Paige and I share a room with two queen beds. They give us so many supplements at Sponaugle that our room looks like a vitamin store. It’s overwhelming, to say the least. Soon we realize that even though it’s off-season, the hotel is getting too expensive for such a long stay and we need a kitchen so that we can cook simple things if we feel like it. Jaymes is also on her way to Sponaugle. Since there will be three of us, we decide to rent a three-bedroom condo. Dr. Sponaugle points out that I have high levels of mold in my body, as do Paige and Jaymes. This is a big problem for people with Lyme because it weakens the immune system. Therefore, any apartment we rent has to be tested for mold before we can move in. This is a challenge given the high humidity in Florida.
I love having Paige and Jaymes with me, but I also feel a great sense of responsibility because they’re looking at me for answers that I don’t have.
“You’re our fearless leader,” Paige says. “We’ve been able to ride on your coattails for the best resources and we will benefit from your strength and dedication. That’s why we follow along like ducks in a row.”
The most profound, life-altering part of being at Sponaugle has nothing to do with us or our journey. It is meeting other debilitated patients who have been fighting the battle against Lyme disease a lot longer than I have. Before I was diagnosed, I had no idea that this was an epidemic and that more than sixty-three hundred new cases are diagnosed each week: that’s more than nine hundred each day and almost forty every hour. And that’s just in the United States. Imagine what this means on a global scale. And this number includes only the Lyme cases registered by the CDC, not unrecorded, misdiagnosed, or undiagnosed cases, which are believed to be many.
When I first got to Sponaugle, they put me in a private treatment room which is nice and quiet. Although I certainly don’t view myself as a celebrity, I start to notice that the Housewives show is popular in Florida because everywhere I go people recognize me. It’s shocking. When we are at a stoplight, a woman knocks on the passenger window to ask if I’m Yolanda. When we go to the mall for underwear at Victoria’s Secret, I somehow end up taking photos with fans. This is all very new to me and not something I am conscious about and I’m certainly not looking too cute today because I wasn’t prepared.
“Um, you might start making a little more effort when you go out of the house,” Paige says in her sassy voice. “Because looking like this isn’t that great for your image, baby.” We crack up laughing because I know she is right. We end up leaving the mall without the underwear because it is a little bit overwhelming after being isolated for so long but also kind of strange to be recognized so far away from Beverly Hills.
Monday morning, we’re back at the clinic. As I try to make sense of this experience, I want to connect with other Lyme patients and talk, so I decide to wheel my IV pole though the treatment rooms. Name and status do not matter at this point. We’re all in this together, away from our friends and families, just trying to survive one day at a time. I’m especially drawn to the teenagers and elderly. They help me put things in perspective: no matter how shitty you feel, there is always someone fighting a worse battle than yours. It gives me a great sense of gratitude.
One day, I walk around the treatment room and am energetically drawn to a teenage boy sitting in a wheelchair. He seems barely coherent and is drooling.
“Hello,” I say, smiling as I sit down in the seat next to him. He just stares into my eyes, unable to use his words anymore. I put my hand on his hand for a long time because I want him to know that I understand what he is going through. He looks the way that I often feel. An older woman walks over to us and sits on the other side of the boy. As she gets closer, I see that she is not actually old, just tired.
“Our health insurance covered only thirty days of antibiotics, but my son has been sick for seven years,” she tells me, her voice shaking.
“So what did you do?” I ask, touching her shoulder. She looks so fragile and worn down that my heart breaks for her.
“We sold our home and everything we owned to pay for Lyme treatments, and now we live in a motor home,” she says. “We’ve been all over the country. Sponaugle is our last chance to get him well.” By the time she is done speaking, I can’t hold my emotions back any longer. I think about my own three teenagers and can’t imagine what her life is like. My interaction with this family touches my soul deeply. It changes the way I see this journey. I lie awake many nights. Why did God give me this experience? And what am I going to do with it?
The next day is rough. I’m emotionally drained and my body feels cold and agitated from all the fluids being pushed through my veins. After several hours of treatment, I walk outdoors with my IV pole just to feel a ray of sunshine on my skin. Standing in the parking lot, I notice a very old-looking motor home in the corner, which stands out because it’s really a small lot for cars only. The mother I met the day before comes out of the motor home and holds the door open for a man who’s carrying her teenage son in his arms. Something is wrong with this picture! No one deserves to live like that.
This is just one example. In six weeks, I meet many patients and their families with similar stories, and almost all of them are financially devastated. They took out bank loans or used retirement savings to pay for treatments. This is money they worked for their whole lives! The CDC says that a bull’s-eye rash is the sign of Lyme, but most people I met never saw one and none of them got cured with twenty-eight days of antibiotics. Some patients say that on their way to determining what was wrong with them, they were often told that their illness was “all in their heads.” Because a lot of these patients have gone untreated for so long, many developed other chronic conditions, like arthritis, headaches, encephalitis, painful or tingling neuropathy in their legs or arms, and facial paralysis. This is not surprising since it happens to 60 percent of untreated patients. The number-one complaint of all the people I meet is that living with Lyme is like being lost in a maze of the unknown: once you get in, it’s very difficult to get out because it’s a silent killer that ruins every aspect of your life. Every time you turn a corner, there’s another obstacle. Although organisms other than ticks are believed to cause Lyme, it’s insane that, when it comes to ticks, something the size of a poppy seed can devastate one’s life. The fact that we can’t get the treatment we deserve is even more unbelievable. These thoughts keep me up at night. I need to figure this out.
Lyme is a disease without an end goal. It’s like shooting blanks into the sky, praying that one will put you into remission. When my mom was diagnosed with breast cancer, it was frightening, and chemo and radiation had awful side effects. However, there was a clear diagnosis, treatment plan, and end goal, and luckily she got her life back. But there is no clear path with Lyme. I’m truly stunned when I learn that the first case was diagnosed in 1972. It’s been forty-five years! How is there still no proper testing available? How is there still no affordable cure? It’s hard to comprehend that we live in such a medically advanced country, yet people are left to struggle with this silent killer on their own. In 1982, the medical community honored Dr. Willy Burgdorfer’s discovery of a specific spirochete by naming it after him. This is Borrelia burgdorferi, which is probably the same one that has been nibbling on my brain for years. Lyme is six times more prevalent than HIV/AIDS ever was in the early 1980s, but the public awareness about it is virtually nonexistent. The world has come such a long way in uniting to help combat AIDS, so why haven’t we come together for Lyme? Why do I have to go all the way to Florida to get treated for a disease that is so common? This is an absolute crime. People can die of this disease, but you don’t hear about it unless you exist in the Lyme community, where people are desperately waiting for answers. And can we trust the information the government is giving us about Lyme? In the 1980s, we were made to believe that HIV/AIDS was a gay disease because that’s what the government was telling us. People would cross the street when they saw a gay person because they were afraid they would “catc
h” HIV/AIDS. How wrong were they then? The government promotes outdated testing and treatment guidelines and doesn’t acknowledge that chronic Lyme exists. As I learn about the injustice of the government’s lack of responsibility in this matter, I’m determined to get well and change this. If you dig really deep you can find different studies that prove different theories. We don’t really know all the different ways you can contract Lyme. Some say you can only get it from tick bites, yet others say it can also be transferred by mosquitoes. You should definitely be cautious about sleeping with your dog, since they often have ticks. Some even suggest that Lyme can be sexually transmitted.
My body is starting to respond to treatment and Florida is starting to look better to me. After about three weeks here, I have a little bit more energy. I feel well enough to push myself to walk on the beach every night at sunset. This feels like a huge accomplishment. In fact, I become obsessed with it, squeezing out every last drop of my physical energy to stroll on the sand and clear my mind at the end of each day. Sometimes Paige and Jaymes walk with me depending on how they feel. One night, there is a huge thunderstorm, the kind where the rain comes down in sheets. The girls don’t want to walk; they’d rather stay safe and dry in the apartment. But I don’t care about the rain; in fact, I get a big, black garbage bag, cut a hole in the top, and slip it over my head. The beach is empty and I’m the only crazy person out here.
As I walk barefoot on the wet sand, the rain whips against my face. It’s harsh, but I almost like the pain of it. I’m alive. I feel so close to God and connected to Mother Earth. I imagine that my soles on the seashore are filling my body with the ions and earth energy that I need so much and that the rain is washing away all the disease. Maybe the higher purpose of my journey is to bring awareness. I can use my platform to speak for Lyme sufferers who are too debilitated to speak for themselves. I truly believe that God often uses our deepest pain as the launching pad of our greatest calling. Perhaps this is mine. The scope of this disease is enormous. So many people struggle as much as I do or even more than I do, often with far fewer resources and much less support. I have to create awareness that helps develop better diagnostics and treatment.
Once I come to this very clear realization, I begin to share more and more of my journey on Instagram, Facebook, and Twitter. I post unretouched photographs of myself doing both mainstream and alternative treatments. These are pictures of my daily life and journey, the good and bad. I do this to bring attention not to myself but to a disease that desperately needs it. Some insensitive folks say that I’m sharing this information to get pity. If they only knew what my life was really like or walked in my shoes for one day, they would be ashamed of themselves. I know they respond out of ignorance; after all, how can I expect them to understand a disease that I don’t fully understand? Yet I don’t care what people think. My motivation is pure. I just want to figure out a way to make a change for the chronically ill. We may have lost our lives but we are still alive.
David isn’t able to visit me during the six weeks I spend in Florida. However, he wants me to meet him at Celebrity Fight Night, a charity event in Phoenix with Muhammed Ali where David is the musical director. It is a regular on our annual calendar. Although I’m starting to feel better, I use the word “better” loosely, very loosely, and I’m not in any condition to travel or stroll down a red carpet. But it’s important to David, and I see it as part of my duty as his wife. Truthfully, I’m starting to feel that David is becoming unhappy with the fact that I can’t be by his side the way I used to be. I try to make light of it and joke with him that he married a lemon. It’s sad but true. I went from being the funny girlfriend who was up for anything and had endless energy to the wife who is too sick to be by his side. He lost his wingman, his partner in crime, and I feel as if he’s starting to get impatient with my recovery. I understand that even brief periods of illness can strain important relationships in your life. A chronic condition like mine, one that has consumed years of our lives, poses enormous challenges.
I always say, “You don’t get it until you get it.” So maybe I can’t expect David to understand what I’m going through. Especially when, with a little makeup, I look normal. I know he does the best he can. Although the truth is this: he has a front-row seat to my everyday struggles. He was right by my side when I crashed to the floor in the gym in 2011, he knows I got in a car accident because I had lost all depth perception, and he saw me go from a social butterfly to a recluse. He was the one who took my blood pressure every day and recorded my unexplainably slow and speeding heartbeats. He witnessed the severe muscle cramps in my fingers and toes and picked me up off the bathroom floor when I fainted. He saw that I lost the ability to tolerate noisy places and that I could no longer write or speak eloquently on command. The list goes on and on, but all this doesn’t matter in this moment. There is no need to even talk about the frustration that comes with it all because there is no right or wrong. The only thing that matters now is that I stay centered within myself, focused on my recovery one day at a time.
Dr. Sponaugle doesn’t think flying to Phoenix is a good idea but I want to keep my commitment to David. I leave the clinic not feeling well, throwing up, and white as a ghost but somehow make my way to Arizona. Once I get to the hotel, I’m thrilled to see David as well as Gigi and Anwar, who surprise me. The kids and I stay in the hotel bed and snuggle all day while David is in rehearsals. Getting ready for the event is a challenge. My body feels weak, and I haven’t dressed in anything except sweatpants and pajamas for months. Makeup is not part of my daily routine anymore. When we arrive on the red carpet, I look good but don’t feel good. I put a smile on my face, yet I feel shaky and unwell. The crowds of people, the flashing cameras, the giant spotlights, and the noise are overwhelming, so I hold tightly to David as we move through the press line. This is difficult and I’m not really sure why I’m here. Yet there is one true highlight. At the end of the red carpet, I see a young girl waving to me, and I’m told that she’s been waiting to meet me. When I approach her, I notice a port in her chest right above the neckline of her dress. I instantly know that she is a chronic Lyme sufferer, too. I open my arms, and she gives me the biggest, tightest hug as we both tear up. We have an unspoken understanding.
“My parents didn’t know what was wrong with me, and doctors said I was fine and needed to see a shrink,” she says, barely getting the words out.
“But because of your story on The Real Housewives, we figured it out,” she adds. “Finally, I got the proper diagnosis. I’m on a new protocol and starting to feel better.” Meeting this beautiful angel is a profound and powerful moment and makes my cross-country trip worthwhile. It confirms, once again, why my recent epiphany about sharing my story is strong and right on. Helping others—even just one person at a time—is the higher purpose of my journey.
Fight Night is a success by all accounts: David does a great job, and I love and admire Muhammad Ali and his wife, Lonnie, for their dedication to Parkinson’s disease. But I’m in no state to be sitting at a very loud event. I’m so disconnected from the world around me that I honestly do not care who is performing or what is going on in this big ballroom. Sitting here feeling out of place just reminds me how inadequate I feel because I’ve lost my social skills. It’s hard for me to make small talk and hold a conversation. Thank God I have Gigi and Anwar on either side of me to keep my energy grounded while I fake my way through the night, pretending I’m fine. I smile and am polite to all the people who know me socially but don’t know me well enough to know what is really going on in my life.
On Sunday, I make my way back to Florida so I can wake up in time for my eight o’clock treatment at the clinic Monday morning. The trip definitely sets me back. Flying isn’t my friend. It always causes inflammation in my brain, which diminishes my eyesight and gives me an overall feeling of being unwell that adds to my daily soup of symptoms. That said, I’m happy to return to an environment I’ve learned to accept and to be back with
Jaymes, Paige, Dr. Sponaugle, and all the familiar faces at the clinic. My weekly labs show that I’m making progress which really motivates me to work hard. I continue my nightly routine of beach walks and I focus on building stamina.
The highlight of my week is knowing that Anwar, who is in middle school, is coming to visit me for his spring break. This boy is the sugar in my life, and I can’t tell you how excited I am to have him by my side for seven days. Just watching him sleep makes me happy. Anwar has always been extremely mature for his age. He’s an old soul who intuitively understands things on a whole different level. He doesn’t love school, but if a subject—academic or otherwise—sparks his interest, he is incredibly adept and smart about researching every fact and detail you might ever need to know about it. Anwar is the youngest in my camp of friends and family supporting me, yet he probably knows the most.
For years, he’s had chronic sinus infections, exhaustion, and joint pain so bad at times that he’d cry in the middle of the night. When I mentioned it to the pediatrician, he attributed Anwar’s joint issues to growing pains and said that Anwar was going to be very tall. So I would massage his knees, ankles, and hips with Traumeel, a cream that contains arnica, a homeopathic remedy for inflammation, but nothing really helped or relieved his pain. When I told the doctor that Anwar was always tired, sometimes too tired to play sports, he said it was a normal part of adolescence. For his chronic sinus issues, we saw one of the best ENT doctors in L.A. But the answer, after thorough exams and testing, was always a prescription for antibiotics and medications that would treat Anwar’s symptoms without finding the underlying cause. Some doctors would blame it on allergies even though the results of his tests came back all within normal range. What I didn’t know back then was that the normal range for one person isn’t necessarily the normal range for another. In the past, I blindly trusted and never doubted what the doctors said, especially if it sounded logical. But in the past couple of years that has proven me wrong. I am also learning that I really appreciate when a doctor walks the middle line, meaning he or she is educated in Western medicine yet acknowledges and is respectful of the power of the holistic world and vice versa.
Believe Me Page 9