I don’t follow celebrity gossip, but headlines splash across my screen all the time so I’m somewhat in-the-know, and I’ve noticed an uptick in reports of celebrities being diagnosed with chronic diseases. Have you noticed it too? I don’t pay much attention to the reports, mostly because nearly half of the American population has some sort of chronic disease, and 25 to 30 million have a rare one. In other words, lots of people struggle with some sort of disease. Why should I pay attention when celebrities have one?

I usually just keep scrolling because, perhaps unfairly, I usually assume celebrities are out to snag another piece of the limelight with their news. But last December when Celine Dion [More]

My daughter plopped down on the couch after her fifth-grade promotion party and said, "You owe me."
"For what?" I asked.
"There were super fancy cookies at the party today, but my teacher said I couldn't eat them because of my food allergies."
Drat.
"Didn't they serve something different for you?" I asked. She said they also served popsicles, and everyone was allowed to eat as many as they wanted — but she doesn't like popsicles.
Double drat.
The look on her face reminded me of the day she graduated from preschool: Another mom brought in cute little cupcakes decorated with a graduation cap made from a peanut butter cup. My girl couldn't have those either due to her food allergies, so her teacher gave her a handful of gummy bears instead. [More]

A few months ago, my hair stylist asked me if I was dating anyone. I've been single for the last five years because I've found, like many of you, dating with a chronic illness is no easy task. I was upfront in my dating app profiles about being disabled due to multiple chronic illnesses. It turns out having a complex medical history is not seen as an attractive quality among men searching for a mate. Also, it goes without saying that having a stockpile of pharmaceuticals in my house made me very cautious about bringing anyone new into my life. I certainly didn't advertise to the single dating pool that I suffer from chronic pain. According to the current statistics from the National Center for Drug Abuse, 22 percent of males and 17 percent of females used illegal drugs or misused prescription drugs within the last year. So, the risk of attracting a person with the worst of intentions is real when chronically ill. [More]

I really don’t like spending my money on things I don’t use (do you?), so I cancelled my gym membership. Back when time and money was my own, spending them both at the gym was easy. But after getting married and starting a family, and especially now that I work full time and juggle older kids with expensive activities and crazy schedules, I am busier than ever, and time and money are not my own and are both stretched very thin. It wasn’t an easy decision. I know how important exercise is for good health, and moving my body consistently is a great stress reliever that helps me keep my autoimmune disease in check. [More]

Imagine this: It’s Friday night after a brutally busy week at work, you’re battling a flare-up of your autoimmune disease and you’re completely wiped out. You just pulled on a pair of sweats and are toying with ordering take out and eating it in bed when your phone beeps to remind you that a new friend’s informal little birthday bash starts in an hour. What would you do? [More]

Kids often surprise us parents, but we don't often think about them teaching us a life lesson. In fact, as parents, we often delude ourselves into thinking we are the smart ones. But as a parent who was thoroughly schooled by her teenage daughter, let me tell you, we can learn from our kids. [More]

When starting the home training process for subcutaneous immune globulin (SCIG) administration, the nursing service is very clear that patients should plan on administering their weekly SCIG when someone is home with them in case of a reaction. This is a doable plan for those who are married or have others who live with them. But in my case, I live alone. However, I wasn’t going to allow the fact that I live alone stop me from transitioning to SCIG, so I decided to take advantage of an interest-free payment option from my wireless carrier and invest in an Apple watch. [More]

Do you remember navigating those fun houses with mazes of glass hallways and mirrors at the state fairs of our youth? When I think about the 12 years it took to get my rare disease diagnosis, it reminds me of those fun houses — only it was not so fun. [More]