Medical Musings with Friends started in January 2017. I was resting one afternoon in my bedroom, contemplating the new year ahead and wondering what possible purpose my life could hold, as my body kept spectacularly attacking me from every angle.
I have a Rare Genetic Bone Disease with multiple bone breaks, ongoing surgeries, severe spinal stenosis compressing my lumbar spinal cord, Rheumatoid Arthritis, Permanent Colostomy due to a bowel prolapse, Fibromyalgia, Sjogrens Syndrome, Trigeminal Neuralgia, an Idiopathic Inflammatory Nerve Disease, plus a few other issues. It can be slightly overwhelming when the list adds up.
I suddenly had an idea, a slightly crazy idea, that maybe if I set up a closed forum for people with chronic, complex and rare diseases it could be an extension of my blog.
A place where a few people could gather to provide support and genuine understanding. A place where it was ok to “muse” about how complex life gets when you have more than one illness.
A place where you know others wouldn’t get scared by what they read but would feel your pain and understand your struggles. A place where other chronic illness bloggers and writers could share their work and words of wisdom.
A few people, maybe 50, or so I thought.
Within 6 months we had over 1400 members and 7 moderators assisting me. We continue to grow our membership weekly which still amazes me.
Unbelievable!! What a blessing, what a purpose, what an honour and privilege, to be trusted to provide such a large group of people a place to find true friendship, support and understanding.
So, I thought it was time to introduce more formally my beautiful team of moderators. They have each provided a short bio to tell you in their own words a little about themselves, plus a photo.
I can’t thank them enough for their personal support and commitment in joining me in this crazy musings journey. They are just the best, most warmest, caring people you could meet and they all volunteer their time while living with their own complex chronic diseases.💗💗
So, here’s me…I live with my beautiful husband Peter, who is also my full time carer. We live in a stunning Bayside village in South East Queensland, Australia. When I’m not busy chatting with you all on the forum, I’m usually found blogging here on “My Medical Musings” or writing articles.
If you would like to read a little more about me here’s the link to My Story
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
Sam Moss – Founder/Administrator (Australia)
I have lived with Auto Immune conditions since I was 11 years of age and they add up to SLE (Lupus), RA, Osteoporosis and Ménière’s disease.
I’m known as Nik Puppykins…lover of two fur baby dogs. I have two, which, in conjunction with my gorgeous Mum, light up my life every day.
(Yes… I live with my wacky, meddling, inspiring, gorgeous, loving Mum ❤️)
My life is positively wonderful and full, despite many episodic hardships over the years.
My motto is:
“One life…live it now, well, with joy and love and inspire others to do the same”
Family, friends, puppy cuddling, photography, market wandering, coffee, sushi, blue cheese, travel (and probably a few other loves I’ve forgotten!)..complete me. 😘😘
Nik Watson ( Australian Administrator)
Hello there my name is Dave, I’ve been married for 10 years, my wife and I have a 9 year old daughter as well as a 7 year old son.
Before the age of 21 I was rather healthy. In 2003 I was admitted to hospital and diagnosed with Ulceritive Colitis which after a few weeks in hospital it was determined I would require an Ileostomy. The Ileostomy is no permanent which is something I don’t mind at all.
In 2007 I was diagnosed with Multiple Sclerosis. This was a significant changing point in my life to say the least. I have been on three treatments for my MS, one of which did cause seizures at least one confirmed Gran Mal.
In 2012, I began to develop issues with my skin on both legs, arms as well as my back. After a number of doctors mis diagnosed the issue I was given the proper diagnosis of Pyoderma Gangrenosum. A very rare skin disease likened to having Ulceritive Colitis on the surface of the skin.
On a daily basis I have issues with my MS, my right shin has lifelong significant damage from the PG. I have come to a point I cannot work Full Time as it simply takes too much out of me. I began a blog in January 2017 in the hopes of sharing my experiences while helping others through their challenges and to understand they are not alone.
I am truly grateful for being a member of such an incredible group of individuals. We all have commonalities and are here to support, encourage and sometimes just listen.
Below are the links to my blog as well as Social Media feedsbforbthosebthat may be interested in learning or asking more.
Dave Head (Canadian/US Moderator)
Clare Rayner – ( UK Moderator)
Hi, I am Lydia! I live in British Columbia, Canada, with my wonderful husband of 18 years, Tony, and our furkids – a black cat, named Monkey, and Whippet/Jack Russell goofy pup named Miley. They are both rescues and have definitely brightened our lives.
I have lived with chronic pain since I was 15 when a skiing accident and botched knee surgery caused fragments of cartilage and bone to wear away the joint. Then, 20 years later, an accident caused trauma to my entire body, including a triple fracture in my back (lumbar). At 35, I was diagnosed with osteoarthritis, and it has progressed to every joint it possibly can. A diagnosis of Fibromyalgia followed. Along with chronic pain, I have CFS/ME, IBS, severe asthma, a full knee replacement (to fix the damage done earlier), and chronic migraines. I also live with depression, bipolar, OCD, and severe anxiety/panic disorder. It has taken a long time and a lot of hard work; however, I have gained control over my emotional and mental challenges.
Because of all my health problems, I lost out on a lot of living. That is until I was able to realize that I HAD these conditions, they didn’t HAVE me. Since that time, my whole world has turned around. I have gotten back to my lifelong passion for writing and am using my desire to pay forward all I have learned through my words. I have a blog called beinglydia.com, where I openly share my story in hopes of helping even one person. And I am writing a book on the effect that stigma has on how chronic warriors feel about themselves.
I volunteer as a certified health coach helping people achieve their goals regarding their illnesses and general life situation. I love it because I am one-on-one with people who are really ready to take control of their lives as I did. As well, I advocate for patients who are not being heard by their doctors, hospital, employers, etc. I also love being part of MMWF because it is such a beautiful forum where you can feel safe, loved and definitely not alone.
Lydia Beier – (Canadian Moderator)
I am Mary, 53, married to my rock and best friend Andy for 23 years now. We have two children, two dogs and a cat. I was medically retired from a executive management career in clinical research in 2016 due to developing treatment resistant hypoglycaemia post gastric bypass. I also have degenerative disc disease, fibromyalgia, osteoarthritis and severe IBS.
I am learning to navigate this new world of disability, chronic pain and sleeplessness by reading and learning and reaching out to others in the same boat. Like many busy people I neglected and ignored my health until I couldn’t any longer. Being chronically ill with complex conditions has taught me so much about myself and the people around me. Medical Musings with Friends has become one of my lifelines and favourite places to meet some awesome people.
I live in Bristol in the U.K. but grew up in Western Australia, moving to the U.K. when I was a teenager. My ambition is to go camping again with my family.
Mary Perkins – (UK Moderator)
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join Medical Musings with Friends. Feel free to also share the link with any others you know who have a chronic illness and may benefit from a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.