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I Have Lupus

The Beginning of a New Journey

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I Have Lupus
Wallpaper Cave

One morning I woke up with swelling and pain in my fingers on both of my hands. I thought it was nothing. I thought that maybe I had slept on my hands overnight or was writing too much - I'm a student, what can I do? But then over the next few weeks, my symptoms worsened and spread to all of my joints. I kept going back to the ER because the swelling and pain was so bad; it was debilitating. I couldn't brush my teeth, get out of bed, wash my hair, or walk to class on most days.

I was scared because I didn't know what was happening to my body. Some of the health professionals I saw thought that it was a virus and that my symptoms would resolve in a few weeks and others thought that I might have Rheumatoid Arthritis.

Then my mom scheduled an appointment with a rheumatologist who has an incredible bedside manner. He did tests and found out that I tested positive for parvovirus B19, Chikungunya virus, and lupus. He said that this meant that I have two viruses and that the lupus test might have been a false positive so we were going to run tests again. At the next appointment, he said that I no longer have parvovirus but that I still have positive results for Chikungunya and lupus. It was official. On Monday, March 20, I was officially diagnosed with lupus and we started treatment for it.

Before all of this began, it was my dream to one day become a surgeon. I want to gain the skills to physically be able to fix or somewhat alleviate someone's pain or illness. I love working with my hands and I want to be there for my patients on Saturdays at 2am in the OR. I want to feel the exhaustion of serving others because that is what I believe my mission in life is. I think God wants me to serve others through providing healthcare. I mean, to me, serving others is the meaning of life. But then there were so many days when I couldn't make a fist, pick up anything over 3 lbs, or even open a bottle, and I thought that all of my dreams would be thrown away.

But then my rheumatologist told me that I shouldn't let this stop me from pursuing my dreams and that I absolutely can still become a surgeon. I think that I thought that I couldn't become a physician because I had not had a "good day" before starting treatment. I just had lots of swelling, muscle pains, joint pains, fatigue, and trouble breathing because I have a pleural effusion. I did not know that I can go back to having a lot less pain and that one day I can be independent again. Right now, I still have pain and have to rely on my support system, mainly my mom, to help me do things and that's one of the challenges of having lupus.

I hate not being independent and having to ask my mom for help because I'm 22 years old. I'm an adult. My mom shouldn't have to help me out of bed in the morning, get my pills, or rub my muscles at the end of the day. But that's where we are at right now. This is just the beginning and it's rough but it's not as bad as before when I wasn't taking medication.

One thing about just being diagnosed with lupus is that my whole life is changing right now. Now, I have to make adjustments to my life because of my body. I want to write this because I know everyone goes through something differently. Some people prefer to not tell anyone, others rely on God, and others don't. For me, I like to keep it real. When people ask me everyday how I feel, I don't want to say "good" just for the sake of social norms or to keep face and not make the conversation go south. If I'm in pain, I will tell you. If I'm having a bad day, I want to be able to say that I'm having a bad day and not feel guilty about it like even though I'm in pain, I'm supposed to put on this brave face for others. No. This is me and my body and I don't feel obligated to be anything for anyone. But I also have to keep a positive attitude- not for others but for myself. Because if I get sad or angry everyday because I can't go running or I have to quit this club or I feel exhausted all the time, then I will rob myself of my own happiness. And let's get one thing straight: I have lupus; lupus does not have me.

When getting diagnosed, I thought about if not finishing this semester of school would be a good idea. My family is really concerned and thought maybe I should just not finish school and that I should go home and be with my family. Maybe going to school right now would be bad for my health because it asks a lot of me- from walking around campus to not sleeping enough to study to sitting down too much when studying. I still have the same stresses about essays, tests, and deadlines- just now with lupus.

But I can't do that. I can't take all of the hard work I have put into getting into college and staying in college away. I am a first generation student. My Momo (grandma) went up to the 3rd grade and my Popo (grandpa) went up to the 4th grade. My parents both graduated high school and I made a decision and promise to myself to go to university and then medical school to one day become a physician to serve others and my family. I'm just not a quitter. It's not the blood that runs through my veins. The blood that runs through my veins is the same from my Popo who came to the US after he had been abandoned and orphaned by his father. He came to the US from Mexico not knowing the language, having a job, a place to live, or any family or people he knew. Regardless, he came to start a new life and give better opportunities to his children. He and my Momo raised my mom and her brothers and sisters. He raised my mom to be as strong as him. My mom is an incredibly strong, brilliant, and determined woman. There is nothing she can't do. Even on my worst days when I couldn't bathe myself and was so ashamed and angry and confused and sad, my mom was there for me and she helped me get through it. The people who are there for you on your worst days are the real people who truly love you unconditionally.

So if my Popo can come to a country where he doesn't have a job, speak the language, or know anyone - all without being raised by parents - then surely I can still finish school and become a surgeon while having lupus. I will not let this change my dreams in a negative way. Having lupus, however, has had one positive impact on my dreams by inspiring me to pursue lupus related research. It is something that I am still working on but hopefully I will be doing this in the nearby future. I have a milder version of lupus so I most definitely don't have it as bad as other lupus patients with more moderate or severe types of lupus but I know that nowadays, most lupus patients have very manageable lupus. My rheumatologist said that within the past 10-20 years, lupus patient outcomes have dramatically increased in better outcomes. This was very encouraging for me to hear because I was worried I would be in severe pain everyday.


But right now, I'd like to say a special message to my mom:

To the woman who has dropped her life to take care of me, thank you. Thank you for waking me up at 4 in the morning to give me pain pills so I wake up with less pain later. Thank you for rubbing my muscle knots so much that your fingers hurt. Thank you for blow drying my hair when I couldn't hold it myself. Thank you for holding me while I broke down because I couldn't zip up my pants. Thank you for buying me new shoes because my swollen feet couldn't fit in my old ones. Thank you for driving from Lytle to Austin multiple times a week. Thank you for getting me a new, lighter laptop so that I can take notes in class when my hands are swollen. Thank you for getting me a pillow to sit on when my pelvis hurts. Thank you for caressing my face when there wasn't anything more you could do to relieve the pain. Thank you so much for never leaving my side because you worry about me. And thank you so much for being my mom and doing anything and everything for me. I wouldn't be able to go through this without you.


Now my life is changing. I have to take breaks in the middle of the day - if I can - because I get really tired more easily and more often. I try to walk around as little as necessary to not get out of breath. I try to sit on soft chairs when I study, take study breaks to stretch my knees or hips, avoid stairs, avoid being out in the sun, and be more conscious of germs because I'm immunocompromised. But no matter what, I feel very blessed to have my mom, my family, and my friends by my side helping me through this. I especially feel very blessed and grateful to those people who have been praying for me. It warms my heart to know that even people who don't know me are taking the time to pray for me. I can feel your love over me when I have little pain and I want to say thank you so much for your love, thoughts, and kind wishes and prayers.

This is just the beginning of my journey. There might be really bad days ahead but I'm going to cherish the good days that lie ahead too because I could have it so much worse so I'm thanking God that I'm okay and that I have people who love and support me like my incredible mom.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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