liv.withlupus

“Looking at your markers, it is quite evident you have lupus, and of the aggressive type.” Medical professionals suggest stress may be a causation, but no one really knows.

Stress?

Back in 2020, when the pandemic hit, my girls (Rooster & Piggy) were 2.5 years and 9 months. Despite not fully understanding what COVID-19 was at the time, I made the decision to pull them out of daycare and quit my job to become a stay-at-home mom for a while. I also knew that I did not want to have any more children, so I wanted to cherish this baby/toddler stage while it lasted. Maternity leave in the United States is almost non-existent compared to other countries, so as unfortunate as it was to have to isolate, this timing wasn’t so bad.

It’s not without stress though. On top of being a loving mom, I also had to focus on being their playdate, teacher, cook etc. It often felt like an impossible feat. My husband also clocked crazy hours at work since he worked on a crucial product for the pandemic. I remember feeling like a single parent most days. I constantly reminded myself that I could not break down because if I did, there would be no anchor for my girls. Like many other moms out there, I pushed through.

When the COVID-19 vaccine came out in mid-2021, we felt comfortable having ourselves and the girls vaccinated and heading back to daycare. I needed to find a job to fund this cost. It was yet another thing on top of my busy stay-at-home mom schedule. But I have always enjoyed working and was excited and eager to get back to work. This motivation grew even stronger since becoming a mom. I wanted to show my girls that mommy too, can have a career, just like their daddy. I was determined to put in whatever it takes to be promoted.

And I did. I was promoted to senior in my position within the year and was also offered a promotion to another team I had applied for shortly after. I felt proud to have accomplished something for myself other than just being a mom. I rarely spend money on myself, but at the time, I thought I would talk my husband into a date and have a nice celebratory dinner. It was something that seemed impossible to coordinate though, since we have no family close to us to watch the kids, but my parents were kind enough to agree to come for a few days so we could catch a break. My parents visited, but the dinner never happened. The next few days, weeks, and months were tough to navigate.

Pain.

In April 2022, I began experiencing pain in my knees. At the time, I was biking and rowing three times a week and thought that my body was just exhausted and needed a break. I took a break, went to physical therapy, and stretched a few times a day. However, nothing helped, and things got worse. My knees were so swollen that I started losing the ability to walk normally. I could barely walk up and down each step of the staircase at home. Over the next few days, I noticed pain in my shoulders and hands too. Eventually, it got to a point where I couldn’t get out of bed myself. Every time I got up and sat down from a chair, it took so much effort and felt like I was practicing squats with weights. Something was definitely wrong.

I went into urgent care and got prescribed some steroid medication (prednisone) while waiting for the blood work results. The doctor offered hope: if the one-week prednisone medication helped and my symptoms didn’t return after I finished, I could consider this a one-off. The week went by, and being on prednisone was great! I was able to walk/run/drive/cook and perform daily tasks as normal. This was short-lived though; the week ended, and all my symptoms came back almost immediately. I then got referred to a rheumatologist, which was a three-month wait at the time. Those three months were long.

Advil became my go-to a few times a day. It helped me walk but also came with heartburn. I went back into urgent care to ask about options and got referred to a primary care doctor. He suggested I stay on 20mg of prednisone daily until the rheumatologist appointment. I was hesitant to follow these instructions, but I’m also a working mom, and I needed to be able to function normally everyday to care for my family.

First ER visit

Things felt “normal” when I was on the prednisone for the most part. Then one day, I felt as though I couldn’t take a deep breath. Yawning, sneezing, coughing, and burping became a real struggle. It bugged me a ton, and I found myself at the ER shortly after. Tests and scans indicated I had water buildup in my lungs. I was eager for a solution to make me feel normal again. “Is there anything we could do about it?” Nope.

It’s Lupus.

Fast forward to the first time I went into a rheumatologist office, it gave me the feeling this place was for people that were 50+ based on patients in the waiting area. There were posters of different types of auto-immune diseases. I recall one of them that read “Lupus, not today” advertising a drug called Benlysta. Coincidentally, the rheumatologist took one look at my lab work and told me I have lupus, and it’s of the severe type. I still had no idea what this meant, and thought I just needed to be prescribed some medication and I would get better within a few weeks. Boy, was I wrong.

The first medication I was prescribed with, I initially thought my body was tolerating. After about two weeks though, my whole body reacted with rashes. I was devastated.
I remember thinking, this is not normal. There must be a better way, a more effective way to approach this instead of being a lab rat. There isn’t. Unfortunately, with lupus, there is no cure, and at best, medication helps control your symptoms so you can live as normal of a life as possible.

Lupus means different things to different people. The wide range of symptoms and combination of these makes symptom management difficult and complicated. For me, as someone in their mid-30s, I would’ve never imagined not being able to perform normal everyday things:
-Sit up and get out of bed in the morning
-Walk independently or drive
-Prepare a meal for my family

All this has taken a big toll on my family. My husband was suddenly promoted to being a caretaker for both our daughters and me. While I used to hear the girls call for mommy frequently, I now hear them call for daddy all day long. I suppose the silver lining of this is the girls have bonded more with their dad. I have to admit, my girls have been stronger and more resilient than me through all this so far. In times where I feel sad, they would come over and offer me a hug. I started asking them questions around how they felt about my symptoms, and their replies often surprised me.

Conversation with Rooster:
Me – Do I look really horrible with all the rashes on my face and body? What do you think about all of this?
Rooster – Um, not really.
Me – I am feeling really sad.
Rooster – Walks over to me, gives me a big hug You still look like mommy! No matter what, you are still my mommy, for always, everyday.

I was crying a little inside. I realize just being present, breathing, and alive is what matters most to the girls.