Tag: lupus awareness

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

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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

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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

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Isolation.

As of late, I’ve felt a void. I really miss my friend, Sarah. It hasn’t been the same since her passing.

I’ve been much more vocal with my own personal struggles with my chronic conditions. I think the first step is acceptance. When I was a teenager, I was so ashamed and in denial. I didn’t want anyone to know. I already felt different from my peers. It was tough trying to fit in and finding that group of friends that would support you through it all. As I got older, I found those people and to this day they still have my back. You know who you are. Thank you for all of your love, support, and affirmation through the years. Encouragement goes a long way! ❤

Sarah was a strong advocate for Lupus awareness. It’s reignited a lot inside of me to create more visibility and awareness. Many still don’t know what the condition is and what it does to a patient’s body. Especially the side effects of medication. Every patient is different. Some symptoms are shared. It really is a snowflake condition. There’s so much research being done to find that cure. But I’m hopeful. And I’ll continue to be.

I want to honor Sarah’s memory the best way that I can. I’m planning to participate in the Lupus walk this year. But it’s been tough. I miss sending her messages and checking in whenever we could. I definitely cherish all the college memories we had together. Thank you for reaching out first and most especially your friendship. I’ll never forget your kindness.

You’re truly missed, Sarah. ❤

b

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RIP Sarah. 💜

I’ve been processing so much in the last 24 hours. I’m so sad. Today was a heavy day for me, but I went about with my routine. I thought of you throughout the day.

Ultimately, I just want to say thank you. When I transferred to UC Davis, it took a lot of adjustment with upper division classes, making friends, socializing, and getting used to Davis itself. When Kengar connected us, I was grateful. I didn’t feel so isolated and I had someone to lean on about everything. Thank you for reaching out. I still remember chatting on FB Messenger and sharing our stories with each other.

I’ll remember the Lupus walks we participated in together. It was empowering to be in that shared space. Your advocacy was inspiring. The picture above was the last walk we did together before you went off to SD and then Hawaii. Social media kept us connected. Even from afar, you were a cheerleader!

You’ve impacted my life in so many ways. I’ll miss your presence, your smile, and especially your laugh. Thank you again for your friendship. You’ll truly be missed. Rest well, beautiful warrior. I love you. 💜💜💜💜💜 #LupusWarriors

Bernadette

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