With only a handful of Confessions left I’ll be posting twice a week, starting today! Apologies for being MIA recently, a lot of other commitments recently but I’m trying to get back on top of blogging so hopefully you will be seeing more from me once these events come to an end. Anyway, enough about that, come take a read of Sam’s Confessions!
In 2014 I medically retired from a successful Executive Management career in financial services, due to a disabling rare bone disease diagnosis, Rheumatoid Arthritis and I have a permanent colostomy. When health gets complex, I’ve come to realize it is really important to find others who are also battling multiple issues, to share the never-ending complexities that arise.
So after medically retiring I started blogging as a way to capture my musings and I also set up an online support forum for women, men or carers, who are just wanting the hand of friendship as they journey an often lonely and difficult path, living with the effects of chronic disease. Both my blog, “My Medical Musings” and online support group, “Medical Musings with Friends”, are a place to laugh, cry, share and vent together.
I am also an ongoing contributor to “The Mighty” and a proud member of the Chronic Illness Bloggers Network
Connect with Me!
What condition/s do you suffer from and when were you diagnosed?
1. Rare Genetic Bone Disease (resulting in pathological fractures of both my mid shaft femurs which are not able to heal plus constant foot fractures). My bone density is too high & my bone turnover is almost negligible. While my disease is idiopathic in nature, (disease of its own kind) it most closely resembles the rare bone disease Osteopetrosis
2. Rheumatoid Arthritis & Secondary Sjogrens Syndrome
3. Permanent Colostomy due to non-functioning bowel/ severe bowel prolapse
Age at Diagnosis/Diagnoses:
1. Rare Bone Disease diagnosed age 49
2. Rheumatoid Arthritis diagnosed age 45
3. Permanent Colostomy age 48
What are the main symptoms you suffer from?
- Widespread Chronic Pain ( Joints and bone)
- Continuous non healing broken bones – Both Femurs and feet
- Extreme Dry Eyes with scarred corneas, Dry Mouth, swollen and blocked salivary glands
What 3 things have you learned about your condition since being diagnosed?
(I’ll answer in regards to my Bone Disease)
1. It has an unknown prognosis
2. It has no cure and no treatment
3. It is a rare genetic disease that is likely congenital and due to a mutant gene
In what way has the NHS supported or not supported you?
N/A. I live in Australia. We are supported by our Government funded Medicare Program and Pharmaceutical Benefits Scheme. This covers us under the Public System for Hospital and Specialist treatment and subsidies our PBS approved medications.
I also have Private Health Insurance which means I can choose which Specialists I want to see, have minimal waiting time and can attend Private Hospitals. I only pay a small gap for Specialist visits and a small excess for Private Hospital admissions
What is the hardest part about your illness, in your opinion?
My biggest challenge is my bone disease & not knowing when another bone may completely break or a stress fracture appear. It is like living with a time bomb ticking in the background.
List some phrases you hate hearing off other people about your condition.
1. “Hope you are feeling better“
2. “Hope your next surgery fixes everything for you“
List some things you wish people would say/do instead.
1. “How has your day been?”
2. “What are the benefits of this surgery?”
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Pace, pace, pace!
I used to live life at such a fast speed managing a successful career & home life. I loved every minute of it but when chronic illness & disease strikes, you just cannot live the same way.
Today I am incredibly limited in what I can do physically & spend most of my time at home apart from medical appointments. I do like to still care for my home though. My husband is my full-time carer so he cooks & does the washing & heavy cleaning but I still potter with dusting & cleaning ( crutches can be very useful for lots of cleaning activities 😊). I just have to pace. 10 mins of activity, 30 mins rest. It’s amazing how much you can achieve even in those short bursts with 2 broken legs!!
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
- I reach out to others which removes the focus on my own health issues. I started my blog in 2015 after I medically retired called “My Medical Musings”.
- I have started an online Facebook support forum in January 2017, on the back of my blog called “Medical Musings with Friends” for people living with chronic & complex diseases to laugh, cry, share and vent together.
- I am also a volunteer online support forum administrator for Arthritis Queensland. This is an Australian charitable organisation set up to support people living with arthritis & to raise awareness of the different arthritic diseases affecting children & adults.
- I’ve recently just been accepted as an ongoing contributor for “The Mighty”
- I basically try to keep my brain active. I read, I listen to music, I talk to friends, I research whatever I’m interested in at any point in time, I keep up with current affairs, I play games on my tablet. An exercised brain makes me feel healthier, particularly if I can’t exercise my body!
What do you do? Work, study?
I am medically retired on a disability pension but pretty busy with my writing and support forum activities
What are you plans for the future?
My health really prevents me from making plans. I know I have ongoing major surgeries ahead and face the daily prospect of more broken bones. So, my main plans are to continue blogging and connecting with as many people as possible who are journeying a similar path through my online support forum. I would also love to write a book one day
Is there anything you would do differently since being diagnosed, and why?
Not really. My only regret is buying a home when I medically retired with stairs. I now have a stair lift installed thankfully but with hindsight a low-level home would have been a lot more practical
Has your illness taught you anything about life?
The simple things in life are beautiful. Fresh air blowing on your face, time spent with my husband watching a favorite TV show, watching a flower bloom in my garden, enjoying rain falling on my rooftop or watching a storm role in or the sun setting, connecting with people in need. These are some of the special and precious things in life that I enjoy now more than ever before.
What advice/information do you wish you were told when you were first diagnosed?
I have been really blessed with a team of Specialists who worked out very early on that my health was complex and didn’t fit into any easy diagnosis. They were open and honest with me and we all quickly started working as a team. I know they genuinely care and I am so grateful for that as I also know it is rare to have that kind of Doctor/Patient relationship.
What would be your main piece of advice for people who have just been diagnosed with your condition?
Hang in there, life will still be rich & rewarding. Good things still lie ahead.
- TOMORROW & SATURDAY I will be taking over Amy’s blog to post her next Confessions of a Spoonie guest blog post so head on over and take a look!
- On SATURDAY it’s back over to my blog where I will be publishing another Confessions of a Spoonie due to not relieving a lot of responses for the other event.
- Then on SUNDAY it’s back over the Amy’s blog for my take over and another Confessions of a Spoonie going live.