My name is Nono Osuji and in Skin Struggles I recount my personal experience and struggle with Lupus. Welcome to the 5th post of my ongoing journey.Â
As I finally awoke from my Benadryl induced sleep and I began to clear the sleep from my eyes I started to recall the events from the night before.  I let out what could only be described as a low bellowing moan. I wasn’t ready to face another day and the stranger was still in my apartment using my bathroom. I wanted to stay in bed until he left, so I decided to watch television while he got ready. Before he left he asked me again if I was going to be able to help him, he would pay me back, (yeah right). I told him that I would think about it and I would try. I knew that there was no way that I was going to give him any of my hard-earned unemployment checks, but I thought of some possible sources. However at that moment, I needed to wallow in my own self-pity alone so I hurried him out with empty promises and spent the rest of the day in bed. That is how I spent a lot of my days, school was out for the summer. I was happy that at least I had successfully finished my first year of grad school with a perfect 4.0 G.P.A. I was still interning in Harlem but it had become sporadic and my mood and health determined the productivity of my days, which were often very unproductive.
I had finally decided to get out of bed after almost a week of agonizing over my blood tests. I didn’t understand why I hadn’t heard back from the dermatologist. She had finally called me about the biopsy that came back negative for lupus, but it was determined that it was some kind of dermatitis. Well that was good news right? But the piece of rash that she took, looked nothing like what was going on on my face and arms now so I wasn’t fully satisfied with those results. I decided that if I hadn’t heard from her in almost what was now about to be 2 weeks that nothing was really wrong with me and that I needed to stop acting like I was on my death-bed. So I decided on day 12 of my laziness to get up and make it a good day. Although Z’s pending imprisonment loomed over us I was not going to let that affect me. I was only able to get him $200 of the $1500 he needed. A friend, well really an ex-boyfriend gave me the money. Of course he did not know that it was going to prevent the imprisonment of another man, but I didn’t think he needed to know the silly details. It was a Thursday and I was actually due at my internship in Harlem. So I called them early in the morning to make sure that they actually needed and still wanted me there. The Producer and Executive Producer were so kind and understanding of my situation. They said that they totally understood and would work around my schedule and health.
I went into the office and had a pretty productive day. I helped with the website, the Facebook account and did research for the feature documentary and I made a conscious effort not to look at my arms. I even treated myself to some fried chicken, macaroni and cheese, fries, cornbread and cake. It was a treat although now looking back on it, it sounds like a last meal.  I did steal a few lingering glances at my rashes, which were still big and ugly, but I quickly moved on; all in all the day was productive and fun, I was happy that I had come out. As I was preparing to leave for the day I wondered what I was going to do for the rest of the day, I didn’t want this good day to end. I texted my friend, Lucy, to see if she wanted to watch a movie or something. We were texting back and forth trying to make plans. I got my stuff, thanked everyone for a great day and left. As I was on the bus still texting Lucy about our plans, I decided that I wanted to share my good day with my mom. I was about to make a call to her when a 212 number called me. At first I couldn’t recognize the number, but then it clicked that it was Dr. Doom Dermatologist’s number and my stomach started to turn and my heart beat began to race.
I answered the phone with a weak, “hello”. She responded with her usual brash tone, “Hello, Nono, this is Dr. Doom.” The phone reception was not the best and the noise on the bus was at an all time high, as I was in Harlem and kids were getting out of school. “Yes, this is she. Hi, how are you?”, I replied.  I wasn’t sure why I was trying to make small talk but I was willing to stall whatever news she wanted to deliver on the other end. She awkwardly replied fine in a confused and frustrated tone; she obviously did not care for the small talk. “Your blood results have come back and they have come back abnormal and positive for”… the rest of her sentence cut off. But already I could feel my palms getting moist and all of a sudden it was 100 degrees on the bus and I began sweating. I asked her to repeat herself as I did not catch the end of her sentence, although at that moment I just wanted to run screaming from the bus. She said that it came back abnormal and that it was an indication that I had some kind of autoimmune disease and that it was out of her scope of practice and that I needed to go to a general practitioner for further testing.
I felt like my insides had turned to jello and I thought I was going to be sick. I wonder how quickly I could clear the bus out if I vomited right there in the middle of it. I didn’t understand what she was saying. Well did it specify what kind of autoimmune disease it could be? What were the options, what did you test me for, why are you telling me this and seemingly washing your hands of me? Why am I on a bus hearing this information? I tried to get more out of her but her tone became standoffish and she told me that what was going on with me she could not help with, she sounded like she was trying to rush off the phone with me as soon as possible so as not to catch whatever it was that I had. I abruptly hung up on her and sat there shocked, nauseous, and panicking. I hated her for giving me such news. I wanted to call her back and get more out of her and then tell her off about her deplorable bed-side manner, but my mind started to get fuzzy and my imagination and thoughts started to torture me. Forget the crazy thoughts that once loomed in my head before, these were straight out of an insane asylum. It was like I was on some kind of drug-induced high I could not see straight, I ran into people and poles. I almost fell down the stairs to the Subway. I couldn’t get home fast enough. I had to Google my symptoms and the autoimmune disease I might have.
When I finally got home after an excruciatingly long subway ride, I got on the computer. I Googled autoimmune disease and the first result that came up was AIDS. I stared at the word for over an hour. I looked at all of the symptoms of AIDS and they were all what I was experiencing.  I looked up skin disorders related to AIDS, and the rashes of the people with AIDS looked just like mine. I thought about Tom Hanks in Philadelphia,”Oh my God” my rashes looked just like the lesions he had that gave it away to everyone that he had AIDS.  That’s it I thought, that’s what I have. I have AIDS.
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