Will You Do Blue?

This summer, the MLB All-Star Game was held at Angels Stadium in Anaheim. Though every team was represented, the stadium was, nevertheless, a sea of red. Red t-shirts, red jerseys, red hats. There was such a sense of solidarity there – a common bond among strangers. It evoked memories of camp color wars, high school pep rallies, sororities and fraternities. Pink ribbons remind us of breast cancer; yellow, of our soldiers overseas. The simple act of donning a color can inform the world that you stand for something; that you are a part of something greater than yourself.

Tuesday, OCTOBER 12 is World Arthritis Day. I invite each of you to join me in DO BLUE by wearing BLUE for someone you love who has arthritis (even, and especially, if that someone is you!). Show your support for and solidarity with millions of people affected by this disease, and call attention to the most common cause of disability in America.

Landmarks across the country will be turning blue on October 12, including the New York Stock Exchange, Niagara Falls, and Miami Tower (for a complete list, check out www.fightarthritispain.org/worldarthritisday ).

Help the Arthritis Foundation reach the goal of walking 24,900 miles - the circumference of the world! – by October 12. Let your steps be counted! Log your miles at www.fightarthritispain.org/worldarthritisday. I personally pledge to add at least 25 miles – how far will you walk?

I’ll be looking for my friends in blue on the 12th. I hope to see all of you!

Halleluja Chorus

Today I sing the praises of the emotionally-charged two-word phrase: normal biopsy.

A biopsy invokes fear in even the strongest among us. No one faces such a test without considering what if; without reflecting on one’s own mortality, and the impact his/her absence would have on loved ones (particularly children). I don’t think I’m unique in that.

It was my reaction to learning that something on a test looked suspicious – that a biopsy was indeed recommended – that surprised me. My knee-jerk response was, “Oh God, what will this mean for my RA – can I still take Enbrel?” Imagine that. Facing the possibility of a terminal illness, my instinctive response was fear surrounding arthritis – not cancer.

That, in a nutshell, is how serious arthritis can be.

I remember years ago, going through a stack of mail filled with requests from various charities. My general rule back then was to toss everything except requests from the American Cancer Society and the American Heart Association – the charities I unquestioningly supported, because those were the illnesses that were killing Americans. Arthritis may be painful, but it wasn’t deadly, and my funds were limited.

Now I know better. Arthritis can destroy quality of life. It is the leading cause of disability in the U.S. And despite the inaccurate characterization as a disease of age, arthritis affects people of all ages – including small children. For auto-immune forms of arthritis like mine, onset usually occurs between the ages of 25 – 50. I was 37.

Luckily for me, and millions of others like me, there is help, and there is hope. So for today, I give thanks that my biopsy was normal, and that I won’t need to learn what affect treating cancer would have on my arthritis treatment. Here’s hoping I never find out.

It's Okay to Ask for Help

I was on my way to chaperone my son’s very first preschool field trip. It was November 2005, and we were visiting the local fire station. Andrew’s one true passion in those days was vehicles, and the opportunity to climb aboard a real fire engine was met with the kind of unadulterated joy and enthusiasm that only a three-year-old can muster. It was a moment I would want to hold on to forever.

As I grabbed my keys, I eyed the camera left on the kitchen counter the night before. For a brief moment my mind raced – you only get one first. I took a sharp breath and closed the door, leaving the camera behind.

You see, I knew I couldn’t use it. I simply couldn’t bend. And anyone who has tried knows – if you want to photograph a child, you must squat – and I couldn’t. All that I could photograph was the top of his head. I decided that some moments should be trusted to our memories, sans Nikon.

The trouble is, this was even more precious than I could have imagined. The exuberance, the sweetness – I wanted to capture it and hold on forever. I knew that as he would grow the memory of the chubby little cheeks and mushroom haircut would fade and morph into the big boy he would become. Damn – I wanted a picture.

I noticed another mom with a nice looking Canon. It took nearly the entire trip for me to gather my courage and ask, and at that, I was fortified only by a small lie.

“I was wondering, ditzy moment – in all the excitement, I forgot my camera. Would you mind taking a picture of Andrew for me?”

The following day she handed me an envelope. It was an absolutely perfect picture of Andrew, holding the fire hose.

I learned something valuable that day. It’s okay to ask for help. Sometimes, we can’t do everything that we want to do, or used to do, or believe that we should be able to do. Sometimes, we need to drop the shame, and drop the fear of vulnerability, and just come right out and ask. It sounds so simple and obvious, but I had a really hard time learning this. Maybe I couldn’t accept that I had RA, and didn’t think others would accept it either. But what I’ve learned is that people, for the most part, are kind. I’ve yet to meet judgment or pity when people hear that I have RA – only kindness. Help is there. Don’t be afraid of it.

What Are Your Triggers?

Some blame tomatoes. Some blame the weather. Some blame their spouse. Are any of them right? Having lived with rheumatoid arthritis for five years, I’ve yet to draw a conclusion on what causes flares. But I have made a few observations.

What are your triggers? I believe that the answer to this question will be different for everyone. It takes a lot of time, and attention to one’s body, before it can be answered.

When I was newly diagnosed, I did extensive research on this topic. An idea is circulating indicating that nightshades – fruits and vegetables such as tomatoes, eggplants, and peppers – are at the root of the inflammatory response, and should not be consumed. I experimented with elimination and re-introduction of these foods, and found absolutely no foundation for this claim. I read similar accusations against corn, and came up with the same conclusion: it was harmless for me. Dairy? Same story. Yet again, I eliminated and re-introduced it to my diet, and found that it had no effect. I tried limiting my protein intake, eating only plant-based foods, supplementing with glucosamine and chondroitin. I played guinea pig for months. None of it had an effect on me.

Yet I do notice that if I go a little crazy on sugar…pow - flare. I haven’t read a single report that even hints at a relationship between arthritis flares and sugar. Yet I have observed a pattern in my own body: too much sugar → arthritis pain. So I avoid it.

We’ve all heard old wives' tales about elder-folks who forecast weather via aches and pains. Can you tell if the humidity has increased, or that a storm is coming, by the way your joints react? I, quite often, can. Yet there seems to be no proof that weather causes flares.

On the other hand, stress has been proven to cause flares. In fact, it is suspected that stress may even be capable of triggering the onset of the illness. Stress can wreak havoc on our lives in so many ways. This is going to sound cavalier, but I mean this sincerely, we need to avoid it. That may mean yoga, or meditation, or breathing exercise. It may mean taking a walk, or turning off the news once in a while. Learn what de-stresses you, and start doing it!

Another known set of triggers – even less controllable than stress – are viruses and bacteria. While we can’t control what’s floating around out there, we can do the little things – like washing hands more frequently and wiping down the shopping cart before taking a spin around the store.

Conversely, I’ve found that exercise decreases flares. If I stop working out, I start having more and more pain.

In my experience, keeping a journal was a tremendously helpful tool for identifying patterns of flares. What was I eating? Experiencing? Feeling? What was the weather like? Knowing what brings on a flare is empowering. Who couldn’t stand a little of that?

Travelling With Arthritis

Ah, summer – that glorious but fleeting time of year when the kids are out of school, the office is dotted with closed doors and unlit nooks, and distant places with limited internet service beckon. Many of us will answer that whispering voice. For those of us who do (and happen to live with arthritis), a few extra steps in the planning will reduce wasted time, stress, and help us to enjoy our precious time away to the fullest.

Travelling by air? Many airlines now offer seating areas with extra leg room, for only a few dollars more per ticket. You don’t need to fly first class in order to have a seat with enough space to move your legs. Joint stiffness sets in during periods of stillness and immobility, and for travelers with arthritis, small spaces can be, quite literally, painful. Economy Plus provides the space you need to give ankles, knees, and hips a change in position and a stretch. When you walk – not limp – down the aisle to your vacation, you’ll be glad you invested in the added space.

Travelling with injectable meds, such as Enbrel or Humira? Be sure to have an I.D. card or letter from your doctor stating that you must carry your meds – including the needles – on board. Do not try to pass through security without this! Also, be sure to have an adequately insulated cooler and ample ice packs to last the duration of your trip. Biologics need to stay cold to be safe.

On the subject of meds, it is wise to carry all of them – not only the injectables – on your person. Face it – luggage gets lost occasionally. You’ll lose a big chunk of time trying to replace them. Worse, missing doses can have negative consequences on your health and treatment progress. Make room in that laptop bag – this is important.

Are you staying in a hotel? Be sure in advance that your room includes a refrigerator. Be aware that some hotels assess a fee for this convenience.
While checking on the fridge, ask about needle disposal. It’s wise to carry a Sharps container, but not always convenient to transport it back home. Many hotels provide service for this. If your hotel will not dispose of your needles, remember to keep your doctor’s note or ID card with the container for your return trip.

Think twice about luxury bedding. A feather bed may sound like its own brand of vacation, but my experience with cloud-like softness was not worth the back pain in the morning.

Are you travelling to a new region? Check out the terrain. Exploring San Francisco by foot may sound enticing, but you should be aware of the affect the steep grades may have on your knees. Planning on exploring every inch of sandy beach in St. Lucia? Delicious as it sounds, it could wreak havoc on your ankles and hips. Awareness will help you to make the most of all your location has to offer.

With the planning out of the way and no minor detail left to hassle you, you will be free to relax, and to fully enjoy every moment of your vacation. Go ahead – you deserve it. Enjoy!

Fairy Dust

We moved to Florida in 2005. I had just been diagnosed with RA, and my symptoms were not even remotely under control.

My daughter, Kate, was just six then, and painfully shy. She was invited to a birthday party at Libby Lu, a retail wonderland for all things girlie that hosted make-over parties for the three-to-nine-year-old set. Kate reveled in the delights of her sparkly up-do, makeup, and pinky-pink nail polish. But she otherwise clung to me as her resident BFF at this soiree.

When the party pixies were all made-over, the hostess brought out the Wishing Dust. The children received special wands with feathery marabou tips, and were instructed to dip the wands into the pot, filled with glitter and dreams. If they sprinkled themselves while making a wish, it was sure to come true. Kate gave both of us a generous dusting as she earnestly made her wish.

The next morning, she asked me how I was feeling. When I told her, “Not too bad today honey. I think it’s going to be a good day,” her eyes grew wide. “It works!” she exclaimed.

In that very moment, my heart broke. Given a single wish, my baby would, without hesitation, give it to me. She longed to have her mother back – the one who put her in the Baby Bjorn and hiked mountains; the one who took her to tennis and dance lessons; the one who spent hours at the lake; the one who got down on the floor to play board games and solve jigsaw puzzles.

No matter how hard we try to keep the pain of arthritis to ourselves, our children are affected by it. They recognize that we are changed. Some, like Kate, would do anything to help us. Others may resent it. Still others may experience fear – is mommy sick? Is she going to die? Am I going to be like she is? Being a parent with a chronic illness comes with a unique set of challenges.

For me, talking to my children has been the best medicine. Reassure them that they are safe, and they are loved. Maybe mommy can’t play ball today – but we can read together, or watch a movie. I don’t hide my RA from them; we share the trials and the victories. Through my RA, my children have developed compassion for others with compromised health. Most importantly, my children still love me, despite the fact that I’m not perfect. Happy Mother’s Day!

So Long, Moon Face!

Those of you who have read my earlier posts know that I recently stopped taking Prednisone. Today I want to share with you an observation, in retrospect.

I was indulging in a nostalgic moment with my sister, browsing through photos last weekend.

“Oh, Cheryl – your moon face is gone!” she exclaimed, examining a brand new picture of my daughter and me.

I grabbed the album out of her hand and searched the face in the picture as if it contained the whereabouts of the Holy Grail. Indeed, it told me something that I wouldn’t dare to let myself hope for previously: my face is starting to look more like it used to. Feigning a need to stir sauce, I abruptly walked away, hiding the tears that I just couldn’t suppress. I’ve been waiting five years for this day. Waiting, but not allowing myself to hope – at least not too much.

Dealing with R.A. can be overwhelming. As we struggle through each day, coping with the simple things we can no longer do, such as chopping vegetables, scouring a sink, running, even clasping a bra behind our back – we face each challenge, at every juncture assessing what needs to be a priority in that moment. Overcoming pain and loss of range of motion becomes the most basic, primal focus. As we ascend from a flare, or as our meds begin to help, focus shifts to managing fatigue and the side effects of medication. We hardly allow ourselves to indulge in mourning over the loss of our looks – a vain and superficial pursuit in light of the infinitely more pressing issues about our health. But dealing with Prednisone’s telltale moon face can be emotionally devastating – even if we don’t want to admit that to ourselves.

So I am going to tell you this, and I mean it from the heart: YOU ARE BEAUTIFUL. You are neither vain nor superficial for feeling anxious about the changes in your appearance that you bravely and willingly subject yourself to in order to mitigate a far greater problem: arthritis pain. You are courageous and strong. And, believe it or not, you will not be on Prednisone forever.

Today, I am basking in the light of my face returning to normal. I am reveling in the joy that I no longer need Prednisone. I am ever grateful for the relief it gave me, but even more glad to bid that phase of my treatment adieux. So long, moon face – hello me!