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Where Are the Manuals for Life?

People tease about how there are no manuals for rearing kids. Well, there is no manual on how to navigate an illness like lupus, either. Everyone is simply winging it and hoping they are making the right decisions. It seems lupus is always delivering something new, with no instructions…

Throwing Myself off the Edge with Lupus

Lupus is my greatest motivator and most consistent catalyst for change. Its ability to uproot my life at any time has the potential to be devastating. But with the knowledge that all aspects of my life are temporary comes the courage to live in the moment. I’ve had four trips…

When Healthcare Professionals Truly Care

A routine visit with my primary care doctor turned into the biggest reality check of my life. It led to a two-week hospital stay followed by a move to a 24-hour rehabilitation center where my weak immune system required full isolation. Life seems to build up armor before the battle.

Goal Setting Is Different with Lupus, and That’s OK

I write this in the middle of nowhere, sitting in a camp chair next to a mountain. Over a year ago, my partner, Jordan, and I set out plans to tour the southern Australian state of Tasmania. And last Monday, hours of planning and months of preparation finally came…

Staying Sane Through the Insanity

I sit here on day 11 of my first hospital stay of 2020. I’ve learned that pharmaceutical companies test how wide your esophagus will open to accommodate pills that would make a horse gag. I am doing all I can to remain sane, but few things make you lose track…

I’m Living on Borrowed Time, but I’m Still Here

Lupus often takes years to diagnose. By the time doctors work it out, the disease has usually been active in the body for long enough to cause significant and sometimes irreparable damage. At the time of my diagnosis four years ago, I was an unusual and lucky case. Though…

I’m Too Tired to Share My Reality

I wish there were a way to take screenshots of the significant moments of my journey with lupus. I wish there were a way to collate those moments, and the feelings that came with them, and turn them into a USB download. I wish that when I started to explain…

Pain and Paranoia Are Part of the Lupus Life

Picture it: It’s 2016, and life was good. I had hair. And then all of this unexplained pain ascended onto my body. I remember it like it was yesterday. Once doctors declared what tortured me, I signed up for pretty much every Facebook group with the word lupus in it.

Lupus Lessons: What Currencies Run Your Life?

Lupus is the giver of many lessons, and one of the most important lessons it taught me was how to value the things in my life. Since I was a child, my dad has always told me that time is the most valuable gift that life offers us. But…

Have I Given Up? The Search for Joy in My Battle

I don’t make resolutions. It seems that now they have been replaced with mantras and buzzwords. However, my daughter asked me on New Year’s Day if I had something that could give me life guidance this year. I told her that instead of constantly trying to find ways to monetize…