Wednesday, 27 July 2016

Learning to Live Again - Lessons from RA

Well kids it appears I’m back! For long time listeners of my podcasts and members of my old website (don’t bother searching for it – it no longer exists) it’s been a long time between drinks as they say. The last time I reached out to you was in January 2014 and a lot has transpired since then. And I guess you’re wondering ‘what the heck happened to her?’ and the answer is too much to tell in this one blog so I’ll start with just this one thing.

In September 2014 I was diagnosed with aggressive Rheumatoid Arthritis and for those of you who know what that it is, I know you’ll be feeling for me right now. Fortunately it’s under control now and I’m in remission with only the occasional bad day, which I’ve since learnt to manage. For those of you who aren’t familiar with RA (as those in the know call it), it’s an autoimmune disease that can turn a once vibrant, lithe and energetic woman like me into a shadow of my former self.

I’d had recurring bouts of bursitis and some weird crampy things going on in a few joints for about 2 years prior to the diagnosis, which I’d just put down to stress. We’d been going through a bit of financial stuff and my mum had been diagnosed with a brain tumour and I had a baby still on the breast. So when I woke up one morning in July 2014 and my fingers wouldn’t extend like normal, I freaked out. We’d just moved back to Sydney so I thought it could’ve been from all of the packing and unpacking and dismissed it as such, until it kept happening.

In what seemed like the blink of an eye my whole body started to betray me. Wrists, elbows, shoulder, knees, ankles – they all kept seizing up and I was in diabolical pain. I kept my condition secret for a long time and just pumped up on the pain-killers to keep up appearances. Thankfully my work was such that I could be flexible and I just started working more and more from home, limiting my days in the office to once or twice a week. My brain was still perfect but my body was severely letting me down. 

I didn’t want to accept the diagnosis and went into a typical ‘this can’t be happening to me’ phase.

I decided I could beat it with all my knowledge of healthy eating, alkalizing, antioxidising and meditation. I stepped up my sauna and prayer rituals, went to a Chinese herbalist, took a bucket load of natural supplements and did everything to stay in a state of gratitude but to no avail. Finally after about eight months when I could no longer walk for more than a few meters, was unable to raise my arms high enough to wash or comb my own hair, my joints and body swollen like a balloon, desperately sleep deprived, I had to come to a place of acceptance. I remember clearly the day when I bit the bullet and decided to go back to my Rheumatologist.

 I was languishing on the couch in absolute agony when my then 4 year-old son came over to give me a hug. His gentle touch on my arm was like a fire poker glowing at full steam, and I winced and screamed out in pain. “Mummy, will you ever get better again so we can hug properly?” That was it! My life long distrust of pharmaceuticals had to come to an end and I realized that I needed to do whatever it took to rejoin the productive and functioning part of the human race.

To cut a long story short, I’m now on weekly Methotrexate injections, Arava and Prednisolone. I’ve managed to reduce my Prednisolone down to 2mg a day from the original 10mg and my body is finally returning to normal. When I first started on the treatment regime, I gained 10 kilograms in what seemed like a heartbeat. I couldn’t fit into any of my clothes or shoes for that matter, my face had puffed out and my hair started to fall out in handfuls. I used to joke with close friends and family that I couldn’t go out before because I couldn’t walk and now I didn’t want to go out because I looked like a mess!

Every day now as I have done since the diagnosis, I take magnesium, high potency Vitamin C, Vitamin B and astaxanthin. Almost every meal has some combination of turmeric, garlic, ginger, capsicum, cumin, fennel, greens, greens and more greens. I use my infrared sauna as often as possible, meditate, get Vitamin D from small doses of natural sunlight and keep up with the inner gratitude work. And the funny thing is I actually am grateful now for the RA as it’s given me a whole new perspective on what living actually means. Sure I was compassionate before, sure I had empathy for others, I was a kind, decent, loving human being but the RA has made me an even bigger, better person.

As an example, I used to get really frustrated with ‘slow-walkers’ as I had knick-named them. I’d think to myself ‘stop schlepping about and get a move on, walk as if you have purpose, stop shuffling along’ until that one day I had become a slow-walker myself. As I shuffled slowly up the hill for my weekly GP visit, each step an agonizing feat of will, chanting to myself ‘you can do it, you can do it’ with each footstep, I realized the obvious. Not everyone who walks slowly is doing so because they have no purpose, or because they’re lazy. 

I said a silent apology to every person I’d every admonished in my mind and felt a humility like never before. I was deeply ashamed of myself for being so quick to judge and felt embarrassed that I had never realized the small ways in which each one of us can be haughty and unfeeling.

Thankfully now I’ve regained my quick step but each day is a gift that I can truly treasure. When we are put into a position of simply being grateful for the smallest things, like moving without having to will our feet to take the next step, the achievements in our lives take on a far greater depth of meaning. Like being able to dance again! What an absolute thrill that day was when on New Years Eve 2015 we danced up a storm and I felt the freedom of a bird in flight. You can only imagine the joy I feel when all three of my kids can now scramble all over me and hug me all at the same time. I can run, work a 12 hour day, cook up a storm and I feel stronger than ever before. I just need to listen to my body and take it easy when the early warning signs appear.

I looked in the mirror today and saw my old facial features returning, my hair starting to thicken out again and low and behold I actually fit back into a pair of the jeans that had sat lonely in my cupboard for over two years. What had not so long ago felt like a descent into hell has actually turned out to be a gift from heaven; the gift of being able to feel true gratitude at simply learning to live again, laugh again, dream again.

And to close today’s blog I’d just like to share one more thing. When I started uROk back in 2002 I argued with my team that it had to be about You not Me. They all insisted it had to be about me so that I could connect with you on a deeper level. I never wanted to be a guru or have people ‘follow’ me. I wanted to help others connect with their own inner strength. I didn’t see myself as a role model. I felt inadequate to put myself up there as that. I didn’t want you to ‘do as I do’ but to do what’s right for you, to follow your heart and find your own inner light.

I’ve now come to understand that by sharing my stories, my less than perfect self (which by the way is imperfectly, perfectly me), my struggles and my pain, that in some small way, it does help you to find the way back home to yourself. To reconnect with that part of you that is more than just your body, your job, your family, your bank balance or any of that other stuff. That part of you that is uniquely, wonderfully you.

So fellow travellers on this magnificent journey called life please know that whatever ‘happens’ to you, in every moment there really is a choice and you can make it at any time and learn to live again, believe again, dream again. Small steps in the right direction are all you need to take. It’s working for me and I’m back, so please feel free to post your comments and I’ll be here for you to laugh with, cry with, hold your hand, lend an ear or share a shoulder.

Until next time love and light,



  1. WOW! Omg Sista!
    What a trial! And what brilliant and powerful breakthroughs on your way back to full and vibrant health! You inspire me so much!

    Your diet and supplementation sound good
    Did you have blood tests to determine what you're needing?
    Something we've discovered recently is Beta-Glucans. It's the most kick-arse immune system support ever! (if you decide to try it out, make sure you get either the mushroom or algal varieties). And our friend Christian is doing some exciting work with plant and algal based stem cell mobilizers. I can send you info if you're interested  
    Also, unless you're getting about 20 minutes of full body sun each day, you're probably not getting enough Vitamin D and it would be good to add a good Vitamin D supplement (it's a nutrient most of us are deficient in and deficiency wreaks havoc with our health)

    A huge painless hug and much love from Austin, Texas

    1. Dearest Jag,

      I loved your last line and in fact your whole response - and you my silver angel - you inspire me so much too. I love vicariously living through your many adventures and I'm so honoured to share in all your discoveries and benefit from them personally.

      Your 'work' is so important to the many sistas out there who don't have the time, passion, access or keen observation skills that you do to scour our beautiful peoples for those who have knowledge to disseminate. I love you for all that you do and for all that you are.

      Please continue to share your knowledge through every means possible and please do post anything you may find relevant and useful to readers of this blog. In gratitude and blessings.

    2. And for those readers wondering what I thought of Jag's advice?

      Yes, I have monthly blood tests to monitor predominantly my ESR and CRP levels (both are inflammatory markers in conjunction with monitoring the standard suite of blood tests. Part of the side effects of the medications mean you have to accept some comprises elsewhere in the body which is why I initially rejected the pharma solution. When it comes to a choice between functioning like a 90 year woman in bad shape and doing a bit of slow but long term damage elsewhere, well until I find a better solution that's the route I'm taking. That said, I'm very fortunate that the medications haven't affected the health of any of my other organs. RA is much more than the agonising body aches, pains and disability; it can spread to organs and skin. Some sufferers get it in the lungs and die from it. Others are affected by large, raw lesions over the body. It really is a mean disease and it's silent and invisible which makes it all the more insidious. But enough about that for now, I'm getting a bit depressed!

      Re Vitamin D - I totally concur and I think the anti-sun campaign that's raged to support the billion (pharmaceutical) sunscreen industry has a lot to answer for. The negative impacts on the body from Vit D are numerous and debilitating and it's a travesty that are elders are not getting out doors enough and there is no real recognition of this fact from the traditional health space. So yes, I do supplement with Vit D caps if I can't get my requisite sunshine. I'm blessed to have both a big front timber veranda with a nature window framed in flowering vine where the morning sun dazzles and my sauna resides and a back sandstone terrace where the afternoon sun heats up the bones on a cold winters day.

      Beta-Glucans - please share here more.

      The algae work fascinates me and please do share more of Christian's work here too. Last year through my client Global Prime/Gleneagle, we did some private equity fund raising for a company that has gone into algae work in Texas of all places. They are creating shallow basin like arrangements over the unique land composition of Texas and growing the algae for products such as Astaxanthin supplements and such - all in a natural bio friendly way.

      Apologies if my response was a bit long for some people, but the aim of my blog here is to get as many resources out to sufferers as possible. The stats on RA are awful! Many more women than men, women who've experienced early menopause, people with periodontal issues and as I said earlier it is a particularly vindictive disease but it can be managed.

      Look forward to your next round of wisdom darling heart.

    3. BTW: I meant negative impacts on the body from Vitamin D deficiency.

  2. What a heart-wrenching and heart-warming story Sari! I'm so happy to hear you're back to your best self. You've always been a role model of mine, whether you like it or not ! ;-) Hope we can catch up soon. xx Jessi

    1. Jess you inspire me too. To have watched your career progress over all these years, to see you become a beautiful woman and amazing mother - I often coo to myself like a proud mother hen lol! Let's make a date for that long overdue coffee? I'll pm you. Be well my shining star - see you soon. xox

  3. This morning I received the most beautiful video message by PM from a man with RA encouraging me to keep my chin up.. He is riddled with bone deformities as a result of the RA and yet still finds ways to be grateful and takes strength from his six children. Very humbling. I did go through my very dark and sad days as I struggled to accept the diagnosis but they now feel like a lifetime ago. Each new day now is a blessing and those sad days merely a ghostly memory.

  4. You're a beautiful girl. I used to be annoyed, or amused actually at people wearing sunglasses inside at shopping centres. Then in August 2012 I was diagnosed with Open Angled Chronic Glaucoma and my extreme sensitivity to light and glare made sense. And I sometimes became one of those annoying, amusing people that wore their sunglasses inside. Not often, but some places have HUGE skylights. I generally try to walk right beside the shop, so as not to walk into the light, but it's it's not avoidable, I'll whip the sunnies on. I'm also the girl that wears sunnies on the overcast days, people look thinking 'But it's not sunny' and their right. But there is so much glare. Almost as bad as direct sunlight.
    I also used to find it funny that people would wear gloves inside, or in the warmer months. But in October 2014 a persistent pain in my right thumb saw me have a Bone Scan. Bright red spots lit up both my entire hands. Arthritis. Not RA like you. But both my hands and wrists are riddled with it. I found that strange because at that point I was only symptomatic in that right thumb. Right now though almost two years later, it's my right thumb, right little finger, left thumb and left index fingers, and both wrists. Struggling. I work within the Court Process office of a VERY busy Police Command. I'm handling charge folders for crooks each and every day, picking them up, moving them around, sorting through mountains of paperwork for each of them. Each new niggling pain reminds me that this condition is here to stay. I too now wear gloves to keep my joints a little warmer.

    I won't look at anyone out of the ordinary anymore, because maybe they just have a story to tell that I don't know about.

    We all have to walk through some darkness to get to the sunlight. I just happen to walk through mine with prescription sunglasses on, lol.

    Be well you beautiful creature xxx

    1. Thank you so much for sharing your story Lei. It just goes to highlight further that we each have a story and most of us don't tell it publicly. So many suffer in silence and the more we share the more compassion and understanding we promote in the world. Plus it's a bit rock star to wear your sunnies inside anyway!