歪果仁系列狼疮故事：一个40年的狼疮患者~

来源：纽约狼疮基金会

翻译：风吹过来你的样子（sle互助圈翻译志愿者）

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芭芭拉.艾布拉姆斯患狼疮已经有40年了，她对待狼疮病情的方法就是尽自己所能并且期望有意想不到结果。

 “狼疮刚刚发生的时候，我学会了接受不确定性，芭芭拉说”我已经学会了许多健康技术来适应我的情况。

随波逐流

像许多的狼疮患者一样，芭芭拉的情况并没有那么简单。她的红斑狼疮的并发症之一是增稠的血液,这导致了她的眼睛中风,让她没有周边视觉。“因为血液粘稠从而影响了血液的正常流通,使一些血管在我大脑萎缩,并且有的时候我的头会一直的疼。我不得不采取血液稀释剂和不断检测来更好的生活。“但是芭芭拉的回答是简单地做需要做的事情——从不缺少任何一次和医生的约会或检查,并且使用眼镜阅读和户外戴着太阳镜来保护眼睛眩光。

因为狼疮产生的疤痕组织已经发展到了她的肠道里，所以芭芭拉已经断绝了含糖饮料和辛辣食物来防止炎症的发展。为了应对身体对于环境的敏感，每当她出门的时候她都会戴上帽子或是一顶假发，并且尽可能的花更多的时间在户内，芭芭拉知道了自己的身体不能忍受寒冷。去年他患上了肺炎，从空调的地铁车到热的太阳，然后进入一个空调办公楼。重型抗生素是必要的，以打击细菌。现在，她尽力避免在冬季和夏季的天气外出。

 服用多种药物来治疗她的种种表现的红斑，巴巴拉拥有了所有的“好东西”的时候，她离开了家。“我不喝酒或抽烟，以减少可能引发耀斑的可能的触发点。我不熬夜，得到充足的休息。我学会了适应。我是一条变色龙红斑性狼疮。”

社区活动：

巴巴拉已经参加了几年的狼疮研究，为测试提供血液样本。“我喜欢参加审判，因为我会得到医生的注意，我不会有其他的。”

致力于s.l.e.狼疮基金会的布鲁克林外展中心，巴巴拉成为她的家族成员。“布鲁克林区支持集团给了我一个属于我的地方，当我无处可转的时候。这是一个充满爱的地方，总是有了解我的人。”

 尽管有局限性，67岁的巴巴拉在她的布鲁克林区社区也很活跃。她在附近的一个高级志愿者中心，是一个观察者。也许是最独特的，巴巴拉是一个指定的涂鸦清洁，致力于让她的领域一尘不染。

“我已经改变了我的生活，所以我可以适应不管是什么东西扔向我。狼疮做自己的决定，我做我的。我选择做我能做的最好的每一天。”

下附原文：

翻译：风吹过来你的样子（翻译志愿者）

芭芭拉.艾布拉姆斯：一个变色龙红斑狼疮患者

Barbara Abrams has lived with lupus for 40 years — her approach is to expect the unexpected and to do the best she can every day.

“Things just happen with lupus, and I’ve learned to accept the uncertainty,” says Barbara. “I have learned many wellness techniques to adapt to my situation.” 

Goes with the Flow

Like too many people with lupus, Barbara’s situation has not been easy. One complication of her lupus is thickening of the blood, which led to a stroke in her eye, leaving her with no peripheral vision. "Because the blood was too thick to circulate properly, some of the vessels in my brain atrophied, and my head still hurts at times. I will have to take a blood thinner and be constantly monitored for the rest of my life.”  But Barbara’s answer is to simply do what needs to be done — never missing a doctor’s appointment or test, using eyeglasses to read and wearing sunglasses outdoors to protect her eyes from the glare. 

Because she developed scar tissue in her intestinal track, Barbara has cut out sugary drinks and spicy foods to prevent inflammation. In response to her body’s hypersensitivity to the environment, she makes sure to wear a cap or wig when she goes out and spends most of her time indoors. Barbara learned the hard way that her body cannot tolerate cold; she caught pneumonia last year going from the air conditioned subway cars into the hot sun and then into an air conditioned office building. Heavy antibiotics were necessary to combat the bacteria. Now, she does her best to avoid the weather outside in winter and air conditioning in summer.

Taking many medications to treat her various manifestations of lupus, Barbara describes having to take all her “goodies” with her whenever she leaves home. “I don’t drink or smoke to cut down on possible triggers that might cause a flare. I don’t stay up late and get plenty of rest. I’ve learned to adapt. I’m a chameleon to lupus.” 

”

Active in the Community

Barbara has participated in lupus research for several years, providing blood samples for testing. “I love being in trials because I’m getting medical attention I wouldn’t have otherwise.” 

Devoted to the S.L.E. Lupus Foundation’s Brooklyn Outreach Center, Barbara considers the members her family. “The Brooklyn support group gave me a place to belong when I had nowhere else to turn. It is a loving place with people who always understand me.” 

Despite limitations, at 67 Barbara is also active in her Brooklyn community. She volunteers at a nearby senior center and is a block watcher. Perhaps most unique, Barbara is a designated graffiti cleaner, dedicated to keeping her neighborhood spic and span. 

“I have shaped my life so I can adapt no matter what is thrown at me. Lupus makes its own decisions, and I make mine. I choose to do the best I can each and every day.”