liv.withlupus

Turkey day came and went, and December rolled around. I’m not religious, but I love the holiday season regardless – the festive lights, tree, gatherings with friends and family, what’s not to be excited about? I was still experiencing pain and trouble walking at the time even when on steroid medication, and we were still struggling to find a medication that would work for my body, but I wasn’t going to let that get in the way too much.

I promised the girls we would visit Vancouver for the week, and I did not want to disappoint them. We packed and headed to Vancouver. The first couple days were more or less fine. The girls were enjoying time with their cousins and grandparents, and we were all stuffing ourselves with gourmet Asian hawker-style foods. I even felt good enough to meet up at a friend’s place. New Years Eve came, and that’s when things started going downhill. We had a family gathering that day, and even though I felt fatigued, and it was difficult to even lift my feet to put my shoes on, I went.

The night was not enjoyable for me at all. I felt pain in my left leg, this pain was different. It felt more complex than just the normal joint pains I’ve been experiencing with lupus. Still, without fully understanding the disease or its symptoms, I thought this was just a flare and I would call my rheumatologist when I got back to the States. The following few days, I couldn’t bear any weight on my left leg and needed to be carried everywhere by my husband. NSAIDs provided some relief, but not much. On the 4th day of the New Year, I went to see my rheumatologist.

He came into my patient room, shook my hand as always, and asked to see my left leg. I lifted up my sweatpants, he took one look at it, looked up at me and said, we need to have an ultrasound immediately. Since all the clinics were booked, he suggested I go into the ER to have it checked. I recall thinking, What? so it’s not just a flare that steroid medication could fix? It was 4PM at the time, and all I could think about was, I need to get home, finish my work, make dinner, and pick up the girls from day care. My husband snapped me out of it and dropped me off at the ER.

It wasn’t my first time there, and I knew the wait would be long. After triage and seeing the initial ER doctor, things seemed to have moved relatively quickly compared to previous times I was there. This must be bad.

I was on a stretcher in the hallways of the ER for what seemed like forever. Over the next few hours, a couple of different doctors came by to ask me questions about my medical history; nurses came by to give me pain medication/fluids; lab technicians came to draw tubes after tubes of blood; radiology came by for imaging. I was also taken to ultrasound and CT scans. One of the ER doctors finally stopped to chat, pulled a chair next to my stretcher and said, “You have a severe blood clot on the left side of your body, you are not going home tonight.”

I was then told a lot of information about blood clots, and that the size of the one I had was very severe, so more testing needed to be done. Turns out, the clot started travelling up to my lungs. I was then prompted that if this was discovered any later, I could’ve had a stroke or a heart attack. It was 9PM at the time, I was shocked by the news. The worse thing? I was alone in the hallways of the ER, and I had to call my husband and girls to let them know I wasn’t able to go home and see them.

At around 11PM, I was given the green light to eat. The hospital kitchen was closed, but they gave me a food box with a turkey sandwich and apple juice. I hadn’t eaten since morning, and it was the best tasting turkey sandwich ever. I was to be admitted, but the wait for a hospital bed and room was long. Luckily, around 3 AM, a room in the ER became available and I was finally moved from the hallway. I was able to doze off a little and was woken by an attending physician, a vascular surgeon, and a few nurses in the AM. I was pretty drugged out and exhausted, but we needed to figure out a plan to treat the clot. We decided surgery was appropriate.

I stayed at the hospital for 4 nights, ended up being discharged for a day, and went back for surgery the day after. Due to different protocols, hospital visits were prohibited for 18 and under. I missed my girls a lot but also had some valuable time and space.

Reflecting

I had a lot of “time” while staying at the hospital. Sure, I was prescribed a few medications that made me fatigue and nauseous, constantly disturbed by medical professionals for either vital check, blood draws, questions etc., but I found myself having a lot of time to think.

To say a lot went through my mind is a understatement at best. Afterall, I considered myself lucky to be alive and not have had a stroke. There are so many missed opportunities and decisions throughout the years I wish I could’ve grasp onto. Ultimately, the one question that came up was, How should I live everyday?

The Daily Grind

I never really gave much thought to this. I never had the time or luxury to think about the how. Ever since kids, my husband and I were always just proactively adapting to anything that came forth.

Every day was already packed and busy as is. The girls would wake at 6ish-7AM, and so would I. My husband would get the girls ready while I head to the kitchen to prepare breakfast and packed their lunches. He drops them off at school, and the work from home day starts. I would prepare dinner during my lunch break. Around 5:30PM, he would head out to pick the girls up, and I would prepare a snack for them. The girls come home, have their snack, get bathed, and we have dinner just after 6:30PM. The girls play after they finish their food, and we have clean-up time close to 8PM, watch 15 minutes or so of TV, then onto bedtime routine. Lights out is at 9PM. This routine works well for us, so why change it?

I realize I didn’t want to change it. In fact, the more I thought about it, the more proud I felt of our system and routine. We really came a long way from knowing nothing and struggling with everything as parents, to now being fully comfortable in our routine. The “how” for me is more around being present. I was determined to be more present with my family, and having meaningful conversations with them, and saying yes to playtime with the girls even when things get tough for me.

A winning Mindset

Staying level headed and positive through all this craziness was, and still is something I am trying to master.

I always admired athletes – how they have the will to always keep going. During the pandemic, I started watching Drive to Survive on Netflix. I was so impressed with each driver’s story, and their will to keep going. I do have a favorite driver, and one of his most used line has got to be “We’ll keep pushing.”

I was never really athletic and was never chosen to play any sports competitively. But I always tried everything. Someone once told me “You miss 100% of the shots you never take.” I live by that.

I find having a few quotes and reminding myself that anything is possible is helpful.

Investing in Family First

The topic of investing has always been a top of mind for me. I did study economics in college, and have worked in banking/investments my whole career so far. Since I started working full time, I never liked spending money on unnecessary things. I always packed a lunch whenever possible, and would only allow myself to buy lunch/dinner on pay days. I like the idea of investing and compounding.

I’m not going to pretend having money and savings isn’t important. It most definitely is. But it was also during this time, that I truly understood it isn’t everything. I think I really experienced what people want you to realize when they use the phrase, “Life is Short.”

If you have purchasing power, but do not have the luxury of time or health to enjoy it, why does it even matter?

I made a decision to invest in the family’s individual hobbies and interests this year. Exchanging this tool, called money, for different experiences together is worth it for me. Seeing all three of them happy means the world to me.

Life is strange, and super unpredictable. In my case of lupus, every day can feel drastically different from another depending on my symptoms. But I hang on, and try a little harder at life daily. When I make the conscious decision to keep trying, more often than not, I find myself gaining something positive from it all. And conversations like the below keeps me going…

Conversation with Piggy
Me: Mommy feels sick and might be a bit slow today, but let’s make lunch together.
Piggy: Ok mommy I’ll help you.
Me: Thank you baby. You love this food, right? Do you want to be a chef when you grow up?
Piggy: thinks for a minute What’s that?
Me: A chef is someone that prepares food for other people.
Piggy: Oh. No, I want to be a doctor so I can save mommy.

I would’ve never expected a 3.5 year old to be so empathetic. Kids really are wonderful monsters.