liv.withlupus

Special Treatment

At my follow-up appointment for pneumonia, my doctor wrote down his cell phone number on his business card and handed it to me. He insisted that if I had any issues or if something felt off, I should text or call him directly. You know your condition is serious when you get special treatment from your doctor.

Disneyland

I was on the last week of a tapering dose of steroids, and my knees started hurting two days prior. So in preparation for this trip, we went to a local pharmacy and got two knee braces. The morning of the flight, I woke up early from pain in my fingers and wrist. I felt nervous about the flight and the trip.

I had booked this trip quite quickly. Shortly after being discharged from the hospital, I promised the girls we would visit Disneyland once I got better. I wouldn’t say I was feeling good enough to undertake the strenuous physical aspect of the trip, but I constantly reminded myself that if I don’t try, I will forever be resting and never learn what the new limits of my body are. And so, the “vacation” started.

We arrived at the hotel, settled in, and it started raining. I recall checking the weather, and the next few days forecasted rain. Great. Of all the weeks I could’ve chosen, I chose the week with heavy rain. How lucky were we?

The following day I woke up earlier than the girls, and woke my husband up to help me suit up. I had packed 4 pairs of compression socks, 2 pairs of compression stockings, both my knee and wrist braces for this trip. Since I wasn’t feeling great, I decided to go with the maximum support. That included wearing my thigh high compression stockings with knee braces over top, and my wrist brace. We put ponchos over us and we were ready.

We were lining up to get into the park, and we were already soaked. The girls were so excited though, the rain did not ruin their moods at all. They didn’t complain about wearing ponchos, or whine about wait times. We met both Mickey and Minnie and they couldn’t be happier.

By midday, I was struggling to keep up. I was constantly lagging about three meters behind the three of them. I thought about sitting down for a long break, but the thought of getting up after resting and feeling the tiredness from my legs even more did not make me want to do that. So I just continued walking, but at a much slower pace. When we finally got back to the hotel, I quickly showered and lay down on the bed with a huge ice pack on both my knees. I did it. I was beyond exhausted, but I had two more days of this.

The next two days were nothing short of a challenge. My feet were sore and my legs were tired. To put things into perspective, I was walking less than two thousand steps a day at home, but logged over twelve thousand steps each day at the parks. I’ve never been more impressed with myself. This was most definitely a testament to how having the right mindset, regardless of the cards you’ve been dealt with, arguably matters more. I definitely had times where I questioned if I made the right call to go on this trip. The struggle to continue to walk each and every step is so distinct, I still recall the feeling. Nothing worthwhile comes easy. This is something I will always remember and keep close to heart. It is absolutely a love/hate thing though.

At the end of the day, I felt happy we did it.

Being Served

To make the trip even more worthwhile, we had planned to drive down to San Diego with the purpose of visiting a friend and the zoo there. Everyone we had spoken to who has been to the San Diego Zoo had nothing but good things to say about it. With my YOLO mindset, I was very insistent on planning this part of the trip for the girls. Both of my girls enjoy visiting zoos.

The drive allowed my tired legs to rest more somewhat. I started feeling very fatigued though, and even thought about staying back at the hotel to rest while my husband took the girls to the zoo.

The topic of renting a wheelchair for me came up. This was a big mental burden for me, and I really wanted to refuse it. Who likes to be pushed around in a wheelchair? It was the most logical and just thing to do though if I wanted to participate in this zoo trip.

I didn’t feel happy, I didn’t like being pushed around…literally. There were a lot of negatives to being in a wheelchair. For example, not being to get close to see the animals, or be next to the girls to have conversations with them when I wanted or take a normal family photo together. Piggy was super amused though and volunteered to push me around whenever the road was relatively flat. At least she was having fun.

Home sweet home

I felt so grateful to make it home in one piece. By that I mean, not needing to stop by the ER or pick up additional medication. I never loved the comfort of our home so much. Still, I was exhausted and in a lot of pain from logging all those steps from the trip. I knew if I continued to feel bad, things were bound to go south, and I would end up at the hospital again. I needed to prepare the girls for this.

Conversation with Rooster
Me: Hey, I need to talk to you, may I have your attention?
Rooster: OK, what, mommy?
Me: Well, mommy used a lot of effort and energy to go to Disneyland with you, but now my body feels a bit sick, and I may need to visit the hospital. If that happens, listen to Daddy ok?
Rooster: But why? You should just rest at home.
Me: I might need a bit more help than that, baby. How would you feel if I stayed at the hospital?
Rooster: No! I don’t want you to stay there, you need to be home. I don’t want you to die.
Me: feeling a bit anxious to talk about this subject You know, honey, everyone dies one day. But mommy’s not going to die right now, not today.

It took a while for me to comfort her, but eventually she was relieved to learn that even if I did go to the hospital, it could just be going to see special doctors and doesn’t necessarily mean my life was in danger. I, on the other hand, was a bit of a mess. I kept thinking and debating internally at what age the girls need to be for me to be okay with passing.

There’s honestly no point in thinking about this though. Some things are completely out of our control, and this is one of them. I decided I’d be better off using my energy thinking about something else.