Yay! Home sweet home. What an scary 36 hours! Yesterday I had a funny and unusual turn that replicated some stroke like symptoms, fumbling, vaugness, slow speech, numbness and loss of function down left side. I thought I was exhausted from a big weekend so kept working. When I couldn’t remember who I had seen or what I had done I ended up calling my GP. Very scary for me and Riwai. We spent and hour with the GP and then were rushed up to ED for more tests. After a very long day was admitted at 11pm for more tests. All tests today were clear for any nasties. Today as the day went on I developed sensitivity to noise and light and had nausea. As my symptoms changed, others disappeared. This was a great sign as my team decided that what I had yesterday was a rouge or silent migraine, meaning a migraine with no headache.
Super fascinating, and relieved! Back to my GP on Friday to add a new oddity to my list of bits and bobs. So interested to learn more about this condition, how to minimise them, what causes them and what the future looks like.
Thank you everyone for being amazing. The amount of people who were part of my care today was incredible and as usual Riwai and I are truely grateful.
It has been a great relief for us both to be so supported today.
It is lovely to be home and ready to for the sleeping phase! Let’s hope a day of rest and back to normality is on the cards 😊
Ps also very pleased my words are back.. Most of the tears today were fear of the unknown and fear of losing how to articulate x
No matter how often I speak, I still get nervous! This one tougher than normal as it was so personal. My brief was to share with 120 people my story of how I received the Arthritis New Zealand Premier Award last month in Auckland. It was such an incredible honour to speak after dinner. I was able to weave my thanks and enormous gratitude in to my delivery. It is amazing to reflect on all the work I love. It was amazing to be able to share how I got to stand on the stage. It was wonderful to acknowledge my great nana, my nan and mum for all the knowledge they passed on to me. And I was able to thank with all my heart those who work behind the scenes including Arthritis New Zealand, my Rheumatology team, my incredible GP medical team, the drug companies and researchers who keep finding the next treatment to keep me mobile and active! Thank you also to my friends who stuck by me even in my darkest and confusing days, my family, my crew and of course my soul mate and partner in crime Riwai! The Arthritis NZ Premier Award is a team effort and definitely one of my life highlights 🙂
Incredible! I woke up this morning and for the first time in 13 years (almost to the day) there was no prednisone, codeine or tramadol in my hand. My methotrexate hangover was mild and my inflammation and morning stiffness only lasting an hour! Incredible…. I can handle the new swollen finger and the new pain in my shoulder, this is my body recovering from my fall a month ago, and the bursitis on my knee will mean I will still take my crutches out today…. Yet there is hope and that hope is what keeps you going.
Let’s face it; rheumatoid arthritis is a pretty crap disease, any arthritis is really. It’s not popular, doesn’t get much media, and when it comes to funding it is a struggle. Living the life you desire is seriously compromised. The impact the disease and medication side-effects has on day-day functioning, relationships, energy and living well is like being on a rollercoaster ride at the speed of the european autobahn, and without notice the highs can be wiped out like a high speed crash without warning!
That’s why you have to celebrate the good days and do what you can, when you can. The toughest part of the disease for me is never knowing what the morning will bring, the unpredictability causing the most distress as you can never fully commit to functions or plan too far in the future as that day might be one of the bad days.
I don’t want to bang on and compare my illness with anyone elses, and I certainly don’t want to get into a debate about which disease is worse to have. I just want to put it out there that when you get RA young it is like a double edged sword, it’s a relief because it won’t kill you and you have plenty of years to learn how to manage it, but it is also tough some days because for you and your support crew, those closest to you there is also no end. The unpredictability effects everyone around you too. It is tough for everyone and just as you work out your new normal something changes. Symptoms come and go in waves, working out the impact for you is challenging enough, but we also have to ask for help, this is tough and receiving help is tougher. Your support crew are willing but communicating with them your needs, especially if the symptoms are new this can be heartbreaking for you all. We must remember our support crew have no end either, and this is more challenging as we begin to look well but our functioning is still limited.
The good news is we are in one of the best technological ages and a future with RA looks brighter. When my Nana was diagnosed she was prescribed asprin and bed rest – 50 years on and I have been prescribed infusions and exercise. Around the world there are superdrugs, super research teams, rheumatologists, surgeons who are moving ahead with management plans for the disease – The positive changes have been phenomenal in my 20 years with the disease. I believe there is always something just around the corner to slow the progression, and make sure that I am not painfully destroying myself from within, the crutches give me independence and the wheelchair is far off in the distance! Who knows what medicine, my tenacity and the support of my A team will be able to accomplish by the time the wheelchair is needed – if at all!
Until then I am am off for brunch, to enjoy some time with my sister and hubbie! Two of my team that have been with me in through the tough times – lets use this window of feeling better to good use! …. Cease the Day Carpe Diem!
Ps Thanks for reading! You are all incredible and my hope for you is today you get to do something that makes you smile too!
Tonight is the eve of the 5th anniversary of our hometowns biggest disaster. In 2011 our lives changed forever. It is a strange feeling as for me there has been an incredible amount of sadness and frustration but this has been balanced with opportunity and clarity for what is important to me. This weekend we celebrated what is wonderful in our life and about our home city. We know tomorrow will be full of emotion. Five years on and we will all deal with this day in different ways. It is not for anyone to judge on what is right or wrong, it is deeply personal. For 185 families they will mourn with a nation the loss of a loved one, for many others the injuries they sustained and manage are a constant reminder of that dark day. For others life will never be the same, for others it will always be different, for some this is balanced with an new opportunities. Love those close to you, be ok with how you are, be ok with how others are. Remember to be kind to everyone and let everyone be as they need to be tomorrow. Riwai and I we send our love, smiles and hugs to everyone xx
Ok so Riwai was going to do a blog every week…. except this week with me in hospital and he has been working ridiculous long hours he actually asked me to write it…. That was never going to work because I write way differently to him and everyone would know it was me! So instead this is from me…. about us and our first Sunday Session…
It has been an amazing journey. Seven years ago Riwai and I had heard about a thing called a 20 Week Challenge. To be honest we thought it was for lycra clad gym junkies….We had no idea what it was or whether we should do it. After a family picnic we decided we formed a family group and entered our first series. You can read more here about my story here cates-20-week-story
Back in those days it ran twice a year, this year the series doesn’t start until May and we think that’s a bit long to hold off making life changes so for 2016 we decided to launch LeapStart and it just happens to be that Broni and her team have also come up with a new category – Early Start We think that’s pretty awesome, espeically after last week Riwai hitting the wall and getting started last week, he inspired me to take my bike in for a service so that after all my infusions (that blog is coming) we will both be LeapStarting!
We also had a second Flashback to 2010 – when it was my first year out as a PT. I used to work Sundays because I was working pretty much full time. Riwai and I decided that maybe I should do that again as we used to have so much fun. (Think I might do a poll of my LeapStars before I go back to work to see if there is any demand).
Anyway today is what Riwai calls his in between, the day before his night shift. He slept in and then we went ahead with our first Sunday Sesh as two of our old friends who supported us both when we started out were coming for lunch. They also both wanted to get back into training again and commit to the 20 Week Challenge. We had an awesome catch up but i had to put my PT hat on and cross some boundaries and we had our first 2016 Sunday Session. We were having discussions about the health, diet and fitness industry and how hard it can be to break habits of a lifetime. We also said how when you get into your 40’s being 60 is not that far away and how we often forget to celebrate all the little changes we have already made (especially since we began this career and life change in 2009). We decided that diets were out, fitbits were in, community of like minds was in, bootcamp and yelling was out and eating real and nourishing food was a definate goal of all of ours! We then talked about Nadia Lim, Jamie Oliver and Damon Gameau, What the Fat?, Sarah Wilson, and Nigel Latta on Sugar and realised that as two of us are diabetic, one a self- confessed sugar addict and me a food lover that we our first LeapStart mission would be to get back to nourishing basics (with their ideas and cookbooks) . So we are begin with a Nourishing Breakfast Club to get us going. We will keep you updated on our progress. It is so cool they are both back and the four of us will train and get healthy this year too. Riwai and I are stoked to be able to all catch up as a team and know we can all support each other.
Oh and he did to a VLOG
So if anyone else wants to get started early you can name your start date and the number of weeks you want to do between now until the start of this series in May.
Riwai decided that because it’s his 10th that he would give it for half price, I rolled my eyes a bit and could hear Lou (our office angel and money lady sighing too!) But you only live once and we want you to live a long time so LeapStart is for anyone who has signed up for the 2016 20 Week Body and Lifestyle Competition but wants to get started early! Sign up to LeapStart in January and Riwai is offering over 50% discount on our LeapStart packages this year to get you started on your 20 Weeks extra category! You can get $309 value for just $149.
Why because it is our 10th anniversary doing this great event and TutuMan and our LeapCrew are keen to support you all to kick start your 2016 year too! See more here about our VIP package
And besides after our lunch today we think LeapStart is a perfect way to get ready for the main event and be recognised for any of the milestones you achieve before the main event begins in May. The 20 Weeks main event is run through winter, when you’re least motivated, which means by the time you finish you’ll not only be in to win lots of awesome prizes you’ll be geared up to make the most of summer.
ps don’t forget we have trained over 100 people with finalists and category winners in each season we have been involved in. We know how to inspire and encourage you to be your best and really are excited about what this year will bring! Remember Riwai is toast when it comes to the offical stuff so if you want to do it make sure you email Lou and she will get it when she is back at work tomorrow – email@example.com and she will contact you to discuss options.
So it’s after midnight but this always happens after any treatment I get as I get a bit dose of IV steroids that lasts a day or so. The good news is I wanted to share a couple of very cool groups of super heroes, some I have never met but they have been rocks and supported me on more than one day this past six months. They are all heroes in my eyes read more on how they changed me life here..
Firstly the superheroes at the CDHB 🌟 and Surgical Day Unit 🌟 ! I counted 14 different people who came and advised me and made me feel comfortable at the odd anxious moment and completed the procedure quickly and smoothly. Three on the anaesthetic team, two consultants, one registrar, pre-op, surgical, recovery and post op nurses.. Not to mention the behind the scenes crew I never met! It was amazing and all of them are super heroes in my mind! Thank you.
So far (apart from the temporary insomnia ) I am feeling good . My Rheumatoid Arthritis flare means I qualify for another round of my magic treatment, it is pretty awesome that the NZ health system and treatments have come so far and are working for me to keep everything at bay physically so I feel we are leaping off to a great start of my 20 years of arthritis celebrations with another superhero Rheumatology and Immunology team at CDHB 🌟 .
The flip side of course is the emotional roller coaster still has its challenging days. So here is another group of super heroes I have never met but been rocks and supported me on more than one day this six months.
I feel blessed that following Jamie Oliver and his food revolution campaign in May 2015 that I discovered and became a part of an incredible community through the @YOU_APP. The amazing @YOU_team along with the ever inspirational @jamieoliver and all of the people involved make it such a positive, empowering and life changing experience. Those who already follow me know that 2016, has started out pretty challenging on the health front and I know that is largely because I give and give and forget to look after myself. After six years of hard work and dream chasing my hubbie (@tutumannz) and I opened our specialised wellness studio LeapHQ, empowering others with health conditions to leap2it! and discover their own life balance, and share their good news.
It’s been an amazing year and personally it had so much to do with this APP. During our NZ winter when usually I get sick I turned YOU actions to help keep my balanced. I became the wellest (doubt that’s even a word) energised and healthiest I had been in a decade thanks all the micro actions I did. One day my dream is to meet them and give them all a big thank you hug. They hopefully know how much they positively impacted on my life and how everything fits perfectly into my LEAP philosophies for loving life, enjoying exercise, appreciating all around YOU and participating positively. This year I am going to use the APP to record a one minute diary and most importantly I am no longer going to be selfish and keep this APP to myself! The world needs more of YOU to know about it and grow this community so we all live in a healthier, fitter. stronger, and happy place.
So all you wonderful people out there, thank you for being amazing and all sending well wishes. It really is a huge help to both of us when we face these blips on the radar.. I am home and relaxing, as I have a procedure under anaesthetic today for Endo. Am second on the surgery list for that so should be home and an on my feet in a couple of days. My RA treatment is all booked in for next Thursday.
It kinda blind sided us, this RA blip – if only my frequent flyer points for Chch hospital gave me a free flight to a tropical island ! One thing we are pleased about is that a still have a week off work and because I work from home these days will be feeling ready to Rock! by next week. All the medical teams think my work keeps me well so looking forward to getting back to it.
In fact November and December were so busy that I didn’t even realise I was in a flare of my rheumatoid arthritis.
The writing was on the wall if I stop and think about it; I had been so focussed on walking without my crutches, enjoying the Summer Starter, doing my hydrotherapy and land based Physio that I put the morning stiffness and aching muscles and joints down to me overdoing exercise.
My fatigue and restless sleep put down to planning our exciting year of Leap in 2016′ and negotiating back and forth with lawyers as another company have been quite silly and made a huge mistake (their words) and hoped we would fix it for free for them (that’s a whole new blog post and will be written when we can share it all, and when we get our heads everything without legally putting anyone in the firing line). Recurring contributing factor is definitely stress good or bad!
Also I was dropping things and knocking stuff over… I kept saying I had lost sensitivity in my hands and today the awesome medical team pointed out the fluid in my hands and wrists was quite significant.
Any pain they asked said… Not really I said. Until she squeezed them…… Good golly missed that sign too…
Then came the elbows….
“On they are fine” says I – “They are feeling really good and moving great.”..
Are you sure? Says the team….
As we could all hear creptis that would wake up the dead and it turns out my “wobbly arms isn’t fat deposits after all….. it’s fluid on the joint.
We decided maybe I was a little more flared than I thought as I realised I couldn’t lift my arms above my head without pain. Then I giggled a bit as I realised my shoulders had ‘t been that good for a month or so. Key Giveaway – I was sleeping in my bra again on riwais night shifts (because i can’t undo my bra or do it up before he gets home from work!)
One squeeze of my feet and we had shoes and socks off displaying sausage like shapes where I am sure my toes used to be and a beautiful red patchwork quilt of scaring and swirls and random vascular spots. We pushed on those too and I nearly let out a yelp! Back, knees hips … Bloody flaming Nora! Even my head and nail beds are inflamed.
So after at least 30 seconds of deliberating and checking the blood tests from three weeks ago, I was off got another blood test, booked in for my treatment – read more here about it … And hugs from all of the team (we have been together for over a decade!) and then quick discussion on meds and my ensuing operation tomorrow (that’s with my gynaecologist team for my endo – never a dull moment around here!
We were off home …..
In the car was quite weird as this flare really had blind sided us both, until today if anyone asked me how I was it would have been great, less than a week ago I walked over the hill from where we were staying to diamond harbour, yesterday I was down the beach over stones with no crutches.
We decided that bodies are incredible, this blip will be short lived I am sure! My willingness to cope with life’s curveballs and stay positive, keeping active and following my leap philosophies really has contributed to keeping the effects of this awful and debilitating disease at bay and my pain minimised…… That feels like a win… And so worth celebrating!
Thanks always for being part of this crazy journey
As 2015 comes to a close,it’s the perfect time to reflect on the last 12 months. This year was so busy it seemed to fly by and it’s hard to believe what we achieved in such a short time.
We worked alongside some amazing people this year, and as many doors closed some new ones opened and we were had great new opportunities, Setting up LeapHQ, closing out our EQC chapter, learning to live and enjoy our new home and keeping on top of my health definitely took up most of our time. There were plenty of “good golly what the @$&? have we done moments” and the “we are giving up moments” sometimes seemed the easy option..
However, as the year closes out we are so pleased we didn’t give up. Seeing LeapHQ come to life has been enormous challenge but a lifetime highlight. Creating a space that you, our LeapCrew, friends, family and Riwai and I love hanging out in has kept us focussed in those tough times. The icing has been having the studio and office at home allowed me to have a chance at a life goal of moving without crutches and our making our health more manageable – a gift money can not buy!
While on summer break I’ve been spending some time thinking about all of the lessons that I learned. Next year is 20 years since I was diagnosed with Arthritis, it is a Leap Year and we are also celebrating our 10th series involvement with the Catch Fitness 20 Week Challenge. (Where Leap and our incredible journey began in 2008!)
So much to share but with that said, here are five of the most important lessons we learned in 2015…
Stop Worrying. All our years of worrying and so far it has all turned out, and we have had some pretty big things to face! But we survived. 2015 was a turning point. Now anytime I feel myself in a worrying cycle, we stop and see if we can do something to change an outcome and DO it OR if it is out of our control STOP and BREATHE and remember just worrying won’t make a scrap of difference to the end result. Things don”t always go to plan but often it is the uncomfortable moments that we learn the most about ourselves and discover new opportunities.
Do what makes you happy! Life gets busy, chores and stuff gets in the way. But 2015 reminded us again that life is precious and for many people we know 2016 will not be the same. Some have had loved ones passed on or those near and dear to them facing new health challenges that stop them doing things they want in life. Don’t wait to Live! Live your life from now and create loads of memories that make you smile. There is so much research about positive psychology these days and 2015 reinforced that discovering what you enjoy doing and doing what makes you happy is a gift you must give yourself in 2016.
The greatest gift you can give is your time. We feel extremely fortunate to be surrounded by the people we have in our life. From family to friends, to our LeapCrew, and LeapTribe, we get to hang out with people that we love and trust. When you surround yourself with people who get you and let you be yourself, it makes all the difference. Making time to spend with those that fill your energy bucket is a priceless gift. We have the privilege to be surrounded by some of very talented and wonderful people. We encourage all of you to take stock in who really matters to you, who supports you no matter what, and who supports you being happy. Show those people how much they mean to you, and spend as much time with them as you can. Life is too short to settle for anything less. Ps Oh and while I am at it make sure you give yourself some of that time too! Spending time by yourself should be treasured and something I learnt I need to do regularly to have more to give others.
Giving Back is essential. We have been blessed to have good support throughout our lives, and for that Riwai and I are very grateful. We are also aware that there are many, many people who need support. And there’s nothing that makes us happier than being able to give back. Whether it’s working with our LeapTribe, creating with our LeapCrew, or neighbours we work with in our local community, the recipients of the TutuMan scholarships (for starting journeys off the couch), raising awareness of Endometriosis with the extraordinary team at Endometriosis NZ, being an positive voice for Arthritis NZ, cooking a meal at Ronald McdDonald House or taking a box of blankets for less fortunate furry four legged friends, lending a hand is a huge priority of ours. It truly brings us so much happiness reaching out and supporting others.
Celebrate your milestones, especially the small ones. There is no one like you in the world so embrace all that makes you unique and do the best you can do on the day. Keep smiling, relax and go at your own pace, If something feels overwhelming then break it down and focus on doing one thing really well, when you feel good about that one thing, move on to the next step! We did some pretty cool stuff this year. If we hadn’t recorded it or taken time to celebrate it would have all blended in and quickly been forgotten as we moved onto the next thing. By recording our milestones when the tough times hit I have been able to go back and refresh my memory bank with what we have already achieved! So the most important lesson for me this year was is when you achieve something that you are proud of stop for a moment, record it somehow and celebrate.
What are the most important lessons you’ve learned in 2015?
Now we would love to hear from you…
Much love, smiles and hugs Cate & Riwai
Ps Also, I just wanted to say thank you to each and every one of you who follows us, comes to leap2it.com and categrace.com and reads our blog posts. We feel blessed for the community and tribe we’ve built up over the years , and love being part of your journey to discovering and sharing your good news! You’re AWESOME!
Some thoughts as we enter the holiday season…It is important to remember that not everyone is looking forward to Christmas for a long list of reasons. Some people who are not surrounded by loved ones at this time, others who have extended families but will spend their time juggling visits and stop overs and trying to manage all these visits all on one day.
There are many in our community who face challenges during the festive break, are managing their sadness when we remember the loved ones who are not with us. For many, it will be their first Christmas without a particular loved one, or separated from their children due to custody decisions made along time before the day arrives. Many others lost loved ones at Christmas time, others have been separated because of circumstances that have happened this year.
For many people who have no one to spend these times with the can be besieged by loneliness. Those who are surrounded by others can also feel that same loneliness if there is no conversation or caring ear to share some good news with.
The world needs need caring, loving thoughts right now. Give a moment of support to all those who have family problems, health struggles, job issues, worries of any kind and just need to know that someone cares. Please do it for all of us, for nobody is immune. Take a moment out of our busy lives to offer everyone you meet a smile, a hug or a moment to share a story. Take time to say hi to your neighbours, let someone in the traffic or supermarket queue go in front of you. Take the kids to the playground even when you feel “busy”and most of all breathe!
Enjoy your lead up to this Christmas, start with connecting with someone you care about this week and giving them the greatest gift of all. It may only take a short moment to make a big impact.
Merry Everything and Happy always
We wish you a fun-filled, Christmas break with moments of new conversations and happy memories