I got diagnosed two years ago, and I started feeling my symptoms about six months prior (in June of 2020). Before that, I had never taken a pill in my life. All I had were stomach issues since my childhood. When I was born, I couldn’t tolerate regular formula and could only drink the soy one. Now, I think that was something that I should have checked out, because I believe the gut system has a lot to do with autoimmune diseases. However, before my diagnosis I had a relatively normal life.
One of my first symptoms was chronic UTIs (urinary tract infections). I explained to the doctors that, “I’m literally just putting on pants, and I’m getting a UTI!” My doctor said, “you have chronic UTIs.” She would prescribe antibiotics and would tell me that there was nothing they could do. During the pandemic, I then started noticing problems with my wrist not being able to move. I believed it was just minor pains from typing and getting old, but it then progressed into swollen fingers. I thought it was stress, but then I had to get my wedding ring removed by a jeweler because my fingers were so swollen.
Shortly after that, my knee joints had problems as well. After that last episode, my father – a pathologist – told me to get my immune panels checked. That was back in December 2020. When I finally got my blood test results, the doctor told me that my ANA was positive (a sign of an autoimmune disease), and that they had to check for everything at that point. At that point, I didn’t really understand that my life was about to change forever.
I was immediately referred to go see a rheumatologist. The first doctor I went to see was in February of 2021, and after numerous blood tests she diagnosed me with rheumatoid arthritis. However, she dismissed certain symptoms that I shared with her. For example, I had cuticles that were very thin and had little brown dots. Something just didn’t feel right. I couldn’t bear the idea that the doctor handed me three brochures with different medicines and told me to pick. After that, I decided to get a second opinion.
I went to the Cleveland Clinic a month later. During my visit with my second rheumatologist, I showed him my cuticles that the previous rheumatologist had dismissed, and he immediately took me to a room full of doctors, asked me to put my fingers under a tiny microscope, and right away he said “I believe you have scleroderma.”
Of course, once I got home, I went ahead and googled scleroderma and thought: My life is over. At my follow-up appointment in April, he said that I had systemic scleroderma – the version that affects the entire body.
I remember leaving the clinic feeling like somebody had stolen my soul. I didn’t know what to feel. I just felt empty inside. I felt like I was in the twilight zone. The doctor then told me that there’s not any specific treatment for this disease but that the goal was to slow down the progression. Immediately, I felt like my clock started ticking. The following month, I had millions of tests, such as testing my lung capacity, my esophagus, and everything else inside.
I asked the doctor to check if I needed to see a dermatologist, but he said there was no need. Two years later, I wish I could have started with a dermatologist right away – not because they would change the treatment, but because they have better ways to manage certain conditions of your skin.