In a few weeks, it will be my 20th anniversary of first hearing those life-changing words: “You have scleroderma,” followed by, “and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15 months, maximum. Forget being a barrister.” I have written about…
A very unusual event happened this week that prompted me to think hard about my role as a patient when I am being looked after by my main caregiver, my husband Max. Despite hardly ever getting sick, Max became very unwell with a nasty viral illness…
Children have a keen sense of awareness and understanding when it comes to those with a disability. They learn quickly, adapt to most situations, are not judgmental, and are openly willing to help those in need. Sometimes they say or do just the right thing to brighten up…
Disabled people are a minority group, as are those with rare diseases such as scleroderma. Just lately, I have read many anecdotal stories of people just like me being singled out, bullied and ridiculed, whether it be about our spotty facial…
A portion of the human race embodies a longing in its heart to help the disadvantaged. One often can find them donating to charities, volunteering, or lending a hand to close friends and family. It fills their happiness meter to assist those in need. But, it…
Those life-changing words “you have scleroderma” followed by “and Raynaud’s phenomenon” often are met with relief, paradoxically, due to finally having an explanation as to what is happening to your body. And then, within seconds, the reality hits of what those words actually mean and what the…
A short time ago, I saw a foot specialist who, by all accounts, was well-versed in all aspects of podiatry pertaining to rheumatoid issues, and also had a particular interest in scleroderma. As my feet had been in agony because of loss of fat in the…
As I’ve adapted to a life of chronic illness, key moments have broken my soul. These moments have refocused my view about life by pushing me past the definition of “normal” life circumstances. Scleroderma is constantly re-carving my comfort zone and placing me in situations that strengthen my emotional…
It’s hard to find an enjoyable outdoor activity that my entire family of four can do together. First, there’s the eye-rolling protests about having to spend time with parents compared to the far preferable option of hanging with friends. This universal issue comes with the territory of…
There have been times when my spirit just feels broken by scleroderma. It is hard to feel grounded when I am tired, in pain, and feel unwell and frightened about my future. Scleroderma’s presence in my life is so overwhelmingly relentless that it breaks my…
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