Facing Forward: Sam

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Sam

Location: Brisbane, Queensland, Australia

Diagnoses/Age at Diagnoses:

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

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

How are you currently treating your conditions?

My rare bone disease is progressive & unfortunately has no treatment or cure. I am under the care of an Orthopaedic Surgeon who operates on broken bones & reviews my non-union femur break every 3 to 6 months. He is also on call for me in case of emergencies, which gives my husband & I great peace of mind. I am also under the care of an Endocrinologist who monitors my bone disease progression through 6 monthly bone marker blood tests & bone density tests.

My Rheumatoid Arthritis is managed reasonably well with medication. I have had severe reactions to many RA meds, so my mainstay is Prednisone & Plaquenil. I used to love gentle exercise to help manage my RA but now having 2 broken legs & my physical disability increasing, that part of my treatment is no longer possible.

My colostomy was actually a blessing (as surprising as that may sound). The pain I had prior due to my bowel prolapse & resulting non-functioning bowel, was horrendous. My stoma (affectionately nicknamed Rudolph) has been an absolute lifesaver.

What are the biggest challenges you have faced since your diagnosis?

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.

What are your favorite tips and tricks for managing everyday 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, 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!!

How do you manage to keep facing forward every day?

I have been asked this question many times. Friends and acquaintances are always so relieved when they see me in person, as I look so normal. I don’t look sick and some of that is due to my coping mechanisms! It has also been well documented about the fact that autoimmune diseases, in general, don’t cause a person to look sick. In fact Rheumatoid Arthritis joint damage can take years to show. My bone disease is a bit of a giveaway due to crutches & a very weird walk if I try stepping forward without them.

So how do I cope when I have Rheumatoid Arthritis, a stoma, pathological broken femurs as a result of an idiopathic bone disease that makes future bone breaks a real possibility?  Aside from acceptance of my circumstances, there is a mix of practical and spiritual coping mechanisms that I have:

I might not be working anymore but I still take the time each and every day to get up, get showered and dressed, and do my hair and makeup. Ensuring I stick to this normal routine is incredibly important to my overall sense of well-being. I don’t have a set time to do that every morning, as some mornings my body just won’t move or function until after my morning medication has kicked in, but that aside I still make sure I keep to my daily routine and look after myself. I feel so much better if I do that.

I 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 and I write/blog. An exercised brain makes me feel healthier, particularly if I can’t exercise my body!

I’ve always loved shopping but no longer have the energy or desire to spend hours at shopping centres, but I love to shop online. Retail therapy really does work when all else fails! Maybe it’s a girl thing!!

I also reach out to others, which removes the focus on my health. I have an online support forum on the back of my blog for people living with chronic & complex diseases & I am also a volunteer online support forum administrator for Arthritis Queensland. This is an Australian charitable organization set up to support people living with arthritis & to raise awareness of the different arthritic diseases affecting children & adults. They also raise funds for important research.

I also have a strong faith in God. In the midst of the lost dreams and physical battles that I’ve faced over the past few years, one thing I can absolutely testify to is knowing that God’s hand is on my life, and not just in regards to my health but in all aspects of my life. I have a personal faith and as a Christian I find great peace in prayer and in knowing that I am never alone. My health has prevented me from being able to attend church over the past 3 years, and that is a real loss for me. But even when my husband heads off to church on a Sunday morning (he’s an Anglican Clergyman), I use the time to quietly reflect and renew my soul.  I know that caring for my spiritual life is the key to my ability to cope.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

Hang in there, life will still be rich & rewarding. Good things still lie ahead.

Do you have a blog you would like to share?

Yes, my blog is called My Medical Musings. I also have my online support forum, which is a closed Facebook group for anyone with a chronic & complex disease looking for a safe place to find support & friendship. Chronic Illness bloggers are also welcome to join & post their blog links. A warm welcome awaits.

  

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.