Success Story
By Joan
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’.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.
像大部分正在浏览此网站的众多网友一样，我也患有ITP。更确切的说，我曾患有ITP，因为最后我的血小板计数在没有经过任何常规治疗的干预下能维持在300左右。我工作，我跳舞，我滑雪，这些都曾经是我们梦寐以求的，只能有足够的血小板跟精力才能享受的生活。当然这也是我曾梦想的，当我由于注射了长春新碱而脱发并且爬几层楼就觉得很疲乏，满口是血泡，腿上尽是红点时。这一切都开始于1992年的夏天，当我在一个漫长的7月4号的周末从加拿大的魁北克返回家时。在那里正是比较冷和多雨的季节。我吃了很多涂满肉酱的薯条，并穿着潮湿的衣服开车回家，并且我觉得我感冒了。我并没有很在意，躺在沙发上看了四部租来的碟片。几个星期后，我发现我的胳膊上出现了许多青一块紫一块的斑。我也感到非常的恐慌，当我因为受了一点儿小的外伤而流血不止时。我的正常生活已无法继续，当我知道了它，并明白为什么我的身体状况正在变得如此糟糕。最后我还是说服自己去看了我的家庭医生然后找了一位血液科专家。在医院里经过一个短暂的检查，最后确诊为ITP。那位血液科专家把它写了下来，因此我能记得那些都代表了什么。我的计数是6000，一个非常糟糕的情况，有潜在的致命风险。但我那时还不知道血小板是什么？！
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.
在药物选择上，血液科专家建议用强的松。我有点儿担心副作用，但似乎没有更好的选择。那三个星期，我忍受着迷惑，失眠，焦虑，并希望药物能够很快的把它治愈。但事实并非如此。我的血小板只有轻微的升高，然后又跌了下来。他然后建议我用丙球蛋白。
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.
当我开始强的松的减量，并使用了第一针丙球蛋白时，我的身体开始出现反应。当我走路时我的血压会升的很高并且还会胸口疼。第二天我崩溃了并发作了。谢天谢地，丙球蛋白又让我的血小板升到了150，因为住院治疗的缘故，我的脉搏升到了120并且不得不服用防止癫痫的药物。我还服用了一些心脏病的药物来静止我的脉搏并且预防心脏病和心绞痛。现在，我已经不再是个活跃的人了，当我疾病发作时，即使做点儿简单的家务我都觉得是个负担。在那些日子里，我大部分时间都是躺着，我试着用做交叉字谜的游戏来克服药物给我带来的昏睡的感觉并考虑我的ITP，也想解决那些疑惑。我开始考虑用替代疗法。
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.
我的血小板下降的比较缓慢。第二轮的丙球蛋白似乎没有太大的效果了。从那次以后基本上就没有效果了。我同意做脾切除手术，并再次希望能够快速的治愈，赶快的结束这无休止的预约医生，住院和对头疼及死亡的恐惧。在我离开家里去医院的时候，我把我的遗嘱放在了我的梳妆台上。
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.
我的外科手术非常的成功，我存活了下来，我的脾被切掉了，并且伤口最终愈合了。然而，这并没有成功的升高我的血小板。三个星期后我的血小板降到了手术前的数值。现在我没有脾了，出现瘀伤后，仍然需要依靠治疗心脏及癫痫的药物。那时刚好是圣诞节，我的家人和我都觉得那应该是我们一起度过的最后一个圣诞节。
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.
我的血液科医生推荐达那唑。但不幸的是，达那唑无效。我们甚至尝试着另外一轮的丙球蛋白并希望我的身体能有所反应，因为现在不同了，我没有脾了。有不同的反应也好。我又因为鼻血止不住住院了，并接受了一轮治疗。
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.
可以选择的治疗方案的列表显然都让人难以抉择的。那些渺茫的希望和更多的肉体伤害甚至比那些我已经尝试过并因此受到的伤害还要多。那看起来似乎有些缓慢或者太多的风险或者有点儿诡异的替代疗法现在看起来却更有吸引力了。我用电脑工作的时候，曾经解决了很多困难的技术问题。但试着用受损的机体来找到一个解决方案并减少药物的依赖却是我曾经面对的最困难的一个问题。很幸运的是，我得到了很多帮助。
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.
似乎对我来说，ITP就是跟过敏有关的。毕竟，强的松是用来抗过敏治疗哮喘的药物并且ITP的定义就是身体受到了外部物质的攻击，比如花粉。过敏症是个积累的过程。假如你对六种东西过敏你可以暴露在五种物质里面没有反应，然而再加上一种可能就会让你打喷嚏。也就是说我们需要减少导致我们过敏的物质的数量。经朋友推荐，我去了一家过敏源测试中心，把我吃的食物进行了过敏测试。我知道这是一种综合分析系统。食物的过敏是非常微妙的。
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.
医生没有收到结果从他第一次送到食物过敏源测试实验室的第一个血液标本里。第一次他告诉我，我的白细胞比较疲软对测试没有反应。我吃了一些维他命来试着增强我的血液，然后有了另外一次测试。这次比较成功。在返回的检查结果中，有21项食物被认为会导致我过敏。我停止了吃那些食物。我也开始吃有机蔬菜因为我的血液显示我有过于丰富的自由基的伤害。它容易被氧化，就像生锈或者做饭一样。（译者注：自由基free radical，化学上也称为“游离基”，是含有一个不成对电子的原子团。由于原子形成分子时，化学键中电子必须成对出现，因此自由基就到处夺取其他物质的一个电子，使自己形成稳定的物质。在化学中，这种现象称为“氧化”。自由基，机体氧化反应中产生的有害化合物，具有强氧化性，可损害机体的组织和细胞，进而引起慢性疾病及衰老效应。众多权威研究表明，负离子能够消减自由基，减缓人体衰老，增强人体免疫力。）那是一个对我来说没有糖果的情人节。
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.
这个世界，我的生活看起来都是毫无希望的。根据那些难懂的说明书，我吃的一些药物导致了我的抑郁。我的身体我的医生让我感觉受到了伤害。为了试着改变这些，我曾经几个月去看心理医生。她帮助我能够一些控制我生活中有可能的事情。她告诉我是否考虑过通过饮食来治疗我的疾病并且借给了我一本养生方面的书。我立即阅读了它并急切的想出去买50磅的糙米回来。
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.
我感觉这种饮食疗法很有道理。它建议我减少一些与过敏源相同的食物。它去除了一些可以产生压力的食物并且免疫系统疾病往往会由于压力而加重。它去除了一些含有化学物质的比较精细的食物。我的身体可能需要有全面营养的食物。我想我已经有了一个健康的饮食了。读了这些资料后我才意识到以前我都不知道什么才是真正的健康。
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.
改变了我的饮食习惯后，我的血小板计数似乎更加稳定了，虽然它依然还很低。但我感觉好点儿了，同时，感觉更加有精力了，比较麻烦的心脏问题也少了。我知道我正在往正确的道路上前进并且最终发现了一丝希望。我想到了春天我可能会好一些。我期待着阳光和温暖。但现在仍然是寒冬，流感季节。我感冒了，并且我的血小板计数直线下降。
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.
我去了纽约看了一位ITP的专家并且他责怪我当地的医生没有让我住院。我想也就是输血小板然后继续选择其它的治疗方案。我的理疗师不允许呆在医院里。伴随着淤血，红点，和满嘴的血泡我感觉非常难受而且没有了讨价还价的余地。我不情愿的接受了一轮长春新碱的注射然后是一系列的血管净化治疗。他们悄悄的用了更大剂量的强的松。
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.
在进行一轮血液净化的治疗中一位探访的护士问我是否她能把她的手放在我的紫癜和我胳膊肘对面的静脉曲张上。我的胳膊在她的触摸下感到很温暖和舒适。在下一轮的治疗中她把她的手放在我的脚踝上并温暖它们当我的胳膊舒缓的放在设备上时。她从我的脚踝上读懂了我的身体，并精确地询问我是否感觉有些头晕。我要了她的手机号码。
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.
在医院里，我的血小板升了一点，到了32，然后又跌了下来，我的头发开始脱落。我的手指尖感觉有点儿麻木。在一轮血液净化的治疗中，我昏迷了，并在治疗室导致了一些恐慌，然后我慢慢重新有了知觉。从那以后，我更加的疲乏，甚至不能爬楼梯。躺在医院的床上，我回想着当我血小板上升时与平时有什么不同的事情发生。我想起了那个护士的温暖的触摸。我要求出院。然后我给那个护士打了电话。
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.
礼拜一一早她来到了我家，在我准备去看医生前，给我做了一次治疗。这一次血小板分析仪上的曲线图显示了一些迹象。医生震惊了。我的血小板计数又上升到了3万。他推迟了另外一次的化疗的方案。我看到了光明。
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.
这位护士每天都来我家给我进行一种灵气疗法一直持续了两周，这种治疗方法的官方名称我是从医院看到的。当我有足够的精力去她家时，我们继续保持一周几次的会面。在我们做这种可视化练习的过程中，我们谈到了我们的童年，并且练习呼吸的技巧。她教给我如何去倾听自己的身体并且关注它每天的反应，一件很容易的事情，却让我忽视了很多年。
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.
与此同时，我一直坚持进行着我的饮食疗法并且发现假如我稍微不注意，作为提醒，一些红点就会出现在我的嘴里。这是一种很充分的事实来促使我一直注意自己的饮食。我拜访了一位养生学家，就如何进一步调整我的饮食使之能够应对ITP和我身体的特殊需求方面得到了一些建议。
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.
在三月底，当我短期的疾病保险结束后，我又返回了工作岗位，只能间断的上班，戴着假发。我的血小板计数仍然很低，但我已经很惊奇我竟然能够恢复一部分正常生活了。几周后，我又开始了全职工作。
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.
由于不满意我的血小板计数，我继续加深了对饮食疗法跟灵气疗法的研究。我阅读了印度中医。好几年，我都在练习瑜伽动作并且坚信那些持续了好几个世纪的东西肯定是好东西。印度中医也在那个范畴。我计划去找一位印度医生。
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,monitoring their effect on my count, and luxuriated in my body’s daily coating of warm sesame oil.
他的建议打印出来有9页长。冥想，中药，特殊音乐，麻油按摩（应该就是中国的刮痧），净化疗法，等等。他调整了他们的优先顺序。冥想，中药和麻油按摩放在了前面。于是我参加了一门冥想的课程，一种减少压力的办法。我逐渐的开始服用一些中药丸和汤药，并监测它们对我血小板的影响，而且我很享受麻油按摩的感觉。
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.
到了夏天，随着我饮食的调整，冥想，按摩，中药和定期的灵气治疗，我的血小板计数开始迅速的攀升到了接近20万。尽管已经到了标准计数，但我仍感觉有些脆弱，不过我已经被震惊了。起先，我的一位血液科专家说我的ITP是误诊，尽管来自于其他三位血液科大夫很多次的诊断和确认。然后他说，它会自愈。但我感觉它好像不是自愈的。在后来的几年，我试着减少中药。我的血小板开始下降了，当我又重新服用中药后，它又升上来了。偶尔，我吃了一些不在我饮食列表里的东西，接着我的血小板就降下来了并且我感觉到身体不舒服。然后我又重新回到了我的饮食方案上。
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.
在1994年，由于一项有压力的工作任务，会接触到杀虫剂和一些家庭装修的项目，我注意到我更加容易出现淤青了。一项血液常规测试证明了这一点。我的ITP又回来了，尽管在一种可控的范围内。这一次，经过了许多实验和错误后，我又重新开始灵气疗法并且我的血小板计数又回复了正常。
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.
我的健康追求持续，我保持着不断学习并怀着一颗感恩的心。现在我每天都会为那些出现在我生活里的大大小小的奇迹说声“谢谢你”。我非常珍惜那些曾经帮助我恢复健康的人。我现在内心里已经更加清晰了，并指引着我走向在我没患ITP前那些未知的道路。窗外的鸟儿在唱着歌，我的花园也是那么的鲜绿……..
发表于 2021-2-14 23:05:25
