Sometimes when I’m sitting in my recliner thinking about the meaning of life, I find myself fantasizing about how my funeral will go. In my mind’s eye, it’s going to be a great party, with vases of sunflowers everywhere, plenty of my special…
Burnout is often used to describe what can happen to those living with constant stress, resulting in complete physical, emotional, and spiritual exhaustion. A person can become chronically anxious, fatigued, angry, depressed, detached, and cynical. Interestingly, I notice that I feel all of…
I had to travel to another part of the country last week. The outing was unplanned, but I’m never one to turn down a road trip if the opportunity arises. I packed my car with my medications, and accompanied by pleas from my husband to drive…
The chronically unwell face plenty of daily challenges, some big and some small. But my latest battle was brought to my attention by binge-watching a TV series. I am a huge “Grace and Frankie” fan and have suddenly found my life much more interesting…
It’s the middle of summer here in New Zealand. Today the temperature reached 91 degrees Fahrenheit — we Kiwis consider that pretty hot for Down Under.  During the summer months, Christchurch puts on many outdoor events, and Max and I decided it would…
I’m going to fess up: sometimes I Google my symptoms.   I know it’s not a sensible thing to do, especially when I come across a website that goes into details about disease progression and prognosis. After all, each case of scleroderma…
I survived the holidays! As fellow patients living with chronic, degenerative, rare diseases know all too well, there is no holiday from our daily myriad symptoms. The holidays can be isolating and difficult, as sometimes I am physically unable to join festivities. I am hypervigilant about…
Electric scooters have come to Christchurch! For the cost of a few dollars, you can ride around town on these zippy wee numbers to see the sights, get to where you’re going without walking, and best of all, have some fun. My husband…
Last weekend was our son’s graduation in Dunedin, a city in southern New Zealand that is home to Otago University. We were extremely proud to be there to watch him receive his degree in physical education. Traveling to Dunedin involved a five-hour car…
The festive holiday season is here. To mark the occasion, check out my little “dream team” Christmas jumper video. Christmas jumper day. (All photos courtesy of Nicole Whitehill) As patients living with a chronic, debilitating, and rare autoimmune disease, we know all too well…
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