Telangiectasia, Tiger Lilies, and Traditions

Telangiectasia, Tiger Lilies, and Traditions

I always look forward to events that occur each year, particularly those involving special traditions. This Easter was no exception, and as usual, I made my “hot peace buns.” I attempt to make these every Good Friday, although it can be a mission to find the energy to make my stiff hands and fingers do the fiddly bits. 

As you can see, it was worth it in the end, and I even managed to make two batches: 

(Photo by Kim Tocker)

While sitting back with a cup of hot tea and enjoying a freshly baked peace bun covered with lashings of melted butter, I found myself reflecting on how calm and settled I felt. This was despite my sore fingers and the overwhelming exhaustion that had overtaken me after my efforts in the kitchen.

It wasn’t the comfort food that caused noticeable feelings of reassurance, although my taste buds certainly appreciated the spicy goodness. Nor was it the autumn sun streaming through the window as I sipped my tea, or the hot mug I could wrap my sore fingers around as I drank. It was something bigger.

For me, there is something comforting and healing about the surety of my annual customs and traditions. 

Scleroderma brings about so many changes and disruptions in my life. The disease’s constant progression causes variations in symptom severity. Additionally, every day brings challenges because there is no way to predict how I will feel when I wake up. Some days are great, but many are not. It is difficult to make plans in advance, including basic things like whether I will be able to cook an evening meal.

Underlying these practical implications are other more sinister outcomes, all of which are unknown until they occur. Does my increase in telangiectasia mean I am developing pulmonary hypertension? Is there a new calcinosis starting (along with the serious possibility of infection), or is my finger just sore? Do these continual new physical manifestations of scleroderma indicate that my disease is progressing aggressively and my lifespan may be affected?

There is no doubt about the volatile inner stirrings these constant disease changes bring about inside my head, which are clearly not conducive to feelings of comfort and healing.

However, no matter how small or insignificant making my annual hot peace buns at Easter may seem, or placing the star my grandparents handed down to me on the Christmas tree, these traditions are a predictable pleasure. There are many of them throughout the year, including planting the bulbs at Easter so we know that spring has arrived, preserving the summer fruit for the winter solstice, and preparing the bird feeders for our feathered friends in autumn so they can eat during the cold winter months.

It is the surety of these things that matters; knowing that despite scleroderma’s ever-changing landscape of symptoms and prognosis, there is always something special to look forward to throughout the year. They are dependable and meaningful events that regularly provide an opportunity to practice my special values and beliefs together with my family.

This Easter, we planted spring bulbs, deciding on tiger lilies. I will share photos in the spring when they flower, which is another beautiful annual spectacle to happily anticipate that has nothing to do with scleroderma.

How fabulous is that?

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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.

2 comments

  1. V says:

    Thank you Kim, this is a beautiful article, filled with truths. I often reflect that recognizing and savouring of these simple pleasures is actually thanks, at least in part, to scleroderma… It is my silver-lining.

  2. Judy Bowie says:

    I so have ur same feelings Kim 😔 I’ve lost interest in the things I love like my special bread in the summer n my special Christmas cookies at the family cookie day ever yr n my plants in the spring. A real job to water them so I stop buying them it’s been 2 yrs. 😔 My is my HANDS n FINGERS😢😢 I’am a John Hopkins patient n I love my Dr. It’s been 5 yrs. My heart n lungs n kidneys r doing just fine. Thx God 🙏🙏🙏Felt good to share my feelings wth u. Have a day!!

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