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. 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 stunning South East Queensland, Australia, in a country suburb, near the scenic rim. 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
You can also check out my Podcast, Medical Musings With Sam
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)
Guest Moderator- Fern Adams
Hi everyone, my name is Fern and I live in Scotland. I can normally be found in my natural habitat of being wrapped in a blanket cocoon, with a cup of tea and lost in a book. I joined Medical Musings with Friends a couple of years ago after stumbling across one of Sam’s blog posts online. I love how the group has created a safe, global community filled with encouragement, support and friendship. There is nowhere else quite like it!
I have several degenerative conditions and syndromes that kindly provide some co-morbidities for good measure. With support though from carers, my trusty wheelchair Felicity and lots of thinking outside the box I still find life can be filled with lots of good moments.
When I’m not in the group I love virtually travelling the world on Google maps, writing and singing along (badly) to musicals.
Fern Adams- Guest Moderator (Scotland )
Guest Moderator- Shauni De Loose
Shauni here – Yes, I am named after a Baywatch character. Blame my dad for that.
I’m 25 years old and live at home with my parents and five-years-younger brother. When he’s not at his dorm in Ghent, that is.
We live in a ‘fermette’ in Flanders, Belgium. That little country between the United Kingdom, France, The Netherlands, Germany and Luxembourg.
That also means I speak Flemish, which is Belgian Dutch. If you’re looking for a challenge, go for it !
When I was 15, I had a major health crash which left me unable to attend school the rest of the year.
I managed to graduate my three final years thanks to self-study and teachers coming home once a month. At a different school that was respectful for my limits.
Stubborn as I am, I tried to start my college studies in order to become a nurse. Even though I could only sit up for two hours at once at that point.
On the day of my first exam – I was 19 at this point – I lost consciousness as soon as I woke up and three times more during the exam itself until that teacher could no longer watch it.
That was it. I lost consciousness as soon as I sat up for five minutes for the next year and a half.
I got a tad better after stopping a treatment with negative impact, but up until today, six years since being forced to quit my dreams, I am still flat bedbound 22-23 hours a day.
Belgium is … well, there are no words for it really. I still don’t have an official diagnosis, ten years since the start. Sigh …
“You are too young to be sick” – “You just want to stay with your parents” – “Psychosomatic” – “Just walk for ten minutes today and then add then tomorrow and …” – I could keep on going unfortunately.
Luckily I have amazing parents who are not giving up on me. And if all goes well, I’ll see a geneticist in 2022. Fingers crossed !
I try to make my life worthwhile by being creative, spoiling my pets and making others online smile.
You might spot some of my creations or cute photographs on the weekly segments.
Thank you all for being my little ‘Far in Distance, but close to my heart’-family.
Lots of love
Shauni De Loose- Guest Moderator (Belgium)
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.