It’s New Year’s Eve, and David and I are invited to Andrea and Veronica Bocelli’s house for dinner. I can barely stand up, but David insists that I get dressed and he picks me up from the hotel at eight P.M.
“Even if it’s just for a little while,” he says. “You’ve got to get out of the room.” I agree. It’s New Year’s Eve after all, but I feel unstable and my hands are trembling intensely. A strong force of something is controlling me but it’s not me. I push myself to get up and go. Of course the other guests are dressed up beautifully, but a T-shirt, shorts, and no makeup is all I could pull together; my looks are honestly the last thing on my mind these days. I’m happy to see my dear friends and their kids, but I’m anxious and have a hard time communicating.
“I love you so much, but I have to go,” I tell Veronica around nine thirty. I want David to stay because it’s New Year’s Eve, so their driver takes me back to the hotel. I crawl into bed and bawl my eyes out. I’m not living. I am just existing in a body that no longer belongs to me.
My Diary
December 31, 2014
I’ve lost my life. Worst New Year’s Eve ever.
Chapter Eleven
I FOUGHT TO LIVE, I LOVED, I LOST, I MISSED, I HURT, I TRUSTED, I MADE MISTAKES, BUT MOST OF ALL, I LEARNED … AND WITH THAT KNOWLEDGE I CHOOSE TO MOVE FORWARD, ONE DAY AT A TIME.
On January 2, I fly from Miami to meet Bella and Anwar in Korea. Our stem cells, which have been growing for weeks, are ready. Mohamed is not on board with this decision. Does he think I’m schlepping all the way to freezing Korea for fun? Thousands of miles from home? Thousands of dollars out of my pocket? I’d fly to the end of the earth to find a cure for Bella and Anwar and nothing and nobody is going to stop me. My children know that I’m educated about every move I make and that I would never, ever do anything to harm them, but their father’s support would be a great source of strength for them right now.
Truthfully, it’s taking every last drop that I have to go to Korea. My latest protocol is taking me down, and I’m struggling. If my children were not meeting me there and I hadn’t spent so much money on this promising treatment, I would cancel this trip. But this isn’t about me. It’s about my kids and my commitment to their health, and with Anwar’s limited school holiday schedule, there is no other time we can go. David flies with me to Seoul because I’m not feeling well enough to go on the seventeen-hour flight alone. After one night, he continues on to Singapore, where he’s shooting Asia’s Got Talent.
On our first morning in Korea, Bella, Anwar, and I go to the clinic to meet the stem cell doctor. We get IV drips of vitamins and minerals. These are said to help our stem cells absorb better when they’re injected back into the body. At the end of each day, we return to our connecting hotel rooms, practically crawling into bed feeling miserable, not only from jet lag and treatments but also some crazy flu that just hit us like a ton of bricks. To make matters worse, Seoul in the winter is cold and dark, and so are my children’s moods. They’re tired, sad, and angry, at times wondering why they have to spend their school break in a clinic in Korea. They are not connecting with the doctor so I’m having a difficult time motivating them. I try to shift their perspective to one of gratefulness and remind them—and myself—how blessed we are to have this chance to get well. I’m trying to keep it together in front of my kids and decide to take a break from my current protocol for a couple of days.
On our fourth night, we go back to the hotel, too tired to do anything. I’m walking to the bathroom to pee, when I collapse. I wake to Anwar trying to lift me off the floor and hear Bella talking on the phone. She’s trying to get someone from the clinic to come here. My heart is beating out of my chest and I’m shivering.
“Can you turn on a hot bath?” I ask Anwar. He nods, then goes into the bathroom. Once it’s ready, I climb into the tub still wearing my pajamas. The hot water running over my ice-cold body feels so good. Twenty minutes later, there’s a knock on our door and it’s the nurse from the clinic. She doesn’t speak much English, but kindness is universal and her warmth and smile calm me a bit. She takes my temperature and blood pressure. Somehow I understand it when she says that my blood pressure is low and I’m severely dehydrated. While the kids get me tea and cookies from the hotel, the nurse hooks me up to an IV. She sits patiently by my bed until the middle of the night, when my vital signs return to normal. It’s a pretty low moment for the three of us, who are horribly sick in a strange country where we don’t know anyone. Still, we manage to endure all our treatments until the end of our eight-day stay.
January 5, 2015
Another day at the office, tired but determined to turn
this mess into a message for all my fellow Lymies whose voices can’t be heard.
#ChronicNeurologicalLyme #WeMustFindACure
#ProperDiagnostics #AffordableForAll
From Korea, David wants me to meet him in Singapore. I’m torn. Of course, I want to see my husband, but I’m in no shape to go anywhere besides my own bed. I drop off Anwar and Bella for their L.A. flight and walk through the airport like a ghost. Why didn’t I go home with them? That’s the intelligent thing to do. Then I walk to my own gate and board a plane to Singapore.
Each morning, I manage to get up with David and go with him to the set of the show, about forty-five minutes from our hotel in Malaysia. I help him get dressed and ready, and then, once he starts filming, his manager and my dear friend Marc Johnston, who is like a brother to me, accompanies me back to the hotel.
“I think I’m dying,” I tell Marc one morning on our drive. “I don’t think I’m going to win this.”
“But you have to. Your children need you. We need you,” he says in his sweet English accent. Back at the hotel, I get into bed. I could sleep for weeks. My body is tired, SO tired, after twelve hundred days fighting what feels like a losing battle.
David sets up appointments at the best hospital in Singapore. Our hope is that their testing is different from what I’ve had everywhere else. Maybe we’ll get a fresh perspective from minds in a different part of the world. The doctors are amazing, but the test results are the same: Lyme, co-infections, autoimmune disease, and thyroid disease. Together we return to L.A., where I get back into my fuzzy white robe, feeling totally and completely discouraged, about not only myself but also my children. My great effort managing their cases feels like a failure, and I don’t have many more options for treating them. Long-term antibiotics didn’t work for me, so why pollute Bella’s and Anwar’s young bodies, especially their guts, with these medications? Why subject my children, who are already weak from the disease, to anything without hard-core proof?
Like so many of the treatments I’ve tried, the stem cells give the kids and me a lift in overall energy. But they’re not a cure for Lyme and it unfortunately doesn’t fix our immune systems like the doctor suggested. I consider the trips to Korea a big waste of time and money. I always hoped that if I could do fifty things together it would make me 100 percent better. I know I should view each one of these experiences as a building block, but I’m getting really disenchanted. I’m worse than I’ve been in all the years that I’ve been sick. Once I get home, I resume my protocol, but again the die-off reaction is unbearable. It’s interesting how much better I feel when I take a couple of days off from the antibiotics and antiparasitics, something doctors refer to as “pulsing.” But I need to finish this course if I want results. At the same time, I’m doing all sorts of holistic things—the hyperbaric chamber, ozone treatments, colonics, coffee enemas, Epsom salt baths, and lymphatic drainage massages. Why does it seem like nothing is helping? I’ve probably done eighty hyperbaric chamber sessions, but they make my symptoms worse. Everything is off, including my appetite. I’ve barely eaten in months, mainly nibbling on green olives and radishes—that’s all I’m craving. And I still long for silence in my brain, which feels shaky. Some nights I need to take two Xanax just to sleep and calm my nervous system.
My Diary
I feel like I’ve been in this abyss for the past two months and I can’t get out. When is it going to end?
I often sit on the floor of our tiny balcony smoking my raw tobacco. I love watching the young children running around the playground next door. Their seemingly endless energy is a joy to watch. There’s also a church here and on weekends I sit in my white robe on the balcony and watch people dressed up in their Sunday best. I’m envious but it makes me happy to see others live the life that I can’t be part of.
One morning, I wake up with my head pounding intensely and the bones in my lower body on fire. I’m going to throw up. I move as quickly as I can to the bathroom, which isn’t quickly at all. After barely making it to the toilet, I lie down on the cold bathroom floor. I feel like I want to die. I can’t possibly get through another day. God, please take me. Please! I pull my cell phone from my robe pocket and call Paige in Santa Barbara. When I hear her voice, I just start bawling.
“I feel like I’m dying and I can’t live like this for one more day. Please come here and don’t leave my side. I can’t take care of myself anymore.”
“I’ll be there in an hour and a half,” she says.
“Honestly, I feel like there’s a demon inside me, some monster that has taken over my gut,” I tell her.
Paige arrives like a whirlwind of fresh air. It’s only been six weeks since I last saw her, but I can tell she’s startled by my appearance. My skin has a yellowish cast to it, I have black circles under my eyes, and the muscles on my calves have atrophied so much that my legs are bony sticks poking out from my robe.
Because David is traveling, Paige sleeps next to me, watching my every move and doing anything she can to bring me comfort. She goes to the market, makes chicken soup from scratch, puts fresh flowers around the apartment, and picks up my prescriptions from the pharmacy. She clears off the kitchen counter, organizes all my medications, and keeps a log for Dr. Horowitz detailing my nausea, blurred vision, dizziness, vomiting, extreme exhaustion, and other severe side effects. After a nurse teaches her, she gives me the daily Bicillin shots to treat my bacterial infections. When I want to know more about my medications or symptoms, Paige does the research. She even deals with the annoyance of calling my insurance company because she is enraged by the amount of money I’ve spent on medical care for Bella, Anwar, and myself. With three children of her own and a job, I know it’s not easy for Paige to take off all this time to be with me but she’s a trouper, and I need every ounce of her strength.
In the midst of this horrible relapse, the Housewives producers call me. I need to reshoot an interview for the show giving my opinion about what happened when the women and I went to Holland. David and I already moved out of our Malibu home, but we have to shoot there so it’s consistent with the other interviews I’ve done for the show. I skip my morning medication because it will knock me out and cause a Herxheimer reaction that I cannot handle right now, and then Paige drives me to Malibu. She grabs an orange dress from my closet, thinking the bright color will give me a lift and makeup and hair will be there as well. I need all the help I can get to look somewhat healthy.
“I can tell you don’t feel good,” says Dusty, my makeup artist. “’Cause even that orange color doesn’t brighten your face.” Having to recall what happened on the Housewives Holland trip is hard, but forming an opinion and articulating it seems like an insurmountable task.
“Yo, you can get through this. Think of how strong you’ve been,” Paige says on the drive back to Beverly Hills. “You’ve fought so hard. You’ve come so far.”
“I just don’t know anymore, Paige.”
“You’re also the nicest sick person I’ve ever met,” she adds, trying to make me laugh.
“I know you have to leave soon,” I tell her. “But before you do, please find me a caregiver. I need a brain, someone who understands the Lyme journey and can help me get better.”
“I’m on it,” Paige says.
I need someone to take control of my life and my health care, because I can’t put it together anymore or fight for myself. All these medications are confusing. When do I take them? How much do I take? I also don’t think David wants to be a caretaker anymore. He says he isn’t going anywhere and that we’re in this together until the end. But lately he’s been less and less involved and sadly our lives seem very far apart. I admit that I’m not the person he married three years ago. He wants his lively, sexy, funny, and intelligent partner back, and I understand that. Yet I’m trapped in the cocoon of my paralyzed brain and am barely able to live in my own skin, let alone go out to fancy parties and live someone else’s life. My world is small because small is all I can handle. I miss being me. I don’t even remember what it’s like to be normal or function in this world.
At one in the morning, I wake up with severe night sweats. I go out on the balcony in my underwear and lie down because the cool stone against my skin is the only relief I can find, and I gaze at the stars, with a deep desire to connect with the universe because it feels as if my connection to everything else in my life is gone.
“God, I need a surrogate brain, someone to think for me and lead me through this. God, please help me,” I say out loud. “Please, I beg you.”
Paige starts talking to various friends and people in the Lyme network about finding some help. The issue is that I need more than just a typical nurse. I need someone who understands chronic Lyme, which isn’t easy to find since some of the best doctors in this town don’t understand it. I also need someone who can make sense of my complicated protocols and can look at my case intelligently and help take me to the next step because I am stuck. After a few days, Paige narrows the list of potential candidates down to three women and plans to interview them downstairs in the lobby of our apartment building. But after the first meeting, she comes upstairs.
“I was waiting on the couch when in walks this sweet blond woman in a bright dress. I literally felt like Mary Poppins arrived,” Paige tells David and me, her voice full of excitement. “I want to see what you think. Can I bring her up?”
“Yes,” David says. Minutes later, Paige walks in with a woman whose beautiful spirit and kindness fills the room immediately.
“This is Daisy White,” Paige says. Daisy walks over to the couch and hugs me. Instantly, I feel a connection.
“I have Lyme myself, but it’s in remission,” Daisy explains. “Since then, I’ve made it my mission to help others get well as a health advocate.”
“What’s a health advocate?” David asks.
“I help execute your protocols and figure out which tests to do and how to interpret their results. I keep track of where we’ve made progress and where we haven’t, help prioritize your treatments, and figure out the next step in your journey,” Daisy explains. That’s exactly what I need. Taking care of myself has been a full-time job. I can’t do it anymore.
I look at Paige and nod.
“I’ve learned to use various tools, like computers, scanning devices, and different types of muscle testing. My goal is to make sure you’re headed in the right direction. For Lyme patients it’s so easy to lose our way because we can’t tell the difference between a Herx that’s helping or one that’s setting us back,” Daisy adds. “I’ll help you find your way.” My gut says she’s the one and David agrees to hire her for six months to get me over the hump.
“Great,” David says.
“So you would need me on Mondays, Wednesdays, and Fridays?” Daisy asks.
“No. I need you every day.”
“Okay,” she says.
“My biggest worry is my children, I need help getting them well,” I say. This strikes a deep chord and the floodgates of tears open. Daisy tears up as well.
“I will,” she says. “I can.”
“I need help making sense of all of this.” I point toward the stack of binders on the coffee table.
“Can I take those home with me?”
February 10, 2015
It’
s during the worst times of your life that you
get to see the true colors of the people who say they care
about you. Thank you @1437paige for showing me the
true meaning of a twenty-year friendship.
#IamBlessed #BestFriendsForever
Over the next few weeks, I feel better knowing that Daisy can help me steer the ship. She recommends that I see Dr. Dietrich Klinghardt, who is internationally known for his successful treatment of chronic illness and one of the most well-respected, Lyme-literate doctors in the world, one who has survived Lyme himself. He practices for most of the year in Europe but works out of his Seattle office for a couple of months a year. We schedule an appointment for March 10th.
In the meantime, Daisy introduces me to the ZYTO machine. We use it every two weeks to understand my progress. I’m a bit skeptical at first, but, as I stick with it, the things that come up are so dead-on that they seem undeniable, and it definitely gets my attention.
February 12, 2015
I am going to find my way out of this maze and find a cure for not only myself but also for all my fellow Lymies.
#NoteToSelf
Minutes turn into hours, hours turn into days, days turn into weeks, weeks turn into months, and my months have turned into three years.
#Misdiagnosis #ChronicNeurologicalLyme #MoreDeterminedThanEver #MyHealthJourney #LymeDiseaseAwareness
Much love and a big hug to all of you fighting your own battles with chronic illness.
On Friday, February 13, I wake up at three thirty in the morning and can’t fall back to sleep. I go into the living room to lie on the couch, where I realize that I’m strangely awake and alert like some heavy fog has lifted from my brain, a clarity I haven’t experienced in years. Even the tremors in my hands feel less severe than usual. It’s such an obvious shift that it almost feels eerie. Is God working his magic? Have my prayers finally been heard? I’m not sure what is going on but I’m up and still have a few hours before I need to wake Anwar for school, so I decide to prepare and boil coffee for my enema. Today I’ll do it before my colonic instead of after.
Believe Me Page 19