Should Rheumatoid Arthritis Patients Exercise, Part 2

Should Rheumatoid Arthritis patients exercise or not?

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

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

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

Logic

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

Doesn’t work, does it?

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

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

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

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

Experiments

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

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

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

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

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

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

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

Recommended reading: How Rheumatoid Arthritis Creates Makeovers and Bag Ladies

Stunning video: How Rheumatoid Arthritis Impacts Lives

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

Swimming with dragons

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

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

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

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

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

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

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

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

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

Why?

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

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

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

Want more Warrior?

Inspiring story: A Summer Read for Rheumatoid Arthritis Warriors!

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

24 for Rheumatoid Arthritis Warriors

We Live With Rheumatoid Arthritis 24 / 7

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love of Challenge and the Rheumatoid Arthritis Speed Limit

RACE YA!

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

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

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

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

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

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

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

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

At least I am enjoying the challenge.

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?

You might also enjoy

RA Warrior on the Road, part 1

So Glad Your Rheumatoid Arthritis is Cured

How RA Creates Makeovers and Bag Ladies

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

A Memo to Non-RAers.

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.

NIH citation Rheumatology journal abstract

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.

A Summer Read for Rheumatoid Arthritis Warriors! part 3

An American History story about character and disability, part 3

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

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

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

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

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

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

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

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

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

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

A Summer Read for Rheumatoid Arthritis Warriors!

American History Story About Character and Disability, part 1

Once upon a time there was a beautiful heiress. Her name was Ann. To the consternation of Ann’s father, she married a poor widower who had once been a soldier. However, the dashing soldier also had aristocratic roots. In fact, he later became the governor of his state.

They did not live happily ever after. Misfortune and adversity plagued the young family. There were illnesses, bad investments, and betrayals. Sometimes, Ann’s husband became reckless in his attempt to regain some of his wealth. Once, he even served time in debtor’s prison.

Finally, outrageous circumstances caused Ann to be left to raise her children alone. Her husband was injured by a political mob and maimed for life as a new war broke out nearby the family’s home. Desperately, he would search out medical relief in the Caribbean. The President of the United States helped to arrange assistance for him.

Ann, who had been brought up in wealth and comfort, was left with children to raise and educate and bills which could not be paid. They had little money, but plenty of extended family to help them. Ann had given birth to six children in all. Her favorite was a son, her fifth child.

The son was about six years old the last time he saw his famous father. The father died when the boy was eleven. He inherited his mother’s love of horses and her expertise in handling them. She taught him to read the Bible at her knee.

Although he was skilled at fishing, hunting, and all sports, the lad spent much of his time doing housework and marketing! His mother had become what was called in those days “invalid.” She taught the boy how to manage the house, the property, and the horses for her as she became more and more “disabled,” as we say today.

As the boy grew older, he became even more devoted to his mother. He was able to attend school because of Ann’s family connections. But after classes, he did not play with the other youths. He would hurry home to care for his mother. He never complained about his responsibilities; he even counted it as a joy to entertain her.

Most afternoons, the young man would take Ann for rides through the neighborhood. He would carry her to a carriage and place pillows around her to make her as comfortable as possible. He would fasten the curtains carefully and amuse her as he stuffed newspapers into any cracks which could cause drafts.

It was noticed by all that Ann’s son was “devoted” to her. As her illness progressed, he waited on her like a nurse. He administered her medicines and every comfort that he could find to divert her mind from her pain.

Eventually, the son grew up and left to attend an Academy. His mother’s famous words: How can I ever live without him? He has been son, daughter, and protector – all in all to me.

A friend of the family stated that the boy had learned from his mother at an early age to practice “self denial and self control.” She had faced her adversity with grace. At the Academy, he was graded on character as well as academics; his marks were always close to perfect.

Everyone who ever knew the man said that he retained these virtues throughout his life. But his mother had not only taught him by her words. She had taught him by her neediness. She had found a way to be both mother and father to him. Her life demonstrated to him patience, kindness, and faith.

After he graduated, the man spent the next few months of his life the same way that he had spent his youth: nursing Ann. She had struggled to raise her five surviving children while battling the destructive disease. Now, at only 56, she was dying from it.

Ann’s favorite son administered her medicines and fed her. He read to her and told amusing stories from school. When he could do nothing more, he sat with her as she died.

Stay tuned to Rheumatoid Arthritis Warrior for Part 2 of our Summer Read. Who is this famous family? What will happen to Ann’s virtuous son? NOTE: Some modern versions of this story call Ann’s illness “Rheumatism,” “arthritis,” or Rheumatoid Arthritis.

Rheumatoid Arthritis Tips Book Review

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

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

Hey, I actually get them to help cook. Or better yet, to take their own turn cooking!

Tips #77 and #65 suggest having someone put your various detergents into smaller, more manageable containers for you. If you have not done this, do it as soon as you are able. It is a good idea. I had to do that a few years ago.

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

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

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

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

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

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

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

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

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

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

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

The Use It or Lose It Approach to Rheumatoid Arthritis

Does Use It or Lose It Work for RA?

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

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

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

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

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

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

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

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

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

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

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

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

Baloney About Rheumatoid Arthritis

How Do You Spell Baloney?

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

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

Here is what I was thinking:

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

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

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

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

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

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

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

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

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

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

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

Beats the baloney they serve up now.

RA Warrior's Angel Puppy, Gabriel

My Angel Gabriel

One year ago today, we lost our dog Gabriel. Had he made it through last summer, he would have been 19 years old. I bought him on New Years’ day with Christmas money. I was 7 months pregnant with my firstborn. I always told Gabe he was my “first adopted”.

Gabriel was a Bichon Frise. Even though he was a purebred, I purchased him for only one hundred dollars. There were two reasons that he was such a “cheap” puppy.

First, he had little freckles on his nose and foot pads. These coloring “imperfections” made him too flawed to either show or breed. He fit in perfectly around here – we aren’t show offs either.

The second reason I got such a deal was that I traveled out into the country to find him. Gabe was born on a farm an hour outside of town. It was a funny scene when we found him. There were seven tiny white balls of fluff bouncing around like ping pong balls in this dull sitting room. It was a blur of fur. He was the one that I caught.

Over the years, I spent hundreds of hours grooming Gaber. I quickly discovered that professional grooming is very expensive for Bichons, so I learned how to do it myself. That is how I use to always handle everything – just tackle it by myself. I got a book from the library. And Gabriel and I figured it out.

He was gorgeous and tried to cooperate with me. His favorite part was running around after a haircut listening to us say how handsome he looked. He posed for lots of pictures. Even family portraits.

Gabe had a lot of unusual qualities. He loved visitors so much that he often threatened to go home with them. We had prayed he would always make visitors feel welcome. He certainly did.

One of Gabe’s funniest tricks was to bounce straight up like a basketball in front of the window in our front door. The window was four feet off the ground. It was so funny to see the reaction of people when they rang the doorbell. Within seconds, they were face to face with Gabe. Not what they expected. And then he was gone. And then he was back. Up and down…

Gradually, Gabe slowed down. Eventually, his bouncing days ended. But he found other ways to express his ebullient personality. He helped me raise four of my children. It was obvious that he saw himself as one of the parents, not one of the kids. Firstborns are like that – even when they are adopted.

During the last years we had Gabriel, he developed arthritis all over the place. We grew old together overnight. I became unable to care for him and he became unable to do the things that showed people how cheerful and funny he was. Neither of us gave up though.

When his hair got so long he could not see out, I would painstakingly groom him. He would patiently stand still. It might take hours. He was my angel. I used to sing to him the song by Sonny and Cher, I Got You Babe. But, of course it went like this: I Got You GABE.

I miss my Gabriel today. I think of him when I get in bed each night and my hips and shoulders pull out of place the same way that his did. I think of him whenever I hear the songs I sang to him every day. And I know better now than I did 20 years ago: he definitely was a first quality dog.

Transparency and the Wall

Communicating about Rheumatoid Arthritis

This post is an answer to my dear friend from Oz:
She writes about wondering why, as a woman with Rheumatoid Arthritis, I am usually so private about my health issues. She also praises me for "coming out" to write this blog. She wonders whether I had to overcome "false pride" as she did.

Wow. I never thought I was "coming out," so I thought about your letter all day. I did not ever try to keep my RA in the closet. (It is much to large to fit in there.) So, I am glad for the opportunity to explain how I got to be where I am.

No, dear friend, the reason I answer, "Fine" when asked about my health is not pride. I do not try to hide the RA. There are more complicated reasons for the lack of openness with certain people. I have always been willing to be honest about the RA, so blogging was not a giant leap for me. I love to share and network with others who are searching or hurting.

Now is the time when I will actually do what you thought I did already: be transparent when it is uncomfortable.

When I first got sick, I used to try to explain why I could not do things anymore. But people did not understand because they do not know about RA. People who knew me before I was sick did remember how I had been so agile and strong. However, nobody here knew me - since I moved here right before I got sick.

Sometimes, I was hurt as much from reactions to RA as from the RA itself. Reactions I have received include cold silence, changing the subject, comparing RA to a hangnail, and laughing out loud, "Yeah, right, like you are old enough for arthritis!" I was encouraged to get over it.

I could write a book - No two books: one book about the way I have been treated and a second one about all of the other RA folks who have told me the exact same stories. That's right! We actually swap stories because we trust each other.

Anyway, I won't ever write those books. Instead, I will put my energy into making a difference. My humble goals:

1) Education of the whole world about what RA really is.
2) Helping a few RA patients to get more out of their lives.
3) Be one tiny (but bright and shiny) dot in the "connect the dots" puzzle of curing RA.

So there you have it, my small friend in the sparkling red shoes!
It isn't pretty. It isn't pride. It's plain old self preservation that made me do it.

I promise I'll do my best to follow my own advice: share with those that will listen, but not feel responsible for others' denial. Sometimes, that denial is a wall that is too high to scale. Didn't I tell you that I have a disability, after all?