Perhaps talking about vulnerable things like this can connect us on a more spiritual level. In Beverly Hills, it’s rare to find people who show the true core of who they are as human beings, yet this is so important to me and has gotten even more so as I struggle with my health. I just can’t connect with the whole superficial thing and am not good at playing the game. Unfortunately, the mention of a DUI leads to the topic of alcoholism, and then Lisa Rinna and Kim Richards get into a fight. When Kim implies something negative about Lisa’s husband, all hell breaks loose. This certainly isn’t the warm and fuzzy moment I hoped for. Voices are raised and wineglasses are flying through the air. The whole situation is embarrassing and unsettling. It’s not a great start to the trip. How are we going to continue the week together after that explosion? We go back to the hotel, but, instead of sleeping and getting the rest I need so much, I’m up late talking to the different women involved and trying to play peacemaker. I feel responsible because we are in my country. I’m already exhausted from the long flight and not getting enough sleep is added stress and not great for my health.
The next day, I wake up with a migraine, a stiff neck, and severe joint pain, symptoms that have become common for me after long flights. But when I look out the hotel window and see Amsterdam’s charming canals, I get so excited to be home that I take three Excedrin Migraine pills, have a stiff Dutch cup of coffee, and try to push through. I’m not the only one feeling out of sorts. Several of the other women are shaken up from last night’s insanity, and there’s a clear divide among the group. Still, we all have obligations to our Housewives contract so quitting is not an option. Instead, we focus on a long day of filming in Papendrecht, the small town where I grew up. Here, I lead the girls on a bike ride to look at my childhood home, the windmills, and the beautiful natural surroundings. We end up at my mom’s apartment, which is nice and cozy but very small—so trying to squeeze the whole crew and all the women inside is comical. My mom is excited to have us and serves coffee with my favorite Dutch cream hazelnut cake. I happily get through that day on pure adrenaline and my excitement about being home.
But I pay for it the next morning when I wake up feeling like I was hit by a truck. I can’t move or get out of bed. The exhaustion is so debilitating and the pain is unbearable, not something a few Excedrins can alleviate. I just never know when it’s going to hit me like this but I am sure the emotional stress from the first night and running around for so many hours yesterday have me down for the count. Unfortunately, this is the name of the game with Lyme. I push it too hard and use more than one day’s worth of spoons, and this is the result. It’s sooooo frustrating. I’m sad and disappointed. All I want to do is run around Amsterdam with the other women and share our famous french fries and pancakes, but unfortunately I can’t pull it together and need to stay in bed. I call the producers to tell them that I can’t work today. They are clearly disappointed because it kind of screws up our story line but I think they know me well enough by now to know that if I could I would. In order to stay on story, we have to film me telling someone that I need to rest in bed today, so Kyle comes to my room to shoot that scene. After the crew and Kyle leave, I burst into tears and have a full meltdown with frustration. Before I got sick, it never occurred to me that my body could let me down like this. I used to drive it like a fast and furious Ferrari, my foot on the pedal, full speed at all times. I thought my energy was an endless resource. But now I’m depleted from this never-ending fight against Lyme and the rest is just a faint memory.
I stay in bed all day while the women visit the Anne Frank and beautiful Van Gogh museums, shop, and have lunch—all the things that I wanted to do, too. That night, we film our second dinner scene downstairs on the terrace of our hotel with my brother, Leo, and his wife, Liseth. Even though I don’t feel well, I pull up the bootstraps and show up to work, excited to see my family and for them to spend time with the cast. We end the night by taking everyone for a stroll to the red-light district, one of the oldest areas of Amsterdam, which serviced the sailors in the early 1800s. It makes me so happy to walk the streets in the dark listening to people speak my language, and being with my brother always puts a smile on my face.
When I return home from Holland, I decide to stop Richard Helfrich’s protocol with the 150 pills a day.
“You’re the biggest warrior that I’ve met in thirty years,” Richard says. “You’ve been so diligent.”
“But after swallowing thousands of pills, this warrior can’t swallow one more,” I tell him. His protocol strengthened my overall health more than anything else I’ve tried so far. Blood tests show that my liver function has improved and my hormones are perfectly balanced. But my thyroid is still off and my white blood cell count, although a tiny bit better, is still very low. So is my CD57, which is a natural killer cell that’s attracted to Lyme bacteria. A low CD57 means that the Lyme is more chronic and mine is 23. Plus, my Lyme tests are still positive, so even though this protocol helped, it isn’t a cure. My blood tests aren’t supporting the fact that I’m killing spirochetes or making progress toward ridding my body of this disease. I’ve given it my all religiously for almost a year, but in my opinion the needle is not moving like it should be.
Anwar is also not feeling well. His symptoms flare up on a regular basis, so I take him to Dr. Allen Green, a new holistic doctor in Santa Monica. It’s fascinating how many doctors I’ve taken him to with no results, but a mother never gives up.
“I have been very successful in treating chronic Lyme with low-dose immunotherapy (LDI),” Dr. Green says. “There are minimal side effects.” LDI works by desensitizing the immune system to the bacteria we are treating and helps the immune system become more balanced by reducing inflammation caused by foreign invaders or allergens. As a result, this helps fight pathogens more effectively. It’s given by an injection under the upper layer of the skin every four to six weeks. Anwar wants to give this a try and also starts going to Dr. Green’s office twice a week after school for IV drips. Unfortunately, the first LDI injection knocks him off his feet with a 102-degree fever. He is also crying from severe joint pain and uses three boxes of tissues trying to clear his sinuses, which have been bothering him for the past two years despite doctors and test results saying he’s fine. But even though this is a tough time for him, he pushes through, and we start to see some improvements in his health.
By November, my symptoms are worse, and managing the big house in Malibu, which is on the market but yet to sell, is too much for me. I no longer see its beauty; all I see is pressure. I can’t run it anymore, it’s running me. Having full-time staff in the house can be very stressful because everyone needs direction and my brain can’t handle it. I just need to be quiet and left alone until I can figure out the next step in my health journey. Because I feel best in small spaces, I decide that David, Anwar, and I should move to David’s condo in Beverly Hills. It seems like a perfect solution for this moment in time.
“Let’s live in the condo during the week when I have my treatments and come back to Malibu on the weekends,” I tell David.
“If you leave this house, you’re not coming back,” he says in an angry voice. Of course he doesn’t want to leave his home, but I’m also in survival mode and this is the only choice I have. David moves to the condo with me, although he makes it very clear that it’s against his will. He is not able to express himself and I am stuck in my head so our communication is at a standstill. Does he really think I like this change? Why can’t he just understand that this is what I need at this point in my healing journey?
Chapter Ten
THERE IS NO FORCE MORE POWERFUL THAN A WOMAN DETERMINED TO RISE.
I’ve made many friends throughout my journey in the Lyme world, members of a club that none of us wants to be part of. One of these friends is my fellow Lyme warrior Ally Hilfiger. She’s had Lyme since she was a child and has suffered on a unique journey. When I met her, she was close to remission and feeling better than she had i
n a long time but still raw. She is on the board of the Global Lyme Alliance and is very active in the search for a cure. One day, we’re talking over a cup of tea.
“If I ever have to do another treatment, I will go and see this stem cell specialist in Korea,” she says. Ally’s a smart cookie so I respect her judgment, especially knowing she has tried so many protocols herself. I’m desperate for a new plan of attack. I’ve been sick for three years now, and my symptoms seem to be getting worse. But most important, I have two sick children. My determination to heal them motivates me. I’m on a mission to find smart doctors anywhere in the world who can possibly help solve this problem. They have to be out there. Maybe this specialist is one of these doctors. Ally gives me his contact information, and he and I start to communicate by e-mail.
November 15, 2014
Mission Lyme disease back in action.
#ExhaustedButDetermined #IChooseToBeUnstoppable #MustFindACure
His philosophy is not to fight the Lyme, cancer, or whatever illness you have; it’s to fix your immune system so the body can fight these conditions on its own. He has found that sick cells in people who are chronically ill keep producing and copying sick cells, and once you’re in this chronic state, you can’t get out of it. He takes your own blood stem cells and then, in the lab, separates out the healthy-looking cells and treats them to grow and multiply. Once reintroduced into the body by IV, these new and healthy soldiers should make new and healthy cells. It’s definitely an out-of-the box treatment for Lyme, but my gut tells me that it makes total sense. My brain might not be as intelligent as it used to be, but a lot of my decisions are made using my intuition and the research Tom does for me. Intuitively, rebuilding my immune system feels right, especially since my blood tests show extremely low natural killer cells, which are crucial because they are the ones that destroy infected cells.
I call some references and when I talk to several patients with cancer and other chronic immune disorders, who have seen this stem cell specialist, they praise his treatment. Some even claim that he saved their lives. The only critique is that he’s not easy to deal with, but working with a difficult personality seems like a small price to pay to feel better. I actually love the Asian culture and very much respect their work ethic. The bigger price is the actual cost of the trip, which is very expensive when I add up the airfare, hotel, and the treatment. I hesitate. But what good is money in the bank if I’m too sick to enjoy it? Or, even worse, if I’m dead? God’s given me this journey for a reason. Why sit in America at a dead end? Once again, I pray that it will be the answer. Although David isn’t too keen on my going to Korea, he knows there’s no stopping me at this point. Of course, when I tell Paige about the treatment, she decides to come with me, not just to be my wingman, but because she still has lingering Lyme symptoms herself. Korea is a long way away, and I’m so grateful to have my best friend with me.
It’s a freezing-cold day when we land in Seoul. After spending a night at a hotel, Paige and I go to the clinic. At my first appointment, the doctor does an array of genetic testing with fancy computers. Then he draws my blood, which he’ll use to grow my stem cells in the lab for six weeks. At that point, I’ll have to return to Korea to have them injected back into my body. From many generations of doctors and educated in America, he seems highly intelligent. For the next seven days, I report to the clinic every morning at nine for treatments, including vitamin drips and immune modulators. The treatments are exhausting, so I don’t have the energy to do much else except go to the Korean Spa at night for body scrubs and to use the infrared sauna. No wonder Asian woman have the most beautiful skin in the world, they care for it with so much dedication.
November 19, 2014
I guess you fight through the bad days to earn the best days of your life.
#LymeDiseaseAftermath #RebuildingTheBrain
#StemCellTherapy #MedicineOfTheFuture
Although most of the other patients don’t speak much English, we still form bonds with one another because, whether they have cancer, Lyme, or any other chronic condition, we’re in this maze together, trying to figure out our disease and find a way out of our suffering.
There is one sweet Korean woman who is about seventy years old in the treatment room next to mine. It’s clear that she’s losing her battle with cancer, and it’s heartbreaking to hear her young family deal with the sadness of this reality. There are also a few English-speaking children at the clinic, and when I talk to their parents, I wonder if this stem cell treatment could be good for Bella and Anwar, too. It seems pretty noninvasive, so if it works, it’s worth bringing them all the way here.
The truth is, worrying about Anwar and Bella keeps me up at night, and I feel completely alone when it comes to their health. Mohamed doesn’t understand what they’re going through. How can he? He isn’t there when the children are crying in the middle of the night from pain or spend hours on the couch when they’d rather run around with their friends like normal teenagers. I guess it’s hard for him to accept or understand how three people in his family could be sick with the same disease. So the weight is only on my shoulders, my sick shoulders. I figure out how to have the kids’ blood taken in the United States over the next few days and FedEx it to the clinic here. This way, Bella and Anwar won’t have to come to Korea twice. Instead, they can return with me in January when our stem cells are ready.
I don’t feel any significant improvement but am hopeful that I will when I return and get the stem cells reinjected. In my Bravo blog, I explain that I’m writing from Seoul and that “I have learned to adjust to my new normal, the rebel inside me is just not able to accept this silent disability. Lyme disease has become a fast-growing epidemic worldwide. I’m determined to help find a cure and figure out a way to share knowledge with the millions of people struggling with this debilitating disease.”
November 22, 2014
I am driven and motivated to think outside the box and
recognize the diverse points of views in global medicine not only
to cure myself but to pave the way for all my fellow Lymies battling
this poorly acknowledged debilitating disease.
#ChronicNeurologicalLyme
#StemCellTherapy #MyHealthJourney
While I wait for my healthy cells to grow in Korea, life goes on in L.A. The first weekend in December is the premiere of Selma, the Martin Luther King Jr. movie that Oprah produced and appears in. Although I’m sure that it’s going to be amazing, I’m not feeling well and in no shape to attend a red carpet event but David feels differently.
“It’ll be a nice weekend for you in your favorite place, in a beautiful hotel,” David says. He’s referring to the fact that the event is in Santa Barbara. What he doesn’t understand is that when you’re sick, all of that doesn’t matter anymore. In this moment, I don’t care about my favorite place, my favorite hotel, or my favorite woman, Oprah. I just want to get well. Nevertheless, David talks me into going and we drive the ninety-five miles from L.A. to Santa Barbara and check into the Bacara Resort and Spa. The first day, the movie screening is at the beautiful Arlington Theatre, where my children used to perform their school plays. I have many fond memories of our happy, healthy lives here. When the movie starts, all the lights turn off but the screen is so bright that I have to shield my eyes for a minute and the sound is loud and overwhelming. I try to buffer it with the earplugs David brought, but every sound is like nails on a chalkboard to me. I can’t sit here for one more minute.
“I have to leave, but you stay. Okay?” I whisper to David. “This is too much for me to handle.”
“How can I stay? I drove you here,” he says sharply. I’m not happy about leaving either. It’s rude and embarrassing to get up in a theater so quiet that you can hear a pin drop, one full of people who are riveted by what they are watching. Selma is a profound movie, and the little bit I saw was incredible, but my brain can’t take it. We walk to the car in silence, and the second I get in, I start b
awling. I can’t even sit through a movie. Something that requires nothing of me! Back in the room, I climb into bed frustrated and upset. Tonight is a big dinner at the hotel to celebrate and honor the movie. Maybe if I just lie here for a few hours, I’ll be okay. When it’s time to get ready, I pull myself together and go with David to the dinner which is in the ballroom just down the hall from our room. It’s less daunting than getting in a car. I can always come back to the room if I don’t feel well.
We do the red carpet and make our way to our table with some familiar faces like Magic Johnson. When we sit down, David starts talking to Magic about the immune system.
“What’s your best advice for someone battling chronic disease?” David asks, referring to the HIV that Magic has lived with for more than twenty years.
“Keep on walking,” Magic responds. “No matter what, you have to keep walking.”
“See? I told you so,” David says, turning to me, implying that if someone living with HIV can keep walking, I can, too. That’s easy advice to give when you’re feeling well or your illness is controlled by medication, but I literally can’t walk. Of all people, David knows that I’ve always been hard-core about exercising so it’s hard to understand how he could doubt my perseverance. This is hard for me to watch happen because even though a lot has changed, my character and core values are still the same. The old me didn’t think anything less than four or five miles was even a workout! I’ve been an athlete my whole life. I’m used to pushing my body to the limit so it’s hard for me to accept that I don’t have a motor anymore. There is nothing to push. It’s not mind over matter. I physically can’t do it. Unfortunately, when you don’t look ill and you are battling a disease most people don’t know anything about, it’s hard to comprehend how paralyzing and debilitating this truly is. I’m annoyed and irritated, both at his insensitive comment and at myself for not feeling well. Fuck this. I’m having a glass of wine. Maybe it will cheer me up. I can’t even remember the last time I had a sip of alcohol, but I don’t care. Oprah starts to make a beautiful speech about the movie, acknowledging iconic civil rights heroes, but only a couple of minutes into it, the whole room starts spinning. I feel dizzy and faint. I’m going to throw up. I have to go.
Believe Me Page 17