Rheumatoid Arthritis Warrior

RA Warrior has moved to rawarrior.com

2009-09-08T21:23:00.003-04:00

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

What is Remission of Rheumatoid Arthritis, Part 3

2009-09-04T08:02:00.003-04:00

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”?

What is Remission of Rheumatoid Arthritis? Part 2

2009-09-03T08:38:00.000-04:00

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?”

What is Remission of Rheumatoid Arthritis?

2009-09-02T09:10:00.003-04:00

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.

Some Answers for Rheumatoid Arthritis Just Bring More Questions

2009-09-01T11:50:00.006-04:00

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.

Working and Rheumatoid Arthritis

2009-08-31T09:32:00.008-04:00

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?

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.

Woman’s Day Reply to Rheumatoid Arthritis Comments

2009-08-28T09:43:00.011-04:00

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

Blood Tests for Rheumatoid Arthritis, part 2

2009-08-27T08:00:00.009-04:00

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.

Is there a blood test for Rheumatoid Arthritis? Part 1

2009-08-25T23:25:00.008-04:00

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:

Book: Rheumatoid Arthritis by St. Clair, Pisetsky, and Haynes;
University of Maryland Medical Center;
Abstract from ClinicalRheumatology;
American Family Physician

The Truth About Rheumatoid Arthritis Will Be Told!

2009-08-25T08:28:00.018-04:00

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)

Should Rheumatoid Arthritis Patients Exercise, Part 2

2009-08-24T07:40:00.006-04:00

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.

Stunning video: How Rheumatoid Arthritis Impacts Lives

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

2009-08-21T08:00:00.010-04:00

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

Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

2009-08-20T08:00:00.009-04:00

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.

Thumbnail Photos and Rheumatoid Arthritis Warriors

2009-08-18T22:00:00.002-04:00

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.

Is There a Typical Rheumatoid Arthritis

2009-08-17T10:58:00.014-04:00

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.

Old and New Adages for Rheumatoid Arthritis

2009-08-14T14:14:00.009-04:00

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?

The Harsh Journey of Rheumatoid Arthritis Requires a Pillow

2009-08-12T23:38:00.005-04:00

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

2009-08-12T08:00:00.002-04:00

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.

What Is Joint Protection for Rheumatoid Arthritis

2009-08-10T23:53:00.005-04:00

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

2009-08-10T07:00:00.002-04:00

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.

Mortality and Rheumatoid Arthritis

2009-08-07T09:07:00.007-04:00

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

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

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

Mortality Gap

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

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

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

Reasons

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

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

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

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

Sources quoted:
medscape
About.com
Science Daily

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

2009-08-06T08:00:00.005-04:00

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

Love of Challenge and the Rheumatoid Arthritis Speed Limit

2009-08-05T07:00:00.002-04:00

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.

Good Living with Rheumatoid Arthritis book review

2009-08-04T08:00:00.001-04:00

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.

From My Private Dictionary for Rheumatoid Arthritis

2009-08-03T08:00:00.003-04:00

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

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

2009-07-31T08:47:00.005-04:00

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?

How Rheumatoid Arthritis Impacts Lives

2009-07-30T08:00:00.009-04:00

What kind of an impact does Rheumatoid Arthritis have on a life?

It seems impossible to explain all the impact that Rheumatoid Arthritis has. On a good day like today, I can hardly believe what I have been through myself - although I have lived it. This video bears out my memories. It has been real. And it also proves I am not alone.

Hearing the men always makes me sad. I was especially moved when the first guy said he “always has to depend on someone now.” Ouch.

Of course, the person that I identify with the most is the mum with young children. Let’s paint what she said on a billboard! “There is nothing normal in our lives anymore.”

Many tell me of family members or friends who just cannot get their minds around the ways that Rheumatoid Arthritis changes our lives. Listen to what else the lady said, “I would like them to really think that there are some people in this life that can’t even lift the duvet over themselves when they are really ill. And it’s difficult to understand that lack of strength.”

Indeed. It is difficult to imagine. And yet I remember when I could not pull up the duvet. Sometimes, I cannot take hold of anything, even a thin bed sheet. Like the girl in the video, I remember not being able to eat because of my jaw. More recently, my jaw would open, but I could not hold utensils and had to eat with my hands.

Today, someone told me the story of a lady rheumatologist. She considered herself to be extremely compassionate and gentle, suggesting exercise would help her patients. She saw herself as empathetic and kind. She thought that she understood Rheumatoid Arthritis as well or better than her patients did. And then, one day...

She got RA. And apparently, it was the severe Rheumatoid Arthritis that does not remit with treatment. She was embarrassed at her prior advice. She realized that she had been insensitive to her patients by not realizing the impact of RA on their lives.

She now realized that she had previously been insensitive. She concluded that no one can comprehend Rheumatoid Arthritis unless they have it. Sometimes, it really does seem like contracting RA is the only way.

But we can still try. I certainly tried all day again today. Several remarkable conversations left me hopeful.

Weathering Rheumatoid Arthritis

2009-07-29T08:00:00.002-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parvovirus B19 and Rheumatoid Arthritis: Who is the real fraud?

2009-07-28T08:03:00.014-04:00

Does human parvovirus B19 Cause Rheumatoid Arthritis?

There is a counterfeit Rheumatoid Arthritis. But it is only a pretender, so it doesn’t inflict the harm that RA does. It is like a shadow boxer. However, the pain is real – for as long as it lasts.

Human parvovirus B19 is a common childhood virus. It causes Fifth disease, a minor childhood disease which is similar to the measles. There are usually cold symptoms and a low grade fever. There is often a rash on the face which is bright red. It is called “slapped cheek.” But, it’s often so not simple in adult women.

Parvovirus often mimics Rheumatoid Arthritis, causing pain, stiffness, swelling, and disability. Approximately 60% of women who get B19 contract the sudden arthritis in multiple joints. However, children and men who are infected with parvovirus do not usually suffer from such arthralgia.

Normally, joint symptoms last only a couple of weeks. However, in a small percentage of patients, they may last for several weeks to several months. There is also initially a distinctive rash on the trunk and limbs which looks a lot like lace.

Several studies have been done to investigate whether parvovirus B19 is in any way connected with actual Rheumatoid Arthritis. However, they have concluded that it probably is not.

Consider this: the percentage of people who have the B19 antibody (showing they have had the virus) is about 50%. Similar numbers have been shown for Rheumatoid Arthritis patients. If B19 were the cause of Rheumatoid Arthritis, 100% of RA patients would have had the virus.

Studies continue to examine whether parvovirus B19 could be one trigger for Rheumatoid Arthritis. Also, B19 may behave differently in people who have RA. It could be one of those “chicken and egg” questions.

Double Déjà Vu

Researchers say they don’t know what causes human parvovirus, but I met a doctor once who says he does know. In 1998, when my family contracted the disease, I went to an urgent care center on a Sunday. Every joint, especially my cervical spine, was inflamed. I could barely move. I had no idea what was wrong with me. I was terrified. The lacey red rash covered my legs.

The doctor took one look at me and he knew what was wrong. I guess it was too traumatic to tell me to my face since he decided to tell my husband first. He said he was sure he was right.

He told my husband that my joint pain was nothing to worry about. It was caused by my imagination. Yep. Simple as that. And the rash? He looked right at it and said that it did not exist. Whew! According to him, I was not sick; I was a fraud.

Double déjà vu: I wish I could report that he was the worst doctor I have ever met. Unfortunately, though, I have been through the exact same process a few times with regard to Rheumatoid Arthritis. It has been a double déjà vu. First, with the arthritis symptoms; and then, with the “hysterical woman” diagnosis.

Postscript: It was a classic case of parvovirus.

I did take my kids to the pediatrician the following week when they developed the classic B19 symptom of “slapped cheek” rash. My kids were easily diagnosed with the highly contagious “fifth disease” which is caused by human parvovirus. The docs got all excited about how closely our case replicated the photographs in their books.

More information on human parvovirus B19:

Center for Disease Control factpage

Images of fifth disease in a French gynecological journal

A children’s health blog on fifth disease in kids

One study which examines whether parvovirus B19 causes Rheumatoid Arthritis from Annals of Rheumatic Diseases

More Rheumatoid Arthritis Warrior:

What Causes the Fatigue of Rheumatoid Arthritis?

Rheumatoid Arhtritis and Depression

A Memo to Non RA-ers / If you do NOT have RA, please read this

Rheumatoid Arthritis in the News: Rituxan Success

2009-07-27T08:27:00.011-04:00

Mountain Climbing With Rheumatoid Arthritis

Every day I peruse articles and journal abstracts, updates and tweets about Rheumatoid Arthritis. Maybe that is why I get so behind with emails or other blogs I’d like to read...
I think I am straining to see the future. What is next around the bend? From where will our cure come?

Anyway, a couple of weeks ago, I found this great article in the UK Mirror online. I am so happy to share with you this positive example of RA in the news. Kudos to Caroline Jones who wrote this is marvelous story of Wendy Dawley, a 33 year old RA-er.

According to the story, Wendy was the ripe old age of 30 when Rheumatoid Arthritis reared its ugly head. She just woke up one day and “Every joint in my body hurt – my neck, elbows, shoulders, even the balls of my feet. I couldn’t put my feet on the floor to stand up… It felt like severe bruising – or as if I’d been beaten up.” Sound familiar to any of you?

Why does it feel so good to see that in print? Maybe RA-ers have just had it with people acting like we are not very sick. I cannot tell you how many times people have thanked me for just voicing what they are experiencing. I know how they feel; I want to send flowers to Ms. Jones.

Miss Dawley was shocked by how suddenly the Rheumatoid Arthritis disabled her. She had thought that Rheumatoid Arthritis was what happens when you get old. Unfortunately, she learned otherwise. “There were times I couldn’t even get up, let alone go to work, meet friends or do any exercise. My social life ended. It was so bad I had to move back in with my parents, because I couldn’t look after myself. I felt like a child.”

Happily for Wendy, she was able to get into a trial for Mab Thera (called Rituxan in the US) three years ago. These are the brand names for rituximab. Rituximab was originally created to treat B cell lymphoma. It depletes B cells, a type of white blood cell (also called lymphocytes), by inhibiting the protein CD20. B cells are one link in the inflammation process of autoimmune diseases like Rheumatoid Arthritis.

Rituximab is used in cases of refractory Rheumatoid Arthritis, meaning that the RA has not been brought under control by other treatments that usually work to reduce symptoms (like TNF blockers such as Humira and Enbrel). It is administered by intravenous infusion which can take several hours. After 2 doses, it is not given again until the patient’s RA flares. It is used in conjunction with methotrexate.

How does Wendy feel about living her life on chemotherapy? “Long-term I presume I’ll always be on some kind of treatment, but it’s a small price to pay for getting my life back.” She describes herself as “transformed.” In fact, on a recent vacation, she went mountain climbing! No wonder her story was uplifting!

The story of Wendy Dawley’s Rheumatoid Arthritis has lots of common themes. Let’s hope we can make her happy ending more common, too.

Note: Here is a link to read the entire Mirror.co.uk article. There is not a comment box on the Mirror website, so I sent them an email to thank them for the accurate and hopeful article. Here is the email in case you want to do the same: mailbox@mirror.co.uk

Can I Delay Treatment for Rheumatoid Arthritis? part 2

2009-07-24T20:35:00.008-04:00

Is it safe to delay treating Rheumatoid Arthritis?

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

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

Fear:

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

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

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

Uncertainty:

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

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

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

Remitting RA:

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

Hopelessness:

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

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

Denial:

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

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

More?

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

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

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

Can I Delay Treatment for Rheumatoid Arthritis? part 1

2009-07-23T18:12:00.007-04:00

That depends, can an ostrich heal thyroid disease?

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

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

Can we talk about delaying treatment for Rheumatoid Arthritis intentionally?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

After about a year, I recovered fully.

Some things changed after that:

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

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

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

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

Laughter as a Weapon Against Rheumatoid Arthritis

2009-07-22T20:34:00.005-04:00

A Fish Story

If you have read many Rheumatoid Arthritis Warrior blog posts, you have already realized that laughter is a critical part of my arsenal to fight RA. Sometimes, some of my friends and I try to out-funny each other. It is a one-upping game. The loser is the one on the floor laughing first. Hey, wait! I think SHE is the winner!

A while back, one of my best laugh-mates sent me her reaction to a blog. It was the blog about how some people think a good hair day means the Rheumatoid Arthritis is cured. I think she was trying to figure out what she would say if she had to deal with peculiar comments like that.

“I have started taking a sandwich size Ziploc bag with ice in it to church for my painful hands. At greeting time I don’t mingle and shake hands, I sit in my seat, and when people come up to me I indicate to them my hands are too painful to shake. After the service I carry out the little baggie of melted ice, and when people ask me what I have, I tell them it’s my pet goldfish. So help me, if one of those difficult people are brave enough to approach me, I will act upset to see no goldfish, tell them where I was sitting, and ask them to find it for me . . . please, before the poor thing dies. . . . .!!!”

Actually, it sounds like she would have fun if one of “those people” ever addressed her!

Maybe we need to give this approach serious consideration. It might help us in our fight to dismantle “the Wall.” Let’s back up just a bit:

Here is a typical sequence. First of all, something about what we say or what we do does not measure up to someone else as being ordinary / normal. However, since our illness is invisible, it does not make sense to others. Then, someone who is ignorant about Rheumatoid Arthritis makes a churlish remark. We feel insulted.

Now is the fork in the road. We choose how to respond.

1) We can refute their ignorance. And then they can choose to either accept or deny our offering of truth and science about RA.

2) We can ignore their comments, privately either brooding or forgiving.

3) OR, sometimes, we can break the tension with laughter. Laughter is proof that even though our bodies are riddled with Rheumatoid Arthritis, we are also normal folks (with feelings).

And sometimes, laughter puts a little crack in that wall, too. Maybe we can talk to the person through the keyhole and teach them about RA after all. Let’s see whether cracking up can trump a wisecrack.

Note: “the Wall” is my term for the barrier which can block productive communication about Rheumatoid Arthritis. Most often, people throw up the wall because of denial. To read more about the Wall, click here.

Also recommended:
So Glad Your Rheumatoid Arthritis Is Cured and Be Your Own Counselor With RA

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

2009-07-21T16:55:00.010-04:00

Why is it so hard to get a Rheumatoid Arthritis diagnosis? RA-ers ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:

There are some familiar themes there:

Minimizing:

Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one RA-er who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.

Ignorance:

Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many RA-ers are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.

Under-diagnosis:

Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.

Consequences:

Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

Recommended reading: Diagnosing Rheumatoid Arthritis
RA Warrior’s RA
It’s Okay to Laugh if You Have Rheumatoid Arthritis

The Rheumatoid Arthritis Self-definition Fairy

2009-07-20T19:58:00.011-04:00

Does Rheumatoid Arthritis define us?

Recently on the blog, Noelle wrote about a warning from her nurse friends to not allow Rheumatoid Arthritis to “define” her. I could not respond to Noelle adequately in the little comment box. Don’t you feel cramped in there?

Here’s Noelle:

"A couple of my nurse friends have told me to not allow the RA to define me. I haven't totally wrapped my head around that concept and how I go about doing that, but this week I think the RA is calling the shots."

Actually, I already had an outline for a post on “defining ourselves” squirreled away in my files. So, change of plans for today. Let’s go ahead and face down one more phantom!

What or who defines us? Does RA hinder or help the matter?

Let’s look at it.

Defining oneself is a primary psychological occupation during youth. I have loved watching my own nineteen year-old to do that. Even her mundane choices are important as she is defining herself. She picks out everything from favorite foods and clothing styles and music to Bible verses to help her identify herself. Yes, her values are reflected by her choices. But she is also marking out a plan for who she wants to be and how she will be identified by others.

When we are young, we explore and choose what we want to use to define ourselves. I have enjoyed watching my daughter do it because it triggered memories in me of making those choices. It is an empowering feeling of youth: that you can define who you will be. It is an enjoyable time. Our goals tend to be ambitious and fearless.

During the next stage of life, the wonderfully productive middle years, mostly we define ourselves by what we do. Our occupations and responsibilities and our influence equal who we are. At least we think so. This is legitimate, too, in some ways.

But there are drawbacks. Eventually, as we near retirement, most of us must re-evaluate those definitions once again. Ever heard of a mid-life crisis? Or empty-nest syndrome? What are we apart from our accomplishments and qualifications?

If things go well, we generate more significant ways to define ourselves when we are older. Life eventually forces us into that. We learn to emphasize more mature aspects of our character and preferences. I think it is similar in some ways to the first stage because there is less focus on performance.

RA-ers are blessed. We get a shortcut to the subsequent stage of self definition. It’s like the self-definition fairy comes one night and makes a trade. You know how the tooth fairy trades baby teeth for a quarter? Well, the RA fairy just takes away many of those things which we do that we think best define us. One day we are running our lives just fine and then… poof! Gone.

What are we when we no longer do the things that defined us? When there are no more masks or props to help us define ourselves? We are whatever it is that we truly value. We are whatever it was that motivated us to do the things that we did when we could do them. We are our character and our spirit.

Actually, Noelle, a woman said that to me too once. It was when I was first diagnosed. And it has haunted me, too – until today. Next time someone tells you not to let Rheumatoid Arthritis define you, tell him about the RA self-definition fairy.

The Rheumatoid Arthritis Warrior's RA

2009-07-19T21:45:00.013-04:00

The Rheumatoid Arthritis Warrior blog is not about me. But this one is.

This blog is not about me. It is about fighting Rheumatoid Arthritis. I DO have RA, but you know what I mean. Of course, I can only show you the world through my own eyes anyway. However, today I will focus on my own RA.

You have been warned…

If you are still reading, I assume you don’t mind hearing a little about my own experience with Rheumatoid Arthritis.

My RA has affected every joint. And other bodily systems. I know that several of you are like me. You have sent me your stories.

Also, I had symptoms of Rheumatoid Arthritis which would flare and remit for about 27 years. That is until that fateful day on which it became what I call “full-blown.” I know several of you are with me there, too. (See Palindromic RA.)

For the past three and a half years, the Rheumatoid Arthritis has been without a remission. There has not been a single moment without its pain and stiffness and disability. The only variety from day to day is the number of affected joints. It usually ranges from 7 to about 15 joints at a time.

I know I am not utterly alone there either. (See the 4 Courses post.) As you know, studies on Rheumatoid Arthritis have not been adequate to sufficiently document or understand the disease. However, another report I just read confirms that 10 to 15 percent of what I call “RA-ers” are like me: no remissions. No flares. Just Rheumatoid Arthritis. 24/7.

The UK report calls this course of RA “Unrelentingly destructive.” (To view report, click here; then click “full report” and scroll down to page 4 for diagram. Thanks to Angela at FunkyArthur for helping me find that.)

So, some days are hard days - yeah. However, the other days are harder.

Again, just like so MANY of you have written to me, I do not complain. If I were to do that, complaining would fill my days. And if I did complain, who could believe there is this much RA?

Even before I got sick, I always said this to my family: “I am sorry. I tried not to be a person.”

This is what I meant by that: To not ever articulate any pain. To not ever be too tired to say “yes.” To not ever fail. And, by the way, a few of you have confessed the same thing to me in your messages, too.

Of course that is ridiculous! And I can hear my friend from Oz telling me that it is probably pride that made me think that way. Anyway, as hard as I tried not to “be a person,” I am. And you are, too!

Consequently, as hard as I try to avoid it, sometimes, the blog is about me. After all, I am the person who writes it.

I confess: I am a person who is fighting Rheumatoid Arthritis. And I have insurance issues. And I am trying to find a new doctor. And I am struggling like the dickens to get my website published which I have been working on for a couple of years. So, if you think of it, could you pray for me, too?

Postscript: This weekend, I took time to catch up on a couple of RA blogs. (Isn’t it grand there are so many that I can’t keep up?!!) I have even found 2 this week which use the word “warrior” when discussing Rheumatoid Arthritis. Our movement definitely continues to gain momentum. Fight on! (More on “warrior” in an upcoming post…)

Chicken Soup for Rheumatoid Arthritis Warriors

2009-07-17T20:27:00.011-04:00

Today Rheumatoid Arthritis Warrior is 2 months old on the web. It is much, much older in my own computer... But we don’t need to tell our true age right?

RA Warrior is unique
The Rheumatoid Arthritis Warrior website is as unique as I am. It is impossible to duplicate sincerity. This blog is a true reflection of my own fight. God has made each one of us for a particular purpose. It cannot be duplicated.

Only the beginning
This blogspot page is only the beginning. Soon, you will be able to see what I have been visualizing for a long time. However, watch for a few “Danger: Under Construction” signs as we endure any growing pains.

Hard work
Working on RA Warrior has been extremely challenging, but rewarding work. My own life has been affected by many of you. Comments, emails, messages, and some of your own blogs remind me daily of why I do this and help me keep fighting.

Overwhelming gratitude

Here is part of the list of what I am thankful for:

Meeting exceedingly beautiful people;

Knowing I am not alone;

Having a good use for my perseverance and determination.

I am also thankful that the Rheumatoid Arthritis Warrior blog has continued to grow through what is called the summer dry spell for the blogosphere. Even with this timing, RA Warrior has over 5,000 page views and 33 splendid members. Are you a member yet? We have also gained over 200 Facebook fans in only one month. (Are you a “fan” yet?) Usually that requires advertising or an outside source of promotion. We are just us. You and me!

Woman’s Day Update

I was blown away by the way you responded to the Woman’s Day article on Rheumatoid Arthritis! Your comments were good enough to be whole blog posts! I will try not to be intimidated by how clever ya’ll are!! (To read their article & comment on their website, click here.)

What’s new here?

I have added twitter to the blog. You can follow me there to see what I am up to (in the few moments when I am not writing – hahaha). A few folks have asked about linking to RA Warrior or tweeting about our pages. PLEASE tweet and link away. We want to share!

I have also installed copyright statements. Basically, the point is “NO fishing.” Of course, I know none of you friends would! But, I want everyone ELSE to know that I have already been working with the U.S. Copyright Office to get numbers to register my work, which is already protected by law.

New to RA Warrior?

After you have read posts, I recommend you check out the “comments” sections. Many are rich with information and passion! We’d also love to hear your views, so add them. Even “older posts” are only a few weeks old. They are still relevant and folks stop by and check them out all the time. (I’ve seen the Google data.)

All in all it has been a good birthday. Only a few new wrinkles. Let’s have some cake.

Recommended reading:
a little about why I blog: RA W’s One Month Birthday
a little about me: My Angel Gabriel
for a quick laugh: Dr. Dolittle

A Message from a Young RA Warrior

2009-07-16T18:14:00.010-04:00

Wait, hope, pray, and…

Hello, everyone. My name is Katie Beth Young and I have a few words for those with AND without a Rheumatoid Arthritis diagnosis.

You might have read my mom’s post called The Me Before Rheumatoid Arthritis. Next month, I’ll be 17 so I remember the stucco days. I remember the landscaping, the hundreds of perfectly frosted and decorated cookies for a baby shower, the Christmas decorations and delicacies, the spick and span house, etc. I was the little kid in the overalls in one of the pictures from that post. I know firsthand what Rheumatoid Arthritis can do to someone’s life.

My own life has changed also in so many ways. I must be strong for my mom as we wait for a cure. Even though sometimes I truly feel there’s nothing I can do, I try to find as many ways to help as possible.

Margaret Becker is my very favorite music artist. She has a song called “I Won’t Be Persuaded.” If you don’t mind, I’d like to quote the chorus: “I don’t understand where you are in all this. Still I wait and hope and pray, and I won’t be persuaded…” That’s what we do: We wait for a cure, we hope for a remission, and pray for strength.

Sometimes there’s nothing else to do. But, I think maybe in this situation there’s one more thing: Act. We can act.

Those who have Rheumatoid Arthritis need to bring awareness to the rest of the world. They are the only ones who can. They have to make the doctors listen. They need to let those who do care help them. They need to fight! I am not in the position to tell them what to do, but doesn’t it seem hard enough to have RA without all that, too?

However, I AM in the position to speak to everyone else. Action needs to be taken by those who love people with Rheumatoid Arthritis. More than one type of action. I know you didn’t ask for your loved one to become disabled and sick, but they didn’t ask to BE disabled and sick either. Here are a few examples of the things I do to try to help.

I go with my mom on her errands and especially to her doctor’s appointments. While being encouraging is important, I find comfort in actually helping physically. Whenever we are out, I offer to take my mom’s purse for her. If you have RA, you know how heavy even a lightweight purse can be to an affected shoulder, wrist, hand, etc. Some doors are so heavy that no one with Rheumatoid Arthritis would ever get in unless someone opened it for them! For goodness sakes, open the door for them.

At the grocery store, I pick up the juice bottles and cans. I let my mom point at what to get and I get some. No big deal – for me.

My sister and I help my mom make dinner every night and do it ourselves sometimes. Picking up pots and opening cans doesn’t cause us trouble. We try to keep the kitchen clean. I remember the time not too long ago when we never even washed the dishes, our mom did it all!

Just as important as the physical help is the support of a listening ear. Let your mom, dad, sister, friend tell you about the pain and fatigue. Let them be heard. They say we don’t understand, but why can’t we try? Most of their suffering is kept to themselves; after all, the pain is constant.

This is just a start to everything we can do to show the people we love that we care. No, it’s not even showing we care; it’s doing the only right thing. Think of it this way: what would you want if you were disabled, in pain, and hoping for a remission? You’d want someone to open the door, for goodness sake.

I hope I didn’t bore anyone, this being my first time and all. I suppose I’m not quite as witty as my mom! ; D Wait, Hope, Pray… and Act.

I recommend you also read The Me Before Rheumatoid Arthritis and

A Memo to Non-RAers.

Woman's Day Article on Rheumatoid Arthritis

2009-07-15T19:36:00.012-04:00

I didn’t want to take RA to the beach with me!

I went to the beach the other day. We tried to take a day off from all of our vocational and avocational activities. We hardly ever take time off from school or work. Many of you know that the Rheumatoid Arthritis Warrior website is also hard work – several hours per day.

Of course, we left the computer at home. But, I didn’t even bring a notebook! And I said, “No camera either. I‘ll be tempted to get to work.” I tried to leave the Rheumatoid Arthritis at home too. I ate a good breakfast and took a big dose of Advil.

Woman’s Day magazines have been piling up around here since I started the blog. My daughters read them. But, I just have no time… So, I took the last 3 issues with me to the beach to catch up. It would be a work-free zone: just me, my CD player, my iced tea, and my kids.

Of course, you know RA won’t stay away. But sometimes, if you get really comfortable, sit very still, and get mentally absorbed in something, for a few minutes you can forget about it. That was the idea anyway.

When everyone was off to play in the surf, I settled onto my lounge chair. My daughter had rinsed it off and placed my thickest beach towel over it. Magazines are a luxury to be savored. So, I picked up the most recent one and read it one page at a time…

Until I got to page 76. My heart stopped. It was a light little page about Rheumatoid Arthritis. With a picture of a thin and muscular young woman laughing into a backstroke in tinted blue water. I think the image looked like a spa ad. But, ok, I’ll read now and judge later...

What a disappointment! I have read so many stories in this magazine about women who triumph over illness and adversity. About women who have a hard time getting a valid diagnosis and barely survive horrible diseases... And THIS is what they have to contribute to our campaign against ignorance of RA?

They made it sound like a minimal case of the flu. Anyone reading that article would be shocked to hear your stories, to read the emails I get, to look over the comments on this blog, or see the messages you leave through the Facebook page. It sounds like a different disease.

The teacher in me came out and I got an urge to take a red pen to that page. I would like to correct every misconception and inaccuracy and send it in to their editors for inspection. I still might.

I will not be dissecting each misstatement in this post. However, I will spend the rest of my life getting the correct info about Rheumatoid Arthritis known. One by one, I will address each thing.

I will not stop until Rheumatoid Arthritis is understood or cured for good, whichever comes first. Stay tuned.

What else can we do?

I flipped through the front pages to look for a letter to the editor section. No letters from readers department? Maybe they want folks to reply on the net, I figured. So, with some searching I found the internet version of the article and left my comment.

The comments are on two pages and you can add yours. Also, you can “Rate the story” by clicking on the stars. I hope one star means “Please try harder.” Click here to see it.

Functional Measurement of Rheumatoid Arthritis

2009-07-15T07:15:00.010-04:00

It’s not only “Where does it hurt,” but also “What are you able to do!"

There are many ways to measure RA. Of course you’ve heard the pincushion jokes. But, blood work is the simplest way to get a picture of what Rheumatoid Arthritis is doing in a body. Sometimes x-rays or other scanning devices can detect damage.

Actual disability is more difficult to appraise, though. Certain symptoms such as pain, stiffness, and weakness are tough to measure. However, they are important indicators of disease severity and progression.

Some doctors might ask patients, “Were does it hurt?” or “How bad does the pain on a 1 to 10 scale?” But, there is another question which is just as important. It is, “What can you do?”

Over the years, doctors have developed several instruments to gauge the disability that Rheumatoid Arthritis causes. They include the Health Assessment Questionnaire (HAQ), the Keitel function test (KFT), and the Arthritis Impact Measurement Scale (AIMS). They attempt to record limitations in joint motion and difficulty performing certain tasks.

The goal is to have a more objective way to measure, record, and predict ability to perform the daily tasks of life. That is sometimes referred to as “Global functional status.” See image; click on it to enlarge it.

Patients are classified according to their ability to perform activities related to these categories: self-care (bathing, dressing, grooming); vocational (job-related tasks); avocational (pleasure or hobby- related tasks). There are four labels based upon which types of tasks a patient can perform.

Measuring functional capacity at the time of diagnosis of Rheumatoid Arthritis is important. It is a strong predictor for functional status later in the disease progression. The severity of the Rheumatoid Arthritis (as judged by functional status) is an even more accurate predictor of future disability than is the duration of the RA.

Believe it or not, poor functional status is even useful for predicting (long term) mortality in Rheumatoid Arthritis. I don’t point that out to scare you, but only to explain why researchers confirm how critical functional status assessment is to your treatment. It is vital to discuss your functional status with your doctors. It is an essential part of your care.

What should we do? We should carefully fill out any forms which our doctors provide which ask for details about what kinds of tasks we can do and how difficult it is to perform them. We can also compare that to what we were able to do in the past (for example, one year ago or before we changed medications, etc). We can even provide our doctors with 2 short lists:

1) Tasks which we can currently accomplish, indicating level of difficulty, or amount of medication required to do them;

2) Tasks which we can no longer perform.

On a less serious note, this reminds me so much of those kindergarten report cards for little tasks: She needs help to tie her shoes; she feeds herself neatly; handwriting is barely legible; cleans up well, but needs encouragement. Let’s hope ours also says: shares and plays well with others.

NIH citation Rheumatology journal abstract

If You Do Not Have Rheumatoid Arthritis, Please Read This

2009-07-13T21:00:00.008-04:00

A Memo to Non-RA-ers

My mailbox stays full of “nobody gets it” messages. People feel lonely and frustrated because most people don’t get RA. No, I mean they don’t “get it” as in understand what it is like. Recently, we discussed the UK campaign against ignorance about Rheumatoid Arthritis.

Let’s talk about our own campaign. What are some things we want the Non-RA world to understand? Why? How can we achieve our goal?

What we want you to know

We want you to know what Rheumatoid Arthritis really is. We want to correct the myths and misunderstandings about RA. And, we want you to understand the consequences of a life with Rheumatoid Arthritis.

Think for a moment: Have you ever have tendonitis? Or “tennis elbow”? How about a sprained ankle? Maybe a dislocated finger? Heel spur? Torn rotator cuff? Broken bone? Jammed toe? Or a ganglion cyst? Maybe you have a bit of osteoarthritis in your knees? If you have, then you have a better ability to understand than you knew. Imagine that you had that painful incapacitating condition in every joint.

If you do not read any further, and you re-read the last paragraph, we will have made progress. That was not hyperbole. Rheumatoid Arthritis progresses at different rates, so your loved one may not have involvement in every joint, but you can still get the idea.

Oh, and if I may offer an ever clearer picture, add a bad case of the flu that to the cocktail. You are getting close.

Do you know which joints are involved with your loved one? Are you sure?

We also want you to see why we cannot forget about the RA for very long. Even though you cannot see it, it is eating us alive. Literally. And we are not able to make our hands or our feet do what we tell them anymore. So, if we can put it out of our minds for a few seconds, it comes back in again when we try to move.

Why we want you to know

Why do people with Rheumatoid Arthritis want the comprehension of the non-RA world? Why do we care whether you to get it? Obviously, it would be nice to have sympathy and to feel validated in our suffering.

But that is not our point.

We want you to recognize what Rheumatoid Arthritis is because your reaction to our condition is sometimes not appropriate. Imagine with me again. What would you think if someone handed you a hatchet and asked you to chop some firewood with your broken arm?

No one would do that because everyone understands what a broken arm is. So, that response to your condition would be inappropriate. It would be ignoring the reality of your broken arm or at least extremely minimizing its significance. But broken arms are not invisible.

I have entitled this principle: Recognition Leads to Accommodation. It is the reason that most of us will hold the door for an elderly person or cut meat for a toddler. If any limitation is apparent, most of us will naturally make efforts to accommodate the disability.

Rheumatoid Arthritis brings disability and usually requires accommodation. Not doing so seems cruel.

How can we help you to understand?

We can tell you the truth about Rheumatoid Arthritis, busting the myths as gently as possible. We can refuse to participate in any denial about RA or what it is doing to our lives. We can stop allowing others to dismiss us as malingerers.

From our side of the wall, that is what I see. Now it is your turn, Non-RA World. Tell me how we can help you understand Rheumatoid Arthritis. Please.

Personal thought
Sometimes, I wonder whether people would have responded any differently if my diagnosis had been a more well-known disease like diabetes, heart disease, or cancer. I like to think so. I am guessing that people treat RA the way they do because they do not get it. I am hoping that I am correct.

Note: If you found this post interesting, you might also like to read Transparency and the Wall or Use It or Lose It.

I Failed the Rheumatoid Arthritis Control Quiz

2009-07-12T18:48:00.007-04:00

My Response to WebMd's Quiz on Rheumatoid Arthritis Control - Can you tell my doctor?

WARNING: Sarcasm ahead.

WebMd sent me a quiz in my email box. I never do online quizzes. I heard they collect data for later use. Besides, my wrists and fingers hurt, so I have been trying to resist any pointless typing or mousing.

But if it is Rheumatoid Arthritis data, that might help someone some day. So, I made an exception and filled out the quiz. To my surprise, there was an instant diagnosis (reply). How nice! My other docs make me wait hours. Is the WebMdDoc (WMDoc) a real doc or does it just play one on the internet? Could I stay home and get my prescriptions from here…

Here is part of the answer WMDoc gave to me:

“According to your responses, you don't have good control over your RA symptoms. The condition is taking a toll on you, emotionally and physically. You may also worry about the future -- what happens if your symptoms get even worse?”

I did not try to reply to the WMDoc’s email. I know there are thousands of patients waiting to be next on the quiz. However, I will share some of my responses with you:

“Control”? I don’t have “good control”? Look, if I were in control, I’d tell the RA to get out of my body, out of my house, out of this world, and never show its horrible face again. Yes, WMDoc, I guess you’re right; I am not in control of the Rheumatoid Arthritis.

“A toll on me”? YA THINK? “Emotionally and spiritually,” huh? Yes, a toll higher than the Beeline to Disney collects each day. And how about tolls PHYSICALLY, FINANCIALLY, and RELATIONALLY? I am not sure you really understand my plight, WMDoc. Did they require any empathy classes at your medical school?

My “future”? Am I worried about whether the “symptoms will get even worse”? Uh, yeah… That’s why I am taking all these meds and seeing so many doctors like you. Thanks for mentioning that it might get worse. I do know that since I have friends who are worse off than I am. However, I do get lost in hope of a cure sometimes and it’s great to be brought back to earth.

Another excerpt from your reply:

“But now is the time to take action. It sounds like your current medications aren't doing enough. It may be time for a new treatment approach. See a rheumatologist -- or arthritis expert -- to see what you can do. With a good treatment plan, you can get your life back.”

I can see that paragraph is meant to be encouraging. Please forgive me if I sound picky, but I must question your choice of words again: You said, “You can get your life back.” I have heard that one before. Where did you learn that? How long did you really study Rheumatoid Arthritis in medical school? Was it summed up in one morning seminar?

It would take me hours to explain to you the truth about RA and whether I get my life back with “a good treatment plan.” Can I suggest a little blog I know? You could learn a lot about how Rheumatoid Arthritis actually affects people’s lives. Don’t forget to read the comment sections. There is a lot of valid data there too. Most of the folks who participate are real Rheumatoid Arthritis patients – they don’t just “play one” on the internet.

By the way, would you be willing to do a consult with my other RA doc? He says that my Rheumatoid Arthritis is under perfect control and that I appear to him to be doing fine and dandy.

What is Sjogren's Syndrome?

2009-07-10T14:24:00.011-04:00

What is Sjogren’s Syndrome and Show Me Why I Should Care

Often we mention the “characteristic dry eyes of RA.” However, we have more urgent concerns of our Rheumatoid Arthritis. This may be one reason that we don’t know much more about Sjogren’s. We have often accepted dry eyes as just one more symptom of RA without exploring it further.

What is it?

Sjogren’s syndrome is an autoimmune disorder in which the lymph (immune) system attacks the exocrine (excreting) glands. It is characterized primarily by dry eyes and dry mouth. About half of the time, Sjogren’s occurs with Rheumatoid Arthritis or other rheumatoid diseases; this is Secondary Sjogren’s. However, Sjogren’s can appear alone; then it is Primary Sjogren’s. Sjogren’s incidence is about 90% female.

What will I notice?

Patients may not be aware that their tear ducts are less operational until they experience itching, burning, redness, or sensitivity to light. By then, Sjogren’s has attacked the tear glands and begun to damage the cornea. With regard to the mouth, patients might first notice lip dryness or difficulty swallowing dry foods. Often, there is a constant urge to drink something or put something like a mint into the mouth.

Why should I care?

Rheumatoid Arthritis has most of us pretty well trained to never complain. We don’t want one more roll of the eyes. And we don’t need one more doctor’s appointment on our calendar. To us, having dry eyes is a less significant problem than others we routinely face. For these reasons, we may not get treated for a problem which may be readily treatable. It is also important that we know a bit about Sjogren’s because we should be monitored carefully for the more perilous symptoms. The rarer symptoms are serious, but usually treatable.

What are the symptoms of Sjogren’s?

Common symptoms of Sjogren’s include eye dryness leading to eye infections and erosions of the cornea which may be experienced as a “glare” sensation; mouth dryness may lead to cavities since antibacterial saliva is reduced; gastric hyperacidity because the body also uses saliva to neutralize stomach acid; depression; sleep disruptions; severe fatigue; arthritis and arthralgia symptoms (muscle and joint pain and weakness); nasal and upper respiratory dryness.

Less common symptoms include involvement of skin (rashes), lungs, heart, pancreas, kidneys, liver, spleen, and lymph nodes. Joints, nerves, or muscles can become inflamed. There is also damage which can occur wherever mucous has been reduced by affected glands. For example, nasal dryness may cause nosebleeds and trachea damage can lead to respiratory infections. Damage to lung tissues can lead to pneumonia.

How is Sjogren’s diagnosed?

Sometimes the same blood tests which indicate other auto-immune diseases are used to indicate Sjogren’s, such as ANA, ESR, or Rf. However, some simple office tests can be used to get a more specific indication. There is a crude filter paper test in which a doctor uses paper to measure the moisture on the surface of the eye. A slit lamp exam provides a magnified 3-d scan of the eye, revealing damage caused by dryness. The Rose Bengal test makes dry spots and mucous abnormalities visible by applying a food dye to the eye. If necessary, more elaborate tests such as biopsies or x-rays can be done.

How is Sjogren’s treated?

There is no cure. Heard that one before, haven’t you? Often, the same DMARDs used to treat Rheumatoid Arthritis are used to prevent disease progression and to control inflammation in Sjogren’s syndrome. Additionally, there are lots of options to deal with the “leftovers.” Most of the symptoms of Sjogren’s do have effective treatments.

Listen to a doctor’s advice:

“Although it sounds rather frightening that Sjogren’s can affect other parts of the body, it is important to recognize that each of these problems is responsive to therapy if detected early and treated adequately. It is equally important to recognize that SS patients are not exempt from other common problems that may occur in these age groups. Thus, it is unfortunately too common that a treatable problem was delayed in diagnosis since the symptom was incorrectly attributed to SS. For example, the same symptoms in any other patient might have been readily diagnosed as a routine pneumonia, gall bladder stone, kidney stone or ectopic pregnancy,” ( from dry.org, Drs. Fox and Michelson).

In case you were wondering, Sjogren’s is pronounced “show grins.” I always said RA-ers were good-natured folk. :D

Detailed overview of Sjogren's at emedicine.

Should Rheumatoid Arthritis Patients Exercise?

2009-07-09T21:34:00.010-04:00

Can we talk about exercise?

There is an elephant in the room. Not a cute and helpful one like Horton. It is one of those proverbial elephants no one wants to address. It’s a big and annoying issue that won’t go away, yet everyone tries to ignore.

I do not fancy myself an elephant tamer. However, I have a constant urge to state the unspoken. So, let’s get this out in the open.

Exercise is a touchy subject in the world of Rheumatoid Arthritis. Proponents of exercise strongly advocate it. No one I know actually opposes exercise, but it does raise several questions. I wonder why I do not hear them asked.
Early in 2006, when I began to suspect that I had RA, I began to read research articles about it. I was leery of internet Quackdom, so I limited myself to medical universities / hospitals like Cleveland Clinic, Mayo, and Johns Hopkins. Soon, I learned to expand to other reputable websites like WebMd and About.com. I just wanted the legitimate information, not fairy-world cures.

I read about protecting my joints by not doing things that caused pain or stress. That sounded very important to me, so I printed off lots of pages about it. Later, when I began to hear how some RA-ers are pressured to exercise, it struck me as odd. The two ideas are in direct conflict. I cannot protect my inflamed joints from use at the same time that I am using them to exercise.
I read about every theory I could find to explain the causes of Rheumatoid Arthritis. I did not read any which pointed to laziness or lack of exercise as a reason for RA. I am sorry to be blunt, but if sloth did not cause my RA, then workouts will not cure it.

My doctors have prescribed vitamins, chemo shots, newfangled funky Biologic drugs, rest, anti-inflammatory medicines and even a high Omega-3 diet to attempt to gain control of my RA. Funny, they have not prescribed exercise. Why not?

It would have been an appropriate prescription if I had come into the office with one of many other conditions. But, I was disabled by RA, not idleness. Some people are truly disabled by RA. And they cannot exercise for either fun or strength.

There are others who have RA, but who are not disabled. Many have times between flares, however brief, when they can safely exercise. And a few other RA-ers actually have only a small number of joints that are affected. Of course, they can exercise using the unaffected joints.

I do not feel comfortable asserting this position. But, frankly, I am never comfortable anymore. I am in pain. It’s not endearing or attractive to say so, but it’s true.

I am very uncomfortable to sound like I am opposing something as wonderful as exercise. I half expect to be stoned. But, of course I am not arguing with exercise.

I am arguing with the preposterous proposition that if RA-ers would just exercise, they would feel better or get well. That is so absurd that I can’t think anyone really believes it. If they do, I am willing to walk in their shoes. Can they stand in mine?

I wish that RA-ers would not have to ever defend themselves about exercise. We did not get Rheumatoid Arthritis because we were less active; we became less active because we have RA.

6 Ways to Get Hard Projects Done With RA

2009-07-08T20:31:00.013-04:00

How to Scheme to Get Something Done in Spite of Rheumatoid Arthritis

Remember the old movie “Honey, I Shrunk the Kids”? Sometimes I think I am living in it! Everything in my world is too large for me now. Cups of coffee are too heavy to lift; dishes are too heavy to wash; pulling on a gas pump feels like wrestling a python.

I feel a bit helpless most days… but I like to look on the bright side. So, I am repeatedly thinking, “Is there any way for the new me to ever tackle a big project again?” Of course, for some of them, the answer is clearly, “NO.”

No, I can no longer lift 50lb. bags of concrete. No, I cannot move a ton of fill dirt with a wheelbarrow. And, NO, I will not be planting trees or trimming them 15 feet above my head.

However, I have amazed even myself with some of the things that I have gotten accomplished over the last few years. Every day is different, as many of you know. So, I always hold out hope that there will be more good days coming and I still keep a list of projects I wish to accomplish “someday.”

After yesterday’s post, I thought we could all use a little encouragement as to how to approach those “larger than life” sized tasks with our new “reduced” abilities. For the things we still keep on our lists, here are my suggestions:

How to do big things with undersized ability:

1) Plan. Plan out the details and study the process to mentally prepare. Get an accurate view of what steps you will need to take.

2) Find different tools. Take time to gather tools which will be more appropriate for you: smaller, lighter weight, and higher quality. Examples include child-sized garden tools, smaller sized professional paint brushes, and soft rubber mats to kneel on.

3) Ready, set, wait. Gather all of your supplies and wait for a good time. That might mean a good shoulder day or a good hand day. It might mean a week with no doctor’s appointments. If you plan ahead, when a good moment comes, you will be able to seize it.

4) Enlist help. Find someone to partner with you, even if you are a big DIY-er. He / she can help with little tasks like opening cans, carrying tools to the site and setting them up, and cleaning up the utensils or trash. This allows you to preserve your strength for the actual task. Also, helpers are your back-up when you need a break. (I cook this way with my kids almost daily.)

5) Work in bytes. Take frequent breaks. I have painted a room this way: paint for 15 minutes… lie on the floor 15 minutes… Rinse. Repeat. Your new motto is “PATIENCE MAKES PERFECT.”

6) Do something else. No, I don’t mean give up! But think outside the box. When I bought a $10 chair at the Salvation Army, I thought I would just re-upholster it as always. What was I thinking? I don’t have the strength to pull and staple!

After I thought about it a while (only one year!), I realized I might be able to sew a sloppy slipcover instead. Maybe you can think of something different which will be just as good, but more feasible for you to undertake.

By the way, I used every step on this list to accomplish my chair.
So, what is on your list? Is it making jelly or homemade pizza? Writing a blog? Planting flowers? Taking a road trip? Sewing a baby quilt? Teaching a class? Building a snowman? (Still on mine!) Don’t just do something; sit there. Sit, but scheme.

The Me Before Rheumatoid Arthritis

2009-07-07T17:58:00.021-04:00

The old me is still in the scrapbook.

Let me introduce you to the me you can never meet: The Me Before Rheumatoid Arthritis

If you have RA, you spend lots of time adjusting to change. For me, the biggest adjustment has been to the disability. First, there is frustration that I cannot do what I still want to do.

But the “old me” is still around – she lives on in my mind. However, she no longer matches the “physical me”. The second frustration is that no one else can know the mental me because the physical me cannot perform the actions which the mental me still wants to do.

A great deal of effort has been spent grieving what I can no longer do, accepting a new norm, and finding new ways to express that old me who did not die. When I meet someone new or fill out a bio, I hate to be asked what I like to do. I CAN’T do what I like to do anymore! So, I act like a grown-up and focus on things more important than whether I can quilt or play tennis.

For this reason, I have been consciously learning more mature ways to define myself. While the Rheumatoid Arthritis will not allow me to express it in the same ways that I once did, I am still… creative, ambitious, independent, generous, and strong. I am still the kind of person who wants to get big things done!

It has only been three and a half years since my Rheumatoid Arthritis became what I always call "full blown,” so I know I am still adjusting. Perhaps that is why I still get ticked off when people see me as lazy or wimpy. I wish I could show them that, before all this happened to me, I could have done what they are doing, too – at least as good as they do it. That is ironic since I spent so much effort moving forward.

If it’s okay, I would like to look back over my shoulder one more time. Just long enough to let me introduce you to the me you cannot see:

The Me in the Scrapbook

Nothing is too hard. If I can’t buy it, I will make it. I sew my own
curtains, slipcovers, and clothes for my little ones. I have refinished dozens
of pieces of furniture. I make Christmas presents. I am fit. I love to run and
swim for hours. I do not ask for help. My dad was a United States Marine;
sit-ups and push ups are recreation!

Once, I bought a home with a 2 foot ditch dug out all the way around
it. I convinced nearby road workers to dump a whole front loader of dirt in my
front yard. I spent weeks with a wheel barrow and a rake grading the entire
property. Then, I landscaped it properly so that it was the envy of the
neighbors. I used to trim my trees, clean my gutters, and plant my vegetables. I
kept my front entrance like a House Beautiful magazine cover.

I bought 22 fifty pound bags of concrete, mixed them with water in my
wheel barrow and put two coats of stucco on the outside of that house, too. Of
course, I painted the whole thing inside and out. I even painted the playhouse
to match. Inside the playhouse, I created sky on the ceiling, and flowery dunes
on the walls.

I make my soup from scratch. I bring meals to the sick. I have hosted
many dinner parties and receptions in my home and in large church halls. I used
to make all of the food and decorations myself. I am tough. I survived
encephalitis without medicine. I can take pain. I had five babies at home with
no medication. I have homeschooled them all. Two of them have a physical
disability. Really, this is the tip of the proverbial iceberg.

Whew! That was a whirlwind tour down memory lane. I hope that did not exhaust you, too.

I have had to say good bye to the old me. As if that were not hard enough, someone told me last week that I just need to be willing to put forth some effort. People only say that because they are judging me by what they see on the outside. They don’t know the other me, the one who still lives on in my mind. I guess I could show them my scrapbook. (NOTE: I will post the photos on the Facebook page, so you can see them enlarged, with notes.)

How is Rheumatoid Arthritis Diagnosed? Part 2

2009-07-06T19:36:00.010-04:00

Will I need a Patient Protection Plan?

Diagnosing Rheumatoid Arthritis is not easy. Living with RA is no picnic either. And writing about it is like untangling cooked spaghetti.

There is no single definitive test which has a clear positive or negative result for Rheumatoid Arthritis. But, I believe that the diagnostic process could be improved. And perhaps our collective effort will bring us closer to that goal.

First, is there anything that could make diagnosing Rheumatoid Arthritis any faster or less tricky? Is there anything that the American College of Rheumatology could do to improve RA diagnosis procedures? Second, what can we patients do?

Let’s talk about the guidelines (see Part 1). Many patients approach a rheumatologist with symptoms which do not initially satisfy the clinical requirements for diagnosis. Then, within a few months, these same patients are diagnosed with Rheumatoid Arthritis. Do we say that the patients should have had more obvious RA symptoms sooner or that the guidelines should be adjusted?

Look at one scenario: a patient presents with symmetrically inflamed knees, shoulders, and feet. She could easily fall outside of the guidelines because her hands are not yet affected. Hands and wrists are key to diagnosis by today’s guidelines. Many doctors do recognize the feet as equal to the hands in importance, but when they do so, they are stepping outside of the guidelines.

A patient can easily have three out of the seven symptoms on the list recognized by a doctor and fail to receive an RA diagnosis (yet) because symptoms develop in a different order in different patients. It has only been in recent years that the ACR has recognized that early diagnosis and treatment is important to alter the disease course. The guidelines were not developed by studying the onset (early stages) of Rheumatoid Arthritis.

Many of the visible symptoms of RA vary by individual and throughout the course of the disease. Many who “start out” seronegative (with a negative Rf test) are later seropositive. External swelling can be either extremely noticeable or very slight. There are even cases in which the arthritis is not symmetrical.

Some of the symptoms included in the guidelines are totally subjective, such as stiffness. Here, the key to getting the symptom documented toward a diagnosis is good communication. I don’t need to tell you about how well some doctors listen. Even if you have found a good one, you’ve heard the dreadful stories.

Fatigue is another highly subjective symptom. It is considered by many authors of books on RA (physicians mostly) to be a hallmark symptom of Rheumatoid Arthritis. However, fatigue is not even on the list of seven guidelines.

I realize that I am raising difficult questions (please see Part 1, paragraph 5). And the answers may not be easy or obvious. Many doctors are already reaching beyond the guidelines now by considering things such as an anti-CCP result, fatigue, muscle weakness, or Sjogren’s syndrome in diagnosis. These indicators are in the books; and they are part of most RA patients’ lives. The fact that many doctors go beyond the guidelines to look at extracurricular symptoms is proof to me that the guidelines need to be updated.

As I said in Part one, the “listening” problem has been solved with the internet. Doctors do not even need to listen well to patients to improve their understanding of us. The ACR can hire researchers to analyze and compare narratives of many thousands of RA patients who have used the internet to document their onset and diagnosis of Rheumatoid Arthritis. Perhaps, patterns would emerge which could enable doctors to more easily recognize the onset of RA.

What can patients do? If we are unsure of a diagnosis, we should ask for more tests. In extreme circumstances, it is even possible to extract fluid from a joint to examine it for compounds typically present in Rheumatoid Arthritis. We can ask that doctors listen carefully and document our symptoms as we report them. We can suggest doctors read some of the volumes of documentation that is available about RA on the internet, written from the patient’s viewpoint.

When the onset of so many is considered atypical, it is my opinion that a mold which does not fit is the thing that is wrong and not patients’ presentations. Why not use every test available to procure a diagnosis of such a complicated and poorly understood disease which has such devastating consequences? Why risk delaying treatment?

I had not planned to write about this for at least another year. I wonder if I can plead temporary insanity for having questioned authority so resolutely. Does anyone ever win fighting City Hall? I hope I will not need a witness pr– no, a PATIENT protection plan for troublemakers.

Of course my opinion is my own. That is part of what a blog is. Some days it’s like trying to untangle cooked spaghetti. Messy.

How is Rheumatoid Arthritis Diagnosed? Part 1

2009-07-05T18:56:00.013-04:00

Why is it so hard to diagnose RA?

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

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

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

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

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

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

First, Medical Advancements:

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

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

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

Second, the internet:

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

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

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

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

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

2009-07-03T18:17:00.015-04:00

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

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

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

How did his RA start?

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

How did people react?

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

Do you think you understood?

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

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

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

Do you think anyone else understood?

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

Do you read the blog?

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

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

What was the hardest part?

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

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

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

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

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

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

What did you wish people knew?

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

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

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

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

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

Rheumatoid Arthritis Breaks Your Heart

2009-07-02T19:06:00.007-04:00

You can file this under straight talk on Rheumatoid Arthritis.

I used to say, “Rheumatoid Arthritis is not in your head; it’s everywhere else. Then I realized that for some of us, it does get to the head. Specifically, RA gets to the jaw joints and the eyes. So technically, my Rheumatoid Arthritis is in my head.

So, I started to say it like this: RA is not in your mind; it’s everywhere else. But, lately I think I have changed my opinion on that, too. Rheumatoid Arthritis might actually change the way we think. Remember my very first post, RA can make you patient?

But perhaps it does not stop there. Rheumatoid Arthritis can also break your heart. My heart is broken by what I hear and read from other RA-ers who either post their own blogs or write private messages to me.

I have heard the ache of women who want to have children but live on medication which prevents that. Countless young ladies have told of their distress over aging much more quickly than they had planned. There are troubles with bosses who don’t understand and long-planned careers that have washed down the drain, courtesy RA. Of course there are the myriad beloved activities we are forced to curtail.

But the most heartbreaking tale that I hear is about family members who do not understand how Rheumatoid Arthritis changes the rules of the game. Women tell me they are accused of having “grown a lazy bone.” Men are distressed because their families cannot accept a lowered physical output with childcare or chores.

That is the dismay of living with an invisible illness. Pain is invisible. Stiffness and muscle weakness is invisible. One man wrote that his wife could not be convinced that his pain is very bad at all. Numerous women have told me that their husbands criticize them for their lowered standards. Just today, I read a woman’s comment about her grown son complaining of how little she can do for him now.

My heart is especially heavy for one person who may actually be divorced because of becoming disabled. This disaster is, one man or woman at a time, as bad as any I have watched in the news. It is no different than watching hurricane victims lose their homes. The suffering is just as real. But the sympathy is not.

My heart has become as sore as my wrists and hips and knees…

More than once, I have heard it suggested that we could expand understanding of Rheumatoid Arthritis if we could only loan it out once in a while. If we could let our spouse borrow it for a day, would s/he “grow a sympathy bone”? I know it is said in jest (well, probably it is), but I think there is a nugget of truth there, too.

Could it be that living with Rheumatoid Arthritis does affect your heart? For so long, I was perplexed that RA seemed to affect the nicest people. Maybe it was the other way around all along: the long term suffering of Rheumatoid Arthritis breaks our hearts. It makes us into more compassionate people.

A Summer Read for Rheumatoid Arthritis Warriors! part 3

2009-07-01T19:58:00.012-04:00

An American History story about character and disability, part 3

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

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

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

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

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

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

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

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

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

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

Summer Read for Rheumatoid Arthritis Warriors, part 2

2009-06-30T19:38:00.010-04:00

An American History Story, continued...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Summer Read for Rheumatoid Arthritis Warriors!

2009-06-29T19:26:00.006-04:00

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.

What is Palindromic Rheumatism?

2009-06-28T19:34:00.008-04:00

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.

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

2009-06-26T18:15:00.011-04:00

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.

NRAS study RA poll and Year of RA

It's Ok to Laugh if You Have Rheumatoid Arthritis

2009-06-25T18:57:00.009-04:00

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.

Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

2009-06-24T21:00:00.007-04:00

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.

So Glad Your Rheumatoid Arthritis Is Cured

2009-06-23T19:25:00.010-04:00

“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?

Rheumatoid Arthritis and Depression

2009-06-22T17:52:00.013-04:00

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

The Controlled Burn Strategy of Disease Control for RA

2009-06-21T17:02:00.011-04:00

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.

What Causes the Fatigue of Rheumatoid Arthritis?

2009-06-19T18:05:00.012-04:00

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.

Do Men Get Rheumatoid Arthritis, Too?

2009-06-18T18:53:00.005-04:00

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.

Rheumatoid Arthritis Warrior's Birthday

2009-06-17T17:13:00.010-04:00

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.

Poem by Friend of Rheumatoid Arthritis Warrior

2009-06-16T14:38:00.034-04:00

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.

The Difference Between Osteoarthtitis and Rheumatoid Arthritis

2009-06-15T17:44:00.014-04:00

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.

The Four Courses of Rheumatoid Arthritis, part 2

2009-06-14T17:17:00.008-04:00

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.

The Four Courses of Rheumatoid Arthritis, part 1

2009-06-12T18:44:00.007-04:00

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.

Rheumatoid Arthritis Tips Book Review

2009-06-11T20:08:00.020-04:00

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.

Rheumatoid Arthritis Warrior on the Road

2009-06-10T21:40:00.010-04:00

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.

Pyramid Approach to Rheumatoid Arthritis Trashed

2009-06-09T20:26:00.021-04:00

Pyramid v. Surge

OOPS!
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.

Article on controlling RA
Oxfor d journ al abst ract

NIH abstract

Can Rheumatoid Arthritis Kill You?

2009-06-08T10:30:00.011-04:00

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.

The Invisible World of Rheumatoid Arthritis Speaks

2009-06-07T13:34:00.003-04:00

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!”

The Use It or Lose It Approach to Rheumatoid Arthritis

2009-06-05T22:37:00.003-04:00

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?”

The Shifting Sand of Rheumatoid Arthritis

2009-06-04T16:38:00.002-04:00

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.

Preventative First Aid for Rheumatoid Arthritis

2009-06-03T17:36:00.001-04:00

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.

Baloney About Rheumatoid Arthritis

2009-06-02T18:48:00.003-04:00

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.

Hope for Rheumatoid Arthritis in a Spray Can

2009-06-01T17:41:00.003-04:00

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

RA Warrior's Site Reactions, part 2

2009-05-31T11:07:00.003-04:00

Thank you for the many inspiring comments and emails. These last two weeks have been like a whirlwind. One day, I decided I just couldn’t wait any longer. I still do not have all my ducks in a row, but here we are anyway.

I have been working on my cool new RA website for a few months, whenever I get time. And I am closer than ever to getting that online and this blog will be a big part of it. Thanks to you who are getting on board from the very beginning.

There have been a few questions about how to best participate here on the blog. You can do as you like:

Comment
Click on “comment” below a story. Write inside the comment box. Write as much as you like. Click “post comment.” I will reply as soon as I am able to do so.

Follow
Blogs use “followers” to add credibility. It helps other readers know that people find this blog useful. You can either follow publicly or privately – and with or without a picture of you or your dog. ;D Just click on “follow this blog” and you will be prompted.

Subscribe
This is just a way to make it easier for you to remember to read the blog every day. It’s like a newspaper subscription – only free. There are a few ways you can subscribe to Rheumatoid Arthritis Warrior:

If you click on the “Atom” link at the bottom of the page, you will open a window to subscribe via RSS (that’s Really Simple Syndication). Just click on “Subscribe to this feed.” Then, a little permission window from your own computer will ask you to confirm; press “Subscribe.” Now, if you check your RSS feeds through whatever gadget you use (or in your “Favorites – Feeds” tab, you’ll see Rheumatoid Arthritis Warrior there.

If you prefer, you can just “bookmark” this site with your “Add Favorites” tab and then use it every day. ;D

Share
If you press the “share” button, you will see different ways that you can refer others to this blog. If you choose “email” you can email a link to Rheumatoid Arthritis Warrior to friends. And you can even add your message, if you like. The other things (such as Digg) are ways to vote for RA Warrior as a good blog or post a link to us on another site (like Facebook). That is just to help more people find this blog. I will continue to try to make it easier and I appreciate your suggestions.

Email
If you need to contact me directly, you can email me at rawarrior@att.net. Soon, you will be able to enter your own email onto my site, so that you can receive updates periodically from Rheumatoid Arthritis Warrior.

Profile
Soon I will finally have the Profile page completed. Thank you for your patience.

Bee Sting
Finally, yes, I did my shots yesterday and the other kind of site reaction continues also. I appreciate your concern and prayers as I try to unsubscribe to my bee sting. ;D

How Rheumatoid Arthritis Creates Makeovers and Bag Ladies

2009-05-29T17:34:00.001-04:00

This is a before and after story about some ladies with bags. But it’s not Extreme Makeover. It’s “Before RA and After RA.”

Before RA, I never accepted help from the baggers at the grocery store. I didn’t need help. (Maybe my mom read the Little Red Hen to me one too many times, but I tried to do everything by myself.)

Well, grocery shopping is one of those things that changes drastically when Rheumatoid Arthritis moves in. I used to also shop at Wal-Mart during odd hours when the stores were empty. Often, I’d go early or late while the kids slept. It was just easier on everybody else.

When I’d back the station wagon into the driveway with my loot, I’d scurry around to the back to pick up all the bags at once. I could set several bags on each arm, starting up near the shoulder. Then, I’d put the heaviest things in my hands. I shut the door with my hip. Within a minute, I was ringing the doorbell with my elbow saying, “Let Momma in.”

Usually, they didn’t have a chance to carry a single bag because I took care of them in a wink. It seemed to me like a waste of time to go back to the car several times. Why not just be uncomfortable for 2 minutes? There is never enough time, so why waste any?

I can hardly hold back the laughter as I picture myself acting out that scene hundreds of times. If I had only known the future - more of my energy as an able-bodied woman should have been spent playing tennis!

What a difference today is from all that! Since the Rheumatoid Arthritis, I do not usually risk going to the store alone. I almost always have helping hands to carry heavy stuff – and bring in the bags. When you think about it, this whole “before and after makeover” thing has affected much more than just me. I have to accept help – and someone has to offer it cheerfully. ; D

Sometimes, I do have to go it alone and it can make for pretty some rough moments. There was a lady just like me at the library recently. She was dragging her bag of loot – books - toward her car. Fortunately for her, my friend Leslie was nearby. She saw her and rushed up to help. She carried her load and struck up a conversation.

My friend called me that night so excited, “I met a woman with RA - at the library.” My friend was so blessed that she had the chance to do one thing to make life with RA a bit easier for that woman at that moment. I don’t know who was blessed more.

But both of them are so beautiful to me. No makeover necessary here. I am the one who taught my friend about RA. However, I know I do not take credit for her being a Good Samaritan.

You see, I met my friend at Sam’s club 10 years ago. I had injured my back trimming my trees and I could not lift the 50 lb. bag of dog food I was buying for Gabriel. She loaded the dog food into my cart. And ten minutes later, into my station wagon. Guess I did accept help before RA after all – at least sometimes.

I just saw this ridiculous new tool on sale on TV. It is a giant plastic ring that you can use to carry all of your grocery bags at once. I laughed out loud. I will be reviewing cool tools on my upcoming website, but you can suspect I won’t recommend that one!

“Look! You don’t have to carry all the bags at once. Let someone help you and then go play tennis together.” I didn’t say that – it was the makeover talking. ; D