liv.withlupus

My energy was low, and my body felt light. The rashes on my face and body felt like it was eating me away. Nothing helped my appetite or lifted my mood. That night, as I was putting Rooster to sleep, she said to me: 

Rooster: Why are you always so tired, mommy? 
Me: I don’t feel great. 
Rooster: So you need to go to the hospital?  
Me: I’m not sure, but it’s a possibility. 
Rooster: But why?! Why can’t you go out with me and play with me outside anymore?! 

Rooster got visibly upset and started tearing up. I tried to comfort her. The seemingly straight forward question she asked struck me hard.  

That night, while staying wide awake thanks to the effects of the high dose of prednisone, I thought long and hard. What was really preventing me from going out with Rooster and playing with her anyway? Sure, I was struggling with my appearance, and just about every inch of my body hurts, but should I just keep hiding away and not enjoy time with my kids? I felt like my illness was constantly punishing me.  

Rooster and Piggy’s school had a day off the following week. My husband volunteered to take the day off to take care of them. He had plans to take them out to this dinosaur exhibition around lunch hour. I had debated for a long time on whether I would join them. About an hour or so before they planned to leave the house, I bit the bullet and went online to purchase a ticket. I decided I wanted to show up and be part of this little excursion. 

It was a sunny day, and I wore an uv protected long sleeve shirt, long pants, a cap, and a mask to cover my face. We got in the car, and both Rooster and Piggy were super happy I was joining. For the first bit of the exhibition, I definitely tried hard to avoid any interaction, I felt super self-cautious even though almost all my rashes were already hidden underneath my clothing and mask. I then reminded myself the main reason I was there for. I wanted to be present for my kids, in every possible way.  

I started to be more opened up, forgetting about my shortcomings from my illness, and even took some photos with them. It was a great day.  

Shifting Focus

After multiple follow ups with both rheumatology and dermatology, countless tubes of bloodwork, and a biopsy, they concluded my sudden outbreak of rashes was a lupus flare and only had to do with the disease. There was nothing particular about it, other than the severity of it. I was on a high prednisone dosage, applying topical steroids twice daily, and taking higher dosages of lupus medications as prescribed by the doctor. Days and weeks went by and things weren’t better, but I told myself I was already doing everything I could, and things take time. I began to shift my focus to what I wanted to do with my family, regardless of my appearance.  

During this time, I had many hurdles to overcome. The hurdles were really family events and gatherings that I wanted to be present for. I call them hurdles because I needed to mentally prepare myself every time I needed to get out of my house. No matter how much I wanted to be there, there was always part of me that was afraid to be seen. I did it anyway. 

Things finally started looking better seven weeks in, and after about twelve weeks, I could finally see myself in the mirror again. 

Looking back, I’m glad I was able to push myself forward. I was able to attend a cousin’s wedding, Piggy’s birthday dinner, playground and park dates with the girls, Rooster’s pre-school graduation, my husband’s auto interests. I now look back to the many photos and selfies I let myself take during those mentally grueling days, and I feel more empowered by them. As a person with chronic illness, I can also enjoy life, but only if I let it.