“Will do. See you in the morning,” I said as I left the garments hanging on the rolling rack that we would attack with steamers in the dark of the early morning. One shirt to change, really no big deal; it’s just control.
Catching a cab from the WABC-TV studios on the west side to Bloomingdale’s, the closest department store on the east side, I realized I couldn’t do it. I couldn’t go to the store and buy a replacement tuxedo shirt. I was depleted. The thought of walking through a department store, putting one throbbing foot in front of the other, overwhelmed me. I had no energy left. I was totally and completely exhausted.
Dialing my cell phone, I reached one of my junior assistants, “Bonnie, I need you to do me a big favor. I need a striped tuxedo shirt, model size, for tomorrow. Yes, you need to get it now, orders from the honcho. Sorry, but I have a major business commitment tonight or I would pick it up myself, and Amy’s on overload. See you in the morning, six sharp.”
Bonnie didn’t need to know about my RA. Something changed when someone knew. I was aware of the way my two sisters watched me. Independently of each other, I could follow their eyes as they looked to see what shoes I was wearing, how my hands looked, and how I got up out of a chair. I was the oldest, so I was always the one to watch over them. Now they were reversing our roles. My middle sister Susan was a former nurse, so her eyes were trained to look for the signs of the disease’s advancement. My younger sister Pam would look deep in my eyes as if the secrets to my health were there, waiting for her to evaluate where I was on the health scale. Both of them were now attorneys, and they couldn’t help but ask questions: “How are you feeling? Any changes? How are the new meds?” Instead of feeling loved, which is what they intended, I felt trapped, defined by my disease. When I was with them I couldn’t be in denial. And having lived a childhood of denial, it was for me, with this disease, the most comfortable place to be. When we were all together I envisioned the way they whispered to each other when I left the room. It only made me feel more self-conscious.
Sometimes, on good mornings when I was alone, I could forget that I was sick. Then I’d be with one of our four kids, Shelly’s three and my son, and I saw the way they watched me, asked me how I was doing in that questioning “is there anything wrong” tone of voice that brought it all back home. I was in dire need of those little moments of escape. The times I could forget and feel normal, if even for an hour. The more people who knew, the harder it would be for me to cope. The entertainment world has little tolerance for illness. One slip and I would be labeled “unreliable, sick, defective,” as if I had a drug problem. I wasn’t a Magic Johnson who could shock and touch the world with his AIDS revelation. Nor was I the beloved Michael J. Fox, who put Parkinson’s disease in the spotlight. I dealt with my illness more like Princess Di with her bulimia or Uma Thurman with her depression—I hid it. Today Jessica Alba talks openly about her battle with anorexia and Christina Applegate deals with her breast cancer in front of the media. That’s now, and this was then.
“Change of plans, just drop me at the Essex House,” I told the cab driver.
“Will you be needing a cab tonight?”
“No, not tonight.”
This is my author photo for my first book cover where I used all of my beauty expertise to try to hide my steroid induced “moon face.”
7
Playing with Fire
FEBRUARY 1992
“Everything’s in place. We just need Michael to confirm which couples he likes,” I told my producer on the phone at Live, sitting at my piled-high desk in my condo, looking out at the sunshine-drenched Hollywood Hills.” We were one week away from our weeklong “Light Your Fire Makeovers” and still no decision from our executive producer, Michael, on which five couples would be chosen. He’d let the finalists’ folders sit on his desk for more than a week. “I can’t get him to concentrate,” my producer told me, apologizing for what we both knew she could not control.
This was nothing new. Michael always liked to work on deadline.
“This is New York. Everything’s at your disposal. Anything’s possible,” he told me over and over as he made the last-minute demands that drove me and everyone who worked for him totally crazy. He was right. People changed their lives in order to make a plane the next day to come to New York and be on TV. Stores rearranged their schedules to accommodate our needs, and salons clamored to have the opportunity to work with us. I, of course, adapted. Once anxious to have everything locked down and organized, I now went with the flow, knowing, like Michael, it would somehow work out. If we alienated a few people along the way, Michael didn’t care. He taught me it was not only okay but also to be expected. The rationale? It was always the same. We were, after all, the top-rated morning show on television.
Only now, my nervous system was revved. After so many changes in my rheumatoid arthritis medications, searching for the combination that would give me a respite, prednisone, the magical yet dangerous steroid, was what helped me through the times when nothing else would. The type of steroids I took are called corticosteroids. They are very different from the anabolic steroids that athletes use to develop muscle. If I was in desperate pain, a visit to UCLA for an IV of steroids took it away immediately. If I woke up on a morning when I had to do television and my joints were so sore I couldn’t walk, a high dosage of steroids limbered me up. Instant relief. They took the inflammation down like nothing else could. They took the pain away, but not without a price, and the more I took them the higher the price became. I never asked about the side effects. I didn’t want to know. I only wanted relief. If steroids were often the only thing that worked, and a higher dosage meant more relief, I was all for it. I would deal with any side effects when I felt better. When you’re in pain, side effects become secondary to relief. Steroids also made me eat everything in sight, stare at the ceiling when I needed to sleep, and become an overall jittery, nervous wreck. My blood pressure would soar, but my joints felt like new. Steroids put my body into overdrive, 24/7. They were an out-of-body experience, but at least my pain was somewhat manageable, even though the drugs made the other parts of my life spin out of control.
Looking back I understand why I was on steroids. A high dosage would immediately relieve the inflammation in my body when everything else failed. Other times a lower dosage over a longer period of time would do the trick. A frantic call to Dr. Kalunian to say I couldn’t walk and I had to attend an awards show, do a television segment, or participate in an industry fund-raiser made it an easy decision for him. Actually, steroids were the only decision, the only relief at these last-minute emergencies. Instant relief, the Band-Aid when I needed a reprieve. I was in such desperate need of being able to function that I never stopped to ask about the long-term side effects. Denial. My childhood of denial now became a tool of my adult existence. Relief was all I cared about at the time. I didn’t know what the future held. Pain made me deal with the present. Now I know there was a penalty for the quick fix. I didn’t always have to pay right away, but there was no doubt that my charges were accumulating, usually with interest. The immediate charges: instant weight gain and a moon-shaped face. I was worried I was beginning to look like my own “before” picture. Long-term charges: loss of calcium to my bones that caused osteoporosis, and some heart, kidney, and liver issues. Would I take prednisone again? Only if it was an absolute last resort. Do I regret taking it? I didn’t have a choice. At the time, my focus was on living as normally as possible, and there was really no other option.
I had a new empathy for people who ate too much. Before steroids I liked food but didn’t live for it. Now when a waiter placed the breadbasket on the table I could hardly wait to dig in. I stopped at the 7-Eleven for a Coke and chips on my way to a meeting. I carried not one, but three protein bars in my bag. Sometimes I would even indulge in a Snickers or Reese’s Peanut Butter Cup. I was always either thinking about food or eating it. And it showed. I had gained more than twenty pounds and my joints were still too so
re to exercise, and unlike today’s protocol of keeping joints moving, then the theory was to rest your joints so as to not aggravate them. Today exercise is seen as a treatment, a way to keep the joints moving. My normal size six had changed to a size ten in a month’s time. In three months I feared I could be playing for the Dallas Cowboys. Size ten was a nice average size, of course, unless you happened to work in television, and worse yet, in fashion.
Over dinner at California Pizza Kitchen, as I was dipping my bread into golden puddles of rich olive oil, Shelly looked over at me “Are you up for this trip to New York? You don’t seem to be doing well.”
“I’ll be fine. This cough is nothing, just irritating.”
“I wasn’t referring to just the cough. You’re having such a hard time walking.”
“Only sometimes. I’m really doing better on this new combination of drugs,” I said, devouring my barbecue chicken pizza, my fingers coated in savory, sweet sauce.
“You really don’t have to work, Christine. Why don’t you take some time off and concentrate on your health? You can always pick up where you left off in the business.”
“That’s not even a consideration. I’m not a giant in the industry like you. I’m easily replaced. I’ve worked too hard and long to get where I am to give it away.”
“You underestimate yourself. You’re great at what you do,” Shelly said looking at my empty pizza pan. “Here, have some of my chopped salad. I had a big lunch.”
“As long as I’m working. If I stop, no one will remember my name. I have a lot of things I need to accomplish, and giving in to my disease isn’t one of them.”
“I’m not saying give in, I’m asking you to make it your priority.”
“I will never make this my priority. For me that’s giving in to the disease,” I said, scraping my fork across Shelly’s plate to finish the last morsel of his salad.
“What happened to that teddy you used to wear?” my husband asked, lying naked as I crawled into bed wearing my Calvin Klein flannel pajama bottoms and a white long-sleeved T-shirt. I blew out a few of the lavender-scented candles to dim the light.
“It’s just so cold,” I answered, kissing his neck, hoping to divert his attention away from my flannels. “I’m saving it for summer.” After a few more nibbles on his torso he forgot about the flannels. For a man who loved “thin,” he had not made any comments on my weight gain. I no longer paraded around naked and managed to light fewer candles and wrap an oversized bath towel around my body after a shower instead of a skimpy one. I also changed many of my slim pants and skirts for roomier, man-tailored ones. Being a fashion stylist helped when you were trying to conceal rapid weight gain. With my steroid-energized, high-speed state, I was wide awake and ready to play at night. Sex was a good distraction from pain and weight.
The one thing I couldn’t control or conceal was the weight gain in my face. My once angular jawline was now rounded into what doctors referred to as a “moon face,” a puffy, swollen look that is different from a weight gain. It’s more like an allergic reaction that swells the face because of the high dosage of steroids. Once the steroids are out of the body, the swelling goes down. This was one of the many side effects of long-term or high dosages of steroids about which they neglected to tell me or I chose not to hear when I was in desperate need of relief. I modified my hairstyle to a short, full-banged bob that helped cover up a little, but unlike my body, which I could fashionably hide, my face gave me away. I was dreading going to New York the next week. I had to come up with a good story if anyone said anything.
“Okay, Michael has picked our five couples. I’ll have them to you today so you can call and notify the winners.” My producer, relieved to have the choices made, called me early in the morning, the week before we began work.
We were cutting it close. I would fly to New York the next day and work on Couple No.1 the following day, Friday, in order to have them ready for Monday’s show. We would take their “before” picture in the studio right after the live show on Friday. Then it would be a day of shopping and hair. With the first couple I would have the luxury of having Saturday in case we needed a little more time. Once the week got going I had exactly twenty-four hours to complete each couple. In addition, Michael wanted them separated once the makeover began. We needed the camera to catch the incredible look of surprise as they saw each other made over for the first time in front of five million television viewers. It was great television, especially if we picked couples who genuinely liked each other. Having only interviewed them by phone, it wasn’t always easy to discern their relationship, but now with years of practice I knew the questions that revealed their personalities and how they felt about each other—most of the time.
“Have you ever done anything that might come up on air and embarrass you or the show?” I would ask. If they took too long to answer I knew we needed to move on to another interview.
“Let’s touch base at the end of the day,” my producer said, as relieved as I was that we were finally organized and ready. It wasn’t easy getting Michael to focus. I was glad that she was the one following him around the office trying to get a decision, and I was safely tucked away on the West Coast knowing that it would get done.
That afternoon I pulled into the UCLA parking structure off Westwood Boulevard. Inside the garage, my windows up tight and doors locked against the outside, I leaned my head back against the headrest and looked out at the hectic hospital activity all around me. Inside my car I felt protected in my own environment. I knew where I was. Maybe it wasn’t always a good place, but I had learned how to deal. Another layer of cover-up, and I could handle almost anything.
The medical building and its doctors loomed. Waiting, once again, to give me news about my health, sometimes good, more often not. Most of my life I had been able to keep the bad from penetrating my cocoon of denial. Even my childhood foster families weren’t able to infiltrate my cocoon completely. But RA was different; it worked from the inside out. Nothing could protect me from RA, from what news might await me in this building. With a deep breath I slowly and reluctantly left the safety of my car and walked toward the forbidding double doors and to the doctors who held my fate. Powerless.
In this medical environment I was powerless. I had been on a new drug, methotrexate, since October, and my doctor was slowly increasing the dosage as he tried to taper me off the steroids. When I first read about methotrexate, the information overwhelmed me. Methotrexate was described as a drug that inhibits the folate pathway, which inhibits inflammation. It is actually the most powerful and toxic medication to reduce inflammation by blocking the folate pathway. It was developed to treat leukemia with side effects that were long and intense. Nausea, abdominal distress, chills, fever, dizziness, fatigue, mood alterations—I had to stop reading. After two years of trying different medicines that either didn’t work on my joint pain or set off alarms with negative lab results, I had now entered the second phase of treatment, and with it the stronger, more toxic drugs. I didn’t have a choice. For me, rheumatoid arthritis was a gathering of disease inside my body, building up its forces daily, planning attacks on different joints. Osteoarthritis is a more common disease that almost everyone gets as they age from normal wear and tear on their bodies. Athletes get osteoarthritis at a much younger age because their sports activities wear down their joints. When a joint wears out today, often they can be replaced, or medications given to ease the discomfort. We always hear people say they can tell if it’s going to rain because their arthritis kicks in. It may be an old wives tale, but osteoarthritis is affected by damp weather, making many sufferers head to the deserts in the winter months for relief. Rheumatoid arthritis is a totally different animal. It’s under the immune deficiency umbrella like lupus or scleroderma. In a healthy body the immune system fights off infections and disease. In an immune-deficient body this system breaks down, and the body not only attacks itself but also is more vulnerable to other outside germs such as colds, flu, and allerg
ies. We use the term arthritis loosely, but in reality the difference between osteoarthritis and rheumatoid arthritis is huge. They are both painful and do damage, but rheumatoid is the lion to osteo’s lamb.
Now ready to move on to stronger drugs out of necessity, I convinced myself that if methotrexate could halt an attack, I was ready. With each assault my joints suffered more deterioration. Lately, the steroids offered less and less relief and more and more complications. I could no longer depend on the steroids alone to be my emergency fix. What would I do when I had to be on television and could barely move? I hoped methotrexate was my new answer.
During a recent appointment with my family doctor I mentioned the addition of methotrexate to my drug therapy, and instead of sharing in my excitement, he furrowed his brows.
“That’s a powerful drug, and with your new tendency toward bronchial problems you need to think twice about taking it,” he warned. “It also decreases your resistance to infection.”
Over the past two years I had become more focused on pain relief than side effects. I was desperate for anything that worked, and so far nothing did. Every now and again, I took a step back and realized how crazy it all must have looked from the outside. Chronic pain and desperation made me willing to do just about anything. I convinced Dr. Kalunian that I must be able to continue my life as normally as possible. So I went from drug to drug, adjustment to adjustment, searching for the combination that would put me in remission. Dr. Kalunian never gave up hope; he believed it was out there. Having tried so many drugs already, I was not so sure. All I knew was I had to get off steroids. I needed to lose this extra weight and have the shape of my face return to normal. I wanted to feel in control of my life and my body, instead of watching both spin faster and faster out of my grasp.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 7