liv.withlupus

Medication

The next few weeks and months felt like a blur. I was constantly fatigued and had little appetite. Near Halloween, the pain in my knees returned and intensified. Rooster asked if I was going to be okay to take her trick-or-treating and expressed how much she wanted me to go with her. As a mom, knowing you may not be able to do something seemingly so simple with your child, is fearful to me. I wasn’t feeling well at all, but I promised her that I would try my best to get better so that I could join her. I had to be brutally honest with her with how it might not happen.

I went to see my rheumatologist, who prescribed another prednisone burst. By now, I had already had three of these bursts. A tapering course of this steroid medication called prednisone was prescribed for me. I would start taking 40mg for the first five days, 30mg for the next five days, 20mg for the following five days, and finally 10mg for the last five days. I had become so accustomed to this tapering schedule that I knew shortly after the 20 days of this prednisone burst, I would start feeling pain again in my joints. In anticipation of this, I started planning things I wanted to do with my girls during those 20 days so that we could make some memories together as a family and feel ‘normal’.

Prednisone, at this point, still worked well for me. My joints hurt minimally, and I would be able to walk, drive, do stairs, chores etc. I also had laser focused attention. My mind would feel very wired, as though it didn’t need a break. Given I wasn’t able to carry on everyday tasks when I wasn’t on the medication, being on it made me feel superhuman.

It was good I got to go trick or treating with them.

The rheumatologist also suggested I start taking a self-injection drug called Benlysta at this point.

Benlysta made me feel super nauseous. I would self-inject every Sunday, and the following few days, I would have no appetite. I would start feeling better from Thursday onwards, and that’s when I would try to have more to eat. Eventually, I found having a piece of toast with nothing on it to be most helpful to me.

Weight loss & Hair loss

One day I woke up and decided to step on the scale. I had lost weight – just 5 pounds at that time – and I thought, ‘Well, I’ll just eat more and try to exercise on my bike more to build my muscle back.’ A month passed, and I stepped on the scale again. I had lost more weight. Fast forward to present day, and I’ve lost about 20 pounds since my diagnosis. My clothes are now very loose-fitting.

I consider myself petite but was never slim and used to want to be in my teenage years. Back then, I would see others in skinny jeans and think they looked so good. I wondered if they had a way to stay skinny even though they ate all the time; they mentioned they had a high metabolism. I was jealous these girls could fit into their skinny jeans because of their genes. Needless to say, I’m not envious of slim people anymore. I desperately want to gain my muscle weight back. I would also love to have my appetite back and be able to enjoy different types of foods.

One of the other losses I’ve experienced is hair loss. This has been a difficult one for me to cope with. I used to love taking showers and washing my hair on a daily basis. It was a time for myself and for me to relax after a long day of work and taking care of the girls – it was my alone time where I could get a peaceful 5-10 minutes to myself without being disturbed. Now though, every time I take a shower and decide to wash my hair, I’m reminded that I’m sick. The amount of hair loss from washing my hair has been significantly more than the postpartum hair loss I’ve experienced. My hair is now thinner than that of my 3-and-a-half-year-old.

Another doctor visit

I’ve had so many of these by now. I get blood drawn a week or two prior to the appointment. The appointments are usually brief. I let the doctor know what’s wrong, and he reviews the results from my labs. He let me know I had inflammation, and that lupus activity is active. This time, the labs also showed blood in my urine, which suggested my kidney function may be compromised. He referred me to a kidney doctor, and the earliest appointment available was a two-month wait. I left the clinic that day and remembered hoping my kidney function was fine. I didn’t know how much more my body could take from this illness. Along with my joint pains, it has affected my skin and lungs, and now my kidneys? We really need to find medication to keep this under control.

Conversation with Rooster on Halloween:
Me: Ok, Mommy can come with you guys for trick or treating, but I need to walk slow. Is that alright?
Rooster: Ok. Mommy, I’ll walk slow with you, I know how to do that. I can walk real slow.
Me: Thanks baby. You can also walk faster with Daddy and Piggy too.
Rooster: No, that’s ok.
Me: You sure? What if others take all the candies?
Rooster: contemplates a bit There are so many houses! They can’t take everything.

She’s right. There were plenty to go around. We got home with enough candies that lasted till Christmas. I hope this illness doesn’t take everything away from me. I would like to recall these memories with my family and the interesting conversations we have together always.