Reactionary!

I’m nursing a hangover of sorts. Not the kind preceded by an evening of tequila shots and dancing. This is a different kind of hangover – the kind where the fun comes after the headache and nausea – not before. It’s what I fondly refer to as the Methotrexate Hangover.

I know plenty of people who take Methotrexate. Many suffer no side effects. I am not one of them.

Today’s side effects are unusually severe – blinding headache, nausea rivaled only by pregnancy, exhaustion, the inability to do anything productive. I take my MTX on Thursday evenings after dinner, and on a typical Friday, I’m more fatigued than usual, with a mild headache and a little queasiness. But on occasion, the meds affect me more or less than the average. Today is a more day.

On the whole, these days don’t bother me anymore. I have learned to accommodate them; to be flexible with my own routine. I am aware that anything scheduled on a Friday may have to be postponed or cancelled. I am also aware that some Fridays, I feel almost fine. The question is: do we gripe, complain, and hate life because our meds have side effects? Or do we slow down on those days, thankful to have fairly normal movement and minimal pain the remaining six? I choose the latter. I’m enthusiastically willing to sacrifice one day each week, so that I can feel well and productive the rest of the time – especially knowing that I am preventing long term damage and deformity to my joints with this one day.

I don’t know why some weeks are worse than others, or why some people suffer while others don’t. After five years of questioning, I still haven’t found a pattern or a trigger. For me, the benefits of MTX outweigh the risk of side effects. I am content in knowing that I can proactively impact my RA – that I am empowered – by my meds. Even if they make me feel hung-over sometimes.

Happy Thanksgiving

The sun is up, and it’s almost time to put the turkey in the oven. In a few hours, the house will be filled with the savory smells that bring the memories of Thanksgivings past to life. It took a lot of work to get to this point.

We have so much to be thankful for – so naturally, Thanksgiving is a big deal to us. It takes a minimum two days to pull off the perfect meal. Yesterday was a sort of culinary prep marathon. I ironed the table linens and set the table, placed the centerpieces. I peeled five pounds of sweet potatoes, then chopped them into one inch cubes. I rolled pie crust. I diced two pounds of onions, and an equal amount of celery. I mixed cornbread, and cut it into cubes for stuffing. I minced cups of rosemary, sage, and thyme. And I washed endless pots, pans, knives and cutting boards.

At the end of the day, my hands and wrists had had enough. Swollen, red, and achy, I submerged them in warm water, and wrapped them in warm compresses. It was the kind of overuse treatment reserved for a vigorous workout. I ignored my swollen feet and knees – they weren’t happy about standing on a tile floor for the twelve-hour cooking extravaganza. But they didn’t take the abuse that my hands did, so they had to wait in line.

Today is less a chopping-mincing day, and more a heavy lifting day. Moving the turkey in and out of the oven, stirring a roux, pouring drippings over it from the roasting pan to make gravy. Removing casseroles filled with sweet potatoes, stuffing, and green beans from the oven for placement on the warming tray to await the star of the show. Hand whipping mashed potatoes.

I’m thankful for another year that I am capable of putting on this affair, and hopeful for many more. I’m well aware that my condition can decline at any time without notice, and that epicurean events like my kind of Thanksgiving may not always be a possibility in my future.

I'm thankful for my family and my home, for the United States, for a job and food on the table. I’m thankful for my faith in God. And this year, like the five before it, I am thankful for my rheumatologist, and for the advances in medicine that have made today possible for me. I’m especially thankful for the chemists at Amgen who created Enbrel.

To all of you, and especially to those who had to overcome a physical challenge to make this day joyful for the ones you love, Happy Thanksgiving!

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!

Get Moving!

We need to get moving.

If someone offered you a remedy for your arthritis– something that would reduce pain and swelling, strengthen your bones and the muscles surrounding your joints, and would reduce fatigue, would you take it? Incidentally, it would also keep heart disease and depression at bay. It would even help you lose weight. Did I mention that it’s completely natural, and there are no negative side effects? And – bonus - it’s free! Would you take it? Okay – I might be looking behind the proponent of this remedy for the hidden medicine man decked out in tribal garb, too. But if there was a spark of truth in there, you bet I’d try it.

Here’s the good news: it does exist. It’s called physical activity. And study after study has proven it works. It’s worked for me.

In a summary report of the U.S. Center for Disease Control, the Surgeon General found that, for people with arthritis, “Regular physical activity can help control joint swelling and pain.”

What’s more, the Arthritis Foundation refers to physical activity as “Arthritis Pain Reliever”. The Foundation offers programs in exercise, aquatics, tai chi, and walking. These programs have proven to have a positive impact on thousands of people affected by arthritis by improving flexibility, range of motion, and muscle strength.

Perhaps most compelling is a study by Johns Hopkins Arthritis Center, written by Susan Bartlett, Ph.D. (see www.hopkins-arthritis.org/patient-corner/disease-management/exercise.html). Dr. Bartlett’s findings are in agreement with those of the CDC and Arthritis Foundation, but explain in greater depth how exercise affects the body.

According to Dr. Bartlett’s article, “Regular activity replenishes lubrication to the cartilage of the joint and reduces stiffness and pain.” She also discusses the reduction of anxiety and stress in patients that exercise over sedentary patients, and indicates that preliminary studies prove moderate-intensity lifestyle exercise (like walking) are as effective as rigorous activity in improving mood.

I promise you, I have tried this, and it works. As always, check with your doctor first (as did I) – and then lace up your sneakers and get moving! You (and that medicine man over there) won’t regret it.

Small Victories

On a recent visit with my rheumatologist, it was decided that I will, after nearly five years, finally begin to wean off of Prednisone.

Before my appropriateness filter kicked in, I actually cheered out loud. It couldn’t be helped.

Prednisone can be wonderful – it was the first drug that helped ease my fatigue; the first drug that began minimizing some of the pain. But it’s also largely to blame for the unattractive widening of my face – a physical attribute that I am painfully conscious of. Stomach pain (and for some, ulcers), osteopenia, increased dental cavities, shrinking breasts, increased appetite – like many of you, I’ve suffered through the not-so-much-fun side effects of this drug in order to reap its benefits. So you can imagine my joy when I heard that in one month, I’ll be done.

Oddly, though, there is also a small amount of fear, too. I wonder if I will have the same energy levels when I am no longer taking Prednisone. I wonder if I will experience more flares, or if certain joints, like my knees, will once again be painful and stiff. I wonder if I will still be… me.

For now, I will celebrate this change. My condition must be stabilizing – even improving – if my doctor feels I am ready to face the world without Prednisone. That fact alone gives me the motivation to persevere; to overcome the minor setbacks that may lie ahead.

Meet My Trainer

This is Alberto. He’s my personal trainer. Every Monday, Wednesday, and Friday, Alberto reminds me that he is not my friend. He invents new and creative ways to torture me. And every day, I’m thankful for it.

There was a time when I could not bend my knees. Imagine. I couldn’t put away cookware that went in the lower level cabinets - couldn’t pick up a piece of paper dropped on the floor, or bend to take a picture of my beautiful children. As my RA meds began to work (and Lord knows, there are many), my ability to use my joints again improved dramatically. Still, before I began training with Alberto, I could not do a free-standing squat. And now? I can do a one-legged squat. I can do weighted lunges. I can step up onto a bench that’s two feet off the ground. I may moan and groan – especially during the last set. But every day I thank God that I can do these things. I will never take it for granted. I know what it’s like when you can’t.

I sought Alberto as a trainer because a friend trained with him, and cut her clothing size in half. I learned that he was a physical therapist by profession, and that he specialized in sports rehab. I wondered if he would be able to transform me the way he did her – despite my RA.

Well, I’m still no supermodel – and probably never will be. But I can kick a bag at chest level 96 times without collapsing. I can do step-lunge combinations. I can put away all the pots and pans, pick up a piece of paper from the floor, and take pictures of my kids. I can even train to run a 5K. So thanks, Alberto. Because even though some people may not see what’s special about this, I consider it a miracle.

Let's Move Together!

The Arthritis Foundation’s Central Florida Region will kick off Arthritis Awareness Month by holding the 2nd Annual Let’s Move Together Walk on May 1 in Avalon Park. (http://2010aworlando.kintera.org). This important event serves not only as a major fundraiser; it reminds us of the importance of movement for people with arthritis.

For me, exercise, including a regular walking regimen, has been a tremendously effective tool for managing pain, reducing flares, and elevating energy levels. When I was first diagnosed with RA, I would have found anyone who advised me to get moving crazy. It hurt just to stand, none-the-less walk. Pain notwithstanding, I was so tired that I couldn’t imagine mustering the energy for a jaunt around the neighborhood. Instead, I wallowed. And the more sedentary I was the stiffer and more painful my joints became. The sudden halt in activity prompted a near 20 pound weight gain. According to WebMD, an extra pound of body weight adds four pounds of joint stress across the knees. Babying my joints wasn’t reducing my pain – it was increasing it.

Sometimes the least likely option is truly the best choice. I started by taking short walks outdoors, and over time, increased my distance and pace, until I was walking five miles each day in just over an hour’s time. I started feeling well enough to venture into the world of strength training. I started feeling well enough to return to my life, as I knew it, before RA.

Exercise is not a panacea or cure for arthritis, but it is a valuable tool in managing the effects of arthritis. That’s something I can live with. Now let’s move…together!