I went home and despite the confirmation of lupus, I didn’t feel as relieved as I thought I would be, instead I felt even more anxiety and fear. It was a lot to take in and that first night when I got home, all I did was look up lupus on the Internet. I went to group chats, web pages, personal blogs, foundation pages; I went all the way to the 9th or 10th ‘O” in Google. I found a lot of interesting tips that I did not know before, and I wanted to run them by my doctor to get his professional opinion. I started to jot down the things that stood out to me the most like, starting and anti-inflammatory diet, giving up dairy, this was going to be a problem considering my love of cheese. I’ll get back to that later. My extended search also lead me to reading about other people’s experience on Plaquenil, this only added to my anxiety and fear. The message boards were the worst, reading endless comments about hair loss, rashes, nausea, weight gain or loss. It was hard reading about people struggles with lupus and being on Plaquenil, although there were some positive posts and comments. I had mixed feelings at the end of the night and took three Benadryls to help me sleep, I was going to pick up my prescription in the morning, and I wasn’t sure if this drug was going to be the answer for my relief or any kind of healing.
I started Plaquenil the next day and the discomfort began. Three days into taking it I didn’t think it was going to work well with me. It was probably my negative outlook that only exasperated my side effects to the medication. But I am one of those people, who are the 2% that will experience these kinds of side effects, EVERYTIME. With my new diagnosis and me complaining about what the doctor had prescribed, many people started to suggest other sources of treatment that a friend’s cousin’s sister used and cured her from cancer or something. I was so desperate to get off the plaquenil so I looked into everything. I was two weeks into taking it and I was starting to feel like a crackhead, I was constantly itching, even more than before, my rashes were multiplying and I had three bald spots. I wanted off this medication! I looked into cupping, reiki, getting my spine re-aligned or aligned, hypnotism, hyperbaric chamber (too expensive). I finally settled on acupuncture.
My friend, Nelia told me about this life-saving doctor who practiced Chinese acupuncture, I wasn’t sure if this was better or not but I went with it. She talked about her friend, who went to this doctor and reported feeling better and blood tests improving, so I was hyped and ready to check her out. The only catch was that this awesome doctor of Chinese acupuncture was in Washington D.C. But just to show you how desperate I was I decided to take day trips on the bus to Washington D.C. to check her out. I would have one of my many family members, often my sister or my cousin, pick me up from the bus station and take me to her office. The first time I went, I couldn’t believe what I was doing, but the Plaquenil was making me so miserable and I didn’t have another appointment with the rheumatologist for another week. I had gone to see the nephrologist, he was a kind and compassionate man, but he said something about a kidney biopsy and I never went back to see him again.
Before my day trip, I had tried to look up information about this Dr. Yongli Ni. She seemed somewhat legit from what I could tell, but what did I know. I set out the next day to go to DC. I took my IPod and a book. I did not read one word of that book, and listened to my iPod until it died. Instead I people watched on the bus, I took the Mega Bus into DC. It was a double-decker bus; there had been a news report earlier in the week or month about a double-decker toppling over so I sat downstairs. My sister was on time at the bus station, I was surprised but happy with this rare happening. We said our hellos and hugs, and we set off to Dr. Ni’s office, I was far more optimistic about Chinese acupuncture than Plaquenil and that was a good feeling.
I am not sure what I was expecting, but her office address was right in the middle of a relatively nice area in DC proper. So when I walked into an unmarked office building that was beige and dank, my heart and expectations sank. There were many beige and off-white doors with brown nameplates. I located the one that Dr. Ni’s name on it and walked in. The beige and bland ambiance continued in her waiting room. There were a few flea-market bought posters of Chinese-like images in cheap frames mounted on the beige colored walls, with off-white hard plastic chairs and a brown side table with incense burning in a vase. The carpet was beige colored with various stains throughout the space, and hanging from the ceiling was a pop of color in the form of a red Chinese lantern. Ok, WTH did Nelia recommend to me, was all I could think. I wanted to call her and tell her about the beige abyss that she had sent me to, but I refrained because I knew that the conversation would not go very well for either of us. Instead I took a seat on one of the off-whit/beige/blah plastic chairs and waited for someone to come out. Not even two minutes later a short, dark-haired Chinese woman, wearing a white medical coat poked her head out, and with a heavy accent told me that she would be with me shortly. “Ok”, I thought and sat back down to only notice that the room was full of my arch nemesis- flies. I spotted four of them in less than two minutes, Oh, God this was a bad idea. I was already itchy and irritated from the plaquenil and Benadryl combination that I was on, and swatting flies would only increase my agitation with my current situation and life itself. I wanted to call my sister to come and get me, but I figured I was four hours into this journey; I might as well do one session. While I waited I started to scratch and swat, during what must have look like a crack-head frenzy, the room got hotter and more humid with every swat. Maybe because I was working up a mild sweat with the voracity of my swats, they were Serena Williams power swats, “UUUUggggghhhhh how much longer?” Not even three seconds after my spontaneous outburst Dr. Ni came out with her patient. She did a quick transaction where she handed the patient a few dark bottles with what I would assume was Chinese writing and gave her these instructions: take three times a day before you eat, and don’t worry about the brown pee. WTH, brown pee? I looked away as I could tell that the lady was slightly embarrassed about the extra information that had been shared out loud. She quickly left and Dr. Ni turned her attention to me, she looked at me with a baffled look on her face. So I rushed to stand up and introduce myself, I reminded her that I was the lupus girl from NYC. Her face went from confused to warm and inviting and she quickly ushered me into a dark room, as she told me about how the lupus was poisoning my body in a thick Chinese accent. The room had a massage bed in the center of the room and a desk with two chairs, one facing the desk and the other next to the door. She invited me to sit next to the chair near the door and asked me to explain my medical history so far. I started to talk about the rash that formed on my eyelids and going to different doctors, thinking I had AIDS, her eyebrows shot up when I said that, and then she cut me off. “Ok”, she said, “yes you need this treatment, and it will work for you, but you have to come at least six times.” “Now let me show you the toxins you, have”, she said as she proceeded to hook me up to a machine that kind of looked like an EKG machine. She showed me the high levels of toxins in my body, but honestly I had no idea what I was looking at; I just nodded and tried to look concerned. After she took off all of the sticky attachments from my body she ushered me into another room, this one slightly brighter, with another bed. She had me remove my top, and lie down. She then began the treatment and started to poke me with thin needles. It didn’t hurt, but I would get a sharp sting with every six needles. By the time she was done I had over 100 needles coming out of my body, with about 20 needles in my face. She told me to be very still, and that she would be back…later. I made the first mistake by nodding and it stung like hell. I tried to get myself to relax and I started my deep inhale yoga breathing- Ouch. Ok, no deep breathing, I then tried to close my eyes and focus on my third eye and be very still. My few tranquil seconds were interrupted with a buzzing near my face. WTH? My enemies were among me, and I couldn’t swat at them and kill them. I tried to ignore it and go back to my peaceful place but I couldn’t, and for the next five minutes I was swatting and wincing in pain from moving. I wanted to scream for Dr. Ni to come in and rescue me. I endured the pain for what felt like an eternity, seriously where did these flies come from. The door was left slightly ajar so they were taking shifts, coming in and out of the room to torture me. Dr. Ni finally came in and asked me how I felt, I blurted out “There are flies!” She turned her head to the side and said, “oh, yeah they bad” with the Kanye shrug. She removed all of the needles and escorted me back to the first room and presented me with similar pills that she had given to the woman with the loose bowels. They were round black gel tablets that were straight from China. She instructed me to take about six pills a day and to stop taking the poisonous Plaquenil. Any other human being with common sense would’ve asked questions or hesitated about taking the pills, but not me. I ate everything up she was saying, even though the treatment, the office, the pills, and the “toxin” machine were all questionable. Despite some very clear warning signs, I bought the pills, and carried them like they were Holy Grail of pills. The sun was almost blinding as I left the darkness of the building; I saw it as a sign. I had entered the light…