liv.withlupus

For the rest of January, I felt fine. I was still recovering from surgery, but I was so glad my left leg finally felt normal again. It’s so difficult to decipher what is normal anymore, and just being able to walk and keep up with the girls without having to stop every five or ten minutes for a break felt refreshing. At this point, I was feeling like a million bucks. I actually thought, maybe I’ve been through the worst of it all, maybe it was just the blood clot that made me feel horrible all this time, and that now it’s treated, I am finally somewhat normal again. I felt a bit more hopeful.

I met with my primary care doctor for a follow up visit. We went over a few key items, and concerns/questions I had regarding the blood clot ordeal. One main discussion we had was around COVID. Ever since being diagnosed with lupus, I was told I would be eligible for the covid drug as I am now considered immunocompromised. However, during this appointment, I was advised that I am no longer eligible for the covid drug as I was now taking a blood thinner medication. I also cannot take any NSAIDs while taking blood thinners. Apparently, the covid drug and NSAIDs are now considered harmful to me as it can cause internal bleeding. We determined the best game plan for me now is, if I catch covid, I should make my way to the ER. Pretty great, right?

Vascular Doctor

I learned more about the blood clot that happened during this appointment. The vascular surgeon was very thorough and showed us before and after photos of the operation. I was also advised during this appointment that I should see a hematologist because I tested positive in one of the indicators that suggested I should be on another type of blood thinner. She mentioned it could be false positive as well due to the timing of the testing etc. Regardless, due to my illness and size of the blood clot I had, I need to be on blood thinners for good. I didn’t like hearing this, but I also don’t have a choice. This is the safest route for me.

Kidney Doctor

You know you’re probably too young to be at a certain clinic when doctors address you as “kiddo”.

This appointment was insightful. I learned a lot about kidney diseases, kidney function, kidney nephritis. I am happy to report after some thorough testing, my kidneys are doing okay for now. Phew.

Making Plans

I always liked to plan ahead, as far in advanced as possible. I used to make plans for things two, three years down the line. Now, I see things a little differently. I plan for things that are only weeks or at most a few months in advance. To be frank, the only things I plan for right now that are vital are my many doctor’s appointments. But really, I don’t plan for anything past the 6-month point these days.

It’s a little sad. I don’t plan for anything past 6 months not because I don’t want to but because I don’t see the point. I simply can’t because I don’t know how my illness will affect my ability to function – what if I can’t even walk properly tomorrow or worse lose the ability to?

It’s unfortunate that I have to ask these very simple questions and leave it up to that to determine what my next steps are. On the other hand, I live more in the present now. In general, I don’t put off anything to tomorrow that I can’t do today. As a wife, I try to support my husband by being a good companion and listener every day. As a mom, I try to fulfill my girls’ activity requests on the weekends as long as my body allows. As a daughter, I try to call my parents and update them on how the family is doing at least once a week instead of being radio silence for days.

All new things require practice and repetition. This new way of living is slowly becoming a habit for me.

Keeping up

It was winter time, and one of the activity the girls wanted to do was skiing. I don’t ski, but I’m glad we are able to provide them with the opportunity to learn how to ski at a young age. I never had this opportunity growing up.

Rooster is more daring, she learned how to turn on demand fairly quickly, and after two days of bunny hill, she went off with my husband to the green runs. She did so well!

Piggy is more timid, and I stayed with her on the bunny hill. I went up the magic carpet with her, and half assisted/half chased her on the way down. I was so tired and out of breath just after 2 bunny hill runs. Thankfully, Piggy was too and wanted a break.

Conversation with Piggy
Piggy: Mommy, I’m tired. Can we take a break?
Me: Are you sure you don’t want to do another run?
Piggy: If I do another run, will you give me more gummies?
Me: Eh, well, we have to save some for Rooster for when she’s done with Daddy. Why do you think I will give you more gummies if you do another run?
Piggy: Because…I will do better if there are gummies.

We all need motivation to get through each day. Even my little one understands risk/reward and realizes what exactly motivates her to do more and move forward. I’m glad she finds reasons to keep pushing. Little does she know, both her and Rooster are often my reasons to keep treading forth.