An update

I realized, after publishing my wandering thoughts about the coronavirus, that it’s been three years since I last posted on here. It only took a pandemic.

So in a nutshell: I still have narcolepsy! Also, I got married and had a kid! 

A nurse at the hospital when I had Luna asked me if my narcolepsy was “active”. I think that’s an understandable question if you don’t know anything about narcolepsy, but I still laughed. Yes, unlike volcanoes, narcolepsy is never dormant. Always active. Always erupting. The floor is always lava.

I spent about 1.5 years trying different medications, and about 2 years feeling very depressed that none of them helped me. There aren’t many medications for narcolepsy in the first place, and for me, the ones I tried had severe, unmanageable side effects. One thing that was crushing is that my very first day with the medication I used the most was just incredible. I kept saying is this how real people live?? So awake! So clear headed! I felt so good and was so excited. The memory of that day stuck with me and it was a long time before I could give up using that medication. Even though after the first two weeks it was just dreadful from side affects, and never really got better. I cried pretty hard when I finally had to shelve that particular hope and quit that med. I had expected a new lease on life. I expected to be like a person without narcolepsy. I kept trying to think myself into feeling better. A positive mindset is super important to me, but it doesn’t make a disease go away. It was very hard to accept that that would never happen. And I grieved over losing certain things, like driving abilities or cutting back on activities so that I could still work and be alert when I’m with my family. But I’m at peace with it and how it’s changed my life, and don’t feel bad about it anymore. 

A diagnosis helped me to stop feeling bad about myself for things that weren’t my fault that were caused by a disease. It helped me to understand my limitations and learn what I can and cannot do. I just have to be careful now to not use it as an excuse to get out of things I dislike doing. It comes in handy that way! I’m way less frustrated with my life now. I now know what’s related to a disease and what’s not, and I can take care of things accordingly. Changing my lifestyle has been the most helpful for me. 

Aaron and I got married in the fall of 2017. I should’ve written a post back then so I could have a better memory of it all. 

I was super stressed, I remember that much. Our wedding so simple and small, but I still stressed about making so many decisions in the planning, keeping within budget, and not hurting anyone’s feelings.

Nonetheless, stressed or not, it was a beautiful wedding. Once it got going, I loved it. And once it was over, I loved it even more. It really was beautiful and special. My dress was the most beautiful I have ever seen. I still haven’t seen a dress that I love more. I loved my flowers. The little things that didn’t go according to plan were funny and not bad. I loved the ceremony. I loved walking down the aisle to Beauty and the Beast. I loved having our family and friends there. We came home and I slept for a couple weeks. We went out to eat once during our honeymoon and I fell asleep in my plate of tacos.

I remember naively saying a few things that I thought about weddings and then being genuinely mystified by people’s shock. This makes me laugh so much now!

Some of those things:

Why do we need bridesmaids? What’s the difference between standing two feet away from me vs sitting five feet away on the front pew? 

Why do we need decorations or a reception? People have food and decorations at their own houses.

I don’t want flower-girls and ring-bearers.

I’m ordering my flowers through Yokes grocery store.

Why do I need to send invites to people I don’t know or keep in touch with? I feel like that’s basically just asking them for cash.

Is music actually necessary? Couldn’t I just hop up there with Aaron and say I do?

I’m not buying a wedding cake, I’m getting Costco cakes because I hate cake and Aaron said doughnuts are tacky.

I’m not doing a special wedding party table for the reception.

I’m not doing a guest book. I will literally never read people’s autographs.

I’m not doing a veil. I can barely see as it is.

Guys, I do love weddings. I love the decorations and the beautiful details. I love that they look like a Disney fairytale. I just never planned one for myself and when it came right down to it, I didn’t care. But we ended up having a lot of those things because it was really important to me that everyone else was happy too. Some of them were for Aaron because it was his wedding day too, and some were for our family. My friends and family were so excited. That meant a lot to me and it was 100% worth having actual wedding things at my wedding even if I couldn’t have cared less.

And I mean, look at this dress. And these flowers. And my family. They are beautiful.

As for marriage itself, I love it. I’m so grateful for it. It has been the hardest thing I’ve ever experienced. Also the best. The cliche every married person uses, but it’s so true. It’s shaped and molded me in good ways. It’s fun. It’s terrible. It’s comforting. It’s stressful. It’s loving. The first year was really hard. I was sick when we got married and got much worse during that year. We had some serious personal struggles to deal with that felt like a death blow to me sometimes. Then I had two miscarriages. We were getting used to each other in the normal newlywed ways. It was a lot all at once. I had a hard time smiling that year.

But I learned, and am still learning, one thing that I think is really beautiful about a marriage relationship: I have a choice to commit and sacrifice. This is a huge privilege and blessing. I get to decide to do the work of a marriage relationship. I get to put my husband before myself. I get to choose to love him. I get to choose to accept him for who he is, faults and all. I get to forgive him for the faults. I get to be intentional about these things. I get to do this. 

And I get to learn to take the hard things to God only and not to all of my friends.

Aaron and I joke about being each other’s emotional support animal. We do everything together and go everywhere together and get lonesome for each other when we’re apart which is rare.

Then we had Luna in 2019, right before our 2nd anniversary. I’ll do a separate post about her. She deserves her own post. And I have way too many pictures for this one.