Health Challenges

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You learn to love every good second, every good minute, of any of those few good days you might have. You know it’s not important to dwell on the little things. You have more important things to worry about.   Being sick makes you weak. Being sick makes you strong.  Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. Some days it feels like that fight will never end.

Last week I was honoured to share a patients perspective to a community who may otherwise have never known the impact the work they do has on my wellness.   I spoke to some of the globes leading stars on the final day of conference for one of the drug companies that provides me with my life changing treatments.

It heard myself sharing that I was on the big river of DeNile for again.  That means that medically I am unwell again, yet I have been shoving all signs under a big carpet hoping I won’t trip up on it…..

The truth is that  that every winter I cruise down this river pretending I am normal and not that sick.  I thought it worked well for the most part but for the last few weeks the winter nights and reliance on others to function has been taking it’s toll.   The thing is with chronic health is that there is no end, loved ones have no finish, friends get sick of us cancelling last minute, we get sick of missing out.     Today I had to cancel some exciting catch ups I had planned because my health is telling me I need to save my spoons (see below) for other things… It sucks and I have been feeling frustrated that my health is taking a dip…

Social activities are constantly analysed for timing, carparking, noise levels, cancellation policies,  finish times, long range weather, accessibility, room temperature, seating arrangements, when to take meds so you aren’t sleeping at dessert, what clothes to wear, can you get to the toilet without help, have I rested enough to fight off any bugs, hows my immune system doing, ….. oh the list goes on and on…………  Getting ready is no longer a five minute job, you have to think about clothing fastners, shoe choice, comfortable clothes and still make time for hair and makeup!  For those with chronic health a simple dinner with friends seems overwhelming.

The flow on effect for loved ones is this whole chronic health business seems relentless. My heart goes out to all our incredible carers, most days I believe they are most affected, as they watch their loved ones pain, with deteriorating function, and no end in sight.   It is like a spaghetti junction with everything crossing over and medical teams offering little relief to the emotions that go with this.  Our medical team job is to keep us alive, prolonging our deterioration as much as possible, while we with our loved ones attempt to keep our heads and hearts in balance as our quality of life is diminishing.

It is so damn harrowing, frustrating and incredibly sad.   For the short term I am back on my crutches, booked in for a booster infusion and avoided any hospital admissions, I am being compliant and enjoying regular physio while I get this flare undercontrol…. I know I have the right medical team and a kick ass support team on my side.

Huge thanks again to my support team this week who have kept my head above water, I am excited to have booked a beach retreat break away in July and spending time focussing on what I can do!  The most important thing for me at the moment is to continue to do the work I love, in the controlled environment that allows me to function!    So there is hope, I will be ok with saying No so I can do the best I can everyday, with the energy I have, then I can go to bed feeling satisfied I gave the day everything I had!  That will keep me smiling and focusing on what I can do, and allow me to reflect on at least one awesome thing I acheived… Like today biking to my hairdresser and then taking my dog for his first every bike ride in a basket to visit my mum.

Smiles and Hugs to everyone who takes time to read this…

My blog has always been a way to relax my mind by getting it all out in black in white

 

THE SPOON THEORY
Early in my RA diagnosis I stumbled across the Spoon Theory.  It is one of those blogs I found in the middle of a pain and insomnia crusade – you know those nights where the meds aren’t kicking in and you find yourself drifting to your online supports around the globe for inspiration and validation that’s this too shall pass… 

It is one of those theories that keeps me sane when at this time of year I am struggling to keep my head above water as my head is rearing to go and my body isn’t playing ball…

It is well worth a read. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

Wikipedia helps me explain it – The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are widely discussed within autoimmune, disability, and other chronic illness communities.  Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses don’t need to worry about running out.[1]Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people just to get through the day.[2]

 

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How delightful to be interviewed today by the lovely Carly Flynn on Saturday Fresh,  Saturday Fresh on Radio Live Saturday 10AM – 2PM

Saturday Fresh
Ideas for everyday living with Carly Flynn – a great place to go for useful and inspiring ideas to help make life just that little bit easier.  Great recipes, tips on home life, time savers, travel advice, new home products, cosmetics and beauty advise, health and well being, mindfulness – Saturday Fresh has it all covered.

 

Here is a link to the interview today with myself and Sandra Kirby, CEO of Arthritis NZ

Living with Arthritis – Radio Live Interview 19.03.2016 with Cate Grace & Arthritis NZ

And seven of my tips for starting to manage your Arthritis for a positive and happy life!

  1. Be Ok with asking for help and get a team around you including medical people, an Arthritis Educator fron Arthritis NZ, friends and family, and support person (especially for appointments).
  2. Book in regular friends and family dates where you and loved ones agree not only focus on your illness
  3. Focus on what your body does well – stop beating yourself up for what it doesn’t
  4. Hang out by yourself doing things you like doing
  5. Give yourself pat on the back for all you did well today
  6. Drink more water; hydration is a great pain killer
  7. Move more – start with a few minutes, build up to exercise snacks and focus on what you can do not what you can’t

Keep practicing on your positive mindset
I believe it is the best the way to cope
for there’s no arthritis cure… yet
but there’s a lot that can be done
many small steps lead to big possibilities
and if you positively embrace life with arthritis you can achieve all that you desire

 

Smiles for a fabulous day & rest of your weekend

Cate x

 

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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!

C x

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What a SUPER day it turned out to be..

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.

Introducing YOU App..

 

making sustainable changes on day at a time

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 for 2016 I highly recommend you download https://you-app.com, follow their blog and be apart of something great 🌟 and while you we are on the subject of super heroes you can not go  past a look at Jamie Oliver’s new book Everyday Super Food 🌟  or his blog to learn more here http://www.jamieoliver.com/healthier-happier-you/

12:45am and yay! Finally a yawn x

Happy lunching northern friends

Good night down under friends

Smiles and Hugs

Cx

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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

Hugs and smiles

Cate x

 

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It really was a year ago that I 20140804-151728-55048596.jpghad the treatment but as I walk in today it feels more like yesterday.    Maybe because last week was Rheumatology and on Tuesday I was here for more Respiratory Tests.   I was discharged from ENT and referred to Speech Language just to check my swallow.    I sure feel like I deserve a VIP pass or maybe valet parking this week!   The nurses look at me like why are you here.    Maybe its my smile – one actually says you don’t look sick enough to be here.    I take it as a compliment but by the end of the day I am tending to agree with her.   My pain becomes far more tolerable when I remember I am surrounded by cancer patients.   It doens’t stop my veins collapsing though…. It is the first time I can remember that  my veins are not playing the game and after three goes we have some action.  I just can’t get comfortable and end up moving chairs as many times as we try for a blood site.   All first world problems compared to the lady across from me who can’t get her meds because of some sort of blockage.   The staff are amazing and without much fuss have founI am awesomed her a solution.     My  taste disappears within the first few hours and have been told that it maybe more to do with the high dose of prednisone not the treatment.    I guess that is good news.   I will stay on the prednisone for  the month.

I keep feeling blessed and remember that my side effects are no taste, lack of sleep and creativity.    If I can get this inflammation down and the pain to stop then the minor side effects are worth it.    So the  flushing is done and 8 hours later we are heading home.    All to come back in two weeks and do it again.    Until then it is all a waiting game of long wide awake nights.

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Yup Wide awake… Love the song and love it more tonight .. Different meaning for me as I lay wide awake from the steroids – note to self this high dose must be taken in the morning not at night!! Pain settling but very restless legs… pain killers not kicking in.. Must get sleep as have early 5:30 alarm and an awesome set of LeapsStars! No clients after 12 and am on crutches so will be sweet to get through the day…

This song in particular is a dose of reality. It’s kind of like coming down from a high. You’ve been on cloud nine for so long, and it can’t always be so sweet and sometimes you need to realize that, and you have to pick yourself up and move forward and face the facts of life and know that this is just a lesson you learn and you’re stronger because of it

Katy Perry on the theme of “Wide Awake” following its release

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So we ran late today as we came straight from my extended “quick check up visit” with the specialist to the gym. After negotiating with Mr Grace to promise to stay on my crutches and not overdo it I was given permission to work. OMG it really is my happy place. The sunset was later and after a wonderful first meeting with our latest LeapStar, it was onto upstairs hearing Ms I don’t run complete had just completed her 3kms in a PB without music. As her Miss I don,t run sat drawing pictures and reading dr Suess go dog go to Weewai. Next arrives Mrs oops we both stayed up and watched then netball who has had an epiphany to almost bring me to tears and is so totally ready to get moving with the next missions and just before circuit Mrs I am totally doing this had a smile of knowingly reassuring me she really does feel good about the next step …. And then as my the anesthetic wears off, I watched a Tutuman take on 13 more ladies who just left me smiling as they really don’t see their fabulousness. I watch them nail two loops looking fresh as a daisy and the subtle progression has increased there strength and fitness. Of course this kinaesthetic trainer can not sit down for the entire session but I really want to buddy them up with something that makes them feel amazing in AMAZING AUGUST. It was a circuit that left me smiling from ear to ear. Dead on our feet we get excited about heading home for my Skype sessions …. Oops no keys… Last seen at the hospital or Fletcher’s …. What an awesome team of colleagues I have… An hour later we have locked and and home at last… Another moment I feel blessed to have so many in my corner!

Thanks to everyone who sent messages, read my blog, hung out with me at my happy place… It really means the world!

Seems I am making up for lost blogging time, three in two days. I just wanted to share that it really has been a grateful day and a huge reminder for me that when you hit rock bottom the only way really is up. The lesson in the last twenty four hours is that those days when it feels life sets you back 100 steps in reality it is probably only 20 or 30 steps. Which in the scheme of the universe has me up 70 steps from a eleven years ago… On another side note I also stayed up late to watch the silver ferns win silver… It was the first game in 11 years I could watch without being annoyed and actually got excited! We might have lost but it was a fab feeling to be over my netball nemesis finally –

Today another lovely touch was that Peter remembered it was netball and my knee that started this RA journey 11 years to the day .. Ironic that i really have done a full revolution on the mouse wheel!!!! – time to get off…..

Hello new roller coaster 2014 I am ready! With fear, trepidation and excitement… Lets do this………..Whooooooooooooaaaaahhhhhhh! Nights universe it great to be back!

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“Now cate if you are in this much pain you can call us and come in earlier”. The thing is despite all my tears I was completely in denial and really did think I would wake up and this one would be all sorted…

Oops another stumble – lying on the examination bed at Outpatients the good news comes. Your bloods look good, joints are good. You look healthy – however we all pointed out Riwai had pushed me in the chair as really walking was not on today’s agenda. ” Yes yes yes… Could be your back again. Let’s have a look.”

Stripped down and sheet covering the appropriate places, Riwai and I giggled and even the usually very serious rheumatologist offered a wry smile. “Let’s just give you all the belts and braces with this one”. We all looked down at what should resemble a knee that looked more like soccer ball and had a bend in it resembling the Golden Gate Bridge. Thank you back as if on cue it throbs sending shooting pains down to my toes. Realising it has been like this for a few weeks sends me into another fit of giggles. How on earth did I miss that ridiculous knee. No wonder I couldn’t weight bare. As I am about to ask what happens next, Peter has turned me around propped up my soccer ball with a double pillow and numbed me with a local anaesthetic. Quick and precise hands and a bit of multitasking sees me given a cortisone injection into the joint… Holy smoke more tears, Riwais hands nearly squeezed blue but it is all for a good cause… Keep me out of that fricken wheel chair!!! The belts and braces included a new prescription, X-ray’s referral, new bloods, a quick dash for a new set of crutches to avoid weight bearing on one leg and twisting my back and a medical day appointment for a round of ritixamab … Oh joy says Riwai – another month of texture eating. More giggles and then a serious face comes from Peter. Now once we get this knee sorted back surgery maybe a possibility as this nerve pain is not subsiding. Let’s talk about this next time. I doubt we would do it in the next three months however it is an option. We will need a new MRI for that one…. I feel my HR rise … Anxiety setting in…I just don’t like MRI’s … Bank those thoughts … We can worry about that another day. For today lets get the knee straightening, get the pain (I was in denial about) under control and have a few days rest… Although he knows his idea and mine about what constitutes rest are slightly different. The good thing is I will get plenty of down time at infusion time. Off Riwai takes me outside for a race in the sunshine to pick up my new legs… Molly is fab and I have two crutches. Oh golly gee if only EQR and EQC woes were sorted that easily … But that’s a blog for a different day 🙂

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