Scleroderma and the Ordinary Girl

Several years ago when I was working as a therapist, I came across the work of Elaine Aron – The Highly Sensitive Person.  After reading her first book I quickly realized she was describing me! It was all a bit spooky; I began to wonder if she…

I had been thinking the camera on my phone is faulty.  It seems to have been mistakenly set to “red spotty chipmunk face” mode for the past year or so, and I just couldn’t seem to change the setting.  Every selfie I took produced the same result!  My…

Five years ago, Christchurch, New Zealand, was woken with a huge earthquake rated 7.3 on the Richter scale, with the epicenter just three kilometers from our house. I recall sprinting up the hallway at about 3 a.m. to get to the kids while being thrown from side to…

My rheumatologist refers to my fatigue as being “profound.” Most days I can’t think of a better word to describe it. Let me share a typical day with you. I’m sure chronically ill people who struggle with fatigue can identify  with some of these things. (First, a disclaimer: The following…

“If you didn’t have scleroderma then you’d be a normal Mum, aye?” Our youngest was making a comment about how he loves going for bike rides with his Dad, and wished I could come, too. In the same conversation, he talked about missing me at the latest school sports afternoon,…

Yes, scleroderma certainly has affected my self-esteem in many ways. But help is at hand! This weekend there was a big sale at our local “everything” store. You know those stores, the ones that have all manner of household items, from computers to washing machines.  We went to buy a new bed…

              This week my husband Max surprised me with a day trip to Akaroa — he must have read my last column! Outings such as this can be big undertakings for the chronically unwell.  As I began to plan what was needed…

It seems to me that managing Systemic Scleroderma is a battle that occurs daily in order to balance life and survive. Should I bother to do that laundry that’s been piling up, or should I rest? (Hmm, what’s more important: Wearing clean undies or being well enough to function?) Do…

Social media is an intriguing thing, isn’t it? It can be wonderful to have sites such as Scleroderma News at our fingertips, and I do believe the internet is a platform that can provide encouragement, the latest information, and a sense of community. However, one pitfall of social media that…

Hello, and welcome to my ordinary girl column. This is my very first piece of writing, so it makes sense to introduce myself and “set the scene” for what I hope will be a useful and helpful read for those interested. First, it’s been three years since I was diagnosed…