Hi, I am a 21 year old girl living with lupus. It all started four years ago when I started my university studies. I would get a really bad headache that wouldn’t go away with the normal “pain killers.” In 2011, I woke up to a stabbing pain in my chest, I couldn’t walk or bend down. I went to the campus clinic where they put me on oxygen for about two hours. I was okay after that until the beginning of this year (2013).
I developed a very itchy reddish rash on my breasts, it later spread to my stomach and back. I went to a lot of doctors and hospitals to check it out. They did tests and gave me medications that still didn’t work. They suspected it was allergies and they even suggested I buy an allergy bracelet, but the tests came back negative. I then started developing pain and inflammations in every joint in my body. I went to the hospital and they said I was too young to have arthritis, so it would probably go away with time. It wasn’t until June that things got pretty serious. The rash had spread to the bridge of my nose and my joint pain had worsened. I was also having mental problems, I couldn’t write two of my exams.
After that I was referred to another hospital. My joints were so bad to the point that I could barely walk. They did a lot of tests and my results showed that I has a high rheumatoid factor that suggested I have rheumatoid arthritis. I then went to a different doctor who looked at my hands and said I have no protruding bones and I was too young so I probably had juvenile arthritis or something called SLE, so they did the tests again. Later I went there to collect my results, and all my tests for ANA and stuff like that came back positive. She then did my x-rays and said there is something wrong with my chest x-rays. She then sent me to ultrasound where they found a fluid surrounding my heart. They also said I have lumps in my abdomen and they think my kidneys have a problem.
They took a 24 hour urine sample and told me my protein was too high. I was then sent to a rheumatologist who saw the butterfly rash and diagnosed me with SLE lupus and put me on a treatment. They also told me to avoid the sun and use sunscreen. I also went to a dermatologist who said my skin cells are dead so there isn’t much they can do. They also did tests for rheumatoid arthritis. After a week of starting treatment I’ve developed a fever where I sweat and my sheets turn yellowish. I have also developed throat infections, my joints have worsened, I have breathing problems, conjunctive dysfunction, memory loss, hair loss, breathing problems, can’t control my urinating depression, mood swings, weight loss , and can’t cope at school. I have decreased the workload and my lecturers have suggested I take a break, but I won’t let this disease rule me.
It’s pretty hard having no one to take care of me since I am away from home. As I am writing this story, I am lying down in my bed because today I woke up with green veins all over my body and can’t walk. Lupus is an awful disease. It has changed my life and everyday is a struggle. Next week I’m going back to my rheumatologist. Hopefully I will get a better medication since this one makes me worse. I continue to fight like a girl through support of my family and friends, but I would like to join some support groups. Thank you for reading my story, keep fighting.
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.