December 15, 2014 was a day that I was officially diagnosed with Undifferentiated Connective Tissue Disorder, something I had never heard of before. My internet inquiries had failed me. I was expecting “Lupus” or “Rheumatoid Arthritis” to be the official word, but no, I was so confused as to what UCTD was and why I was given a “partial” diagnosis instead of something more concrete. Essentially, UCTD is the overlap disease to others, such as Rheumatoid Arthritis, Scleroderma, Systemic Lupus Erythematosis and Sjogren’s Syndrome. I think I walked around in a fog for another year or so before it really hit that UCTD was in fact, a diagnosis in itself. For some reason, I cannot win the lottery, but I can “win” a rare diagnosis like a boss!
I had seen a rheumatologist for a diagnosis about 10 years after my first symptoms had bothered me…soreness in my knees that would wax and wane. I had initially mentioned it to my OB/GYN during a routine appointment and it was brushed off…not even discussed further. Over the next several years, I would bring up knee pain and thinning hair at appointments, but again, it really didn’t get much attention. It didn’t help that I would see a different doctor each time. Little did I know that I had a ticking time bomb inside of me just waiting to explode.
Back in October 2014, I was in school full-time, studying medical billing and coding so that I could jump-start a career in the medical field. My intention was to get back to school after being a stay-at-home mom for 14 years, raising 3 children while my husband worked in law enforcement, which was particularly demanding. I was under a lot of stress…being a full-time wife and mother, A-honor roll student and homemaker…running the household was running me down. I didn’t feel well. I noticed aches and pains, low-grade fevers and exhaustion. It honestly felt like I was coming down with flu and it just never really took hold because I would bounce back after a few days. Obviously, I was a good actress, hiding my pain and misery from everyone…to all except my husband and children. They could see that something was amiss. Again, my husband urged me to see a doctor about my symptoms but I insisted that all I needed was exercise and a better diet. I had ballooned to 180 lbs, which was like pregnancy weight on my small, 5’4” frame. My blood pressure was up, too…usually at 140/90 when we had blood pressure checks at school. I laughed…I shrugged it off. Inside, though, I was really scared. The day that I could no longer walk upright, shuffling my feet along the floor, achy from head to toe, I mentally gave in and decided that I might be on death’s door. I certainly felt like I had one foot in the grave! It was a pitiful breaking point for me but with all history, hindsight is 20/20. The next day, I contacted my OB/GYN via inbox and asked if I should be seen or if I needed a blood test. I was greeted with a quick response asking me to call for an appointment, so I did. I was scheduled (unknowingly) during what is known as a flare: an uptick in disease activity usually causing extreme pain and misery. My OB/GYN examined me days later and ordered some tests, including an ANA titer. She explained that if I were to get a positive result, I would need an immediate referral to a specialist. I had the blood draw that very morning and the next day, I received a call from my OB/GYN. (It’s never good news when the doctor calls you directly!) In a very serious tone, she told me that I had a high positive ANA test with a specked titer result, indicating some sort of autoimmune disorder and that she was sorry to have to give me that news. I remember brushing over the result and asking questions about something unrelated and my doctor stopped me with, “I am referring you to a rheumatologist STAT.” So, within 3 days, I was sitting in a paper gown, shivering on the exam table of the rheumatologist’s office uncertain that what I was about to hear would change my life forever.