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 Benadryl tablets 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 on MegaBus. I took my iPod and a book. I did not read one word of that book, instead I people watched on the bus and listened to my iPod until it died. 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 occurrence. We said our hellos and gave each other 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.