Hello, my name is Jomayra. I’m 31 years old. My story with lupus began at the age of 25, after giving birth to my first child. I started noticing changes in my body, starting with my hands and feet. They would swell up and turn purple. My hair started falling out. I felt so weak and tired all the time. I started getting a rash on my face. I made an appointment to see the doctor and share my concerns with her and see if they could figure out what was wrong with me. My doctor at the time told me that everything was fine. I just had a baby 8 months ago, so my body was changing. She suggested I join a health club and try working out and eating better. So I started going to the gym and just felt worse.
One night, while I was watching Medical Mystery on cable, there was this lady describing all my symptoms, and she was diagnosed with lupus. I wrote it down and asked my doctor to test me for it. So she did, and the test result came back positive. Not knowing what lupus was, I started doing research on it. They started me on all this medication, and from there on, it was just countless visits to the ER with neutropenic fevers. My hands and feet swelled up so bad to the point I couldn’t walk or do anything. About two years ago, after having my second child, is when lupus really got the best of me, and I was hospitalized for four months. The lupus attacked my lungs. I had respiratory failure twice. They sedated me, and I had to go on oxygen. I was in a wheelchair and weighed 80 pounds. I had to go on chemo for about a year and lost all my hair. I also had to go to rehab to get my strength back. After that, I had to do respiratory therapy for 6 months.
The most difficult part of all this was being away from my children and not being able to hold them. Today, I am doing a lot better. I try to take things day by day and am so thankful that I have a supportive husband and family. Without them, I really don’t know how I would have made it through everything. My lungs will never be the same again, but I am grateful to be alive and here for my children. Lupus doesn’t have me, I have Lupus, and I won’t let it bring me down or stop me from doing what I want to do.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.