After last years traumatic event, As you can imagine I was initially overwhelmed
so I spent much time reflecting on my life, being incredibly grateful; Life – the air in my lungs, my family, friends, my health, all that Ive been blessed with
and then I was lead to asking what now, what really matters???
For we are God’s handiwork, created in Christ Jesus to do good works,
which God prepared in advance for us to do.
THE NEXT CHAPTER
After 6 months of prayer, researching, networking & more prayer it is with much excitement that Christian Events-Nelson went live on the 3rd of May 2019
Following many late night revelations, prophetic words & encouragement my dream to have a place where all the Nelson Christian events can share info about the many amazing God filled events happening in our sunny region came to life.
Christian Events Nelson has been developed by Neriah, which is a not for profit organisation over seen by the Neriah Trust.
‘Neriah means Light. Lamp of the Lord’.
The purpose is is to offer services to the local churches, affiliated organisations and ministries in the Nelson, Richmond & Tasman region to promote there public events all in one place at no cost while preserving each ones autonomy.
These events are promoted on our website, via our extensive database that covers 18 different denominations, our Facebook events page and Instagram account.
Im really excited & count it an honour to be administering this service – promoting these amazing future events.
A huge thanks to Bryce @ Astonish Me Creative for all his work to create this website, basically interpreting my crazy scrambled egg brainstorms, not an easy job!!!
A COGNITIVE MIRACLE
At my 4 year check up in March – YES 4 YEARS!!!
My amazing neurologist started by saying
Considering what a MESS your last brain scan was, how badly & quickly your health was detoriating, medically I shouldn’t be sitting here having a conversation with you
After 25 years of damage to my spine I am now LIVING LIFE in a wheelchair
Four years since my stem cell transplant and Im still in REMISSiON
I used to HAVE Multiple Sclerosis, I now HAD Multiple Sclerosis
19 “Behold, I will do something new,
Now it will spring forth; Will you not be aware of it? I will even make a roadway in the wilderness, Rivers in the desert.
Its 8.30pm suddenly I was struggling to breathe, it felt like something was chooking me & I had a really tight chest (but no pain)
I thought I was having the biggest panic attack.
Calm down Becks breathe slowly, you’ve just had a lovely dinner with a friend …
AND WATCH THE BLOCK!
I then I slept for a couple of hours.
At 11.30 I woke up feeling REALLY WEIRD, dripping with sweet & wanting to vomit.
QUESTION do I go back to sleep? I felt NOT & then within the next 30mins I managed to get my legs out of bed & attempted to stay sitting up…
Oh my Medical alarm, I guess I should press it!
Someone from St Johns answers, eek quickly realised I can’t really talk!!! After some mumbling they heard the word chest
Before I know it the ambulance was here, some obs taken “we are taking you to ED – me -YES PLEASE” & onto the ambulance stretcher I go…
They asked me what to pack I pointed to my suitcase which I packed on the previous Friday knowing I was probably going to the hospital at some point
Thank you Lord for the prompting! I hadn’t been feeling well for the last few days
The rest is a bit of a blur…
Tuesday 31st July 2018
They put me in a cubicle, took my OB’s, hooked me up to an ECG machine & they managed to get a line in me for bloods, which is a miracle in itself!
The nurse then injects my stomach with some really nasty painful stuff (which I know now helped save my life!).
2am ish (I think) The doctor comes in & shuts the curtain. “We think considering all the chemo you have received your having a minor heart attack, your hearts beating at 200beats per minute”
IM IN SHOCK but I definitely wouldn’t change having had the chemo
Next thing they take me upto Radiology for a chest X-ray.
A while later things really start to hit me & I start crying; both my grandmothers died of heart attacks, it’s in my family. BUT HEY IM ONLY 38!!!
I returned to be given a spray under my tongue, it didn’t do anything…
6am (I think), Now that they think they know whats happening I better text someone… my sis, sorry febs but….. when can you call me? She does & now is in as much shock as I am.
10am (i think), a bunch of well dressed Doctors arrive, which I now know where the Cardiologists.
They check my heart & ask me lots of questions.
They then say to my relief, even though your hearts racing, we don’t think your having a heart attack, YAY as relief comes over me…
My portacath is then accessed for a contrast solution and they take me up for a CT Scan (which to my delight it’s quick opposed to my normal MRI scans).
Within minutes Im back in ED. “You have TWO MASSIVE CLOTS, ONE ON EACH LUNG. THEY ARE PRESSING ON THE RIGHT SIDE OF YOUR HEART. We think they have come from a clot in your left leg”. Your going to ICU as soon as they have a room cleared for you.
I quickly update my sis, with a sense of relief OBVIOUSLY not realising how serious things actually were…..
Even though this was a critical time I experienced the most incredible peace throughout it all.
I remember spending most of the time reciting psalm 21: The Lord is my shepard I shall not want, he makes me lie down in green pastures, He leads me beside quiet waters… He restores my soul … Even though I walk through the valley of death I will fear no evil for you are with me. Your rod & staff comfort me.
*little did I know that I actually was walking through the SHADOW of the valley of death.
In I go & get all hooked up looking like ET & ouch receive another one of those nasty jabs.
I then have one of the coronary docs turn up with a machine.
He carries out an echocardiogram to check out my heart. Wohoo it’s ticking but very fast esp the right side which was obviously a lot bigger, I’m told this is to be expected as the clots where pressing against it.
My heart is now beating at 170 bpm which is better then 200!
I have my parents contact me from overseas, it was such a relief to hear there voices although was really hard to communicate as I still could hardly talk & the reception was terrible!
Im absolutely exhausted yet don’t know if I can sleep. After being introduced to my amazing nurse for the afternoon. I managed to eat some ice cream & jelly & try to settle in.
After waking from a few hours of broken sleep, yay I’m presented with some cold Hospital toast (which I actually like) And attempt to come to terms with what just happened….
My Doc comes in & tells me if I hadn’t pushed my Medical alarm I wouldn’t be here as I was minutes from DROPPING DEAD. GULP Oh by the way if that did happen you need to decide if you want to be RECASITATED or not… CAN I TALK TO MY MUM ABOUT IT???
And so I do, as I was explaining what the doc said I realised that hey Im obviously still meant to be here, so YES Ill be Recasitated to which they were very pleased to hear.
The rest of the day involved contacting my wonderful friends & sister Ana who brought me some ‘proper’ yummy food for my lunch & dinners.
Lots of dozing & wohoo I slept really well that night, A big relief as the ward was soooo quiet.
Thursday 3rd August
Today’s visit by the doc…
Doc: looks like things have started to settle down
Me: do you think I’ll be home by the weekend?
Doc: NO your still have a 90% risk of having a cardiac arrest, we’re going to keep you in ICU for as long as possible.
Me: Right OK absolutely!
YAY my little AMAZING sis Febs is coming from Wgtn today, will be sooo good to see her
Its amazing when these things happen how it puts everything in perspective & you realise what & whom really matters; the Lord, family & wonderful friends.
Friday 4th August
Phew they have stopped giving me injections & replaced them with ‘Rivaroxaban’ blood thinning tablets.
Which only became funded on the 1st of August.
I’ll now be on these little gems for life
Nurse: so you had ‘submassive clots’
Me: what does that mean?
Nurse: we had to look it up and basically “YOU SHOULD BE DEAD BUT YOUR NOT!!!
Me: Wow thank you Lord!
Submassive Pulmonary Embolism. … Typically these patients will have a large amount of clot in the lungs. Although submassive pulmonary embolism needs to be taken very seriously, there is a wide range of severity with some submassivepulmonary embolisms more serious than others. Jan 20, 2016
Im sooo grateful that they drip feed me this information, in a weird way it makes it all a tad easier to digest
Late Friday night Im told they need my room for someone else in ED so off I go (a huge thanks to febs who helped pack everything up).
While she was doing that the nurse was getting me all set up to have portable monitoring equipment as Id still be monitored by ICU.
Yay I get my own room although defiantly not as nice as ICU & the ward is incredibly noisy.
I receive a text from my brother Nathan & him, my sister in law Yeshalem & little bro Jess have arrived in Nelson. They came done from Wgtn to see me, am definitely feeling the love!!!
Saturday 5th August
All 5 siblings back together after 10 years
Wow what an incredible experience having everyone together in the same room AND OF COURSE IT WAS VERY LOUD!
It was quite surreal esp as yay IM ALIVE & not in a box.
As you can imagine they were all really concerned & didn’t want to see it happen ever again (me too)! which brought what felt like a million questions…..
It was time for me to feel bossed around – we are all adults now.
And its 3pm & they all head back to the ferry after there fleeting amazing visit.
Sunday 6th August
After not getting much sleep, even though I was so exhausted after yesterdays exciting events, I continued to rest as much as I could while reassuring my sis that I will be ok, have things in place at home. And then farewelling Febs who needed to return home. She truly is amazing & someone I really appreciate having in my life.
I then enjoyed another visit from another friend. Definitely not the ideal place to catch up!
Monday 7th August
And so its a new week, Im feeling quite relieved that last Mondays events won’t happen again being on high dose blood thinners!
My heart is now stable & has been for over 48 hours.
The ‘going home’ talk now begins…..
I have lots of my questions explained to me, such as – where did the clots come from (turns out there must have been one in my leg, a result of being in a wheelchair & not receiving adequate exercises/stretches). But thats a whole other story…….
Yay I sleep well comforted knowing that its my last night here.
Tuesday 8th August
As you can imagine I was quite apprehensive about this although really looking forward to my own bed!
A wonderful friend offered to come stay with me & help me get settled.
I go home not really knowing what the next chapter involves other then that Im still meant to be here.
Doctors appointments, tests, claims made, daily stretches re introduced, weakness & fatigue while my body heals – RECOVERY….
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns. Phillippians 1v6
HOWEVER I’m sooo grateful to still be here (you can only pinch yourself to a certain extent) BUT WHATS NEXT??? I have no idea However theres a new season in front of me and I know it’s going to be GOOD!
I never imagined I would be here in these circumstances…
I thought, as I laid there once again surprisingly experiencing the most incredible peace & overwhelming sense of thankfulness.
I was so overtaken by these feelings that I quickly realised that it was loud, I mean really loud!!! This was familiar but ohhh so different…
8days later results received- NO NEW LESIONS!!!
2 Years in Remission & many more to come
‘Stemmies’ are stemcells
2 days ago( the 14th May) it was my stemmies 2nd Birthday or you could say 2 year anniversary.
It has all worked, why am I surprised?
These last 2 years
Have involved recovery from the most medically challenging procedure I have ever been through let alone imagined!
I’ve also experienced some of the most stressful & difficult situations I’ve ever been through, including having to find a new home after 13 years in what I thought was the best house ever. This involved searching for 5 months to find a new one which I NOW LOVE
Watch this space
Hey In the midst of all this I just had 2 years without experiencing ANY RELAPSES OR DETERIORATION!
Today I had my annual appointment with my amazing Neurologist, We finished a VERY positive appointment of discussing all the close calls Ive had with death due to all the DMD’s Ive been on with the clinical Tests – which resulted in the best scores ever!!!
Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us
The last 2 months sure have consisted of a number of incredible mile stones…
13th May – 12month MRI scan
After having had so many of these & having been through the transplant this was sooo easy! I was so excited we even forgot to put ear plugs in – I very quickly realised though!
Once again we had issues with not being able to access a vein, this time my Portacath for the contrast dye for the last part … But hey no worries been here a million times!
In the past I’ve slept through them but not today; I was so excited & expectant that the scan would prove what I already knew!
NO RELAPSES SINCE JAN 2015
14th May – 1year since I had my transplant!
What an experience to reflect on, for me that day was a bit of a drugged out emotional blur…
I couldn’t believe that the day had come after 5 years of trying to be treated & my amazing Dad was arriving to visit me. Nothing like having your dad involved in the thick of it – thank you so much Dad!
While I had the privilege of receiving 6MILLION of my own good stemmies the others celebrated with me with what I understood was a really good cake! UNFORTUNTLEY I was neutropenic & not holding down any food so had to sit back & enjoy them and the staff indulge.
14th May 2016 – PARTY TIME!!!
It was with much delight that I celebrated this milestone with lots of friends over drinks & desert at one of my favourite local Cafes Paulas Plate.
I really did get to indulge this time, although this time it was in a much more sophisticated venue!
It was precious to be able to do this with some of the amazing people I have the honour of calling my friends.
A week earlier to the day I had celebrated my 36th birthday but this indeed is my new birthday & worth celebrating so much more ha especially as turning 1 sounds a lot more youthful!
26th May – NO CHANGE!
On the 26th my Dad & I met with my amazing neurologist & guess what there was no New lesions/advancement reported on my latest MRI scan!
Not a suprise to me esp as I haven’t had any relapses since Jan 2015, the majority of my symptoms have disappeared and NO NEW ONES!!!
My Nuerologist continued to say that if nothing happened during the next 2 years that I would be discharged from there services!!!
I know lots of other transplant receipents who 18+ years post the MS is still in remission, so expecting 2 years to be a piece of cake!
I will miss my annual catch up with my Nuero though!
4th June – 1 YEAR SINCE DISCHARGE!!!
Unbelievable that today 1 year ago I was discharged from Isolation!
High dose chemo
Ipod (there is an outside world)
Hardest thing I’ve ever done yet the best!
Enter – with MS
Exit – without MS
I certainly couldn’t or wouldn’t want to have…
Done this amazing journey without my incredible lil sister & friend Phoebe!
*Flights *Tears *Laughter *Special moments * Prayers *Never the same *Weights *FOOD *She survived *Words of encouragment
14th Feb will be my 9 month anniversary since I got my stem cells…
Where did that time go?
So grateful for having the transplant last year, most brutal thing Ive ever done BUT definitely the best thing Ive ever done!!!
Timing was sooo perfect, it would cost us double if I had gone this year!
Well I am now officially in REMISSION, loving life & looking ahead…
Getting wonderful feedback from my incredible medical professionals here & in Singapore!
Never been so busy which I love.
New exciting Projects ahead, WATCH THIS SPACE!
Enjoying the fruits & doing things I couldn’t before.
Rediscovering what I love; cooking, gardening & spending time with wonderful people.
NOTHING IS GOING TO STOP ME!
8 My intentions are not always yours, and I do not go about things as you do. 9 My thoughts and My ways are above and beyond you, just as heaven is far from your reach here on earth.
Recently you may of seen a clip on the news about the stem cell transplant being done in the UK with much success … This is exactly the same as what I had done as well as thousands all around the world for the last 2o years – great that its finally being taken seriously!
Am excited that it is becoming a REAL option for others with relapsing remitting MS. PHARMAC the drug days are nearly over!!!