That first episode came on me without warning. I spent three hours writhing on my bedroom floor while undergoing horrible stomach pains. I was in a delirious state with painful flashes of light stabbing through my head.
I eventually returned to partial awareness and discovered that I was lying in a noxious pool created by projectile vomiting and diarrhea. I have no idea how I was able to get to my feet and navigate my way down our spiral staircase to the kitchen, but I remember clinging to the kitchen counter. In my disoriented state I attempted to eat a banana but then ended up on the kitchen floor. I suddenly found myself floating above my body, which I could see clearly below me, seemingly lifeless and suspended in a pool of brown liquid.
I don’t know if the out-of-body event was a near-death experience, but at that moment, I realized that I was very ill and could easily pass away. However, I fought my way back to consciousness and suddenly found myself awake without pain and, in what seemed a baffling but pleasant miracle after my experience, I was incredibly clean. It was 4:30 in the morning. After making my way back up the stairs, my dear husband Richard awakened, came into the bedroom, saw the mess on the floor, asked me what had happened and said I had to go immediately to the hospital. I was feeling exhausted, asked for water, and went to bed.
For the next three years I endured a series of similar incidents. Fortunately, they were never as severe as that first one, but they were unpredictable and horrible interruptions to the natural flow of my life. The doctors were baffled and were never aware of how serious the malady was because the attacks were episodic and by the time they were able to examine me in the ER, I had recovered and my blood analysis always came back with all the numbers in their appropriate ranges. The doctors evidenced skepticism about my reports and were unable to understand how terrible the symptoms had been while I was going through the attack.
Another symptom of the malady was a sharp increase in weight. With no change in diet or lifestyle, I found myself suddenly outgrowing my clothes. In the absence of any diagnosis of disease, my doctor simply imagined that I was eating too much. She wouldn’t listen to my protestations of how I hadn’t changed my eating habits and recommended that I enroll in a 12-step program called Food Addicts Anonymous.
Since the doctor had no explanation of my condition, she adopted a dismissive attitude towards me. When I experienced a subsequent incident of ending up unconscious on the floor and the labs once again came back normal, she diagnosed the condition as a stomach ailment — probably due to what she imagined was my pathological overeating — and prescribed Pepcid. Medical people sometimes try to disguise their ignorance about a condition by giving it a name.
The doctor diagnosed my fainting as a case of syncope, which I discovered was simply the Latin term for fainting.
Even though the doctors were skeptical, I knew there was something seriously wrong with me. The severe episodes were unwelcome intrusions into my lifestyle because for 24 years I had dedicated myself to becoming a success in the business world and had risen to the status of vice-president of a bank. I was proud of myself for being able to thrive in a tough male-dominated environment and to shine a light to encourage others to push through any obstacles to success. But now I was facing a problem that resisted any amount of persistence and dedication.
My situation continued to deteriorate. It got uglier when I began to experience outbreaks of allergic type reactions. My palms would grow itchy. In one staff meeting I suddenly felt as though my chest had caught on fire. I excused myself with a growing sense of alarm. I made it to the bathroom and discovered that my body was covered by large, red, and inflamed hives. This was more than a simple allergy reaction because anaphylaxis had begun to spread across my body and was even affecting my eyeballs.
At that point I knew that I was going into anaphylactic shock with possible life-threatening consequences. I tried to strengthen myself by splashing water over my face then headed for a Walgreens that I knew was only a block away from the office. I bought a box of Benadryl, opened it up, and asked the alarmed druggist how many milligrams were in a hospital dose. He didn’t have an answer so I took 125 milligrams right in front of him. The staff gave me icepacks to help moderate my condition, and I somehow made it across the bridge to the Hayward ER. They gave me a shot with an EpiPen, which is the trade name for the Epinephrine Auto-Injector used for emergency treatment of anaphylaxis. The ER doctor prescribed EpiPens for me, and now I wouldn’t think of going anywhere without one in my purse.
Even though I wasn’t getting better, for a long time I was able to conceal the severity of my condition even from my husband. It helped that the attacks usually occurred at night. I discovered that great doses of Benadryl would keep me from losing consciousness. However, I couldn’t hide my condition forever. On August 2, 2013, the office staff had given me a nice birthday celebration. I suddenly began feeling funny, so I told some team members that I needed help. I got to the bathroom, began to have diarrhea, and started to collapse. I told a staff member to give me an injection with my EpiPen before calling 911. My condition was deteriorating quickly, but I remained in a surprisingly calm state; I was prepared for whatever happened. As it had in the hospital, the injection saved my life.
My condition continued to worsen and eventually reached the point at which, in spite of EpiPen and prednisone injections, my husband would hold my legs up during an episode while I was twitching and shaking uncontrollably with such pressure on my brain that my head felt like it was in a vise. August 1, 2014, I had to go to ER following an episode. They diagnosed my condition as stress. I had hundreds of labs during the next three months. They took bone marrow tests that would have revealed the condition, except they were misread. I continued to go downhill until September 18 when I quit work and went on disability.
On another occasion I had an episode in my home during the day that was so bad the EpiPen wasn’t working, the redness was spreading, and I had to call 911. Once again, however, the people in ER were dismissive of my condition. By the time they examined me, I once again appeared normal but only anxious. They didn’t see the mess I had left behind in my home. One of the ER doctors said, “Look. Whatever you have going on, you will not die from it.” That was an awful thing to say because I knew death was always near my shoulder. At one point I was having anaphylaxic shock 18 days out of 20. I never had another out-of-body experience like I did at the first incident of the disease, but many times in the middle of one of the attacks, I had to make a conscious choice to stay here.
An allergist and immunologist at Hayward Kaiser finally suspected the cause was more than allergies and wrote a note telling medical providers that when I had a recurrence to immediately run the blood work that would test for the enzyme tryptase, which if present in high quantities would reveal that my problem wasn’t something other than allergies. On Nov. 20, 2014, I had an attack in front of a psychologist and my new primary care doctor conducted the test. A week later the results came in. It was something other than allergies.
During that time I also had an appointment on the phone with Dr. Hope, who was the Chief of Allergy at Sunnyvale Kaiser. He admitted that I had a serious
problem. February 2015 he sent my bone marrow slides to Mariana Castells, a molecular biologist and head of the Mastocytosis Center at Brigham and Women’s Hospital. I got a call on April 30 from an oncologist who finally confirmed that I had a condition called systemic mastocytosis.
Fewer than 100,000 people get the disease, which is fortunate because there is no cure and it is terminal. I learned that survival rates range from fewer than 16 years for patients with the more benign forms to fewer than four years for people with the aggressive variety.
The diagnosis led to a full lifestyle change. Since my future had suddenly been given some boundaries, I began to focus on staying alive. A team of five medical specialists are looking out for me and working hard to limit the effects of the disease and to restrict its advancement. A home-care nurse tends to my needs. I’m able to live an independent life in my house because I’m one of the few who can manage the onset of anaphylaxis shock without always going to the ER.
My survival requires that I be quiet and devote body, mind, and spirit to moving towards wellness. I avoid strenuous exercise that exacerbates the disease, plus strong odors, crowds, and noise. I live an anti-inflammatory lifestyle. Clean nutrition plays a big role in my ongoing survival. Limiting exposure to toxic chemicals is important, so my diet is organic and free from preservatives with no alcohol or caffeine but a lot of green juicing.
I’ve learned to control my metabolism levels through special breathing, meditation, and prayer. I’m working on my attitude. I’ve been given divine discernment. There’s a cord that keeps me attached to a source. I can tap into it and get knowledge about doses and things that my body requires. I don’t consider myself to have a disease; I simply live with a disease — a little discomfort is the only thing I have to pay attention to. After all, the condition might not be terminal. There are a lot of ways of dying. I have become more connected with God and a spirit of thankfulness has filled my heart, replacing the fear and anxiety that had been there before. Rather than praying for God to help me, my prayers are focused on gratitude.
I use medication, prayer, breath, trusting, not having to know how, why, or what but feel I’m in a process of moving from healing to wholeness. I am writing a book on the topic of divine prayer and opening my heart, mind, and eyes to the miracles unfolding around me every day. There’s a purpose in everything. Each day I walk for a half hour in the nature area behind our house and recite a Kubera Mantra in three rounds of 36, which helps me to remain focused and to draw positive energies from the natural world around me.
I’m embracing my condition with strength and confidence. My outward life has been radically diminished, but the world of my spirit is growing beyond the confines of the reduced physical reality surrounding me. I never ask “Why Me?” because the rejoinder question is too obvious: “If anybody, then why not me?”
I’m sharing the confidence that Anita Moorjani described in her book Dying To Be Me. “We all have the inner power and wisdom to overcome even life’s most adverse situations.” Helen Keller, another woman who lived a reduced lifestyle, advised us to “Keep your face to the sunshine and you will not see the shadows.” That’s me. I’m facing the sunshine; I never glance at the darkness!