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Chronic Illness Spotlight is a series in which different illnesses are highlighted and a person that lives with the illness is featured. Today’s post will spotlight a rare Bone Disease. It is so rare that it hasn’t been given a name!
Meet Sam Moss of My Medical Musings, Sam has several Chronic Illnesses, one that is so rare that it hasn’t been named yet. She also has Rheumatoid Arthritis, Sjogrens Syndrome, Trigeminal Neuralgia, a permanent Colostomy due to a severe rectal prolapse and a few other bits and pieces.
Sam is an advocate for others that have Chronic Illness and runs an active Chronic Illness Facebook Group. This Group is a support group to many, myself included.
Briefly explain your illness
My Rare Bone Disease causes my bone density to be too high and my bone turnover is too low. This results in pathological fractures of various bones throughout my body. My left femur snapped in two while walking to my bedroom in 2014 and remains broken 4 years on. My right femur developed a stress fracture in 2016. Both are held together with rods from hip to knee. I have constant foot fractures that don’t heal and it’s also caused severe cervical and lumbar spinal stenosis which has compressed my spinal cord. I’ve just had surgery on lumbar spine to try and correct that but at this stage it’s looking like it may have failed due to my bone disease complicating matters.
I’ve had my stoma since 2013 and it has been a lifesaver in relieving all the issues I had prior due to a severe internal rectal prolapse. I basically had a non functioning bowel and was incredibly sick as a result.
How has your illness impacted your life?
My chronic diseases have impacted my life in so many ways both good and not so good: I am now medically retired and walked away from a successful Executive Management career in Financial Services that I loved.
I have limited mobility and rely on crutches, a walker and a power scooter to mobilise, as well as my beautiful husband who is my full time carer.
I rarely leave my home due to the intensity of my pain from continuous broken bones, non healing fractures and widespread bone pain.
On the flip side, with time on my hands, I started my blog called “My Medical Musings”. I also began writing for The Mighty and other websites. I’ve always had a passion for writing and helping others. In my working life as a Leader, people management, mentoring and creating a positive team environment was my passion. Through my writing I have connected with so many inspiring people who are also finding ways to live well with chronic illness.
As my blog began to develop I had a crazy idea a support forum linked to my blog, may be a way of reaching out to more people. So on the 14th January 2017, Medical Musings With Friends was created. We now have 1600 plus members from all over the world and I have a team of 8 Moderators who assist me. It’s become my number one passion and it never ceases to amaze me how busy life has become, despite my disability and it doesn’t matter if I’m in bed or just sitting in my lounge chair, I can be helping others in some way. The connections are genuine and wonderful friendships are being formed which just warms my heart everyday.
How long did it take to get diagnosed?
My Bone Disease was diagnosed when my femur broke in 2014.
Rheumatoid Arthritis took a little longer, probably 5 years.
My non functioning bowel was diagnosed pretty quickly after a specialised test called a Defecography.
Why do you think it took that long to get a diagnosis?
In terms of Rheumatoid Arthritis my symptoms often mimicked Multiple Sclerosis so it was a confusing time for my Drs as well as me. I was also working full time and trying to ignore it as best I could until I became really ill while on holidays. My blood tests showed I had Ross River Virus and Q Fever but it turned out they were false positives. Blood tests eventually revealed anti CCP antibodies which are RA specific and I was immediately diagnosed at the point.
How is your life different now compared to a few years ago?
I was so active in my past life.
Working full time in a rat race environment.
My husband and I would go for long walks every day.
I was a Music Leader at our church.
We loved going on regular road trips.
We visited family and friends.
I loved to cook.
I loved going to the shopping mall every Saturday with my husband.
We loved trying out new cafes and restaurants and regularly visiting our favourite ones.
All of the above is no longer possible.
What do you do on you bad days to make them better?
I focus every day on what I can do. The blessings in my life. The love and companionship of my husband.
My blog, my forum. I love watching a favourite TV show on DVD on really bad days. I’ll chat to family or friends online. Anything that will help distract me from my pain. I’m a huge fan of distraction therapy.
How do you handle the isolation you may experience because of your chronic illness?
By finding a new way of living as I’ve discussed above. Replacing my old loves with new loves that are within my capabilities. Finding a new passion and purpose has honestly removed any sense of isolation. In all honesty I’ve got to the point where I probably need to create a little more quiet time as my days seem to fly by.
Feeling isolated is not a good thing when living with chronic illness. It’s really important to find ways to reach out to others and online friends through relevant support forums are a great starting place.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Be patient. Keep detailed records of your symptoms, when they started, how they affect you, if they’ve changed. Remember your Drs are human too and if one appointment goes badly, give them the opportunity to be better next time.
If you just don’t click with your Dr, get a new one. Also get a second opinion. It’s really ok to do that and it can help give you clarity in regards to the approach your Dr is taking.
If you have multiple Drs on your team, make sure they communicate with each other. Let them know the names of your other treating Doctors and ask them to write to each other. It really helps when our health is complex.
Please leave links to your blog and your social media.
Facebook Group: facebook.com/groups/1074726565969551/
I want to thank Sam for allowing me to tell her story about her rare Bone Disease. It is a complete honor to have her on The Frozen Mind. I consider her one of my friends and her story inspires many people that struggle with Chronic Illness.
If you have Chronic Illness and are looking for a support group, I highly recommend Sam’s Chronic Illness Facebook Group. This group has made a huge difference to me and is a part of my support system!
Read about other illnesses in the Series,