I’d liked to have titled this article ‘Scleroderma surprises the ordinary girl’, but Kim Tocker has already claimed it in her superb writing. ‘Scleroderma surprises the older woman’ does not quite have quite the right ring I was hoping for. So, I have called it ‘Heather’s thoughts on Scleroderma’.
I grew up in Canterbury. My favourite photo of me is just before my 4th birthday, in July, outside with bare feet in the winter. I and my two siblings lived a life in the outdoors in all sorts of weather. I grew up eating Dad’s and Mum’s homegrown veggies. There wasn’t an overabundance of meat. We biked or walked everywhere. I never smoked.
In my late teens I found drinking even small amounts of alcohol sent me to sleep so I gave that up (more about that later).
Graham and I married and lived on a low-spray regime farm. I was now growing the veggies, drinking artesian water and breathing clean Southland air. We kept many pets, including dogs, that needed lots of walks. I was an unintentional poster child for a positive lifestyle. Four children later, doctors investigated why my liver function test results were so high. They had checked them when I started taking statins. They diagnosed me with primary sclerosing cholangitis. The jury is still out on whether it is an auto-immune disease. It came as a surprise as I was feeling fine, but it did explain going to sleep after drinking alcohol!
A few years later other health problems emerged. They arrived at a stressful time; as one of our children was having mental health problems and I developed shingles. Fortunately, shingles was not too hard on me. I saw a rheumatologist (who did not diagnose me with scleroderma) for a couple of years. Finally, a locum at our medical centre, to whom I am so grateful, did confirm scleroderma. Like many of you, thanks to Dr Google, I had an idea that it may have been the problem. I am so fortunate now to be under the care of our Southland District Health Board’s rheumatologist.
Those of you with scleroderma should take heart. Even though I live a healthy lifestyle, scleroderma still came to stay. Scleroderma happens – it is what it is. Sighing and thinking ‘what if’ won’t change anything.I am so blessed that Maureen and Jenny set up our Southland group. We are not going to cure scleroderma but it’s great to meet up with others on the same journey. Because of it, Graham and I have met Diane and Gordon and many other people around New Zealand. We’ve learned so much from the seminars.
Wasn’t I fortunate to arrive just when our society was being formed? Without this support and the Internet, having scleroderma would be a very scary place.
I found the following tips to ‘Overcome a Crisis’ in a magazine many years ago and I still refer to them.
- Face facts -Some things refuse to go away and if ignored may even explode in our faces. Shutting your eyes is crazy. Hoping for the best is OK, but of little real use. On the other hand, remember that nothing is the end of the world, however much it may seem that way.
- Act – do what you can do. Something can be done, however little. Try to feel self-reliant, at least more than you did an hour ago. Don’t act rashly, just because you are feeling crushed or upset.
- Get expert help. To survive, you must be practical. When the dust has settled and the shock absorbed a little, assess your main problems then seek expert advice. Don’t be ashamed of making a fuss to get it.
Don’t try to struggle on alone. Make your own decisions. Refuse to be hustled, browbeaten, pressured or otherwise to make decisions you are not sure about.
Thanks to John and Barbara Spavin for their help with the article and Word’s thesaurus and grammar check making me sound much cleverer than I really am.