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.
I had given up on the Sjogren’s Syndrome idea after the dermatologist appointment, and had settled on the fact that I probably had lupus, I was just unsure if I had discoid or systemic. During the next 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 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 to myself as he continued speaking. I had gotten my answer and I was now thinking about the comfort of my bum in his leather chair and what he would do if I just fell asleep in it; 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?