After an evening filled with margaritas, pina coladas and a lot of cheese filled goodies I ended my AIDS free celebration with Nelia and Houda, but I did not want my night to end. I wanted to enjoy NYC, knowing that I did not have AIDS, and that that was one less thing for me to worry about. I had the biggest smile on my face all night as I walked around the Penn Station area people watching and taking in the sites of the city. I laughed as other people laughed not really knowing what they were laughing at, just wanting a reason to laugh. I smiled and made funny faces at babies and said “hi” to almost everyone. In New York you can’t say hi to everyone that would solicit unwanted interactions that may lead to them almost following you home, until you get off the train and take a detour to try and lose them. (I may have experienced this once or three times before). I just didn’t want the night to end, because I knew that tomorrow I would have to deal with my health once again. I lingered a bit longer in the city walked down to Union Square, and then came home around 1am. I caught up on some DVR shows – especially The Daily Show- and finally went to sleep with only two Benadryl pills. I was feeling so great that the burning sensation in my arms didn’t bother me as much that night.
When I woke up the next morning I was still on my high and didn’t want to bother with my health, but I couldn’t ignore it. Dr. Doom Dermatologist had told me that it was best if I went to a general practitioner to find out what was going on. So since I had satisfied my crazy notion that I had AIDS, I figured it was time to do something sensible and no longer give in to my wild imagination. I really didn’t have a general practitioner, but I did have a great gynecologist so I asked him for a referral. He sent me to a doctor, whose office was only a few blocks away from his own. I called the doctor and made an appointment for the following week. I was a bit apprehensive about going in because I was still unsure about what he would tell me so I fell into a bit of a funk, and lied around all day watching TV, until the day of the appointment. Unfortunately, the nights were not easy for me, the pain that I was experiencing was becoming overwhelming. I would lie in bed and ice my body to try and relive the burning sensation that I had all over my body. The pain felt like someone lifted up my skin and released a nest of wasps and fire ants, and no matter how hard I tried I could not alleviate my pain, except with drug-induced sleep. My body was falling apart day by day, and the reality of what was going on with me set in, the whole AIDS thing seemed like a lifetime away and so ridiculous.
The morning of my doctor’s appointment I didn’t get over-dressed like I did for my clinic appointment, but the same feeling of anxiety and fear came over me. At this time my spiritual relationship was a bit shaken. I literally went to church every other day, and would lie out on the altar when I decided that I had AIDS. The morning of my general practitioner’s appointment I was in a neutral space with Christ. I had decided that He really didn’t like me and was only putting up with me for technical reasons. I was really upset that all of this was happening to me especially during my summer, which was supposed to be filled with internships, working and partying. Instead I had become a home body and walked around outside with my head hung low because I was ashamed of what was happening to my skin, and just didn’t want anyone to look at me. That morning was no exception, in 90-degree heat; I still had a sweater over my sleeveless top and capri pants. It was a 40 minute train ride to the doctor’s office, and all I did was stare at all of the people who seemed to be enjoying their summer vacations. I also took in all of the people, who seemed to not have mirrors in their homes, I had to assume or else they would not be dressed the way they were. This “ratchet” dressing happens more frequently in the summer months, when I guess people are so hot that their better judgment is clouded. One particular woman on the train was wearing a prime of example of such “ratchet” summertime attire. Her hair had grown out from its once red tresses and now revealed a dark brown color that gave her that two-tone looking hair. She had on a very tight, dirty, strapless tube top that was not doing a very good job of supporting her long, large breasts. She paired it with a pair of multi-color, shredded, shorts that were so tight that they revealed her underwear color, and squeezed her things onto the subway seat. She finished off her look with Birkenstocks and very long red toenails, trying not to stare at her for most of my subway ride made the time go by relatively quickly.
I arrived at the doctor’s office and was seriously under-whelmed. It was small, dreary looking and freezing cold. The receptionist was pleasant, loud talking, curly-haired, gum popping New Yorker, I would assume from Staten Island or Brooklyn. She told me that, “the docta would be with me showtly”, as I sat and waited I was grateful for my sweater. The wait wasn’t long and before I knew it I was sitting with the doctor in the examining room. He was round in shape, very down to earth, and very pleasant. He was a breath of fresh air after dealing with gloomy, doom dermatologist. I told him about my whole ordeal with the Dr. Doom Dermatologist and partially explained my whole AIDS debacle. He assured me that he would help me get to the bottom of what was causing my rashes and pain. I gave him the blood results from the dermatologist and kind of expected him to tell me right then and there what was wrong with me. Unfortunately, he informed that he would need more in-depth blood tests he wrote out an order for me to go back to the lab, I made a mental note not to go back to the one in Chelsea. He told me that he would see me in two weeks. I was somewhat disappointed that he wouldn’t be able to solve my health problem immediately, the waiting game was happening all over again. I took a deep sigh and accepted the order form. I am not a very patient person so I knew that this was not going to be easy for me, I wondered what crazy thoughts would consume my mind while I waited to get the results from this blood work. To help keep my sanity, I decided to take a sensible approach during the two-week period and read up on anything and everything I could find on autoimmune disorders. I am not sure how much of a good idea that was because it opened up another portal of information that was both very informative and very scary.
I was able to distract myself a bit from the chaos of my mystery illness when I went out of town for my cousin’s wedding. My whole family was going to be there, initially I wasn’t going to go, but my mother said that she needed to see me and wanted to take care of her baby during this difficult time. Who was I to say no? My mom felt so bad for me with all of the drama that I had been going through that she even told me to buy a dress, shoes, and get my hair done on her. Okay! I was coming off of not eating for a few weeks with the whole AIDS scare so I had lost about 9 pounds and shopping was bit more fun. Hey, you always have to look at the upside in any bad situation. I was self-conscience about wearing a sleeveless dress, at the same time I had a newfound- I really don’t care if you look me at attitude- that came and went. I guess I was pleased with myself for dropping a dress size that my short-lived confidence won out and I bought a sleeveless dress. While packing for my trip, I did pack some sweaters to cover up my arms, and by the time I took the train to Boston for the wedding my confidence had worn off. I met up with my brothers, sister, and parents for what was a surprisingly fun and comforting weekend. I needed to feel normal again and being around my very loud and loving Nigerian family took the edge off, I actually slept well at night. Maybe it was because we were staying at a hotel, I love staying at hotels.
Being the great family that they are they tried their best to comfort me and tell me that I really didn’t look bad, in fact I looked great. Oh, the power of makeup!!! The weekend ended so soon and before I knew it I was back in NYC. Not before my mother and father prayed over me, gave me cash, and told me that this whole thing would be over soon. I held onto to the words and confidence with every ounce of hope that I could muster, and I prayed that they were right.
So for two weeks I tried to occupy myself, and my mind with happy thoughts. I just continued saying to myself, “at least it’s not AIDS.” Unfortunately the rashes on my skin continued to appear, they came in a variety of forms some where large and had a deep reddish purple color, some where little red bumps that would form in groups in various spots, and other the ones that covered my hands mostly made my skin shed and blister all of it made me feel very self-conscious. I avoided handshakes by telling everyone that I had a cold; it worked for the most part. This time around I decided to go to a clinic on the upper eastside, I figured a change in location would give me a change in the results. I didn’t really look at the other people I wanted to get in and get out quickly to go home and begin my research on autoimmune diseases. I wanted to wait until after the blood tests so that I wouldn’t chicken out of getting it done after I saw the possibilities of what could be wrong with me.
So this time I went straight home got on the Internet and looked up autoimmune diseases. There were so many that I had never heard of, I learned that Wendy Williams has one and that’s why here eyes look like they are about to pop out of her head, it is called Graves’ Disease. There were so many different kinds, I quickly compiled a short list of the ones that I was pretty sure I didn’t have and would never want to have: Multiple sclerosis-obviously a very serious, degenerative disease, Lupus-I was still holding out hope, Guillian-Barre Syndrome-which just sounded awful, and Vasculitis. All of these diseases were on the top of the- hell no not me list. There were others that seemed like such a nuisance to have, in that category I put: vitiligo, psoriasis, and Sjogren Syndrome.
Reading up on the world took away a naivety that I wish I still had with respect to my body. I always took it for granted that I was for the mostly healthy. I have never had the flu. I had only been in the hospital once when I got malaria and meningitis, and only went to the doctor for annual check ups. When people would pray for good health, I never really took it as a major prayer for me, and now I see all of the things that can go wrong and when they don’t, instead of being thankful I just always took my health for granted. A few days after my health epiphany moment the doctor’s office called, my results were in and I needed to make an appointment and come in. “Can’t we just talk on the phone about my results, I wanted to say. So of course there was no available appointment that week, so first thing Monday afternoon because I am not a morning person, I made my appointment for 2pm. It would be an inspiring, yet very disappointing doctor’s appointment.
The weekend was a total bust as I anticipated my Monday afternoon doctor’s appointment. I ordered food and watched episodes of The Daily Show on DVR. I love Jon Stewart! He became my Jewish boyfriend, whom I discussed politics, the silly things that the media focuses on, important world issues, jokes, and everything in between. The show gave me comfort, a way to escape from my oppressing reality. After an exhilarating weekend with Jon and every takeout imaginable, Monday came, I woke and decided to be optimistic. I hoped that my mindset would ultimately affect the outcome of my appointment; at this point I needed something. My mother knew about the appointment and called me five times that morning to ensure that I was on time. Each phone call started with her thick and sweet Nigerian accent saying the same sentence with each phone call, “Where ah you baby?” Going nowhere if you continue to call me, I was thinking, but I knew she was worried and trying to be there for me. So I reserved the inevitable blow up for her fourth call and finally had to blurt out that her incessant calls were no longer helping and that I would call her when it was over. Being my mother she called one more time and followed her “Where ah you baby?” with “I’m sorry honey for calling again, but I couldn’t help it.” I know my mom so I just laughed and accepted that she loved me that much. I quickly ended the call with telling her to calm down and promising that I would call her, ten minutes later I headed out the door. The train was a blur and I almost ran to the doctor’s office, finally I was about to get some answers or so I thought. There was another patient, who was wrapping up his appointment and it was taking longer than anticipated. I was getting anxious in the waiting room, I even got up a few times to look down the hallway to see if the doctor’s exam room door had opened up yet. The receptionist could see my obvious anxiety and tried her best to continue to reassure me that the doctor would be out soon. She told me that I was his last patient of the day, so he would be able to give all of his time and attention to me, and my appointment. I nodded politely, but it took everything inside of me to not run into his exam and yell, “End this now, I am dying out there, we need to talk MAN!!!” As I was standing in the hallway for the fourth time, the door opened, I ran back to the waiting area to take my abandoned seat and attempted to look calm. They talked briefly in the waiting area, shook hands and finally the doctor called my name. He immediately apologized for keeping me waiting, I told him that it was no big deal, and followed him back to the exam room. I was sure that his receptionist would share my crazy antics with him when I left, and I was ok with that reality. We sat down and I know that he could see the anticipation all over me. He said, “ok let’s not wait anymore”, and he handed me the results. I read over them expecting to see in big letters YOU HAVE THIS DISEASE, but what I saw was a list of diseases. He told me that he would not be able to fully diagnose me that it was out of his scope of practice. Where have I heard that before? The sheet of paper he gave me stated that I had one of these five mixed connective tissue diseases and that a rheumatologist would have to determine which one. What the hell is a rheumatologist, and why am I wasting my time here with you if I need to be with one of those doctors, I wanted to say, but just nodded. I didn’t understand why this was so hard to diagnose, almost four months had passed since I went to the dermatologist and no definitive answers. I wanted to breakdown and start crying. He must have seen how all of the energy that was left, just escaped my body as I slumped down in my chair. He then asked if he could share a story with me about his brother, I raised an eyebrow and then obliged. He told me that he had a younger brother, who was healthy his whole life then all of a sudden one day 15 years ago woke up one morning and was covered in purplish-red rashes, similar to the ones on me one morning. He had a severe fever, chills and was very weak. The doctors took many blood tests and could not figure out what was going on, but they found that his body systems were shutting down and at that point they gave him six months to live. At this point in the story I looked at him with a, “WTF Face” and he quickly added, “my brother is still alive.” He quickly wrapped the rest of the story by telling me, after they had prepared for his brother’s funeral, and last few months of life, a few months later everything disappeared and his brother became completely healthy again. The doctors could not explain it, but as he put it “there are many things that my colleagues don’t know and, can never explain because we are human.” He continued with, “I say all of this to say, don’t lose hope and don’t think that this will not get better or at least manageable.” I appreciated his efforts to comfort me, but I still didn’t know what was wrong with me and I would not find comfort until I at least got a diagnosis. He gave me a few names to rheumatologists and made me promise that I would stay positive through the process. I don’t know how well I kept that promise.
I called the first rheumatologist on the list, he had a Park Avenue address, fancy, I thought. I decided that someone who treated the likes of the Park Avenue elite would offer superior care and resources to me, and he took my insurance; so I made the appointment. While I waited for the appointment that was going to be early the following week, I went back to the Internet to research these mixed connective tissue diseases and determine which one I would prefer having. After an extensive look at every medical website from the mayo clinic to WebMD I decided that I could live with having Sjogren’s Syndrome. They all seemed to suck in one way or the other, and since I knew that I didn’t want rheumatoid arthritis or lupus for that matter, I settled for Sjögren’s syndrome. Sjögren’s syndrome is a chronic disease in which the immune system attacks the moisture-producing glands, such as those of the eyes and mouth. The effects can range from mildly uncomfortable to debilitating. Although dry eyes and mouth are the main symptoms of Sjögren’s, many people also experience extreme fatigue and joint pain. The condition also increases the risk of lymphoma and may cause problems with the kidneys, lungs, blood vessels, and digestive system as well as nerve problems. I just hoped and prayed that if it was Sjogren, and that I would only have a mild case of dry eyes and mouth and not all of the other added symptoms they put at the end. So I know that when you think of something and focus on it, it tends to come true so that is what I decided to do with my pending diagnosis. I had decided that I had Sjogren’s syndrome, despite all of the other physical symptoms that I had that indicated that this was not true, but mind over matter, right?
For most of the week I tried to stay focused on other things, in all my efforts to stay positive my body wasn’t cooperating and the rashes almost multiplied in the short time before my rheumatologist’s appointment. I tried to ignore it as best as I could, and think Sjogren’s syndrome thoughts, I even went to the gym twice and did some Zumba. I had brunch with some friends from grad school on Sunday, and tried to forget the fact that I had a meeting with the rheumatologist in two days. Tuesday came and I was ready, I was shaking and very anxious, but I just needed answers and I wanted them now. I was hoping he could just look at me and determine what was wrong with me, but I knew that would not be the case, so I walked in with very low expectations. As I approached the doctor’s office I took note of the exterior of the building, it was in a beautiful glass building near Park Avenue and it looked like a place that usually delivered good news; I was hopeful. The waiting room was filled with older white patients and their Black or Latino caregivers. I took a deep breath when my name was finally called, and slowly made my way to the room. The nurse took my vitals asked me a few a questions and told me that the doctor would be with me shortly. I didn’t wait too long, when in walked an old, about 70, tall, lean white man with a full head of slicked back silver hair. He was probably very good looking when he was younger, my how age changes a person. Before he could start asking me questions I shoved the test results from the general practitioner into his hand and told him that I needed a blood test and that is why I was there. He was somewhat alarmed by my forwardness, but he took the paper and just nodded as he read it over. “Okay he said, I will have the nurse come in and draw some blood and I will see you back in about 2 weeks to discuss the results.” “Do you have any other questions?” he asked. Yes dammit, I thought, why does everything take 2 weeks? “Uh, yeah” I said. What can I do about these?” I said as I removed my sweater to reveal my rashes. “Yes, that does look like a lupus rash, I can refer you to a dermatologist, but I don’t want to give you anything until the blood tests confirm your diagnosis.” Oh Lord not another dermatologist, I thought. “It’s ok, I will find one myself.” I responded. The nurse that came in was a friendly, very professional middle-aged white woman who seemed too busy and consumed with clearing out her busy waiting room to really concern herself with my solemn mood. She smiled at me as she drew my blood into seven different vials and told me to contact the doctor in about 7-10 business days. I needed a break from all of this it was becoming a bit much for me, I had never had so much blood from my body in such a short period of time, little did I know that this would just become a normal occurrence in my life. I made the follow-up appointment and waited. This was it I was finally going to find out what all of this sickness was about. Since I was in the Upper Eastside I decided to visit my favorite beauty boutique and buy my feelings in high-end skin care. I really don’t remember anything that happened in those two weeks, except for three things. I did see a dermatologist, and she took a biopsy of one of the rashes on my arm, she thought it looked like lupus too, but wanted to confirm. She told me that I could just have discoid lupus, which would mostly affect my skin and hair or systemic lupus, which could also affect my skin and hair but also major organs. I didn’t know which one I wanted less. So now I was waiting on two test results to come in. I had given up on the Sjogren’s Syndrome idea after the dermatologist appointment, and had settled in the fact that I probably had lupus, I was just unsure if I had discoid or systemic. During the two weeks my hair started falling out. It first started four days before my follow-up rheumatologist appointment. I was in the shower, and while I was washing my hair, thick clumps of hair started coming out as I ran my hands through my hair. I just remember going completely numb in the shower, and then I began shaking uncontrollably and sobbing. I tried to gather all of the hair that was falling out before it fell into the drain. I just stared at the clump of hair in my hand, it was about the size of a mouse; I felt defeated. I ran my hands through my hair again and more hair came out, it just wouldn’t stop. I finally decided to stop touching my hair and quickly left the bathroom with some leave in conditioner in my hair and decided to let it air dry. I stayed in bed for the rest of the day and the next day. By the time my appointment rolled around I was in a, “I don’t give damn” mood, and just wanted to hear the results. I had a brief wait in the waiting room, and then I was ushered by the nurse, into the exam room where she took my vitals and asked me the same questions that she had two weeks before. This time I added that I felt even shittier that day, and my hair was falling out now. She nodded and told me that the doctor would be with me soon. The doctor came in and ushered me into his office to talk about my results; this couldn’t be good. The one thing I did appreciate was that he did not beat around the bush; he could probably sense my anxiety and irritation. He confirmed that I did have systemic lupus erthyathamous and that it was the reason why I had been feeling the way I had been for so many months. Right now it was mostly affecting my skin, joints, blood and hair, but he did see some kidney involvement and he wanted me to see a kidney specialist. I just sat in his plush leather guest seat, and took in the regality and brownness of his office as he spoke. I could fall asleep in this chair, I thought as he continued speaking. I had gotten my answer and I was now thinking about the comfort of my bum in his leather guest seat; I think I had lost it. He started me on a drug called plaquenil and told me to come back after I saw the nephrologist. I came back from my daydreaming, just in time to hear him ask me if I had any questions. I had a lot of questions, but I needed to go home and take all of this in and do research on the Internet again. I was hoping that this plaquenil would solve my problems, and that the kidney doctor appointment would be nothing major. I would save my questions for later. He gave me a copy of my blood results and told me to make the follow up with the front desk, and pick up my prescription. As I walked out of the office it hit me, Ok, so it is lupus, now what?