It’s almost 3 months since my official book launched. Wow, time flies doesn’t it!
“My Medical Musings, A Story of Love, Laughter, Faith and Hope, Living With A Rare Disease“, is both bitter-sweet for me. Without the horrors of my health, I wouldn’t be celebrating the excitement of my new writing career.
I’m a little nervous about the book being in the big wide world. I share deeply personal things about my health, my life and my faith but I do so in order to hopefully connect with my readers, especially those dealing with their own chronic illness journey.
In the book I provide lots of practical tips on how to live, the best life possible, with chronic and debilitating disease.
In this blog post I want to give you a bit of a sneak peek from portions of my book’s Preface and Introduction. As my blog followers you have supported me for over 7 years and it’s my little gift to say “thank you”.
Thank you for giving me the courage to write this book. So many of you kept asking me to do it and your support and belief in my abilities means so much. Now I just have to hope the book doesn’t disappoint.
I also want to thank others who have contributed to the book. In the last couple of pages at the back of the book, you’ll find a collection of beautiful reviews and recommendations from some Medical Musings with Friends members.
Here are just a few:
“Think of somewhere you feel warmly welcomed, supported, motivated, loved and inspired.
That’s what being around Sam is like, and that’s what she has created with Medical Musings with Friends. Whatever your background, health, illness and circumstances, you can belong here and be an integral part of the community.
It’s what many like myself with chronic illness and pain cannot find or feel anywhere else: You’re not alone here. You’re in excellent company.”
Since joining Medical Musing with Friends, as well as being a group moderator, I have discovered how intricate the community has become in my personal life. The forum allows for deep connections to be made across the globe. Connections that are a constant reminder we are not alone with our chronic illnesses, there are hundreds of people who can truly relate to our shared experiences.”
Dave Head, Forum Moderator, livingyourlifethroughtime.wordpress.com
“I have been a member of Medical Musings with Friends for five years now. I love its community; they understand my life experiences as few people can. When my husband, my caregiver, had three strokes in three months (he’s fine now), the group was where I turned for empathy. Having over 1800 members from all over the globe means there is always someone to read and comment on posts, so I don’t feel like I’m talking to empty air.”
Navigating the Storms,
I am also so delighted to have a Foreword and an Afterword in my book. The Foreword is written by a previous boss, Retired Executive General Manager, Kenn McCall and the Afterword is by former Arthritis Queensland CEO, Emma Thompson (now CEO Ronald McDonald House South East Qld)
I am so incredibly grateful to both Kenn and Emma. I won’t share both their special contributions here. You’ll have to read the book for Kenn’s.
I will share Emma’s though. My association with Arthritis Queensland, for over 7 years as an online volunteer, has been so important to my story.
In my role at Arthritis Queensland, I have met with and heard the stories of many people living with arthritis and other chronic health conditions. Their stories are all different, but they often share some common and heartbreaking themes:
The immense physical impacts of these conditions.
The loss of a life that was hoped for.
The social and physical isolation that can leave people feeling cut off from the world.
It is hard to comprehend the experience of living with a condition that impacts every aspect of your life, let alone a condition which is itself unknown. Having to constantly face unchartered territory and to not know what the future may hold, is something which would overwhelm and exhaust many of us.
Samantha had been volunteering with Arthritis Queensland for many years before I joined the organisation and it was a couple of years before we met in person. I had contacted Sam to ask if she would talk to me about how she thought we could improve our online peer support programs. Sam had founded our online support group for women and was volunteering as a moderator in our group for the parents of children living with juvenile arthritis (a role that she still holds). In addition her writing was being picked up by well known websites and she had grown her own online support group into a significant program, with moderators based in different time zones to allow for continual support.
At the time of our meeting Sam was recovering in hospital from a spinal surgery which had taken place the day before. While I was concerned about imposing on Sam, so soon after her surgery, she assured me that she was very happy to have a visitor.
I was already aware of her incredibly complex health conditions and, as I opened the hospital room door, I was expecting to find a frail figure prone in her bed. I could not have been more wrong.
I was immediately struck by Sam’s warmth and composure. Despite clearly having just had major surgery she was flawlessly presented and very keen to chat and help wherever she could. Sam was generous with her knowledge and humble in the huge contribution she has made to thousands of people, all over the world, through the online communities she has created.
It is easy to dismiss relationships built online as lesser than those built in-person. But that is a mistake. The online communities that Samantha has built provide safe spaces for people to connect and those connections are often deep and long lasting. Connecting with people who have a similar lived experience helps people to feel less isolated. The act of story sharing helps people make sense of their own situation and find hope for the future.
Samantha is an incredible example of the resilience of our human spirit. Her faith, her wonderful husband and her own internal drive, seems to give her superhuman strength to turn her own health challenges into something positive. By sharing her story, her wonderful approach to life and by building communities, she is creating a positive impact across the world. She refuses to be confined by her health conditions.
We all face challenges in our lives but some people face many more than others. Rarely have I met someone who approaches every challenge in her life with as much grace as Samantha.
Former Chief Executive Officer
www.arthritis.org.au Arthritis Queensland
I also want to thank Betsy Riley, a long time member of Medical Musings with Friends. Betsy wrote the most amazing poem about me. She just posted it one day in the forum out of the blue and there was no way it couldn’t be included in the book. Again it’s another treat I’ll keep a secret for now.
Here’s A Sneak Peek at Some of The Preface and Introduction
Writing this book has been a long time dream for me. I always believed one day I would write a non-fiction book. Fiction has never been my forte, although I love reading it and admire authors able to pull together a captivating plot. However, I seem to be more comfortable in sharing real stories.
I did write a very short book when I was 21, which was self published, called “God’s Ways, Not Ours”. It was commissioned by my church, as I’d been administering the restoration
of a beautiful historic church building to its original glory. The book told the restoration story and
documented the history of the church.
It was at least a start in my non fiction literary career!
I never expected to write about myself though. I couldn’t imagine there would ever be much to write about where I was concerned.
Until one day, everything in my life changed.
I love the saying ” When life gives you lemons, make lemonade”.
Well, this book is my lemonade. It’s bittersweet on so many levels.
The process has been cathartic. On one hand, it’s a dream realised. On the other hand, it’s a stark reminder of the reason I have a story to tell.
Chronic Illness is not something I would have asked for, or would wish upon anyone else, but life always has challenges no matter our
journey. This is just mine and I decided to find ways to live my best life possible with it.
I am so incredibly grateful to have the opportunity to tell my story, and share my learned experiences of how to cope with the “lemons” in my life.
I have managed over time to turn my chronic illness lemons into lemonade and my recipe is surprisingly sweet.
I truly hope as you follow my chronic illness journey through my book, you will be able to taste the sweetness, as together we laugh, cry, perhaps even cringe at times.
The chapters are designed to be read randomly or in order. It’s entirely up to you. I’m acutely aware of how difficult reading can be when struggling with so many chronic illness symptoms. I really hope I’ve managed to make this book one you can pick up, choose favourite chapters and keep going back to those when you need a friend to encourage and support you.
My overarching reason for writing this book is the same reason I started my blog and forum….simply to continue to reach out to as many people as possible, who are living daily with the consequences of chronic illness.
My hope and prayer is you will find understanding, peace, purpose, friendship, and your own path to living a fulfilled life, despite your chronic disease.
Years ago, when I was 22, I was involved in the restoration of an historic church building. It had been left derelict for years. To see it returned to its original glory as a place of worship was amazing.
After the restoration was completed, I would visit the church on my way home from work.
I loved the quietness and solace God’s house provided. Especially this building, as I had invested so much of my heart and soul into the restoration process.
I had grown up in church life and I had given my own heart to Jesus with childlike faith at the age of seven. It wasn’t until I was 21, I experienced a strong call to serve God, no matter
what circumstances I found myself in.
As a 22-year-old standing in that empty church at the end of my working day, I would sing out loud my favourite hymn:
“Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,
And to know, “Thus saith the Lord!”
(Louisa M. R. Stead circa 1850-1917)
I sang the song with complete faith that God would be with me every step of my life,having no idea what I would be facing 26 years later, and how important my faith would be to
The words of this song had even more meaning as I lost my mobility, my career, and my life as I knew it on so many levels.
In the past 14 years, I’ve had 16 surgeries, including a total abdominal hysterectomy, three bowel surgeries, seven Orthopaedic surgeries on my left leg and four on my spine. There
is no treatment and no cure for my rare disease and many of my surgeries fail.
Today, I’m often asked:
“How can you be so positive? I’d be curled in a ball in the corner crying uncontrollably if I was you. What’s your secret?”
Despite my chronic disease I still laugh, love and thank God daily for the amazing blessings in my life.
The list is bountiful:
• A beautiful husband who is my best friend, my soul mate, my lover and my full-time carer;
• A beautiful, cottage sized, home that provides me a safe haven;
• A wonderful purpose and ministry, caring for others through the online support forum I founded, “Medical Musings With Friends”, for people with chronic and complex diseases;
• Friends and family who love and support me;
• But above all, I am most grateful for the blessing of a peaceful acceptance of my circumstances.
God never promises us an easy life, but He does promise us a life full of purpose, joy, and hope. Our bodies were never made to last but our souls are.
I hope and pray, in the unfolding chapters of my book, my story encourages others who are facing an uncertain future and change in life’s direction, to not give up on creating new dreams and finding a new purpose.
I hope my shared experiences, throughout, help you to find the courage over time, to learn to accept and embrace a new way of life and be brave enough to share your own experiences.
Chronic disease is a part of our life but it doesn’t have to be all of our life.
The Most Important Thank you
I can’t end this blog post without the most important thank you of all. I want to thank my husband, Peter. Without him, my story would be so different and I don’t think my book, blog or Podcast would even exist. His love and support is such a gift from above and another reason why I can sing….
“Tis so Sweet To Trust in Jesus”
He is also celebrating an amazing milestone in a week’s time. He’s turning 80 years old. I’m sure he won’t mind me sharing his age as he is a complete freak of nature. He doesn’t look older than about 60 and despite his own Osteoarthritis battle, he continues to care for me daily and supports me in all my writing and patient advocacy ventures.
Happy 80th Birthday to the love of my life.
I can’t believe you are turning 80 today Peter. Where have the years gone? I was 30 and you were 53 when we got married all those years ago. 53 seems so young now as I edge close to 60.
Age has never mattered in our love story. What’s mattered has been support, understanding, love, forgiveness, tolerance and knowing each day together would be spent with my best friend.
We never knew how significant our marriage vows,”in sickness and in health” were to be. Thank you for being by my side through the ups and downs of life and never wavering in your love and support.
I love you so much and I look forward to celebrating your 90th, and God willing, even your 100th birthday!
Happy Birthday Sweetheart.
We are counting down to Peter’s birthday celebrations over the week. I ordered balloons which were supposed to arrive on Friday but came just now. It’s not really a problem. Peter was so surprised and loves them so I wasn’t going to say anything to the company about the glitch.
Anyway they sent me an email to say they realised they made a mistake and were so sorry. They have decided to send more balloons on Friday!! We are definitely going to celebrate this birthday in style.
Peter is my best friend and my soul mate and I cannot imagine my life without him by my side. I know how truly blessed I am to have a marriage like this.
Do we argue and annoy each other? Of course we do, we are human. However our love and respect for each other and our beautiful friendship, ensures we say sorry and forgive each other for our crazy moments. Communication is the key and there is so much to be said for the saying,” never go to bed angry with each other”. We abide by this and always go to bed talking and forgiving the misunderstandings of the day.
So with a Book and a special Birthday to celebrate, I’m feeling very grateful. Moments of joy need to be grasped wholeheartedly when they arrive. They help us to switch off from being someone with a disability, or illness, and help us to embrace life and live without a label for a while. I love it when these moments arrive. I’m hoping for many of them in the coming week, as I do all I can to give the love of my life a very Happy Birthday!
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women