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| 2010/01/07 09:21:42瀏覽1516｜回應0｜推薦63 | |
我的目地是傳達這種病的的保健常識 同時還有另一個目地是希望每個人 都能去感受患者 身體與內心的痛苦 你會因感同身受 而想幫助他們 還是拋棄他們 又或著你根本沒有感覺 我相信你和我一樣 很想伸出你的手幫助他們 用真心的祝福 也是一種幫助 希望有一天他們能康復 僵直性脊椎炎(Ankylosing spondylitis)患者的故事 英文名稱： Ankylosing spondylitis 中文名稱： 僵直性脊椎炎 簡稱縮寫： AS 名詞解釋： 是一種自體免疫疾病 主要侵犯脊椎關節及附近肌腱 韌帶等軟組織的慢性疾病 其鈣化僵硬 使脊椎失去柔軟度而形如竹竿 早年被稱做「竹竿病」 部分病患會演變為嚴重的駝背 期出現脊柱強直 研究發現與發病有關的HLA-B27基因 在漢族人群的表達較其他民族人群高 Peter, a father of three, was diagnosed with ankylosing spondylitis five years ago. Peter先生是3個孩子的爸爸 被檢查出有僵直性脊椎炎是5年前的事 When he was first diagnosed he felt anger and frustration, which he often directed at those around him. Learning to turn that anger towards the disease, instead of other people, has helped him cope with the pain and limitations of his illness. 當他第一次診斷出他有這個病時 他生氣周遭的人 後來他知道應該生氣的是這個病而不是周遭的人 周遭的人是在幫他對抗這個病痛和制止他的生病 What form of arthritis you have, and when were you were diagnosed? I was diagnosed five years ago with ankylosing spondylitis, which is a form of arthritis that predominantly attacks the spine and also hits other parts of your body. It is an autoimmune disease, so it affects your health and wellbeing at times. You are susceptible to fatigue, stiffness and joint swelling. 你得的是那一個類型的關節炎 何時被診斷出的? 我是在5年前被診斷出有僵直性脊椎炎 這個類型的關節炎病症主要是攻擊脊椎部位而且也打擊你的身體其他部位 它是一種自身免疫性的疾病 有時它會影響你的健康和安寧 你是會容易 疲倦 僵直 關節腫脹 What were your symptoms and what led you to go to the doctor? Initially, the way I found out that I had arthritis was that I had an injury that hurt my back and I was sent to hospital. The injury had me lying in bed for about three months, and what occurred in the end was that I was going to lots of doctors and professionals and everything else to see why I wasn't getting better when I should have been. It wasn't until I chanced upon a doctor who looked at my condition and looked at my symptoms, and came to the conclusion to send me off to a rheumatologist where I was diagnosed. 什麼症狀和什麼引導你去找醫生? 最初是我受傷 那個傷是在我的背部 我被送到醫院 在醫院我住了3個月 因為我一直都沒有康復 我後來就一直看了很多醫生和專家 他們認為我是應該康復卻沒有好轉 直到 我有機會碰到一位醫生他看我的情況和症狀 結論出來 他就送我去找風濕病專科 在那裏我才被診斷出我得僵直性脊椎炎 Is pain a major symptom for you, and what strategies do you use to deal with the pain? Pain and stiffness would be the major symptoms of the disease. The best way to handle the pain and stiffness is usually hot showers, heat packs and regular exercise. Exercise is important because I find after I have done a heavy exercise session, the next day I do feel quite well. 對你而言痛是你主要的症狀 不知你用什麼策略應付你的痛? 這個病主要的症狀是痛和僵直 對付痛和僵直的方法是用 熱水洗澡 暖暖包熱敷 定期運動 運動是很重要的 因為我發現我完成一個劇烈運動的課程時間後 第二天我感覺身體狀況十分舒服 劇烈運動: 舉重 扯重 拉重 之類的運動 Usually I have a really, really hot shower in the morning and do exercises in the shower to loosen up all my joints in my back. I don't drive to work; I actually walk to the station and that helps a lot. I usually find - during the day - that if I am sitting still in any position for too long, I will get up and move around and stretch, and walk home again at night. Once a week I do hydrotherapy, which usually gets me going through the rest of the week. 通常早晨我真的真的洗熱水澡 洗澡時我會做運動因為我要放鬆我背部的關節 我不開車去工作 其實我是走路到火車站 這段走的路程 對我整天的身體感覺是舒適的 如果我坐任何坐姿太久 我會站起來走動還有伸展筋骨 下班後再從火車站走路回家 每一星期做一次水療 它會讓我整星期都很舒服的安然度過 I believe that with arthritis you have these two lives, and one of them would be basically when you have a flare-up - you really go into a survival mode, where you just get through life and just survive. You are just waiting until the pain goes again. Then, when all the pain has gone and you have finished the flare-up, you can get back into a normal life again. That's when life comes back on track again. 我相信跟關節炎生活有兩種方式 一種是基本上當你的病爆發時 你進入求生的模式 等待病痛的離去 你就在這種方式度日和求生 當所有的病痛走了 你就完成了一次病的爆發 你就可以再回到一個正常的生活 那就是再回歸到軌道上繼續生活 For me the condition sort of shows itself and hangs round for maybe a couple of weeks or months so, and then fades away. It might fade away for a week; it might fade away for a month, depending on the circumstances around you. In my case, pressures of life, the food I have been eating and what the weather conditions are like are all contributing factors. 對我而言這種生活狀況可能會架著我數星期或數個月 然後消失一星期或一個月 它是憑藉你的狀況而發作 在我的生活壓力問題是 食物和天氣 這是我發病的原因 Can you tell me about the sort of life you can live with AS? For me, personally, I find that I can live quite a normal life with AS. It rears its head and takes control sometimes, but not for very long. Sometimes it will prevent me from doing things, but it will only prevent me from doing those things while it is active and then, when it backs off again, I will then go ahead and do those things - just to sort of spite it, I think. But in the long term, it doesn't stop me from living a full life. 能告訴我 怎樣的生活能帶著僵直性脊椎炎活下去? 對我個人而言 我可以帶著僵直性脊椎炎生活的十分正常 有時僵直性脊椎炎張牙爪舞的控制我 但是它不會花非常長的時間 我想有時僵直性脊椎炎會阻止我做事情 但是我還是持續做我的事 它只是一種可恨的病 在這個漫長的生病中 僵直性脊椎炎並不會阻止我有一個充實的生活 來源: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pspages/ps_arthritis?open http://hospital.kingnet.com.tw/library/diagnose.html?lid=346 |
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