This year marks 5 years since I was diagnosed with Lupus Nephritis. We talked about this year often when I was first diagnosed. It was supposed to be this benchmark of when I would reevaluate some of my meds and have to start taking certain tests regularly. And I remember the dread I felt every time we talked about the 5 year mark because all I could think was “I can’t believe I’ll still be dealing with this in 5 years...and beyond.” It was a hard reality check that my life was about to change as this truly is a chronic condition.
Those days leading up to my diagnosis are still some of the scariest days of my life. The whole year prior to it I was already battling the most intense season of depression while living out of state. But after many sessions of counseling, various treatments, and the love and support of my friends and family, I was able to regain my strength and start the path to healing and recovery. It was August 2016 when I decided the best place for me to be was back home where I can start fresh. And I was ready! I was so happy to be with my family - my parents, siblings, cousins, nieces, nephews. I was so happy to be back with my best friends and live our best lives as 25/26 year olds. I was ready to make moves and do something great with this new look on life. But as the weeks went on, I was only slowing down more and more.
Looking back now, I’d say the lupus symptoms started just around the time my depression started getting worse. My stomach was upset almost round the clock, and I started having trouble keeping any food in. My hair completely covered the drain every time I showered. And I started having rashes all over my body that no doctor could explain. But it was when I moved home that the extreme fatigue hit and all those other symptoms became increasingly worse. Not only could I not keep food in, I lost all my appetite. Not only did I have rashes everywhere, but they were becoming like open wounds. I was having fevers, and I was so physically weak I could barely walk myself to the bathroom.
Finally, October 2016, we went to the ER. From there I stayed a total of 14 nights in the hospital, had countless xrays, CTs, MRIs, ultrasounds, blood transfusions, and received a spinal tap, bone marrow extract, and kidney biopsy. I cannot tell you how close to death I felt. And I think if we’re honest, many people that came into that room thought the same. It was scary. No doctor could explain what was going on. Until this one random doctor, who I’m convinced is an angel because that was the one and only time we saw her, came in, heard the same story I told every other doctor, saw all the same tests as every other doctor, but was first to propose it was lupus. It was our first sign of hope bc we were finally close to an answer! But when it was officially diagnosed after my kidney biopsy, I have to tell you, I was like “wtf is lupus??”
And well, since then it has been A LOT of learning. A lot of researching, a lot of listening to my doctors, a lot of learning what my triggers are, and a lot of growing in discipline. And to be honest, it’s also been a lot of tears. I’ve had to learn to let go of my plans and even some dreams bc of the shift lupus has brought to my life. I’ve had to say no to hang outs and trips just to rest and avoid any triggers. 5 years in and lupus has slowed my life down significantly and has changed the way I make decisions for my life, and many times that can be extremely frustrating and discouraging. But what this past year has taught me is that lupus doesn’t have to be the end of my story. Yes, living with lupus requires some adjustments, but that doesn’t have to be the end of it all. For example, the sun is a huge trigger for lupus. But instead of living in fear, I’ve learned to just be smarter about it. Constantly wear sunscreen, in and outside the house, always have a hat, wear sun protective clothes and long sleeves. I’ve also learned to be smart about my mental health. I’m convinced that my depression played a huge role in activating my first lupus flare that led to my diagnosis. I heard it said once, “if it costs you your peace, it’s too expensive.” And so that’s what I’ve been doing. Protecting my peace, protecting my mental health bc the healthier I am in that department, the healthier I am with my lupus - and my lab numbers reflect it! I used to hate doing things like this bc it feels restrictive. But now I’m learning, being smart about things to keep my lupus at bay actually allows for more freedom and ease of mind. I’m learning to peacefully coexist with lupus bc I refuse to believe this is the end.
A friend told me recently that God is not a “plan B” kind of God. He doesn’t take a situation and go “welp, now you gotta settle for this and make due with what you have.” No, Christ came that we might have life and have it to the full! And that’s what I’m leaning into. That if God allowed lupus to happen for me, He knows the adjustments that brings to my life, and I have to trust that there is still a great and beautiful life ahead of me! That lupus didn’t just happen to me and He said, “welp, sucks for you, here’s some leftovers.” No, even with all this going on He still says, “There’s more. This is not the end.” That His promise still holds true that He has a future full of hope for me. He wouldn’t just abandon me to some empty life of suffering. What this year has taught me is that instead of sulking in the reality that this is a chronic condition, I am learning to accept it, do everything I gotta do to live a healthy life to fight against lupus - eat right, exercise, sleep, avoid the sun, etc. - and in that I can still find freedom, life, and fullness. Bc this isn’t the end. Lupus is only part of my story, but there is so much more to go.
I praise God that I've been able to make it this far in my journey, and it has every bit to do with your support! You guys have carried me through these years, and I couldn't be more grateful. It humbles me every time you show up for our fundraisers. Once again, however, we are not able to have our annual wine and dine as this covid pandemic persists. And yet, we are still committed to raising funds and showing our support for all lupus warriors! This year as you consider making a donation, I’d also like to ask if you would consider asking your company to match your donation. Any little bit counts ;)
Thank you all so much, and please be assured of my prayers! Love you all!
As a thank you for your donation, we would like to gift you with homemade treats from Mare-ienda Bakery. This year, we present to you Ube-rienda! I have been using this past year to experiment with my bread recipes, and I am excited to share with you all my new ube treats! Gifts this year will be pick up only as we are not able to offer home deliveries at this time. Team Laudate will reach out to you with further information about your gift.
1 dozen homemade ube pandies
1 homemade ube halaya loaf
1 dozen homemade ube pandies with homemade ube halaya filling
1 dozen homemade ube pandies with homemade ube halaya and cheese filling
a tray of 9 homemade ube ensays with cream cheese filling
a tray of 9 homemade ube ensays homemade ube halaya filling
For more information, visit our site https://teamlaudate.com.