An Ordinary Girl with an Extraordinary Disease

An Ordinary Girl with an Extraordinary Disease

Hello, and welcome to my ordinary girl column.

This is my very first piece of writing, so it makes sense to introduce myself and “set the scene” for what I hope will be a useful and helpful read for those interested.

First, it’s been three years since I was diagnosed with limited systemic scleroderma. In writing this column, I am hoping to share my experience of the disease from the framework of my life here in New Zealand, as a mum, wife, and retired counselor/therapist.

Second, I’ve found my life changed dramatically since my diagnosis.  I’ve always been a  “mover and shaker,” working hard and doing the best job I could as a therapist. I was an energetic mum to our three boys and ran our household efficiently.  Since becoming sick I’ve lost a great deal physically, mentally, and emotionally with fatigue and pain slowing me down.  These days, I conduct my life from a recliner chair in the corner of our lounge!

I refer to myself as an “ordinary girl” — it’s not meant to be a derogatory description. It really just reflects the fact that I’m a normal person who was hit with an unexpected and life-changing disease.

Today I thought I’d share my latest experience, which really got me thinking about other “ordinary people” who are trying to negotiate their illnesses.

A couple of weeks ago I ended up in the hospital for a week with a pulmonary embolism. Hospitals quickly become familiar places for the chronically ill. However, as I sat there in my bed, in a ward with five others, with very little privacy except a flimsy curtain and a gown that kept flashing my nether regions to all and sundry, I found myself thinking, “I hate this, I’m stuck here with all these weirdos and I want to go home to my recliner.”

I know, I’m very ashamed to admit calling the other people weirdos — even in my mind.

The lady next to me was very elderly, deaf as a post, and every time she coughed she then spat into a container and moaned. All extremely loudly, because, of course, she couldn’t hear herself. On two occasions she lost her false teeth on the floor while spitting. Each time this happened she would exclaim her frustration, loudly, in swear words. The man across from me relieved himself on the floor twice, and the lady on the other side was so rude that I cringed any time she spoke to someone.  So, I sat there in my grumpiness and fumed about my roommates.

On the second afternoon, a young man came to visit the elderly lady next to me.  While she was visiting the bathroom he asked me how I was managing with her loud noises and expletives. He went on to tell me that she had become deaf very suddenly through an illness, and was really struggling to cope: “Grandma was an amazing woman before she got sick.  She used to live on a house-bus, and travel around the country, despite being aged 82. She was a very colorful character, loved people, and was quite the wild woman. She really struggles now. She used to love her life so much.”

I came down from my judgmental pedestal with quite a thump — and so I should have.

The next day I learned that the man opposite me had a stroke a time ago, and now couldn’t manage to hold things (including the paraphernalia he was trying to use to relieve himself). He felt mortified about the loss of his ability to attend to his personal tasks, and his loss of dignity.  I decided to talk to the grumpy lady on the other side.  She was almost fully blind, I hadn’t realized.  Being in hospital was very frightening for her because she didn’t know the layout at all, it was an unfamiliar place. She was missing her cat and her home, and all familiar surroundings.

We were all just ordinary people trying to negotiate our lives in the face of chronic illness.

I had judged my roommates without thought or consideration, despite being chronically ill myself! Every one of us has a story, life experiences, and things we have lost because we’ve become sick.  These things are invisible to others, unless we endeavor to find ways to see them. Restoration of dignity, a sense of acceptance, and consequent belonging comes from communication and connection, rather than judgment and bitterness.

My hope is that this column provides a platform to connect and communicate. I look forward to writing my next one. See you all then!

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.

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  1. Gillian Slater says:

    Hello Kim,
    Thank-you for you imformative & amusing article.
    My name is Gill, I was diagnosed with Systemic Scleroderma early June this year, after being poorly all through the year with numerous complaints, which ended up with me being admitted to hospital with severe breathlessness . It took 10 days & many tests before I was given my diagnosis & sent home with a cocktail of medication, now 3 months down the line if anything feeling worse with different complaints almost weekly.
    I was in New Zealand visiting my friend who is a nurse & lives in Motueka , I was in your beautiful country for 7 weeks living life to the full & now my life has changed…… everything is such an effort & I’d do anything to feel like “me” again.
    I hope we can keep in touch.
    With best wishes & kind Regards X

    • Kim Tocker says:

      Hi Gill, nice to meet you. It’s quite a journey isn’t it? I’m glad that they were able to get you diagnosed quickly one you were in hospital…unfortunately many of us don’t get clear diagnoses for years, because of course it is a rare disease. Hang in there, in can take a while to get settled with the medications. Life certainly changes, and I’m planning to write more about that in coming columns, stayed tuned!
      We love New Zealand, and you chose a gorgeous part of the country to visit, we sometimes holiday near Motueka.
      Stay as well as you can, and all the very best. x

  2. Michelle says:

    Wonderfully written, Kim! So devastating to see how chronic illness can change ones life so quickly and dramatically. I truly hope alot of awareness is raised which will result in a quicker diagnosis,effective treatment and pain relief plans and Dr’s & Consultants who are experienced in dealing with Scleroderma to be available in New Zealand.
    Looking forward to your next column.

    • Kim Tocker says:

      Hi Michelle….thankyou! I’m enjoying writing, especially about something I feel so passionate about, and hoping to raise awareness. I’m especially interested to note the doctors and consultants who are beginning to look into cutting edge treatments for Scleroderma, both with the hope of a cure, and also to research more ways we can access better management of our symptoms. So nice to hear your encouraging words. X

  3. Dana McCaron says:

    I too appreciated the reminder of it not being all about us. Everyone has something they are going through or dealing with. I was diagnosed this July with limited systemic sclerosis and was wondering what kind of progression you have experienced. I’m seeing a pulmonary doctor this week for possible ILD and am a little scared. Everything I read says that the limited scleroderma progresses slowly. I’m 44 yrs old and am the provider of my family – 1 hubby, 1 son – and the fatigue has really hit me this last month. Wondering if it will go through phases or only get worse.

    • Kim Tocker says:

      Hi Dana, thanks for your comment. I think this disease has common factors, but can present itself slightly differently in each individual case. For me, I’ve noticed a definite progression, and my various tests and investigations reflect this. The most difficult aspect for me in terms of the progression has been the fatigue and complications associated with my heart and lungs, because those things have made continuing my life in the manner I had prior to becoming sick impossible. The fatigue has crept up slowly but surely, so I have had to adapt. But that’s only my experience, so things might be different for you. It certainly sounds as if you are being looked after by your doctors. A local support group if you have one is very helpful, connecting with others helps with learning more about how things have gone for them, and learning about the commonalities (is that even a word?!) of the disease helps one not to feel as isolated. Hang in there, you may need to make some adaptations to your life, but it’s amazing how we do adapt as humans. All the very best.

  4. Barb Dietrich says:

    Enjoyed your writing Kim. I am going to be 70 this fall and was diagnosed with CREST SYNDROME (Scleroderma) in my late 20’s.

    It started with the Raynaud’s and later gut issues. I managed to raise 2 children, not without challenges I might add, help with farm work and work part time. I retired early, and it hasn’t been until the last few years there has been more symptoms appearing. My hands are the biggest problem now, with my fingers curling up and painful calcinosis, lots of them!

    I would like to mention that diet is extremely important. I’ve had gut issues with problematic bowel issues and difficulty swallowing over the years. A year and a half ago the bowel was so active with diarrhea and incontinence, that I visited a naturopath for 4 months during the summer……took natural herbs for different organs and changed my diet to mostly natural foods. If it comes in a package or can with additives, forget it. I have relatively normal bowel movements since..providing I follow the diet.

    I feel very fortunate to have been able to live life as well as I have, but with the aging process need to keep in mind the illness and pacing myself, for sure.

    I have been blessed with a great Dr. Of Rhumetology and Clinic services within an hour’s driving distance throughout this process. As well a great support group in the same city of London, Ontario, Canada

    Wishing everyone all the best.


    • Kim Tocker says:

      Hi Barb, fantastic to hear from you, wow, so encouraging to hear how you have managed your life this far. I am determined to do as much research as possible into my diet and have begun to make changes. I also agree with the importance of pacing yourself, so important. How wonderful that you have such a supportive medical team. Canada sounds like such a wonderful place to live in the world, as much as I love New Zealand, Canada is certainly one of my favourite places, despite having only visited virtually from the comfort of my armchair 🙂

  5. Barb Dietrich says:

    In addition the the diet, I take a probiotic supplement once a day as well as digestive enzymes each meal.

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