Staying One Step Ahead of Scleroderma

Staying One Step Ahead of Scleroderma

Scleroderma and the Ordinary Girl

Sometimes when I’m sitting in my recliner thinking about the meaning of life, I find myself fantasizing about how my funeral will go. 

In my mind’s eye, it’s going to be a great party, with vases of sunflowers everywhere, plenty of my special brownies for afterward (my own recipe of course — after all, I am known for my special brownies), and a cup of tea. I am hoping a number of my favorite grooves will be featured, including a bit of Queen, a touch of The Beatles, and some Pink Floyd. 

As I was getting into whether I should go all out and actually set a theme for it (something along the lines of “come dressed as your favorite ’70s band”), I realized the absurdity of my mind’s meanderings. I was sitting and contemplating life for goodness sake, how on earth did I end up in the middle of my imaginary funeral?

This isn’t the first time I’ve envisioned how I want my send-off to go. In fact, there seems to be a pocketful of imaginary scenarios that I have tucked away in the recesses of my mind. They are all situations, outcomes, and ideas that I have collected, and all feature how I can stay a step ahead of scleroderma.

Sometimes it’s my funeral, but other times I’m receiving a bad prognosis from one of my specialists, or I am planning practical ways to cope once I am too sick to walk

It seems that I unconsciously like to reach in and select one to play out to myself on a regular basis. Usually, by the time I’ve realized what I’m doing, I’m so far into the fantasy that I’ve managed to make myself cry or have begun to belt out “Bohemian Rhapsody” for the neighbors to hear.

Yesterday, as I was obsessing about whether to go for a glossy or matt finish on the funeral service brochures, I caught myself again, and really began to wonder what on earth these made-up vignettes were all about.

Initially, it didn’t make sense. However, once I realized that the common theme was always about how I will manage possible future complications of my scleroderma (including my inevitable death from it), I realized what was going on.

Scleroderma can feel big and frightening. I rely on working with my team of specialists to figure out the best ways that I can live with it. However, in order to survive the challenges, it seems that I need to feel a sense of mastery over the disease.

Self-efficacy is associated with a belief in ourselves and knowing that we are able to meet and cope with the challenges that lie ahead.  It is connected to self-esteem, and one way to achieve a healthy sense of self-efficacy is to feel we are able to master difficult situations.

I am certain my imaginary scenarios are a way of creating a sense of mastery over my disease and what I envisage it will bring in the future. 

My unconscious rationale is that If I can’t stop myself dying from it, at least I can get one up on the end outcome by making sure I’ve planned the perfect farewell to everyone. If I imagine myself dealing with my doctors giving me results suggesting disease progression and I am able to cope with my own story, then I can practice mastering the emotions and thoughts I’ll have if it really happens. It’s preempting the bad stuff so that I can feel one step ahead of scleroderma.

I’m pleased that I’ve figured it out. I’m not certain how effective my mastery musings really are, but I have realized that there is an important plot line that I need to change, starting today.

No longer am I imagining my funeral. Instead, it’s going to be a great big party with Scleroderma Warriors from across the globe getting together to celebrate the discovery of a cure. I’m not certain of the dress code yet, but I’m pretty sure we will all be wearing teal, and vases of sunflowers will be everywhere. 

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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.

10 comments

  1. Chris Nickerson says:

    Kim. I paid for my funeral years ago because I was pessimistic about my future. Since then I have greatly improved and I seem to be living for ever. I have lost healthy friends on the way, always to the sudden onrush of cancer. I am glad I paid for my funeral as the price goes up every year, making mine now a bargain. So I recommend you hope that you will improve as I have. I nearly died from my disease in 1978. Now I will be 75 on 1st March 2019. All birthday well wishes welcome!

    • Kim Tocker says:

      Hi Chris – so pleased to get your message – I’m sorry it has taken me so long to reply – I’m ever so slightly techno-challanged! I am doing really well at the moment, and today am hoping to be able to write about this, so watch out for that one coming up soon!

  2. Tina Johnson says:

    I love your column. I can’t wait to read your newest post.
    I was diagnosed with Pre-CREST in 1985 at age 23, then Scleroderma/MCTD in 1994. For many years I was very blessed to deal with minimal symptoms such as Raynaud’s. In 2012, the digital ulcers became severe and required 5 amputations. Thought I was in the clear until late 2018 when I began experiencing shortness of breath. In March 2019, I had open heart surgery to replace my mitral valve that was almost closed due to calcification, and one bypass. I healed quickly and was back on my feet in no time. However, the shortness of breath has not improved. I realize I am doing well compared to many scleroderma patients, but, I too can relate to the wandering thoughts for the future. These very serious and sudden surprise issues are exhausting. I tend to blame every ailment on the disease and the mass confusion living in my immune system. I do my best to push fear aside and press thru. But there are days when that is easier said than done.
    Living in the present has become a very real endeavor. I am a planner and a thinker and thrive on organization so this disease has forced me to “tweak” my self expections. I have tried to glean the positives this disease has brought to my life and not dwell on the negatives and the unknowns. I have met so many caring and concerned people during my journey. Their love and encouragement have had a huge impact on my life. In the scariest and most painful times, I have “found out what I’m made of”, as my mother would say. I have decided I come from tough stock and that is very comforting. I believe we will see a cure and pray for all the Scleroderma Warriors and those fighting for us.

    • Kim Tocker says:

      Hi Tina – thanks so much for your message – so lovely to hear from you – and you sound like a really grounded person who is managing this disease really well. Staying in the present is really important, and helps so much with being able to see the good things in life in amongst the upheaval of Scleroderma. Go you!

  3. Elisa J Holt says:

    Kim,
    I came across your website while looking for answers to autoimmune ear disease with Systemic Sclerosis. I’ve survived SS for 35 years and was recently diagnosed with Lupus. I started having constant static noises in my ears off and on, with bouts of vertigo, balance problems and hearing loss. For the last couple of months, the noise has intensified and is constant, with a few seconds between noises. It’s affecting my sleep, as it is prevalent in my left ear and wakes me up if I roll to that side. When the roaring gets louder, I can’t hear my tv or what a person is saying. If I turn the tv up to hear, it only increases the noise. I’ve been to an ENT and he says there’s nothing they can do.

    Can you give me any information you might have about this? Is there any help? Will I totally lose my hearing because of this?
    Please help.
    Thanks,
    Jeannie

    • Kim Tocker says:

      Hi Jeannie – thanks for your message – I’m no expert in terms of medical knowledge about the ear issues you are experiencing that you have outlined – the ENT is a good place to start. I also get the same thing happening in my right ear, also have had it checked out and told a similar thing to you. Fortunately it mainly affects me at night, and only occasionally during the day. Currently I am talking to me Primary Scleroderma specialist about it and she wants me to explore the autonomic side of things as I have other autonomic issues to do with my nervous system happening that are related to Scleroderma. My advice would be to consult with your main Scleroderma doctor (probably a Rheumatologist or similar) and see what they suggest. I also suffer from BPPV (here’s a link https://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo) and have had physiotherapy treatment which has really helped – again check this out with your primary physician. I hope this helps just a little – hang in there fellow Scleroderma Warrior!

  4. Irin Parveen Alam says:

    I am DrIrin,OBGYN 5 yrs back developed reynaud,s and tingling and after investigation diagnosed as Ssc. I had finger tip ulceration off and on.Some of my patients and Nurse who knowed me used to say that i am turning dark, i felt pain only on 1st metatarsophalyngeal joint. Was severly tired with little work. Specially after operation and after doing chamber.I realised that my fingers are getting swellen and black. Have to wear gloves with which i am not comfortable while meeting with patient. I compare my hands with patients hand on patients abdomen. Now i have reduced my workloads taking more rest and getting better.

    • Kim Tocker says:

      Hi there! There are so many complications to this disease aren’t there? I think it is really wonderful that you are now practicing such excellent self-care and managing to feel the benefits. Rest is such an important part of managing this disease. I know I felt the benefits when I had to give up practicing as a Counsellor, despite not really wanting to give up at the time – now I would never go back, the positive spin-off from resting and taking care of my exercise and diet is paying off and I would never have had the time to focus properly on these things if I had kept working – which was getting impossible to do anyway. It’s wonderful to hear about your focus on your self care, thanks for messaging :).

  5. Rosanna Perrigo says:

    Hi there. Just was confirmed that I have Sine Scleroderma. My ANA tested positive back in 2017, but no physician wanted to jump in the water because I had no “skin manifestations”. I have GERD, Gastroparesis, Esophageal Stricture, dysphagia, Watermelon Stomach (GAVES), and Raynauds. Now, in the last two weeks, both my new Hematologist and my new Gastroenterologist, asked if I ever had anyone mention Scleroderma.I pulled out of my medical binder my ANA results and BOTH physicians were shocked that no one followed up on it.
    Self care is new to me… I have always put others first. Guess I am being forced to learn to put myself in the front of the line, whether I want to or not. Whether others want me to or not.

    • Kim Tocker says:

      Hi Rosanna – I’m glad you have a clear diagnosis now – even though it’s strange to say that, knowing exactly what is going on means you now have a much clearer picture about how best to care for yourself, and also the specific things you can do to help. I would really recommend keeping in touch with the Scleroderma info and community here at Bionews as well as finding a Scleroderma support group in your area – there are many rewards of being able to talk to others with Scleroderma, sharing tips and info, as well as the emotional support. I’m so encouraged to read your determination to put yourself first….it’s tricky to do when you’re not used to doing so, but in the long-run it helps you to be able to live a better more productive life if you are looking after yourself as a priority. I’m sending you many positive vibes and encouragement as a fellow Scleroderma Warrior!

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