April 28, 2015
I’ve learned more from my pain than I could have ever
learned from pleasure …
#SearchingForACure
#ChronicLymeDisease #GermanyDay2
On the tenth day of my treatment, I’m still afraid that I’m losing the battle. Instead of sharing this with my mom, I wait for her to go back to her room before I record my second video diary. I want my family to know that I want my body used for science. I don’t want to die in vain after all that I’ve gone through. If God isn’t going to grant me healing and a cure while I’m alive, I want to make sure that I help millions of people suffering from chronic neurological Lyme disease when I am dead.
Video Diary
May 2015
Today is day ten of my fourteen-day treatment and I feel really sick. I fight every day with all that I have, and with my children in my mind, but I don’t know how much longer my body can take this. I feel like there is a demon inside of me, one that is sucking the life out of me, my legs, my arms, and my brain. It’s taking everything that I have. Not sure how much longer I can hold on. It has been years. Every day, seven days a week, twenty-four hours a day, and it just doesn’t seem to come to an end. I have faith and know that I have to trust the process, which I’ve surrendered to. But some days I just don’t know if I’m going to wake up the next morning because I feel so sick. I keep on fighting but I’m just not sure my body can do this much longer. Nobody deserves to suffer like this, stuck in a maze of chronic disease.
So if I die, please make sure that my body gets used for research and an autopsy is done. Because I don’t know what can keep somebody sick for so long. I’m almost going on three years. How does one stay alive? Why can’t I figure this out? Who is going to help all the millions of people out there who are suffering just like me? I just don’t know.
May 7, 2015
Sweet dreams to my new stem cells, may they strengthen
my immune system to destroy the silent killer inside me
and turn this mess into a message …
#ExhaustedButDetermined
#SearchingForACure #ChronicLymeDisease #INeedAMiracle
Even though I don’t feel better, I’m hopeful and optimistic when my stem cells are injected into my body. I cover the injection site with a smiley face Band-Aid to set the right intention. There is no such thing as instant gratification, although I’m promised that I will feel something in the next three months.
On my way home, I stop in Paris for one night to see Ellie. Her ALS is advancing, and her health is deteriorating rapidly. She’s so happy to see me and I jump into bed with her; we laugh and reminisce about the great times we shared before we both got sick. Of course, looking at her makes me not even want to talk about what I am going through. ALS is by far the most brutal disease that I’ve witnessed in my entire life. The only common thread between us is that we both want to live to see our children grow up. Ellie’s body is completely paralyzed and lifeless, so she needs twenty-four-hour care to keep her head propped up so she can breathe through her breathing machine. She doesn’t sleep much while I’m there; in fact, she hasn’t slept much for years, so we talk most of the night about all kinds of very serious things. She tells me how she wants to end her life and makes me promise I will be there to hold her hand when that time comes. It’s fascinating to see someone completely debilitated physically yet with a mind that is perfect, witty, smart, and functioning at a hundred miles per hour. Thank God her husband, David, installed a voice-activated computer, because writing is the most valuable outlet for her. Because the Housewives documented our friendship and the beginning stage of her journey, she has a nice platform to launch her clever and outspoken blog, “Have Some Decorum,” which many Bravo fans love. What’s interesting is that while I have become quiet and introverted because of my lack of brain function, she has become enough of a soaring firecracker for both of us. She is often frustrated by the cards life has dealt us and angered by the judgment of my journey. On social media, she takes on anyone who says anything bad about me and gives them a piece of her mind. Her family situation is extremely difficult, and life with ALS is complicated beyond words. But our journeys are aligned so perfectly in terms of timing that I’m always available to be her 24-7 lifeline and personal shrink. I’ve talked her off the cliff many times when she feels trapped in her lifeless body.
“Thank you for listening,” she often says. “But tell me about you. Your struggles are important, too.”
“Who am I to complain?” I respond. “A couple of parasites and half a brain is nothing compared to what you’re living with.” I wish I could bring her to Dr. Klinghardt because he told me that there is a direct correlation between Lyme and the onset of ALS. Ellie is too far along to even try to attack Lyme. Our girlfriend Diandra Douglas was just diagnosed with Lyme as well. The three of us lived in Santa Barbara at the same time and two of us have Lyme and Ellie has ALS. What are the chances of that? Three friends?
I leave Paris with a very heavy heart. I hate leaving Ellie behind, so far away from the home in Santa Barbara we once knew. We say our good-byes in tears. I kiss her beautiful golden locks and promise I’ll be back soon. I feel helpless because I wish I could do more for this extraordinary human being. I love her so very much.
My plane ride home is sad. I can’t help feeling defeated and disenchanted with my European expedition and slightly embarrassed to admit to David and Daisy that I have not made much progress. I walk in the door with my tail between my legs. At this point, I’ve run out of ideas. I don’t think there is one more place to go or doctor to see. My whole life, I’ve been the leading lady in the Yolanda show with great confidence and direction, but now I have my doubts.
“I’m done,” I tell David. “Here’s the baton. You and Daisy are in charge, because I have no more ideas.” I can tell Daisy is really worried about me and feels uneasy about the fact that she doesn’t know what treatments I have done in Germany. Unlike any other doctor or clinic I’ve gone to, as far as I can determine Infusio didn’t keep any records of what they did.
“If you do exactly what I say, I’ll take the baton,” David says. I agree without a moment’s hesitation. The parasite pictures I e-mailed David from Germany really scared him and got his attention.
“We are not doing any more treatments until you get a full-body scan and see what’s in your intestines to make sure it isn’t cancer—or anything worse than Lyme,” he adds. If you have cancer hiding somewhere in the body, stem cell treatments are believed to make it grow faster. This is David’s fear. I don’t think that’s what’s wrong with me but I am not going to argue because I passed the baton.
May 16, 2015
Woke up not too cute with some aches and pains, but I WOKE UP.
#MyUniform #WaitingForACure #ChronicLymeDisease
The three of us sit around the kitchen table, and David writes a list of what he thinks should be my next steps:
1. Endoscopy camera capsule to see what’s going on in my intestines
2. Body scan
3. Check out stem cell treatment in Bahamas
4. Dental X-rays
The first appointment involves swallowing a camera, a procedure usually used to detect polyps, inflammatory bowel disease, ulcers, and tumors in the intestine. This will allow the doctor to examine my gastrointestinal tract because the camera capsule, which has its own light source, will travel through my intestines, snapping pictures along the way. Hopefully, this will provide us with some information about what has been living inside me. The morning of the appointment, I wake up with a severe migraine. I’m also sweating, with stomach cramps from the gallons of MoviPrep solution I’ve been drinking for the past forty-eight hours to clear out my system for the procedure. It feels as if there’s a blockage in my body, which is strange considering that I haven’t eaten for two days. My stomach is cramping and I have the urge to go to the bathroom as it feels like something big and hard is coming out of
me. When I look down in the toilet, I see a six-inch-long spiral-shaped parasite. I scoop it out of the toilet. It’s hard as a rock. In fact, it’s so calcified that I can literally hold it straight up in the air. What the hell is THIS? What planet did this alien come from? Because this strange, dead beauty is too big to fit in one of my sterile lab cups, I fill a big glass jar with alcohol and water to bring it with me to UCLA.
Daisy takes me to the camera-swallowing procedure, and as we walk through the hospital, I link my arm into hers just to maintain my balance. The nurse helps me swallow the camera. I’ve done hundreds of exterior photo shoots, but I am about to shoot one on the INSIDE of my body. I hand the jar with my calcified parasite alien to the nurse, who says it will be sent to a lab for analysis.
Shockingly, days later, I get the following e-mail from Dr. Eric Esrailian, co-chief of the division of digestive diseases at the David Geffen School of Medicine at UCLA.
Hi Yolanda.
The capsule views of the GI tract were completely unremarkable. I know that doesn’t make you feel better, but it’s actually good news. I just checked the parasite test and the results are still pending. If there is indeed a parasite, it will be diagnosed.
Unremarkable? After everything that has come out of me? I don’t need a TEST to determine whether I have parasites. I HAVE the actual parasites and photos too! It feels like such an injustice for a doctor to tell me it’s “unremarkable” and “good news.” Clearly they don’t have the diagnostic testing to analyze this. But that doesn’t mean that it’s not real and most likely the cause of many of my symptoms.
I just don’t know where to turn anymore. And quite frankly I have no hope left. I don’t even want to do any more treatments. Daisy and Paige are texting me from the LymeAid event in San Francisco, where I was supposed to get an award tonight. They’re trying to cheer me up, but I’m done and I’m going on strike.
Early Monday morning, Daisy and Paige come over to the apartment and are annoyingly optimistic and excited about all the Lyme doctors they met at the event and possible new treatments they heard about there. They’re trying to motivate me to go to Dr. Klinghardt.
“I just don’t care anymore,” I tell them.
“But we do; you’ve done such great work for the Lyme community and have come such a long way,” they say. “You’re not giving up now.” The next day, Daisy and I fly to Seattle to see Dr. Klinghardt. Thank God someone understands me and can validate my severe symptoms. He is giving me a lot of clarity and shines a bright light on the road ahead of me. I leave Seattle with a new protocol and a more positive perspective.
The next item on David’s list is a full-body scan, which I did at the beginning of my journey without any findings except inflammation in the left frontal lobe of my brain. After the scan, Dr. Jabour comes into the waiting room with a serious look of concern on his face.
“I need to send this to a specialist because I’m not quite sure what I’m seeing, but I’d like to do a breast MRI as well so we can look at this from different angles,” he says. “Let me show you what we found.” He pulls my scan up on a large monitor and points to black spots all over my chest area—especially under my left armpit, right clavicle bone, around my breasts, and inside my rib cage. These weren’t on the scan I did back in 2012. A strange sense of relief washes over me. Did we finally hit the jackpot? Did David just save my life? As unsettling as this might sound, maybe this explains why I’ve been coughing for four years and why I sweat from the slightest bit of exertion! Whatever it is, I feel empowered by this knowledge, and nothing can be worse than the nightmare I just went through.
After the case was reviewed by three of the country’s top specialists together they conclude that the black spots on my scans are free-floating silicone from my breast implants that broke ten years ago during a waterskiing fall. I had them replaced immediately but silicone from the rupture must have been left behind. Usually implants are encapsulated in the pocket of the breast, so any leakage should stay within that area. In my case, the silicone seeped out of the capsulation and traveled throughout my body. It could also be the result of the extreme heat detoxing I did in Europe to kill my Lyme bugs, with things like infrared saunas and hyperthermia. Whatever the cause of its escape, this free-floating silicone is creating a constant immune response in my body. I turn another corner in this dark maze. I see clarity and it motivates me to fight this with all that I have, even though my gas tank is empty.
David and I return to the apartment with a lot to think about. I get back into my white robe, which has become my safe cocoon. I can’t help feeling overwhelmed. I settle on the couch to digest all of this recent information and startling discovery. A million things are going through my head, but suddenly I remember something: about a year or two earlier, a visitor came to our house in Malibu with his girlfriend. I don’t remember who they were or why they came, but she was really kind and handed me a book called The Naked Truth about Breast Implants.
“This is something you really need to read,” she said. Little did she know that reading was one of the hardest things for me to do at the time because I couldn’t retain much information.
“Thank you so much,” I said politely. It’s fascinating how the universe provides information at certain times in our lives, but we’re just not ready to listen. This is a perfect example, because as soon as this woman left, I flipped through the book for a second before putting it under the coffee table. Now I immediately call Blanca at the house in Malibu to ask her to find the book and have Alberto bring it to me ASAP. Daisy and I go through it, highlighting all the important information. Simultaneously, she starts researching implant disease. What a rude awakening this is! It’s shocking to learn that throughout the 1980s and 1990s, class-action lawsuits claimed that Dow Corning’s silicone breast implants caused a range of serious health issues, leading to a multibillion-dollar class-action settlement. Why didn’t I know anything about this? Oddly enough, just eight months earlier, something drove me to randomly call my plastic surgeon who did my implants.
“Do you think my implants have anything to do with my inability to get well?” I asked.
“Absolutely not,” he said with such confidence that I trusted him. After all, he is a very well-educated man and one of the most successful plastic surgeons in Los Angeles and, most importantly, someone I consider a friend. Doesn’t he not know about the medical research and papers detailing the dangers of silicone implants? How could he not? So, if he did, why didn’t he share this information with me over the years? What makes doctors turn a blind eye to these undeniable facts? Business? Aren’t they supposed to have your best interest in mind? Who can you trust these days?
Implants are handed out like cupcakes in Beverly Hills. I’m not joking when I say that parents give them to their daughters as high school graduation gifts. Breast augmentation has been the top cosmetic surgical procedure performed in this country for years, with the number going up 202 percent from 1997 to 2015. In 2015, Americans spent an estimated $1.2 billion on more than three hundred thousand breast augmentations, according to the American Society for Aesthetic Plastic Surgery.
My mind is racing, as fast as my half brain can, thinking about every step of my life. Forget about me! What about my babies and the fact that I breast-fed them? Before Gigi was born, I asked my plastic surgeon and my pediatrician if it was safe to breast-feed with silicone implants. They both said yes. But twenty years later, plenty of studies confirm the danger of silicone toxicity and its effect on the immune system. I’m so frustrated and afraid of the unknown that I want to scream. How could I have been so stupid and uneducated that I allowed a man to make me think I even needed those stupid implants to begin with? My body was perfect exactly the way God intended it to be. Why in the world did I mess with it? I was a fucking moron to put this shit in my body. Although none of these findings change my late-stage Lyme diagnosis, it’s another profound aha moment at a time when I’m barely existing, not living life. The silico
ne leakage explains why three years of hard work has not paid off. Is this the core of my problem? Is this why I can’t get well? Is this why my body is toxic all the time without any realistic explanation?
June 1, 2015
Being positive in a negative situation isn’t naïve, it’s leadership on a mission.
#DeterminedToFindACure #AffordableForAll #ChronicLymeDiseaseAwareness
After the discovery of the free-floating silicone, I go back to read the reports of my previous mammograms. Because of my mother’s breast cancer in her midforties, I’ve always been very conscientious about getting annual mammograms. Usually, I wait for my doctor’s office to call me and say all is fine, but I never take the time to read the actual written reports. They clearly state that minor drops of silicone appeared on my mammograms, but they were tiny and encapsulated, meaning they supposedly couldn’t go anywhere, and their amount and location were the same every year.
I must say that I will be forever grateful to David for leading me to this discovery and making me do that scan, which I probably wouldn’t have done without his fear of cancer. I think he might have just saved my life, because the silicone findings could change my whole case. I feel weak and sick but I have a heart full of hope about the next chapter of my health journey. After all these years, it suddenly feels like we found the key to the next door that is about to open. I want the silicone out of my body NOW! Daisy researches this procedure, called “explant surgery.” I honestly don’t know how I’m going to get through it because I feel weak and sick.
Kelly Preston tells David about the Okyanos Cell Therapy in the Bahamas, where they specialize in an adipose stem cell procedure. I’m always very interested in things that are outside the box; however, I get infuriated when we receive an e-mail with the details of the procedure and its extremely high price tag from the head of the clinic.
Believe Me Page 22