Friday, July 31, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

“Yes,” I say.

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

I pretend I did not hear, “Hmm?”

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

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

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

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

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

“Thanks, but I’ll manage.”

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

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

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

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

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

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

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

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

I guess I am not a very good professional patient anymore. Do you think I can get fired?
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Thursday, July 30, 2009

How Rheumatoid Arthritis Impacts Lives

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.

Wednesday, July 29, 2009

Weathering Rheumatoid Arthritis


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 28, 2009

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

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:





More Rheumatoid Arthritis Warrior:

Monday, July 27, 2009

Rheumatoid Arthritis in the News: Rituxan Success


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

Friday, July 24, 2009

Can I Delay Treatment for Rheumatoid Arthritis? part 2

Is it safe to delay treating Rheumatoid Arthritis?

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

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

Fear:

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

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

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

Uncertainty:

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

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

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

Remitting RA:

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

Hopelessness:

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

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

Denial:

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

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

More?

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

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

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

Thursday, July 23, 2009

Can I Delay Treatment for Rheumatoid Arthritis? part 1

That depends, can an ostrich heal thyroid disease?

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

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

Can we talk about delaying treatment for Rheumatoid Arthritis intentionally?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

After about a year, I recovered fully.

Some things changed after that:

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

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

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

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

Wednesday, July 22, 2009

Laughter as a Weapon Against Rheumatoid Arthritis


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

Tuesday, July 21, 2009

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

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

Monday, July 20, 2009

The Rheumatoid Arthritis Self-definition Fairy

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.

Sunday, July 19, 2009

The Rheumatoid Arthritis Warrior's RA

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…)

Friday, July 17, 2009

Chicken Soup for Rheumatoid Arthritis Warriors

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

Thursday, July 16, 2009

A Message from a Young RA Warrior

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

Wednesday, July 15, 2009

Woman's Day Article on Rheumatoid Arthritis

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

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.


Monday, July 13, 2009

If You Do Not Have Rheumatoid Arthritis, Please Read This

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.

Sunday, July 12, 2009

I Failed the Rheumatoid Arthritis Control Quiz

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.

Friday, July 10, 2009

What is Sjogren's Syndrome?

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.

Thursday, July 9, 2009

Should Rheumatoid Arthritis Patients Exercise?

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.

Wednesday, July 8, 2009

6 Ways to Get Hard Projects Done With RA

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.

Tuesday, July 7, 2009

The Me Before Rheumatoid Arthritis










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.)







Monday, July 6, 2009

How is Rheumatoid Arthritis Diagnosed? Part 2

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.

Sunday, July 5, 2009

How is Rheumatoid Arthritis Diagnosed? Part 1

Why is it so hard to diagnose RA?

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

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

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

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

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

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

First, Medical Advancements:

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

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

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

Second, the internet:

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

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

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

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