There are so many days that I feel guilty for doing things that others cannot. I see so much suffering from this disease, the degree varying from person to person. Some go into remission and appear to have “normal” lives while others have an extremely tough battle. I…
Lupus, I have a hate for you that runs through my veins. It’s a part of every fiber of my being and will be until the day I die. In one fell swoop, you turned my entire life upside-down and took everything I once thought I knew about…
If you have been keeping up with my column, you know that I live in Thailand. I am an American but moved here because of the country’s great lupus track record, plus affordable and quality healthcare. I also now have a super affordable lifestyle. My one-bedroom apartment in a…
When healthy in the past, I looked at illness as a fairly static state of being. But what has become increasingly more apparent to me over nearly two years with lupus is that life with a chronic illness is anything but static. Some symptoms of lupus come…
When the doctor told me back in 2016 that I would be battling lupus, the first question I asked him was if I was going to die. In the ’80s, I had a cousin die of lupus. They had no clue what she had until they autopsied her…
In my family, death is not a topic of taboo; we speak both incredibly openly and comfortably about the subject. By the time I was only 3 years old, my family had lost three of four grandparents, all to health-related issues. From a young age, my parents have…
I often say, “My disease is mean enough, I don’t need anyone else being mean to me.” I try my best to be a great advocate and a voice of reason when it comes to battling lupus. I listen to a lot of theories by those battling the…
I think learning how lupus can permeate every aspect of your life is one of the most frustrating and challenging aspects of dealing with the disease. Unfortunately, intimacy and our sex lives typically take a hit at some point. Maintaining a certain level of intimacy with your partner while…
I woke up to no alarm and was confused. For some reason, I still have my alarm set despite not having a job that requires specific hours or a specific location during the week. I usually turn it off and ignore it if I want to go back to…
To this day, I don’t know how to braid hair. I missed this rite of passage in middle school, because while the girls in my class were doing each other’s hair in the bathroom, I was playing handball with the boys. Fast-forward to high school, where unlike many people I…