A Lupus Story
Last updated: May 2023
Hi, I’m 21, turning 22 this year. For almost all my life, I’ve been in pain but never knew why.
Years of fatigue
It’s like any other lupus story. I can trace symptoms back to Highschool. In Highschool, My mom would always make me get up and go to school even though I felt like death. There was nothing “really” wrong with me so it was always “come on mija your gonna be late” and late I was every single day. When I started working, as you can imagine, I would be in excruciating pain. Tylenol after Tylenol but to no relief. I graduated at 17 and had knee surgery immediately after my graduation. It took me very long to fully recover. Still 17 year old me had no idea what was to come.
Searching for answers
It wouldn’t be another 4 years until I would find out what was happening to my body. As you can imagine, I went to the doctor for every headache, pain and frazzled stomach. To no avail. I had a neurologist and a endoscopy and a colonoscopy as well. They always say the same thing. Your results look normal. It wouldn’t be until I went back to my regular doctor for a refill on my inhaler that I would begin my lupus journey. He noticed that there was chronic pain noted on my chart and asked me about it and what it was from. I told him the truth. I didn’t know what it was from. He sent me for a blood test, gave me my script, and sent me on my way. The next day I got a call from the same doctor telling me I need to see a rheumatologist asap. He gave me references and said nothing was set in stone and it could be a false positive but to still get seen. I got an appointment for the next day.
At this point, I was freaking out because not only could I have lupus, but my father was comatose at the same exact time. With everything happening at once I tried to focus on what he would want me to do so I went to see my new specialist, and there she confirmed my diagnosis and started me on Plaquenil asap. On the next visit I got started on Methotrexate. This upcoming visit will be my third-only visit. I have a long way ahead of me and none of it will be easy.
Which resource do you think is most urgently needed in the lupus community?
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