Connie

How HSS Changed My Life (English Translation, originally written in Chinese language 請向下滾動閱讀中文原文)

I was diagnosed with lupus nearly 20 years ago. Fortunately, lupus only attacked my skin, so the doctor at the time said that I didn’t need to take medicine because the side effects of taking medicine are far greater than those of not taking medicine. This state has continued until the last 5 years or so. I have suffered from an increasingly bad migraine headache. I have seen a number of Western and Chinese doctors. In addition, I have other illnesses. I tried many different treatments and could not find a solution. The costs of various examinations was very expensive, it added to the financial pressure. Every time I saw a specialist, I would usually see him/her once as I would avoid the expensive consultation fees of follow-up visits. I ended up making all kinds of self-evaluation/medication on my own, but to no avail. Persistent symptoms of low-grade fever, joint pains, and severe hair loss and heart palpitations began to appear two years ago. I felt stressed about my condition which was getting serious and unpredictable - sometimes it seemed better but other times worse. I was worried about the high medical costs in the United States and not being able to find the right doctor. I felt that my mental stress was making my lupus worse.

So I turned to the internet trying to search for information. I discovered LANtern® (Lupus Asian Network) at HSS by accident. At that time, I just wanted help for recommendation of a good rheumatologist. Eliza Ngan-Dittgen, LANtern Program Supervisor, responded to me quickly and called to chat. She suggested several Asian doctors who speak my language and are highly regarded. During the calls, Eliza learned that I did not have medical insurance in the United States, she offered to help me to find solutions without giving me any pressure. In Asia, people generally feel uncomfortable accepting financial assistance. It was difficult to clearly describe how to feel at the time. In fact, this disease bothers me a lot. For years, I have looked healthy and normal, but I am often in indescribable fatigue. I have to be strong and work to support my family. Because of the financial burden, I have been trying to ignore my health although I am aware that the consequences can be very serious. I believe this kind of pressure has been hiding in my subconscious mind. When certain symptoms appeared, I was very scared but felt helpless to solve it. So when Eliza told me that she would try to help me to resolve the financial issues, I suddenly felt like someone had lifted a heavy load off my shoulders and told me, ”you can take a good rest now”. Yes, this was how I felt. I had not even seen the doctor for my illness, but I already felt hopeful. Eliza reached out to Randy Rodriguez, Voices Medicaid Education Program Supervisor, who worked collaboratively with HSS Financial Assistance Program (Stacy Hamilton) to expedite my application. They have solved the biggest crisis in my life, I am so relieved. I can finally treat my lupus without worries and distractions! If I am not healthy, my life and my family will have nothing. I am grateful to HSS for helping me to regain confidence in life without losing dignity.

I would like to thank Eliza, Dr. Weijia Yuan, a HSS rheumatology specialist, Randy and Stacy. Eliza especially communicated with Dr. Yuan about my situation; Dr. Yuan immediately stated that even without financial assistance, she could waive the consultation fee. I am very grateful to Dr. Yuan’s kindness; this is a noble quality. After meeting with Dr. Yuan, I have full confidence in her. Her experience, skills and care for patients empower me; I no longer feel helpless and afraid, even when I saw the poor results of my lab reports.

I hope that more patients suffering from lupus will be as lucky as me and be able to get the help they need. There is warmth in this world, I met angels at HSS who bring hope and strength to patients like me.

Connie

HSS 如何改變了我的生活

我在將近 20 年前就已確診患有紅斑狼瘡，不幸中之萬幸是紅斑狼瘡只攻擊我的皮膚，所以當時的醫生說我 並不需要服藥，因為服藥的副作用遠大於不服藥的狀態，這種狀態一直持續到最近 5 年左右，我在越來越嚴重的一種類似偏頭痛的頭痛狀態裡深受其害，看了很多的西醫和中醫，加上我本身還有其他的病症，幾 年下來試過很多種方案都不能找到解決的途徑，再加上經濟上的壓力，做各種檢查費用不菲，每換一位專 科醫生都需要支付很昂貴的診金，這讓我總是看一個醫生又不敢繼續，自己做出各種似是而非的判斷又不 得要領，特別是近兩年開始出現低燒，關節疼痛，嚴重脫髮和心悸等等種種似乎很嚴重又似乎一下子沒事 的狀態，心理壓力非常大，幾害怕病情的不可控又害怕美國的高昂的醫療費，更害怕如果找不對醫生，那 將是經濟和精神上的雙重打擊。

於是我嘗試在網上搜尋一些類風濕科醫生的研究，沒有想到，無意中發現了 HSS 醫院之紅斑狼瘡亞裔關懷聯盟計劃，當時只是想請他們幫助推薦一位可靠的類風濕科醫生，很快關懷聯盟計劃主任 Eliza Ngan- Dittgen (顏小姐) 給我回覆並且親自打電話詳細介紹了幾位口碑非常好的華裔醫生，方便語言溝通, 在通話過程中她了解到我沒有美國的醫療保險，隨後她在沒有給我任何壓力的情況下提出幫我申請醫療援助，亞裔人仕普遍覺得取經濟援助不好意思，很難清楚的描述我當時的感覺，實際上這個病困擾我很多年，我看上去健康正常然而常常都在難以形容的疲倦中，但又必須堅持工作支持家庭，以至於非常害怕看這個費用昂貴又似乎不著急但後果會非常嚴重的病，我相信這種壓力一直藏在我的潛意識裡，當某些症狀出現時我非常恐懼然而又覺得無力解決，所以當顏小姐告訴我她會幫我解決財務上的壓力時，我忽然有一種有人幫我把肩上的重物接過去，並說: 「你好好休息一下吧」，對，就是這種感覺，我還沒有開始治病但我已經覺得充滿希望，顏小姐與 Voices 白咭教育計劃主任 Randy Rodriguez 取得了協助，並與經濟援助計劃部(Stacy Hamilton)密切合作，以加快我的申請速度。 他們的幫助解決了我的生活裡最大的危機，我終於可以放心的，心無旁騖的去治病了！如果沒有了健康，我的生活，家庭將會一無所有，我感激 HSS 醫院的特殊之處更在於它幫助了像我這樣景況的人在不失尊嚴的情況下對生活重新充滿信心。

在此我要特別感謝顏小姐以及她為我介紹的類風濕科專科醫生袁維佳醫生 Randy 和 Stacy。顏小姐特別和袁醫生溝通了我的情況，袁醫生當即表示即使沒有醫療援助她也可以免收診金，我非常感謝袁醫生的醫者 仁心，我認為這是一種非常高貴的品質，在和袁醫生見面後更加對她充滿信心，她的經驗技術和對病人的 體貼讓我即使看到自己的檢查報告那一堆糟糕的數據時也不再無助和害怕。

希望有更多的患有紅斑狼瘡的病人都能和我一樣幸運得到 HSS 醫院的幫助，人間自有溫情在，他們像天使一樣為我和其他紅斑狼瘡病人帶來希望和力量。

Connie