Facing My Covid Fear and Moving Forward

"I cannot walk out of the house this sick." Though fully vaccinated and being personally vigilant about COVID precautions in my home, I had a single weak link in my tight little bubble. They were informed that each of my doctors stated the same thing. My extremely aggressive lupus disease activity would probably make the vaccine less effective. However, the vaccine should provide enough protection to keep me off a ventilator. A single individual who exposed me to this Omicron variant believed it was mild and thought that because they were OK while they had it, I should be too. It wasn't purposeful. They didn't mean to hurt me. The person was just passively selfish and ignorantly disrespectful of my personal need for safety and trust. I was left feeling a bit betrayed and hurt while facing my fear of leaving my children in this life alone.

Lupus and COVID

None of that changes how awful I felt on a Saturday night. I didn't want to go to the hospital because I knew what it was. It was COVID. My head burned, and my body shivered violently against the chills of the rapidly rising fever. I wrestled with thoughts of dying while looking for my overnight bag. Each heavy step I took was painful, my chest ached, and my breath was rapid and quite ragged. I packed slowly, going over each item I would need. I called my family and made plans to look in on the kids for me. Tears fought against my eyelids as I evaluated if I needed to pack some of my more costly medications and questioned if I packed enough underwear. I battled against my desire to be OK and look at the truth of my present condition. Looking around, I tried to memorize everything in its place.

Preparing my kids for my hospital stay

I could hear the younger kids moving around downstairs and the older ones anxiously preparing for movies. They all just wanted to watch movies eat popcorn, and drink hot chocolate like normal. I had been sick since the week before with 2 negative rapid tests, and everyone else in the house continued to test negative. We had already been carefully distant for 1 week and just wanted it all to be over by now but it wasn't. Our family is very close, so everyone fully understands the implications of lupus and infections. So, it should not have been a surprise when I finally came down the stairs all of the kids immediately appeared in the foyer.

I could see it in their eyes even before a word was spoken. My young adults spoke first: "Mommy, are you going to the hospital?" "Yes, my love, I need to go so I can get the right medications and get better," I said. I spoke with as much hope as I could muster. I was struggling to breathe but even as I said the words, I knew what they were thinking. Choosing my words carefully, I tried to reassure them that it should only take a few days. Truthfully, we all knew that when I left there was no way to tell if I would ever cross the threshold of my home ever again. I promised to call them with updates and gave all of my normal stay-in-the-house instructions. It would have been wonderful to hold them and kiss their faces However, I turned away and with weak shuffling steps walk through the door and blew them shaky kisses from the car door. Finally, I let the tears fall as I pulled out of the driveway and turned toward the main road.

Facing my COVID and lupus fears

Pulling into the parking lot, I found a spot relatively close to the emergency department door. After getting my overnight bag and my medical binder out of the car, I placed them on the seat of my walker and began the slow shuffle toward the door. Just as I got near the door, my binder fell off the walker. A guard hurried to help but I quickly yelled and waved him off, "Stay away! I have COVID!" I suddenly had this awareness that I felt like a biblical leper, wanting to wear a sign and yell 'unclean.' Fearing the spread, I didn't want anyone near me. I didn't want anyone else to become sick because of me.

I'm a nurse and this was the emergency department where I started my career. So, after registering, I found a seat off in the corner and prepared to wait patiently. I was trying to comfort myself with a saying ER nurses love, "If you're waiting, it means you're not dying." Leaning heavily against the seat, I got settled in and waited for about 30 minutes. I was brought into a triage room for an assessment and triage ranking. The nurse assigned me serious condition level care, and I took comfort that I wasn't critical. It seems like a silly mind trick but it is what I held on to.

Not business as usual

I began to head back out to the waiting area when the hospital transporter and a nurse appeared. Immediately, I was placed in a wheelchair for a chest X-ray while the nurse took my walker and my bag to my ER patient room. After my X-ray, I was brought to my new room the doctor and the nurse quickly followed me. My nurse connected me to the heart monitor, turned off the screen, pulled back the curtain back a little so that she could see me from outside of the room, and then she kind of hovered near the door.

The doctor asked her questions and ordered tests then I was quickly sent for a chest CT scan after the doctor left. It felt like a lot of movement and I was wearing out Exhausted, I tried to rest a little when I was returned to my room. I tried to nap but seemed that every time I opened my eyes, my nurse or the nurse tech was near the door looking at me. The fear I'd carried from home was becoming thicker in my mouth. I am acutely aware of how nurses watch patients that make them nervous.

COVID was worse than I thought

It wasn't until I needed to use the bathroom that I found out what was happening. Still not fully aware of what was happening, I sat at the edge of the bed, steadied myself, and stood with my walker. Lights and alarms began going off everywhere. My nurse and the tech were in my room in seconds. Suddenly my chest felt tight and it was hard to breathe. My heart was pounding at a rate so fast that my blood did not actually have time to move through the heart effectively. The room was spinning and my legs became worthless. They got me back in bed, gave me high-flow oxygen, and had me lay in the recovery position until I was stabilized.

Soon, I noticed the doctor was sitting in a chair at the foot of my bed. Carefully, she told me I had Covid pneumonia and I needed to stay in the hospital. She was kind and compassionate but knowing that I was a nurse, she plainly explained that I would probably not have a good outcome if I had waited much longer and she affirmed my decision to come in when I did. It was crystal clear that she was very worried that I may not survive this.

My hospital stay with COVID

I was fully admitted to the hospital within 90 minutes of arrival to the emergency department. In everyday terms, that is an insanely fast pace. Most admissions take between 4 to 6 hours. Rapid hospital admissions generally only happen with things like strokes or heart attacks. It means that the care team was concerned that I was dying. The staff worked hard to stay professional and keep me calm so I would not have any further complications. This has been one of the scariest times in my life. I was in the hospital for 2 weeks already and I still was not sure when I was going to get home.

The care teams of many doctors, nurses, and respiratory therapists were all amazing. I make sure to thank them for everything and pray for them when I can. I know the work they do is difficult, especially now. They are working long hard hours with very sick patients who are sometimes unkind. I decided that despite my circumstances, I wanted to be a light for them as they work to keep me from dying. So, I focused on just being nice. I kept my room clean and take care of as many of my own needs as I could. I never asked them to do anything I can do for myself. This isn't a day spa – it's a hospital. It's not their job to wait on my hand and foot. It's their job to do their best to keep me alive.

Moving forward with life and lupus

Catching Covid while living with lupus has triggered so many new problems that my family and I are going to have to modify life again but that's OK. Why? Because I'm still here. We may have to find a new home and we may order more specialized mobility and assistive equipment so that I can get back to being a mom again. It may look different but I'm still here to live a full and fulfilling life with my family.

Strangely, it's given us the opportunity to be better. Our nighty Zoom sessions were lively and fun; they told me all kinds of new and exciting things. They shared their hopes, dreams, and fears with me. They called throughout the day with little check-ins and video game fails. We started planning more things that make us family before I got home and they have written down plans. That's how this journey is. It really is what you make it We chose to move from fear to faith to grow. My scariest day just became my blessing.

This is my lupie journey. I'm glad I'm still on it!

Much Love,
Cay