Like many of you reading this web site, I have ITP. More precisely, I had ITP because at last count my platelets were holding at 300,000 without any conventional treatment intervention. I work. I dance. I ski. This is what we dream about, having enough platelets and energy to have a life. It is certainly what I dreamed about when I was bald from a dose of vincristine and too fatigued to walk up stairs or had a mouth full of blisters and legs I called ‘red dot specials’.
Wish by Spirit
It all started in the summer of 1992 when I returned from a long 4th of July weekend in Quebec City, Canada. It was cool and rainy there. I ate too many gravy coated french fries, drove home in damp clothes, and caught what I thought was the flu. It didn’t respond to my usual cure of lying on the sofa and watching four rented videos. In a few weeks I noticed some black and blue marks on my arm and panicked when I didn’t stop bleeding from a small cut. My days became a struggle to continue life as I once knew it and understand why my body was betraying me.
In time I overcame my denial and went to a family physician, and then to a hematologist. After a short stint in the hospital for tests, the diagnosis was confirmed. ITP. The hematologist wrote it down so I could remember what it stood for. My count was 6,000, a severe case, potentially fatal. I didn’t know what a platelet was.
The hematologist suggested prednisone, the drug of choice. I was wary of the side effects, but this seemed to be the best option. For three weeks I endured the brain fog, sleepless nights, and anxiety, hoping the drug would be a quick fix. It wasn’t. There was only a slight rise in my platelet count, then a fall. He then suggested IVIg.
As I was reducing the quantity of prednisone and had my first IVIg treatment my body began to reel. After a walk my blood pressure rose to an alarming level and I had chest pains. The next day I collapsed and had a seizure. Thank goodness the IVIg raised my platelet count to over 150,000 because after the resulting hospitalization I had a resting pulse of 120 and was on seizure medication. I took some heart medication to still my pulse and help with the heart palpitations and angina attacks. Now, instead of the relatively active person I was at the onset of the disease, it was a strain to do even simple chores. In the many hours of the day that I lay prone, I tried to counteract the stupor of the seizure meds by doing cross word puzzles and to think about my ITP and solve that puzzle too. I began to consider alternative treatments.
My platelet count slowly went down. The next round of IVIg was less successful in raising my counts. The round after that had almost no effect. I agreed to have my spleen removed, hoping again for a quick fix and to put an end to the endless round of doctor appointments, hospitalizations and the constant fear of bumping my head and dying. Before I left for the hospital I placed my will on my dresser.
My surgery was successful in that I survived, my spleen was removed and the wound eventually healed. However, it was not successful in raising my platelet count. Three weeks after the surgery I had as few platelets as before the operation. Now I was without a spleen, bruised, and still on the heart and seizure meds. It was now Christmas and my family and I wondered if it would be our last together.
My hematologist recommended Danocrine. No luck. Colchicine failed. We even tried another course of IVIg hoping that my body would respond to it differently now that I didn’t have a spleen. It responded differently alright. I was hospitalized following one of the treatments for a nosebleed that didn’t stop.
The list of available treatments was clearly shrinking. Those that remained promised even less hope and more corporal destruction than those that already failed and harmed me. The alternatives that once seemed too slow or too risky or too weird were looking much more attractive now. At my computer job I was used to solving tough technical problems. This was the toughest problem I ever faced and was trying to find a solution with impaired mobility and diminished mental capacity from the drugs. Luckily, I had lots of help.
It seemed to me that ITP was related to allergies. After all, prednisone, the drug of choice is given to people with asthma and the definition of ITP is the body attacking foreign substances, just like it does with pollen. Allergies are cumulative. If you are allergic to six things you can be exposed to five of them and have no reaction, however the addition of the sixth one could throw you into a sneezing fit. It made sense to reduce the amount of things in my life that cause an allergic reaction. I went to a naturapath recommended by a friend, to have my food allergies tested. The cats I knew about. Food allergies are much more subtle.
The doctor received no results from the first blood sample he sent to the food allergy test lab. My white blood cells were so sluggish they didn’t respond to the tests, a first for him. I took some vitamins to try to build up my blood, then had another test. This was more successful. It returned a list of twenty-one foods that my body thought were foreign. I stopped eating those foods. I also began to eat organic vegetables because my blood showed an overabundance of free radical damage. It was oxidized, like rusted or cooked. There would be no candy for me on Valentine’s Day.
The world, my life was looking bleak and hopeless. Some of the medications I was taking caused depression, according to the fine print. I felt victimized by my body and my doctors. To try to correct this I had been seeing a psychologist for a few months. She was helping me gain some control over those areas of my life where that was possible. She asked me if I had considered treating my disease with diet and lent me a book on macrobiotics. I read it immediately and was so impressed that I wanted to go out and buy fifty pounds of brown rice.
The macrobiotic diet just made sense to me. It recommended eliminating many of the same foods that were on my food allergy list. It eliminated stressful foods and autoimmune diseases are generally aggravated by stress. It eliminated foods that were fragmented and chemically preserved. My body needed to be whole, perhaps consuming whole foods would help. I thought I had been eating a healthy diet. I realized after reading the material that I hadn’t known what healthy was.
After my diet changes, my platelet count seemed more stable although it was still very low. I was feeling a bit better, too, more energy and fewer mysterious heart problems. I knew I was on the right track and finally found a sliver of hope. I thought that by Spring I would be better. I longed for the sunshine and warmth. But it was winter now, flu season. I got sick and my counts plummeted.
I went to an ITP specialist in New York and he berated my local hematologist for not putting me in the hospital. What I wanted was to just get a platelet transfusion and continue with the alternatives. My naturopath M.D. was not permitted to be on the hospital staff. With all the bruises, red dots, and mouth blisters I was feeling pretty sick and was not in a good bargaining position. I reluctantly agreed to a course of vincristine (chemotherapy) followed by a series of Prosorba A blood cleansing treatments. They sneaked in more of the dreaded prednisone.
During one of the Prosorba A column treatments a visiting nurse asked if she could just put her hand on my bruised and distended vein opposite my elbow. My arm felt warm and wonderful under her touch. During the next treatment she put her hands on my ankles and warmed them while my arms were splayed on the machine. She read my body from my ankles, accurately asking if I was feeling faint. I asked for her telephone number.
In the hospital, my counts went up a bit to 32k, then fell again My hair was falling out. My fingers tips were feeling numb. During one of the Prosorba A treatments I fainted and caused some panic in the treatment room when I was slow to regain consciousness. After that, I was so fatigued I couldn’t climb stairs. Lying in the hospital bed, I thought back to what was different when my platelets went up. I remembered the visiting nurse’s warming touch. I begged to get out of the hospital. Then I called the nurse.
She came to my home early Monday and gave me a treatment before I was scheduled to go to the doctor for another platelet count. This time the graph on the platelet counting machine actually showed some dots. The doctor was shocked. My count was up over 30k again. He postponed the argument over another shot of chemotherapy. I got religion.
The nurse came to my home every day for two weeks to give me a Reiki treatment, the official name for the hands-on healing therapy that I sampled in the hospital. We continued seeing each other a few times a week when I had sufficient energy to go to her house. In the sessions we did visualization exercises, talked about my childhood, and practiced breathing techniques. She taught me to listen to my body and honor what it had to say, an easy thing, but a wisdom I ignored for years.
Meanwhile, I was continuing on my macrobiotic diet and noticed that when I strayed, a few red dots would appear in my mouth as a reminder. This was sufficient confirmation for me to stay on the straight and narrow diet path. I visited a macrobiotic counselor to get some advice on how to further tune the diet for ITP and my body’s particular curiosities.
I returned to work at the end of March, part time, wearing a wig, on the day that my short-term disability insurance ended. My counts were still low, but I was thrilled to have parts of my life back. In a few weeks, I began full time work again.
Not satisfied with my count, I continued my investigation into things to add to the diet and Reiki treatment regimen. I read about ayurvedic medicine. For years, I’d practiced yoga postures and firmly believed that anything that lasts for centuries must be good. Ayurvedic medicine is in that category. I scheduled an appointment with an ayurvedic doctor.
The print out of his suggestions was nine pages long. Meditation, herbs, special music, sesame oil massage, cleansing treatments, on and on. He prioritized them. Meditation, herbs, and sesame oil massage were at the top of the list. So I took a meditation course, another way to reduce the toxic stress. I gradually began taking the herb pills and paste, (MA631 and Amrit Kalash) monitoring their effect on my count, and luxuriated in my body’s daily coating of warm sesame oil.
By summer with my daily regimens of whole foods, meditation, massage, herbs, and periodic Reiki treatments, my platelets climbed rapidly to close to 200,000. Despite the normal count, I still felt fragile, but I was thrilled. At first, my hematologist said that my ITP was a misdiagnosis, despite the numerous tests and the confirmation from three other hematologists. Then, he said it was a spontaneous remission. I sure didn’t seem spontaneous by my definition of the word.
In the subsequent years, I tried reducing the herbs. My platelets went down, then rose again when I reinstated the herbal regimen. Occasionally, I ate some things that were not on the straight and narrow diet plan. Again, my platelets dipped and I felt physically ill. Back on the diet for me.
In 1994, with a stressful work assignment, some exposure to pesticides, and the fumes from a home painting project, I noticed that I was bruising more easily. A blood test confirmed it. My ITP was back, although at a much more manageable level. This time, after some trial and error, I reinstated the hands-on healing treatments that I had eliminated from my regimen and my platelets returned to normal again.
My wellness quest continues, I keep learning and adding with an ever growing appreciation for the gifts I’ve been given. Now I say ‘thank you’ every day for the large and small miracles in my life. I treasure all those who have helped me be well again. My inner voice is more clear now, guiding and directing me on paths that were unknown before I had ITP. The birds are singing outside my window and my garden is green.
Inspired to tell others about ITP, Joan founded the Platelet Disorder Support Association and continues to support its mission.
Joan has written a book about her experiences, "Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease." You can read sample pages and purchase the book in The Platelet Store It is also available through Amazon and Barnes and Noble.
See www.joanyoungwrites.com for more information about the book, e-book vendors, and to order from the publisher..
Contact Joan at firstname.lastname@example.org.