. I have more than one motto, but most often I say, “PollyAnna was right.” Not the bogus version of PollyAnna so frequently mocked –but the real PollyAnna in the original book by Eleanor Porter. She used to look for a reason to be glad in every trouble.

In the story, PollyAnna’s father taught her to play the glad game as they battled poverty and the death of her mother. PollyAnna eventually lost her father too. I think PollyAnna knew about Murphy.

She just did not choose to let Murphy win. Before he died, her dad had explained to her that the Bible contains hundreds of commands to “be glad.” He figured that there must be a way to follow the command in spite of circumstances. So, he had invented the glad game.

My Modification of Murphy’s Law

I do not ignore Mr. Murphy. My Rheumatoid Arthritis has not given me the luxury of that much denial. I am forced to confront reality.

Rheumatoid Arthritis is like a dirty diaper: ignore it at your own risk. You really can’t do that for long. So, yeah, Murphy knows where to find me.

Murphy cannot be avoided. I do not want to give him too much credibility however. So, I say this: Murphy lurks.

I am aware of his schemes, but I have my ways of dealing with him.

By the way, the kids are having a great time with games in the cabin. And no one is sunburned. And did you see that rainbow?

Wednesday, August 12, 2009

The Harsh Journey of Rheumatoid Arthritis Requires a Pillow

Rheumatoid Arthritis Warrior Road Trip

The blog will be a bit different for the next few days. I will have to be on the road. But I hope you will be able to come with me – at least in spirit.

I plan to disclose more about the trip over the next couple of days. I will be sharing the driving with my bff. We will be bringing some daughters, too. There will be plenty of estrogen in the car. And chocolate.

The last few days have been very difficult physically. The Rheumatoid Arthritis in my neck (cervical spine) has been very inflamed. At times, I can hardly hold up my head and it brings blinding headaches with it. Also, knees and ankles.

I have been amazed at how God has helped me to get packed anyway. The girls have done a lot of it for me, but I still did much more than I thought I could. I was running on NSAIDs and adrenaline.

The adrenaline even let us catch a glimpse of the old me for a few moments:

I had bought this travel pillow a few months back. I frequently use it in the car, but still with the original plastic bag on it. I kept hoping to someday sew a pillowcase for it, which would make it a lot more comfortable. Of course, I had given up that for now since my hands hurt far too much to cut fabric.

Today, I was cleaning out a compartment in the ‘Burban and found a couple of fat quarters I had planned to return. That’s quilter-speak for a pre-cut section of material. Like skirt steak for sewers.

I opened them up and suddenly realized that 1 plus 1 equals 2! And two fat quarters obviously equals one travel pillowcase. With no cutting.

This evening, I followed my impulse and made my nice smooth case with French seams and a deep hem. It will be a good thing to have. I was glad to see that plastic bag go in the trash.

As useless as those fat quarters had seemed as they waited to be returned, they were exactly what I needed. I just had not noticed that. That is okay; they were willing to wait for me. (Lord, is there anything else you want to show me? Please make me ready to see.)

PB (post blog)
I will check in with ya’ll soon from the road. If you would like to see more frequent updates, please check in with the Facebook page; I usually make more frequent posts there. Or follow me on Twitter. Bon voyage.

Need more?
Why every voice about RA counts: The Invisible World of Rheumatoid Arthritis Speaks

Curious: What is the difference between Osteoarthritis and Rheumatoid Arthritis?

RA Tips: Practicing Preventative First Aid for RA

24 for Rheumatoid Arthritis Warriors

We Live With Rheumatoid Arthritis 24 / 7

I wanted to do a" 24" segment on RA to show what it’s like to live with it 24 / 7. I wrote this down a couple months ago, but I saved it for today because I wanted to post it right after the joint protection article.

Here is one hour in the life of an RA-er delivered in three minutes.

Warning: This will be annoying journey into Life with Rheumatoid Arthritis.

Think of it as an amusement park ride which you want to try, but you know will probably also exasperate you. If you choose to board this ride, please be aware that nausea is a strong possibility. Stay inside the vehicle until it comes to a complete stop. That will be in approximately 3 minutes. Enjoy the ride.

Last night I was awakened several times by noises in the house. It was not an intruder. It was my knees. I turned to my right side; neck clicking. I turned to my left; shoulder grinding. Back on my back to for deep breathing; no way to keep my elbow from touching the bed.

Anyway, I’m tired today. I feel like slept on the tracks while trains ran over me all night long.

Ouch. My knees are screaming. It breaks into my thoughts.

I am not hungry, but I will eat breakfast soon so I can take meds. That’ll help. And vitamins. Yeah, my cure. Just eat right and I’ll be fine…

Laundry left that I could not finish last night. After six p.m. I can barely move. Bending to open the dryer: POP! That was my hip. Opening the washer lid with the sides of my hands; my fingers are too weak. It pulls them out of place. Wet laundry is heavy. When I try to pull out one piece, the washer seems to pull it back. Oh my gosh! My big toe is screaming. Pulling the laundry with all my might, I’m dropping it down to the dryer door.

Starting a new load means soap. I got a little bottle, but it still weighs 40 pounds, to me anyway. I reach up to open the cupboard and my shoulder grinds loudly. I call out to my daughter in the next room: Did you hear that? I do my drop / fly trick: I get a hold of the handle on the soap bottle and let it drop down to the washer top: bang. It is falling by gravity and I just have to stop it from going all the way to the floor.

Grabbing the bottle lid with the whole hand, I ease it off. It’s not tight because no one else touches it besides me. I do my spill-pour trick: I put the lid low inside the machine and I spill down into it so I don’t have to lift the bottle to pour.

Drag up a load I sorted yesterday and push it into the washer. I turn the dials with my special technique using four fingers as if they were one; hoping to prevent ulnar deviation (turning toward the outside of the hand). I turn and bump my shoulder on the cupboard as I close it. It will not stop hurting in a few moments like it did once upon a time when RA was not 24/7. It will hurt more and be sore for a couple of hours.

There are laundry baskets between me and the door. I can’t step over them because of my hips, so I just step into them.

My toddler needs help to get dressed and make his bed. Slowly, I bend and pick up toys as I talk to him cheerfully about our day. I cannot fluff his pillow because my fingers are not able. I smooth the sheet the best I can and lay the quilt on top.

It hurts my fingers to use the drawer pulls. It’s as if the drawer pulls back, trying to separate my fingers from my hands. I get his clothes and sit down in the chair. My wrists are killing me as I hold out his pants for him to step in. Hurry up! I can’t keep my hands in this position for long. He wants juice.

I shuffle to the kitchen. Both hands grab the fridge door handle. I bend my knees and pull with all my might. It won’t come. OOf. Finally, it pops open. The orange juice is full. I cannot reach up and take it with a hand. I move whatever is in the way and reach up with both full hands and tip it into my arms. I hug the juice to the counter. I plop the bottle down.

Cups: Reach up or bend down? Up for a glass which seems to weigh 10 pounds or down to get a plastic cup. I always pick cup. Pop goes my hip and my knee. The sounds are usually accompanied by pain. The cups are stuck together and I cannot get one apart. One of my kids runs to the rescue. I could do the spill / pour with the OJ into the sink, but I have help and I gladly accept it.

My daughter pours some milk into a cup so I can add what I want to my cereal. I cannot pour from the gallon. She takes good care of me.

If you have RA, you may have nodded along with me. If not, try to imagine how annoying it would be to not only READ it, but to LIVE it 24/7.

This has been the beginning of a typical morning in the life of a Rheumatoid Arthritis patient. Many RA-ers are worse. Some are much better. I would have liked to bring you more of this morning, but no sponsors would agree to broadcast such dismal programming. As a matter of fact, this “half hour in the life” segment has been brought to you solely by Rheumatoid Arthritis Warrior.

Monday, August 10, 2009

What Is Joint Protection for Rheumatoid Arthritis

How can we protect our joints?

As soon as the initial shock of a Rheumatoid Arthritis diagnosis wore off, I began to search for ways to make my life as good as it could be. I was ready to fight. One of the things that we fight off is the deformity that is part of the RA package. We have talked about fighting medically. But I also learned very early in my searching that we can do other things to protect and preserve our joints.

I was so glad that I found an article on the Mayo Clinic’s web site about joint protection techniques. That led me to search for even more on the subject. I was shocked that my doctor had not told me that there were actually things that I could do that might help avoid some deformities caused by Rheumatoid Arthritis.

Many of the things on the list are actually things to avoid doing. I remember my own grandfather’s hands. He also had the RA genes. He is the reason that I understood easily what was meant when I read about “ulnar deviation.” I remember how his fingers all leaned out toward the ulnar / pinky side. What’s more, I even remember him doing some of the motions that are warned against in the articles I read!

When Granddaddy stood up, he pushed off using the backs of his fingers. That is a big no-no! He broke 2 rules at once:

(1) Don’t ever use small joints when you can use large ones. For example, he could use an elbow. Or better yet, a forearm and no joint at all.

(2) Don’t ever use the backs of the fingers to push because it drives them in the ulnar direction, encouraging that deformity.

I get plenty of funny looks, but when I stand up, I push off with my arms and let my fragile little hands and wrists alone.

Another one that has been a life saver for me is this: Never tightly grip anything. Do not pinch or squeeze or twist. Ever. Use a light touch. I use all my fingers together as one, avoiding any twisting motion whenever possible. This might mean I get a tool or get help. Often, it just means I’m slow and funny-looking. Whatever it takes.

Here is another basic principle that you can apply lots of ways: Use the largest joint you can to do any motion or no joint at all if possible. Sometimes, I will also go to a lesser used joint or one that does not hurt. You might use your whole hand or arm instead of fingers to carry something, for example. All of this requires that you think before you move. At first this seems awkward, but you can develop your own joint protecting habits pretty quickly and then it becomes more routine.


Here is one more technique I figured out: In describing ulnar deviation, an article stated that the movement to avoid is the motion that is like turning a key. I determined never to do that. At times, my hand was unable to turn a key anyway, so I had my kids turn the key in the car ignition – big thrill for them. Here is what I did: I got a huge key. (You can also get yours wrapped in rubber bands or tape.)Then, I grasp the key like an overhand baseball grip only more relaxed. I use my whole hand to turn the car key away from me. It does not use my fingers at all.

I recommend that you read the whole Mayo guide to joint protection, and Cleveland Clinic’s joint protection strategies for Rheumatoid Arthritis, too.

PS: If you are a “no pain no gain” advocate or believe in “use it or lose it,” you may be in for a surprise. The Mayo Clinic regards pain as a warning for Rheumatoid Arthritis patients to use caution and protect their joints: “Though you may want to work through your rheumatoid arthritis pain, doing so can aggravate the situation.” Similarly, Cleveland Clinic’s article states: “Respect pain. It is a body signal that is telling you something is wrong. Don't try an activity that puts strain on joints that are already painful or stiff.”

Tomorrow, see me in action doing joint protection 24/7.

Is This the Best Time to Have Rheumatoid Arthritis? Part 3: Response to RA Mortality Gap


How should we respond to the mortality gap?

Responding seriously

Rheumatoid Arthritis is an inflammatory disease. The progressive toll it takes upon vital organs is well documented. Science Daily: “Rheumatoid arthritis (RA) is associated with a high risk of early death.” Rheumatoid Arthritis requires the same serious response as breast cancer, diabetes, and heart disease.

Response by physicians

Physicians should not neglect to follow up symptoms in Rheumatoid Arthritis patients because they are “chronically” ill and have many ailments. RA-ers may be viewed as having recurrent and persistent complaints. Health care providers can begin to view them as whiners and neglect to investigate every complaint. However, high blood pressure, anemia, osteoporosis, and pneumonia are just as critical in patients who already plagued with Rheumatoid Arthritis.

Response by everyone

At this point, there is so little general knowledge about Rheumatoid Arthritis that RA-ers themselves must go through a period of learning about RA after diagnosis so that they can pursue proper treatment. Family members and society in general must also be educated about RA and the needs of those who have it. Too often, there are no modifications of expectations for those who are suddenly disabled by Rheumatoid Arthritis. That can make it difficult for RA-ers to obtain the assistance that they need.


Responding with research

Rheumatoid Arthritis also requires the same serious research attention as breast cancer, diabetes, and heart disease. Here are a few suggestions to use research to fight the Mortality Gap and make this a truly better time to live if you have Rheumatoid Arthritis:


  • Research ought to begin with a focus upon actual patients.

  • The target of most research ought to be a cure instead of symptom improvement.

  • The other goal of research should be learning to recognize early Rheumatoid Arthritis so that it can be diagnosed at an earlier stage.


Post blog personal note: I was thinking, it’s not like we hold anyone hostage and make these ransom demands. In fact, we are the ones who are held hostage – by RA! We feel pretty helpless. I also remember that Jesus said our response to the least in our world represents of our response to him.

Friday, August 7, 2009

Mortality and Rheumatoid Arthritis


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

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

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

Mortality Gap

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

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

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

Reasons

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

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

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

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

Sources quoted:
medscape
About.com
Science Daily


Thursday, August 6, 2009

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


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

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

"QUALITY OF LIFE"

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

How does Rheumatoid Arthritis affect quality of life?

Pain

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

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

Depression

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

Disability

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

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

Fatigue

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

Relationships

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

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

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

Outlook

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

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

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

Wednesday, August 5, 2009

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.

Tuesday, August 4, 2009

Good Living with Rheumatoid Arthritis book review

Can this bookcover claim be upheld? “Good Living with Rheumatoid Arthritis Is More Possible Now Than Ever Before!”

I’ve been putting off this book review post because I am afraid I’ll sound negative. Why do I feel like I am obligated to praise the book because it is published by the Arthritis Foundation? Is it a sin for an RA-er to criticize the Arthritis Foundation?

Whoever wrote the cover certainly flattered the writers. Wish I agreed. Here is what they claim is inside:

Front cover: “Find the Tools You Need to Ease Pain, Reduce Joint Damage, Improve Mobility, Relieve Stress.”

Back cover: “In this book you’ll discover… Easy ways to improve your flexibility, reduce pain and stiffness, and manage stress.”

Here’s what I did not like:

The tone is impractical: I felt like the writers have not met anyone living with moderate to severe Rheumatoid Arthritis (a large percentage of RA-ers).

Some information is already outdated since science moves fast and the internet keeps up better than books can.

They gave too much print to the notion that Rheumatoid Arthritis pain is subjective and can be controlled by techniques like mental imagery and self hypnosis.

They presented an unrealistic view of exercise, even using the dreaded phrase “Use it or lose it.”

Have you ever heard of “rheumatoid personality”? Some doctors believe it is the source of Rheumatoid Arthritis pain, would you believe?

There’s more, but I want to keep this short. So, just one more thing: it’s printed on really heavy paper, so it’s too heavy to hold in our hands.

Here’s what I did like:

They expect doctors to talk to patients like real persons, even providing forms to prepare for appointments. However, they do not come with any guarantee of doctor cooperation.

They approve of the use of narcotics for Rheumatoid Arthritis pain which is not controlled in other ways. This has been a controversial topic over the years. Perhaps that is related to some of the concepts discussed in the last section. What is controversial about pain control? Nothing, if the alleged pain is seen as actual pain.

I infer that they envision RA-ers as managers of their own RA treatment programs. Although there is much resistance to this idea in the medical community also, it is the only legitimate basis to “Good living with Rheumatoid Arthritis.”

The book includes a few short vignettes from actual RA-ers. This is probably the best part. It is almost like getting a little page from a blog. They are more realistic. One nurse even tells how RA made her blind in one eye and affected the adjacent ear.

Of course, I also like the promises on the book cover. Too bad they could not really deliver on them. They should not feel bad about that; “Easy” answers for RA would be impossible to deliver. They do not exist. That is not the fault of the text writers. They just need to find more accurate cover designers.

All I can say is, I wouldn’t want to be a lawyer defending those cover claims in court.

Post-Blog: If the comments on exercise were startling to you, please read this post on Exercise. And coming soon: Should RA-ers Exercise? Part 2. If the comments that RA is a serious disease sounded surprising, you might read Can Rheumatoid Arthritis Kill You? If you are adjusting to life with RA, I suggest Shifting Sand.

Monday, August 3, 2009

From My Private Dictionary for Rheumatoid Arthritis


To me, it’s fun to coin a new term. So, I have been guilty of making up words for the blog as I go along. I have printed for you here an excerpt from my private dictionary. It’s only fair!

~ Appointment disappointment: n. 1: a despairing feeling which often occurs after a medical appointment; 2: often a result of feeling misunderstood or having been treated with skepticism by a doctor or technician

~ Bee sting: n. 1: pet name for injection site reaction; 2: red, itchy, hot , and hardened skin surrounding injection site

~ Courses of RA: n. 1: any of several various patterns which Rheumatoid Arthritis may follow in an individual patient; 2: Although the course of the disease is progressive in most patients, there is much variation in the pace and range of destruction; specifically, patients differ as to how often flares remit or how many joints are involved

~ Delusional response to RA: n. 1: Unreasonable behavior by Non-RA-ers with regard to Rheumatoid Arthritis caused by assessment that Rheumatoid Arthritis is not a painful, crippling, and progressive disease; 2: behaving as if RA-ers are able to do things that they are not able to do; 3: related to denial

~ Dr. Dolittle: n. 1: a physician who does very little to help patients because of a lack of understanding of the impact of Rheumatoid Arthritis; 2: aka Dr. Do Very Little

~ Full blown RA: n. 1: Rheumatoid Arthritis which does not remit; 2: Rheumatoid Arthritis which affects enough joints to make a normal life impossible

~ Hysterical woman diagnosis: n. 1: ludicrous remarks written into a medical record which imply or state that a patient of either gender is crazy and not physically ill ; 2: misdiagnosis of a woman based upon erroneous assumption that she is malingering

~ Leftovers: n. 1: pain, stiffness, and other symptoms experienced by an RA-er after disease fighting medication has been applied; 2: leftovers require additional disease management

~ Preventative first aid: n. actions taken to prevent injury or illness, specifically as it relates to chronic illness or a compromised immune system

~ Patient protection plan: n. similar to witness protection plan; secret identity for patients who do not co-operate with medical establishment

~ Pyramid of Treatment for Rheumatoid Arthritis: n. 1: the use of mild symptom relieving drugs as first-line treatment for Rheumatoid Arthritis, followed by gradual steps toward stronger medicines; 2: saving the most effective and modern medications until Rheumatoid Arthritis has already caused a great deal of damage; synonym: old school

~ RA-er: n. 1: also spelled RAer; a person diagnosed with Rheumatoid Arthritis; 2: preferred term to Rheumatoid Arthritis sufferer or Rheumatoid Arthritis victim 3: contraction of RA warrior

~ Surge (also: treatment surge): n. the early use of DMARD combination treatments for Rheumatoid Arthritis, especially including Biologic drugs to attempt to slow disease progression and limit or prevent damage caused by RA ; antonym: traditional Rheumatoid Arthritis treatment pyramid

~ Under-diagnosis: n. the tendency of physicians to diagnose Rheumatoid Arthritis as a less serious diagnosis

~ The Wall: n. 1: a barrier which obstructs productive communication about Rheumatoid Arthritis; 2: Non RA-ers may put up the wall because of denial of some aspect of the disease or because of fear of discussing an illness that is mysterious to them.

And that is only an excerpt! We’ll put the whole thing up on the website someday soon. If you’d like to read more Rheumatoid Arthritis Warrior, I recommend:

Classic RA Warrior: RA Can Leave You Stuck in Orbit

Corny elephant post on vitamins: Tickles, Trunks, and Nutrition

Friday, July 31, 2009

Rheumatoid Arthritis Warrior on the Road, part 2: FIRED!

Here is another chapter in my life as a professional patient.

The other day I set out on one of my regular pilgrimage days. There are several of these days every month. This time our first medical appointment was the ophthalmologist. My son and I made it to the car by 8:30. It is hard to move first thing in the morning.

When we arrived, there was the typical new patient pack to fill out for my son. (I was an established patient.) I used own my own pen because it is light enough for me to hold. As I filled out the first 2 blanks, I was tickled with myself. My handwriting looked familiar. It looked like my own handwriting. I said, “Hey my hand must be doing okay today. I haven’t seen that handwriting for a while.” It made me smile.

That lasted less than a minute. My fingers got tired and started to slack off. That lasted the next minute. Then, my fingers hurt too much to write. So, I scrawled as little as possible as quickly as possible. I got my son to fill out part and turn it in for me.

Soon we were off to the back for lots of tests with funny contraptions. What is that thing we looked in to view a hot air balloon? The girl said she could see how I see and measure my prescription automatically.

I got to wear a trial pair of custom-made specs. Like the look? I told her they were lovely, but I couldn’t buy them because they were just too heavy. Too much stress on my neck.
They are really nice at that office, but after 2 1/2 hours, we were eager to leave.

On the road again… a list of blood tests and a much overdue TB test.

However, I can never resist the pit stops that are “right on the way anyway,” like the Sam’s club which had finally opened in our county. Usually, we go to Sam’s an hour away from home. Who could resist a Sam’s club “on the way”? I do buy milk and eggs and juice for 7, after all.

At Sam’s, my son does most of the lifting. However, it is not easy to be idle. Stubbornly, I lift a gallon of milk and shout out to him to catch it as it falls. He’s seen that before, so he’s fast on his feet. Nice save, son!

My hip, my knees, and my elbows are not enough. My feet are screaming by now. I keep telling my son, we have GOT to hurry and get out of here! It has gotten to the point where I am wondering how I’ll make it to the car.

Yummy rotisserie chicken samples remind us it’s lunchtime. Mmmm.

Checkout. Membership card. Double-take. “Is this YOU?”

“Yes,” I say.

“Nice picture. Pretty hair. Doesn’t look like you.”

I pretend I did not hear, “Hmm?”

“The hair was very pretty. You don’t look like that anymore.”

I pretend I am not hurt. “It is raining. I put my hair up to keep it dry.”

I lean on my son as I shuffle and drag my feet to the car. We are trying to fit the milks into the cooler when we realize: EGGS! I fall into my seat as he unloads the rest.

Heroically, the young man goes back inside with my cute-hair card and some cash to pick up a couple cartons of eggs. I pull off my sneakers and moan loudly since no one can hear me. I relish the comfortable seat of my Suburban.

The door-keeper was not sympathetic to a teenage boy running back in without his mom. Oh, well. On with the shoes. Slow drag to the door. Door-keeper smiles, “We can let you use the wheelchair.”

“Thanks, but I’ll manage.”

“Go ahead really, you shouldn’t feel bad. Your problem is only temporary. It’s not like you’ll need it for long.”

“Huh?” I breathed. “No,” I smiled. I wonder whether I should say more. “This will probably get worse, not better.”

I got straight into a checkout line while he ran off for the eggs.

One more thing is right on the way to the lab and home. Friend just out of the hospital. We’ll stop for only a moment since I have food in the car.

The doorknob is hard. It’s locked. Knocking is painful. The step up is hard. Several minutes of standing to make small talk. I look for something to lean upon. God, help me. My elbow, my feet, my knees are killing me. I breathe very deeply and shift my weight. My hip!
Finally, struggling to the car. Shoes off. How will I ever make it home?

Fifteen minutes. Home at last. I gather up as much as possible: papers, books, shoes, cup, purse, keys... “Momma stop! You don’t have to carry all that.”

“I know, but I can’t come back to take any more,” I protest, staggering into the house. Collapse upon the sofa. Absolute exhaustion. Finally at rest, I become conscious of how many places I hurt. Every joint is sore.

Breathe relief to be finished. “I’m sorry, hunny. We never got lunch! It is 2 o’clock.”
But, I am wrong; I did not finish! I realize I never made it to the lab!

I guess I am not a very good professional patient anymore. Do you think I can get fired?
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