Medical Musings with Friends started in January 2017. I was resting one afternoon in my bedroom, contemplating the new year ahead & 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, Rheumatoid Arthritis, Permanent Colostomy due to a bowel prolapse, Fibromyalgia, Sjogrens Syndrome, Trigeminal Neuralgia, an inflammatory nerve disease, Scoliosis & Severe Degenerative Disc 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 & rare diseases it could be an extension of my blog. A place where a few people could gather to provide support & 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 & understand your struggles. A place where other chronic illness bloggers & writers could share their work & words of wisdom.
A few people, maybe 50, or so I thought.
6 months later we have over 1300 members & I’m assisted by 7 moderators.
Unbelievable!! What a blessing, what a purpose, what an honour & privilege, to be trusted to provide such a large group of people a place to find true friendship, support & 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 & commitment in joining me in this crazy musings journey. They are just the best, most warmest, caring people you could meet & 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 for “The Mighty”.
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. 😘😘
Hello there my name is Dave, I’ve been married for 9 years, my wife and I have a 7 year old daughter as well as a 5 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.
I’m originally from Southern Ontario, Canada, but moved to England almost 7 years ago, where I met my husband. I used to teach, and gained a MSc in Psychology, hoping to move into a field I could handle with my health. I’m not able to work right now though. I love tea, music, literature and writing, dogs, making cards, and I’ve recently started painting!
I have chronic pain issues, gastroparesis, and migraines with brainstem aura (basilar).
My name is Chris and I was diagnosed with RA about 7 years ago. I have worked as a Workforce Planner for the last 12 years.
I enjoy drawing, making cards using the parchment craft technique, and writing to pen friends. I have been teaching myself to play the violin for the last year. I enjoy relaxing with a nice cup of tea outside in my garden with my wonderful husband Bernie.
We live in Oakey, a small country town in QLD Australia and we have 5 children, 5 grandchildren a cat and 3 birds. My favorite quote is “It is never wrong to do the right thing” by Mark Twain.
Hi, I’m a wife and a mum to two busy boys and one spoilt (but adored) black labrador. I am living with RA and osteoporosis. We moved up to Central Qld from Hobart in 2007. We have now settled on the Sunshine Coast. I am an avid reader, a card maker and scrapbooker, a classically trained pianist and enjoy writing my own blog. I have my own craft business. I love travel, photography and am a history buff.
I love the MMWF as it’s a safe and supportive place to share with people from around the world who are battling various health circumstances. I was honoured to be asked, by Sam, to be a Moderator with the forum as it is an awe inspiring and humbling place to gain ideas, respect, knowledge and friendship.
Hi Musers, I’m Courtney and I live in North East Victoria. I have Crohns (with an ileostomy) and Fibromyalgia. My loves include dogs, tea and my family. I try and live by the motto of ‘laughter is the best medicine’❣
My name is Brigitte but everyone calls me Brig. I have 3 kids (2 teenagers and a tween going on twenty!)
I am generally a positive person, even though I deal with multiple health problems on a daily basis (including a Colostomy named Rosie, insulin dependent Type 2 Diabetes, Anxiety/Depression and the aftermath of Pulmonary Embolisms and an Ischemic Stroke).
Up until 2 years ago, I worked as a Support Teacher specialising in learning support and special education. I absolutely loved it, but I became too unwell and was spending a lot of time in hospital.
I love to make others laugh and have been told I have a cheeky sense of humour. I also enjoy arts and crafts, board games, adding to my owl collection and listening to music.
I feel very blessed and proud to be a part of this awe-inspiring group, I think you’re all so brave and amazing. Thank you for entrusting us with your stories and I look forward to getting to know you all.
If you’re looking for genuine support, care, understanding & 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 & may benefit from 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 to read a little more about me here’s the link to My Story
I’m also a Contributor at “The Mighty”