The Perils of Playing the Scleroderma Slot Machine

The Perils of Playing the Scleroderma Slot Machine

Scleroderma and the Ordinary Girl

I recently had lunch at the casino with a dear friend. We had planned it for some time, it was in my online diary, and I was really pleased to wake up on the day feeling well enough to go.

Lunch was delicious, and I even had a few coins and a little extra energy. So, we tried our luck on the slot machines.  

Gambling is not generally a huge pastime for me, particularly since I don’t get out often. I’m definitely not going to make it to the high roller room with my 40-cent bets and $20 limit, I assure you! However, once in a while, I consider it to be a bit of fun, and it’s kind of nice to sit there watching the bells and whistles go off and taking in the flashing lights. For a time, it distracts me from my body and its continuing issues.

While my friend and I sat there like the two big spenders we are, we started to notice a repetitive pattern going on with my friend’s slot machine. You have to wait for three identical pictures to come up on a spin, and if this happens, you are awarded some free games, which is always exciting.

However, what repeatedly happened was that she would only get two of the same pictures, but not three. Our excitement would mount as we eagerly waited for the third one to roll around, but it never did, leaving us feeling rather deflated every time.

Although we had a giggle over it on our way out the door, there was something familiar about that feeling of excited anticipation building, only to be dashed at the last minute. I just couldn’t quite put my finger on it at the time.

It was a couple of days later that I finally identified why that deflated, disappointed feeling was familiar to me.

I had experienced a decrease in pain with new medication, and I was excited about another good day to come.

As luck would have it, scleroderma decided to swindle me. I woke up with a painful and unexpected kidney issue. The deflation and disappointment were sharp as I grudgingly arranged to get to the doctor as soon as possible. It was the same disheartening feeling as at the casino, only much worse.

The thing I’ve learned about living with a horrible illness like scleroderma is that I’m foolish to bet on expectations that the disease will give me any kind of a break for an extended time. Sadly, I’ve become extremely cynical about that.

However, the spin-off from that particular lesson is that the days I am winning are like treasures, and my true appreciation and gratitude on those days is a bit like hitting the jackpot!

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
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I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

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