Day 54.

What a day it’s been. When my sleep gets disturbed, it’s difficult for me to fall back asleep. So I stayed awake and I didn’t nap. Reminds me of college finals – lack of sleep and feeling sluggish.

Animal Crossing is now part of my routine. There are so many new things on the island. I even got to hang out with my cousin on his and I was able to take foreign fruits back with me. I planted them and they should be ready in a few days. Yay! It’s nice to connect with family and friends who also play.

Day 27 of the 30 day uke challenge. I can’t believe it’s been that long. I’ve made progress no matter how big or small. It’s great! Strumming, chord changes, and staying on beat is still a bit hard for me. But practice makes progress. I’ll keep going until I get it right. 😊

I had a video chat with my therapist. It was the first time. Usually we talk on the phone, but I felt comfortable enough this time around.

So much TV. We watched Wheel of Fortune, Forensic Files, The Masked Singer, and Family Feud. It was an eventful day. Now I’m crashing. I can feel the fatigue so I’m hoping I get a good night’s sleep. I’d like to tackle some cleaning tomorrow too.

Lastly, today is World PH Day. It’s been 12 years since my diagnosis. Can’t stop, won’t stop. 💜

Hope your Tuesdays were great. Take care!

Good night.

b

Day 13.

I’m feeling a bit better today. Clarity. And a nice nap helped me out. After many delays, my medication is now in my hands. Thank goodness! I’m so very grateful to my medical team for always being clutch. They really are miracle workers! Shoutout to my pharmacy too for being so patient and helpful with me when I was super upset. That happened yesterday. I already feel better after taking my regular dose. Lastly, thank you to UPS. It was tough, but y’all pulled through during these chaotic times.

I’m also super grateful to my supportive friends and family for letting me vent and checking in. Hi Bianca, Jamie, and Brea! 💕

Broad City is bringing all the laughs. The final season! I’ve got five more episodes to watch. I’ll space it out. 🙂 Gotta be productive these next few days. It doesn’t have to be big tasks. Progress is progress. I’m thinking of taking up a new hobby. Yay!

Hope all your Wednesdays went well. I’m still pretty tired. The stress these last few days have been unreal, but I made it.

Until next time. Good night!

b

Day 12.

Invalidation. That’s all I need to say right now. This day has taken an emotional toll on me. You think people have your back, but at the end of the day they don’t. “Because it isn’t cancer.” What a dumb thing to say. Ignorance at its finest and quite offensive. This isn’t the time to pin health conditions against each other. Every condition matters and we fall into the vulnerable population during this pandemic. In solidarity with all of you. ❤️

I wish I could run away, but there’s nowhere to go.

I’m mad. I’m frustrated, I’m anxious. I’m scared.

Good night.

b

LET ME THINK 31.

It’s been a while since I’ve done this. I’m writing to let go of my anxiety. I’m feeling miserable about myself. I’m trying to breathe. Trying to be rational. But my overthinking always gets the best of me. I hate it.

I’m in dire need of my heart medication. I’ve never been without it. I’m so upset. I’ve cried a bit. When I’m overwhelmed, I cry.

Holding onto hope. There’s so much going on in the world, but this medication is essential to my wellbeing. I’m scared. I’ve contacted my team, I’m in touch with the pharmacy, and I will give UPS a call in the morning.

You’re swamped. I get it. But I’m on the road to getting myself more sick if I don’t take my meds. The life of a chronic condition patient. I don’t have anything to hide. This has been my life since I was 17 and then diagnosed with my heart condition at 20. This pandemic just reemphasizes the struggles of chronic condition patients. This is our reality. Whenever this pandemic passes, our realities remain the same. Struggle and survival.

I’m going to try to sleep, but I don’t know if I can.

b

Day 11.

I haven’t been sleeping at all. I stayed awake to see if there was a delivery update for my medication. At first it said yes, out for delivery! And then an hour or two later it said it’s been delayed. Lots of conflicting information. I get that couriers are swamped, but as I’ve communicated on social media – I’m waiting for medication, not an article of clothing.

I eventually fell asleep. I ended up missing two calls regarding my package. I’m hoping it gets here by end of day. I’m completely out of my medication. I went TWO days without it so I could ration. I felt like complete crap going off of it. This is the life of a chronic condition patient during these unprecedented times. I shouldn’t have to worry about this. I’m frustrated and annoyed. I did everything on my end. So I’m pleading to pls be clutch and get it to me today.

This is why I’ve been lacking productivity. I have no energy whatsoever. I’m just anxious all the time. It’s currently 6:47pm PDT. Still hoping for good news. And this is my rant of the day. Fin.

And please follow your government’s orders. Continue to stay at home so we can flatten the curve!

Lastly, Happy 1st Birthday, Jacob! We miss you. Sending you lots of love. 🥳❤️

Be well.

b

Day 8.

Hope is still alive! I’ve been restless. Didn’t sleep well at all. Doing my best to keep my anxiety at bay.

I cleaned a bit today, but I’m planning to do more tomorrow. I’m just worried about my medicine delivery. It was originally supposed to arrive by the end of the day, but now there’s a delay. I hope it arrives tomorrow. I’ve reached out to customer service. The odd thing is that it’s already in the city. I understand the current situation at hand, but the medication is essential to my wellbeing. I don’t want to stress.

I miss my family and friends so I dedicated a post to them on my personal IG. The love is reciprocated. We’ll get through this together! 💕

Photography is keeping me sane. Not much to write about today. I’m just all up in my own feelings.

Until next time.

b

Day 1.

Today was originally an in service day for work. So until Sunday it’s like a regular weekend. But starting Monday 3/16 up until the 27th work will be closed. It could potentially be for longer, but I’m hoping and praying it isn’t.

I obviously don’t have control over the situation and the same can be said for others. I’m trying to remain positive during this turbulent time in our nation + the world. It’s definitely different from my routine.

I’m planning to work on myself, but at the top of my list is rest & recharging. I will also tackle driving. These next few days will be me time. I also fall into the immunocompromised demographic. I’ve always been good about washing my hands. Touching my face is a different story. I will miss social gatherings, but social distancing is absolutely critical. I plan to blog everyday that I’m off. That way I can remember and reflect.

Sunny has been keeping me busy. I love his films! I Fine..Thank You..Love You is the best. I can watch it forever honestly. 😊🥰

Wishing you all well. Please be safe! ❤️

b

LET ME THINK 22.

I’m still processing the passing of my friend. I knew this time would come, but it was too soon.

I miss our conversations. Being able to connect with someone who also has the same heart condition gave me comfort. I didn’t feel so alone and misunderstood. There were shared frustrations and fears. Despite that, we were able to talk about tv, makeup, and food. It was nice. From there, we connected with other individuals like us. We became a community.

Her writing was strong. And I always resonated with it. When she mentions milestones, I totally get it. Some of those are (still) unattainable for me. At times, I can’t help but feel guilty, unloved, and envious of my peers. I always ask myself, “Why did my life turn out this way?” Sometimes I just overly obsess about it to no avail. Unfortunately, I still don’t have an answer.

I’ll continue to hold out hope for a cure. It is absolutely needed. I don’t want to hear about life expectancies and limitations. You create your own future. Your thoughts are powerful. And I’ll continue to keep going. This is my reality.

This quote is all over social media: “If you get tired, learn to rest, not to quit.” I intend to do just that.

Can’t stop, won’t stop. #PHighters

b

My milestone. 


Hello!

Today is an important day for me. Ten years ago, I received life changing news. Ten years ago, I didn’t think today would come. But here I am! 🙂 I’ve had my ups and downs. To be honest, it’s been a journey. I’m so thankful for this new decade. Everything I didn’t get a chance to do in my twenties, I’m pursuing now! There’s no time to wait. 

It’s taken a lot of breakdowns, mistakes, tears, and sometimes sleepless nights, but I’m grateful for it all. My family has been with me since day one. There are a few more bumps, but I’m ready! 

Being positive has really helped. Blogging and taking photographs are my outlets when it gets tough. How am I doing with it? Hehe. 

Show gratitude every day. Your mindset creates your reality. Anything is possible! 

b

Adventure is out there! -Ellie, UP