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]

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]

There is no doubt about it. It’s an ongoing juggling act to be chronically ill. If we aren’t juggling our energy stores, we are juggling our med schedules. And nobody can dismiss for a moment the juggling chronically ill patients and their families must do to pay for those meds. If meds are in the rare disease category, it’s a bigger juggle. I’m beginning to think I should have gone to clown school instead of college. [More]

Support is essential to help navigate the many challenges of a serious illness. Illness can bring difficult treatments, painful side effects and patchy recovery periods. Asking for and accepting help, however, is often complicated because we value our independence. [More]

I don't know about the rest of you, but I can't wait to travel again. I haven't been anywhere in more than a year now. What's worse is my husband bought us a prepaid trip in 2019 for our anniversary in 2020 that we had to postpone indefinitely. [More]