Saturday, February 10, 2018

Whole30 Week One

A great question to ask yourself before you make a food choice is 
'will this nourish me?' 
Apply this question to your mind, body and soul.
- Dr Libby 


Day One - 02/02/17 - Friday 

Today marks the start of our Whole30 journey! It feels like there has been a lot of build up to this day so it is good to finally get underway. I am so ready to begin and see where this takes us. I know I need a change and to channel my energy into doing something positive for my body instead of constantly fighting against it. 

Dan and I took our starting weight and measurements and now we are not allowed to weigh ourselves for the 30 days. While loosing weight is not my main goal I must admit that currently my body feels extremely puffy and swollen (thanks prednisone) so I am interested to see if changing my diet will help elevate some of this uncomfortable bloating. 

I have done a lot of reading of other people experience on the Whole30 and the message that keeps coming through is to be organsied! Today I spent the day in the kitchen making home made coconut milk, turmeric kumura and capsicum roasties and chicken cacciatore for our dinner. Yesterday Dan and I also made chicken bone broth and a frittata. It already feels nice to have a purpose again!!


Lunch time! 


 I feel like we are going to spend the next 30 days constantly doing dishes!! 

Totally think I can get used to drinking my coffee with almond milk or black!! 

I have been wondering weather to include what we ate every day or just my favourite meal of the day....I think for now I will do my favourite meal but please let me know if you would like to see more of what we are eating! 

My favourite meal of the day was our dinner which was Chicken Casotore with beans and courgettes out of dads garden. The recipe can be found  here Chicken Cacciatore or in page 334 of The Whole30 book.








DAY TWO: 03/02/18 - Saturday 

Today I was faced with my first lot of temptation in the form of sushi, donuts and lollies. Although my lovely friend felt awful eating this in front of me I assured her I was fine and I needed to learn to be around this food and say 'no'. It probably helped that it was only Day 2 so I wasn't missing anything. 

I was proud of myself though I packed my own lunch so sat there eating frittata, shredded chicken and some chopped vegetables. Yay for self control and being prepared. 

After a long day out I was surprised how my body held up and felt good. I was even able to come home and begin to get dinner ready. I made my own aioli..little tip don't use extra virgin olive oil.... thankfully Dan came home at the right time and was able to save it. 

Favourite meal of the day had to be breakfast which consisted of: chicken meatballs, turmeric kumura and capsicum roasties with an egg. 


DAY THREE: 04/02/18 - Sunday 

Today I felt AMAZING!!!  
I can't quite believe everything I was able to do today. 
I went for a swim at the beach in the morning which was divine. Then I packed up my lunch and went to visit Mum and Dad where I raved about how motivated and great I was feeling. 
Dan was working the day shift so we met each other back at home. After catching up on our days Dan said he was going to go for a run. It was a beautiful night and I was already feeling like getting out of the house again so I said I would go for a walk. Dan decided to come with me first then go for his run. Going for a walk with your husband might seem like a small thing but for me it is a bloody big deal and something to celebrate! Our 'small walk' turned into quite a 'big' walk with two big hills thrown into the mix but for the first time in a very long time my body felt strong if I was able to ignore my high heart rate.... 

I cannot say enough how empowering it feels to be talking control back. 

My favourtie meal of the day was sitting down with Dan after our walk and enjoying a prawn stir fry packed with lots of vegetables. We laughed how we can almost hear our bodies thanking us for feeding these delicious nutrient dense meals. 



DAY FOUR: 05/02/18 - Monday 

Today I woke up with a pounding headache and the questions started in my head....am I  drinking enough water? Am I detoxing off sugar? Did I over do it? Instead of reaching for Panadol I was able to treat it with running Peppermint and Lavender oil on my forehead and temples. 

I had an appointment with Meegan who does Craniosacral therapy (you can read more about her work here Meegan Care) so was interested to see if she could pick up on any changes in my body. I have been seeing Meegan for years and highly recommend this form of treatment. I find it extremely gentle and Meegan is one very talented and knowledgeable woman. We spoke about my decision to make dietary changes and how it needed to come from me when I was ready. I am now in the right place to be doing this. The exciting bit was Meegan was able to identify that my body is beginning to make positive changes and my nervous system is beginning to 'calm' itself down. This has been after a lot of sessions and work.  I am reminded that this is a process and its not going to be an over night fix for me but for the first time in a very long time I felt extremely proud of my body and all the work I have been doing to get it here. 

Dan and I were both very tired this afternoon. I am usually tired after a session anyway but perhaps the sugar detox is hitting us?! We decided a refreshing swim at the beach might wake us up. On the way home we both realised how often if we did something like that we would stop on the way home for an iceblock just because we could. We are starting to learn how often we would just eat for the sake of eating. Don't worry I can assure you there was no iceblock eating!! 

Dan came home and started to fall asleep on the couch so I sent him off to bed to have a nap while I started on dinner....yes I know who is this person haha!!! Usually its the other way around and I am the one being put to bed. I am enjoying being back in the kitchen and realised how much I have missed cooking.

We had a quiet evening and were both in bed very early! 

My favourite meal of the day was our dinner which was salmon cakes, roasted vegetables and a salad. 



DAY FIVE: 06/02/18 - Tuesday 

Today I have struggled with lack of energy, an achy body and a pounding headache. I think for me personally I am finding it hard to distinguish between what Lupus symptoms verse what is from not eating sugar, changing my diet etc. Today I did not want to move but I have still been able to be proactive though. 

I had a dream last night that I ate half a cupcake and have never been so thankful to wake up and realise it was a dream haha....

Dan made a delicious breakfast of left over salmon cakes, poached eggs with avocado. We are learning the importance of eating a decent breakfast! It helps having Dan home because he makes amazing poached eggs!! 

We went out to a cafe and had long blacks which were surprisingly good and I can see myself getting used to. Then with our meal plan in hand we went to the fruit and veggie store and stocked up for the week then went to the supermarket. 



I think I gained superpowers from the long black or I was just a woman on a mission because we came home re-arranged the fridge, cleaned the house then began our meal prep for the week. Dan roasted the chicken which we will use for lunches during the week. He then went out for a friend and I spent the afternoon making sweet potato, apple bake which will be our breakfast for the next few days and then I made dinner. Right now I feel so accomplished but so exhausted. 



Favourite meal of the day was dinner again which was Potato rosti hamburgers. These were delicious and will now probably be our new way of eating hamburgers in the future. 


DAY 6 - 07/02/18 - Wednesday 

Woke up today and felt like I hadn't slept for weeks....que sinking feeling!!
I felt so drained; like my body was made of lead. Dan started work at 8am and I didn't even hear him leave. I woke up at 9am opened my eyes and immediately wanted to go back to sleep. I read and continued to rest until 10am and then finally dragged myself up with a promise to my body that I would take it easier today. I can appreciate that I have been really busy for me so this does make sense. 

I had the brief and I say brief thought that maybe a walk around the block might help but I could tell that this fatigue was different than just feeling tired and that it wouldn't be wise to push through this. I instead decided to do some yoga. I have found a really good YouTube channel where a woman who has a chronic illness herself does yoga sessions. I started with one but then soon realised my knees and wrists hurt too much so instead of push through (which I probably would have done in the past) I found a wonderful gentle restorative yoga sessions which I did. I will include that here...Restorative Yoga. This session helped me to relax and gentle stretch out my body. Just what I needed. 

I then had a shower where I had to use our shower bench to sit down and I soon realised standing was too hard. I napped and then went up and had dinner with Mum and Dad. I had a little burst of feeling more like me in the afternoon but by the evening could barely keep my eyes open. Its days like this I am so thankful for being organised. I didn't have to worry about any of my meals because we had done all the work! 

Favourtie meal of the day was breakfast which was Sweet potato apple breakfast bake (click on the link for the recipe). This was delicious and is a great easy breakfast for Dan to grab on the way to work. 






DAY 7 : 08/02/18 - Thursday 

I don't like to write this but today was rough........

Woke up with extreme fatigue, joint and body pain. I dragged myself from bed to the couch which even that simple task required a rest. I manged to get some food into me after a mini melt down when I dropped the Tupperware container on the floor because my wrist was too weak are sore to hold it. Again it is always the small things that end up tipping me over the edge. 

It was another sitting down shower kind of day even that left me feeling like I had run a marathon. My body hurt, my brain was foggy and the fatigue was unbearable. Having a shower put me in bed for over two hours. You know things are bad when even breathing feels like such a massive effort. Today was the first day since starting the Whole30 where I had to take some stronger pain medication. This is both amazing that I was able to last that long and also a little disheartening because I was doing so well. I will choose to look at what an achievement that was!! 

My amazing husband took the lead today and while I slept he worked his magic in the kitchen making our dinner, roasting vegetables and making another frittata for the days ahead. When I was finally able to get up Dan made me lunch and I rested on the couch. 



While everything felt out of control today it was nice to have some control about what foods I was putting into my body. Today more than ever was the day where I needed to feed myself well. 

My favourite meal was the delicious chicken chowder Dan made. You can find the recipe here Chicken Chowder.


Moving feels too hard today,
Standing feels too hard today,
Eating feels too hard today,
Holding a conversation feels too hard today,
Everything feels too hard today,
Then I am brought back down to earth with Mums comforting words,
' hunny please don't feel dishearten'. 




DAY 8 : 09/02/18 - Friday 

Short version: Today was hard! 

Longer version: Today was hard physically and emotionally. Last night I had to take a sleeping tablet due to horrible unrelenting pain. After trying everything I could I realised the only way I was going to escape into sleep was by taking a sleeping tablet. I finally got to sleep then woke up feeling like I hadn't even slept. All I wanted to do was NOT move an inch of my body. 

I woke up and could hear Dan rustling away in the kitchen making breakfast. I get up and he had whipped up meatballs in tomato sauce, poached egg served on top of a potato rosti! I am just going to say again how amazing he is!! 

I wanted to try and get out of the house to see if it would help or at least take my mind off the pain. I had a shower which of course resulted in a rest and the realisation the shit I am struggling. My body feels so incredibly weak and fragile. My joints feel like they have acid running through them. My mobility isn't good...I am just so uncomfortable! 

Dan picked up two long blacks and we went a did my favourtie thing...sit by the ocean. It was nice to get out and get some fresh air. It did help to get out. 



We all know what I did when I came home...went to bed. I got up and reluctantly took some more pain medication. I then went up to visit Mum and Dad. Mum took one look at me and could instantly see I was not well. I started talking to Mum and before I knew it I burst into tears. For me it feels upsetting to be looking after my body so well and to be feeling so miserable. Its hard to be putting in so much effort and not getting the results. Realistically I know it is very early days and I am still going to have these days and weeks; but its just hard. 

I am at a stage where I want to move on with my life and not be constantly battling against my body. I want more...is that selfish of me? 

Mum and I talked  how this feels really hard because I did have such good days earlier in the week. Its confusing to go from feeling so good to feeling so horrible. It feels cruel. 

Today I just feel really suffocated by Lupus. 

Its hard when I get a taste of wellness and then I am brought back here. If anything this does make me want continue to work hard so I can have more days of wellness; days of being able to cook in the kitchen, swim in the ocean, walk around the block and ultimately feel like myself! 





Recap of week one:

So as you can see Week One of Whole30 has been a whirlwind ride in the Hall household. 
Its been full of amazing pinch me moments and then has ended with some difficult emotions and unwanted pain and fatigue.

Every day Dan and I are learning more and more about our eating habits and patterns and experimenting with this new lifestyle. We have already gained so much and it has already been a week. 

For the first time I am finding I am eating all my meals as I am not grazing during the day. I am finding how much I have been eating out of habit and how often I will reach for food without even being hungry. 

The wonderful thing is that we haven't gone hungry or even really felt restricted; if anything we are both eating more than we usually would. 

Week one has been hard but not because of the Whole30! If anything it has been so wonderful to have the structure and to have a purpose again. I am excited to see what Week 2 brings. 







Wednesday, January 31, 2018

The Whole30 adventure is set to begin...

Let food be thy medicine
and medicine be thy food
- Hippocrates 


"Liv I think you should go gluten free."
" My friends Mum cured all her pain through not eating sugar."
"You shouldn't be eating tomatoes" 
"Have you cut dairy out of your diet?"

"Hey Liv have you gone gluten free yet??"

If I received a dollar every time I heard those questions or had diet advice recommended to me, let's just say I would be a very wealthy woman! While I know people are coming from a place of care and concern when they are offering advice, it can get exhausting to constantly hear. It often feels like everyone is trying to 'fix me' because I am 'broken'. Outward I would smile and thank them but internally I am yelling ' if I want to eat a bloody piece of cake or a slice of cheese then I will!'.
 (P.S this is not a dig at anyone! I am very open and receptive to advice I promise! I did wonder if I should probably take this out as I might offend someone but I think it is just a side of living with chronic illness that you experience and I want to be honest about it. Heck I know I do it to those I love as well!)

I have come to realise that I have lived in the mindset that I feel like Lupus takes away a lot in my life so if I want to eat (insert any food in here) then I will. I feel restricted in many areas and I didn't want to feel restricted with what I can eat either. Plus where was I going to get this extra energy from to maintain this new lifestyle? While I've had this mindset, there has always been a niggly thought in the back of my mind that I could try harder with my diet and the foods I put into my body but I always managed to quiet that with a packet of salt and vinegar chips.....

I knew (and hoped!) deep down that I would come to a place where I would decide to take more control over my diet and the foods I am putting into my body but I understood this was a decision I had to come to when I was ready in my own time. If I was to do this, it needed to be for me and not to keep other people comfortable. 

Drum roll please.....I AM NOW READY!

But where to start? Do I just cut out sugar or gluten or dairy or follow an anti inflammatory diet? The options are endless!
After much research and thought, I have decided to undertake what is known as the Whole30 program. 




What is the Whole30 program?

Certain food groups (like sugar, grains, dairy and legumes) could be having a negative impact on your health and fitness without you even realizing it. So how do you know if (and how) these foods are affecting you?
Strip them from your diet completely. Eliminate the most common craving-inducing, blood sugar disrupting, gut-damaging, inflammatory food groups for a full 30 days. Let your body heal and recover from whatever effects those foods may be causing. Push the reset button with your health, habits, systemic inflammation, and the downstream physical and psychological effects of the food choices you’ve been making. (https://whole30.com/whole30-program-rules/
In the past I have temporarily cut certain foods (mainly gluten) out of my diet to see if it helps control my symptoms, however so far I have been unable to find foods that trigger flare ups. Many times I have said to Dan that I almost wish I could identity a food that caused me to feel awful because then I would certainly stay well clear of eating it. The truth is, there are things in my diet that I am sure I am eating that are doing more harm that good and I feel that undertaking the Whole30 program, I will hopefully be able to pay close attention and undercover these potential food triggers. 
My lovely husband has decided to undertake this with me so for 30 days we will stay away from eating....
  • Sugar - added of any kind, real or artificial
  • Alcohol
  • Grains 
  • Legumes 
  • Dairy
  • Carrageenan, MSG, or added Sulfates  
 I must point out here that this is not to say these foods are necessarily 'bad' rather it is the idea that these are known foods that can cause unwanted effects on the body, the main one being inflammation.


Therefore we are able to eat:

  • Meat
  • Seafood
  • Eggs
  • Vegetables 
  • Fruit
  • Natural fats 

I know some of you by now are probably shaking your head and questioning why we are cutting so much from our diet. The simple answer is I AM SO TIRED OF LIVING IN PAIN. Something needs to change for me and at the end of the 30 days I still feel rubbish (which I highly doubt) I can take comfort in knowing that for 30 days I have fed my body whole, rich nutrient dense foods. 
I understand this plan won't sit right for everyone but it feels right to follow for me. 
For 30 days we will both focus on healing out guts. I like to think of it as using food to be my medicine! 

After the 30 days we enter a period of re-introduction where we will slowly add certain foods back into our diet and watch for any unwanted symptoms. This will be the crucial part for me where I will hopefully be able to discover foods that make my symptoms worse. 

I have read blogs where people have had debilitating symptoms disappear, people also report gaining more energy, sleeping better and just all round feeling better. There is a great testimonial page here which shows ways peoples lives have changed... https://whole30.com/2011/06/the-whole30-a-z-real-life-testimonials/

Dan and I have spent the last couple of weeks reading the Whole30 book, taking notes, finding receipes and familiarising ourselves with the program. We know to do this successfully we have to be prepared and educated. 

Our starting date is 2nd February as Mums birthday is on the 1st February and we want to be able to eat one last piece of cake haha! 

On Monday we spent the day cleaning out our freezer, fridge and pantry. We have filled two washing baskets with food we cannot eat and have decided to take away the temptation of having it in the house so will take it to mum and dads. We have sat down and written out our meal plan for the week and the all important grocery list. We also spent time writing down our goals and motivations for making this change as well as potential triggers (having a bad day, getting invitations out for dinner, having a flare up) and how we will overcome these (having prepared meals, communicating to each other, reminding ourselves of our goals). 


Bye bye temptation!






Dan and I have been laughing that the universe has been sending us signs all week that is time for us to start. My first sign came when I decided to have a piece of toast for breakfast only to have it get stuck in the toaster. We found some sausage rolls in our freezer so decided to eat them for lunch and with my first bite I burnt the roof of my mouth so have been left with a painful blister. Last night we had home made hamburgers which resulted in one of us having a very unhappy tummy for the rest of the night!! 



Right, I am off to stir my bone broth but want to end this blog post with a quote from the Whole30 book that really gave me the final kick I needed to do this. Stay tuned as we will share this experience with you!



This is not hard. Don’t you dare tell us this is hard.
 Fighting cancer is hard.
 Birthing a baby is hard. 
Losing a parent is hard.
 Drinking your coffee black. Is. Not. Hard. 
You’ve done harder things than this, 
and you have no excuse not to complete the program as written. 
It’s only thirty days, 
and it’s for the most important health cause on earth
—the only physical body you will ever have in this lifetime. 



Thursday, January 4, 2018

2017 - 'you will break, but oh you will heal'

 "When you start to feel
like things should have
been better this year,
remember the mountains and valleys
that got you here
they are not accidents
and those moments weren't in vain.
You are not the same
you have grown and you are growing
you are breathing, you are living.
You are wrapped in 
endless
boundless
grace
and things will get better
there more to you than yesterday."
- Morgan Harper Nichols

You know she's been a challenging year when you have to give yourself a little pep talk and take a few deep breaths before you even begin typing this post. 

2017...2017...2017!

There's a quote that goes 'was it a bad day? or was it a bad five minutes that you milked all day?'  
I feel like this is an important quote we all need to remember when we think back and reflect about our year. We are quick to forget about the days we laughed, loved, achieved, dreamed and truly lived and we seem to tightly hold on to the day or months when life didn't go to plan or obstacles were placed in our way. 

I was recently having coffee with a friend and we were talking about the new year when out of no where the words 'I feel like I haven't achieved much this year' came out of my mouth. I was met with a 'Liv you survived! You have taken control back this year!' 
I don't think I realsied how much I belittle my every day existence of living with a chronic illness. How I placed little value or worth in my daily survival because to me the fact that I wasn't able to hold down employment meant in my head I achieved nothing....yes don't worry I am cringing even writing this because I know it is not true. 

I wanted to recap on my 2017 mostly for my own benefit to show myself that I 'achieved' many things but also to continue to create awareness about the reality of living with a chronic illness and how life can look a little different but that doesn't make it any less valuable. 

January 

A new record was set; it took me four days before I ended myself in the Emergency Room with a nasty kidney infection. A script for antibiotics in my hand, we all breathed a sigh of relief, that it has been caught, and now I could focus on recovering. However, this is me and if you haven't learnt by now my body doesn't seem to play by the rules. Just under a week later, I ended up back in ED extremely unwell and giving myself and my family a heck of a fright. I was admitted this time and needed a course of IV antibiotics.  You can read all about it here, Hospital Happenings. I must admit, I haven't been brave enough to go back and read that post again. I found that stay and the recovery to follow pretty traumatic but like always I got through it thanks to an endless amount of love and support. This quote from Recovery and Healing sums up my January very well 'all I must do is survive; focus on one breath at a time. Swallow endless amount of pills; control my pain, control my nausea, try to eat, sleep and survive! 




February

There is nothing like going to a wedding to make you forget about all your problems! At the start of Feb we got to see one of my high school friends get married on a stunning summers day. It was our first wedding since being married and we both agree it gave you a whole new appreciation for all hard work that goes into a wedding.





I was trying to think what else happened in February and I stumbled upon this Instagram post I wrote which I thought sums things up pretty well:

The truth is dark days can still be filled with pocket of small joys (as I have named them). These are the brief moments where we are able to be distracted from excruciating pain; be comforted; find even a smidgen of relief or a cheeky bout of laughter that catches us unexpectedly. Small joys can also come in the form of a hug from mum, a text from a friend, your husband reaching out to hold your hand during the night. There are tears of pain and frustration with beautiful moments nestled in there too. Both pain and joy can coexist together. You need to believe this little fighter. It doesn't have to be one or the other. Our illness have so much power and control over us but I believe we hold the power to keep searching the good. Search for your pockets of joy and hang on to them. Today was a hard day with pain and fatigue but my pockets of joy were a hot bath, spending time with mum and dad and a lovely roast dinner. Find your pockets of joy for the day even if you do have to search a little harder I promise you they will be there. 



March 

March started with this blog post Unpredictability. At this time I was still fiercely clinging on to my part time Social Work job.  I can sit here now and know deep down in my heart that I gave that job my absolute all. I know I tried so bloody hard and I know there was nothing more I could do. I am truly grateful for the time that I did get to work and for all the knowledge and lessons I learnt. I loved that job! I miss it but deep down I knew how ever unfair it was this little body of mine was not coping. I talk about that chapter of my life in this blog post Recuperating phase.

On to some happy news; Dan and I celebrated our first wedding anniversary on the 12th March!! We packed up a cute little picnic, but, after getting eaten alive by mosquito's and forgetting the insect repellent, we decided to retreat back home and continue our picnic on the comfort of our living room floor. Can you tell we are pretty adaptable by now?  


March 18th brought an exciting day in the Hall family as Dan's oldest brother Dylan married his beautiful bride Penny. It was a stunning wedding held at local winery over looking the ocean. Of course Dan's Mum pulled out another incredible speech and we are already looking forward to the next Hall wedding! 




April 

April started with me writing this blog post to create awareness around mobility parking

This Instagram post summed up my April....

There will be days where as soon as you open your eyes you just know it's going to be a tough day! Even with all the self care and rest your body still decides to fight against itself. You come to learn that the world doesn't stop on these days. Pain isn't patient or considerate or accommodating. Some days you will be able to simply rest other days you will need to somehow push through. It's such a balancing act and today I got it wrong. I pushed on despite the pain and went to get the groceries by myself because hey we have to eat. Of course my body has rebelled at me and now I feel way worse but slightly accomplished at the same time. Now it is time to rest and ice this non existent swollen mess of a knee 





Oh Lupus!!! You really out do yourself! I take huge comfort in know that within these hard days and months there were always moments of joy and love. Even if it was waiting until my husband would come home at night and kiss me good night or a text from a friend to say she was thinking of me. Remember I am not a sad story!!!!

May 

May 10th is World Lupus Day so Dan and I honoured this day by going for a bush walk and of course I used it as an opportunity to do my bit in spreading awareness: 

WORLD LUPUS DAY! 🌏💜
I could sit here and rattle off facts about this dreaded illness and it's impact on my life but today we celebrated the fact that my body allowed me to get outside and enjoy a beautiful bush walk! To think this time last week I was bed ridden and today I walked 4km (in my purple tee shirt of course!) Thanks Dan for all the little pep talks 'you are doing well' and making sure I stayed upright 😉. Today I walked for all the people around the world who bravely battle this illness every single day, especially for those that aren't able to walk without severe pain; I walked for the lives taken too soon because of Lupus and finally I walked for myself because too many times I have been the one struggling to walk because of pain! 
Today especially I thank my incredible family and friends for their unconditional love and support. How blessed I am to be surrounded by so much love! It has been so humbling to see Facebook profiles turning purple to spread awareness and to read all your lovely comments. 
Thank you all for journeying this crazy roller coaster of a ride with me!



Another proud moment was getting two blog posts published on The Mighty website!! 


The rest of the month is summed up here Accident Migraines and Misbehaving Tendons. She was a pretty full on month haha!! 

June

I thought May was a full on month but that was until I was faced with June!! Shesh! Okay where to start maybe this blog post How are you?...overwhelmed!

On 8th June I took my first trip to Auckland to met with a hand surgeon to talk about the possibility of needing surgery to fix my pesky tendons in my hand. This was quite a confusing time for me with the thoughts of having surgery verse not weighing heavy on my mind. We met with the surgeon who wanted to get a MRI on my hand see me back in July to make the decision. 

I also learnt that my poor little Echo got written off when the van failed to see me and backed into my drivers side door. I must admit this effected me more than I thought! 

I was determined that even if at this stage I wasn't able to work I could still use my skills and passion to volunteer. I facilitated a Season's for Growth program which I love doing and did training to become a support person at the Taranaki Retreat (unfortunately so far my health has had other plans but there is still hope!!). 

The highlight of June was of course celebrating my Nanna's 80th Birthday!! We all carry such special memories of this night. Nanna can sure throw a party! 



July 

July July July!!! By the way if you are still reading this that is commitment!! 

From now on my blog went very quiet as I slipped into survival mode. 

On 20th July I found myself sitting in the hand surgeons office in Auckland discussing my surgery then a few days after arriving home I got a call from the nurse at QE Health in Rotorua sating they wanted to admit me for three weeks as soon as possible. They really did mean 'as soon as possible' as I was left with four days to pack and get myself over to Rotorua to begin the toughest challenge of 2017. 

July ended with extreme anxiety we shall say.....

August 

Those three weeks at QE Health stirred up almost every emotion possible for me. I've struggled to sit down and find the words to describe my stay because it felt like such a personal and vulnerable experience for me. I hope one day the words will come easy and I will feel some peace towards sharing my time there. Those closet to me know the immense courage and strength it took to get me there and to spend three weeks away from my husband and family. My Dad summed it up perfectly by saying it was my Mount Everest. 

This was my time table of random day in my first week....we were extremely busy!

8.00am – Morning Review
8.15am – Gym
9.30am – Sleep Hygiene (Education Class)
10.45am – Posture/ Stabilisation (Presentation)
11.30am – Physio Pool
12.00pm to 12.30pm Lunch
1.00pm – Graded Exposure
2.15pm – Massage
3.00pm – Energy Management
4.00 – Relaxation Class

I will forever hold with me the overwhelming feeling of pride I felt when I walked out of those doors for the final time. The added bonus was all my fitness markers improved but the most precious gift I took away was the friendships I made. How lucky I was to walk this journey with such incredible people. The amazing part was it felt like it was meant to be we all needed each other and I am so thankful to have kept in touch with my Superheros!!





While I was away my brother Joe left to go to London on a two year working visa! I got used to him being around and it took a while to adjust to him not being at Mum and Dads.



After a full on month August ended with a trip to Auckland but this time it involved no medical appointments! We went to see the musical Matilda!! Even thinking about it now brings a smile to my face.



September 

September equaled surgery time! Surgery was scheduled for 20th September and the weeks leading up to that were mainly spent making the most of having two functioning hands.

Happy to report that surgery went extremely well and here is a blog post that describes the surgery in more detail Surgery to fix pesky finger tendons. I was surprised how calm I was in the lead up and going into surgery. I think by now I'd really learnt how much strength I hold in this body of mine. I got through my admission to QE I could get through this.





On the 30th September I celebrated my 27th birthday where I learnt the true difficulty of opening cards and presents with one hand! At least I didn't get looked at funny when I asked for a fork instead of chop sticks when we went out for dinner.






October

The rest of 2017 for me involved lessons in patience, perseverance and creativity. I must say that I learnt that I can be extremely stubborn when I want to be!! Many times I heard 'Liv stop being stubborn and take your pain meds'; 'don't be stupid I can do that for you'; 'let me help you'. Yep still learning about accepting help....

Dan and I flew to Auckland on the 2nd October where I had my first post op appointment and got my cast off! Biggest achievement of the year...Dan didn't faint when I got my stitches out! My hero!
Of course Josy was on stand by and won the award for her patience as she took me to my appointments and drove us around Auckland. My superstar!




So what did I actually have done? Synovectomies left 4th and 5th metacarpals with re-balancing of the extensor tendons and lateral band translocation for secondary swan neck deformities.

I started hand therapy on 9th October and would see John once or twice a week to begin with it was  for scar massage, heat therapy and gentle movement then at about five weeks post op we upped the game to get my little sausage fingers moving into making a fist. 
I had to fight against ever fiber in my body that told me not to move them.... 


November

'Never the less she persisted!!' 

On 15th November I could officially make a fist and begin to drive again. Hello independence!! All those hours I spent doing tedious exercises paid off well and truly. 

Around this time as I began to gain some relief from my hand another issue resurfaced...my high heart rate. You know its not a good sign when your doctor describes your heart rate as that of a new born baby and she was unable to count is manually. Its even more frightening when you are already on three beta blockers to supposedly stop this from happening. Thankfully I have an amazing doctor who was quick to change my medication. I went a day without any beta blockers in my system and lets just say it was spent on the couch as standing up caused my highest recorded heart rate of 185....happy to report after an increase of medication my new beta blockers are working well!!!

A highlight of November was my weekend away to stay with a fellow QE patient and her family. We also had a BBQ with another guy who was on our course and his family (I just want to be respectful and keep names private). This was a big step for me and what a lovely weekend we had catching up. There is something so therapeutic being able to talk to people who just 'get it'. 

My final post op appointment in Auckland called for a mother daughter weekend away. Mum and I spent Saturday night in Hamilton and proceeded to walk every inch of Kmart which my body protested in the form of causing my knee to resemble that of a watermelon...no regrets though. 

I heard the words I had been longing to hear from my surgeon ' I am very happy with your progress and recovery'. He was pleased with my movement and healing and again I was left feeling very proud of myself! I did it!!!

After all of this I am so pleased I went through with the surgery and have had such great results. My hand now work a lot better than it did and I know it will keep getting better as I gain more strength as it continues to heal. 


December 

It became clear that during this month there was a sense of relief...relief knowing that I had made it!! 

We had some sad news with our little bird Cleo passing away on the 11th December. Our house sure feels empty without her chirping. 



My plan was to keep myself as well as I possible could up till Christmas. I am so grateful for online shopping and for making an extra effort to be organsied. 

Another saving grace was increasing my Predinsone to 'get me through' the festive season in particular Christmas day. We had a lovely day spent with between both our families and after a few two many wines and beers found ourselves tucked up in my childhood bedroom for the night.  





After such a big day, I spent the next days recovering to celebrate New Year. We saw in the new year with our friends Jamie and Bex with Dan finishing at 10pm which really was the best gift. 

As we sat counting down the New Year and the guys got the fireworks ready I was thinking about 2017 and this quote came to mind 'you will break, but oh you will heal' and that folks perfectly sums up my 2017! 

Thank you, 2017 for the lessons, the gifts, the love, joy, happiness and it might sound funny but thank you for the pain because it made the above that much sweeter. 

I left 2017 surrounded by love and entered 2018 surrounded by just as much love and perhaps that is my greatest blessing! 



Saturday, October 7, 2017

Surgery to fix pesky finger tendons

It is not the strength of the body that counts, but the strength of the spirit
 - J.R.R Tolkien


I attempted to start writing this post last week however soon learnt that typing with one hand was tedious to say the least. I have now advanced to having seven free fingers so lets see how this goes...in advance please excuse any grammar errors in this post. My brain is still feeling pretty foggy. 

Just a little recap in case you have just started following my journey in June I had my first appointment with a hand surgeon in Auckland to talk about the difficulty I was having with my left 4th and 5th fingers. This had been an ongoing issue for about ten years and had just steadily got worse. For me, Lupus has taken a shine to my hands for some reasons which has left my fingers curled and stretched into some pretty unnatural angles.The tendons in my hands have taken a beating to put it lightly. 

After xrays, MRI's and one more appointment his diagnosis was:
incompetent extensor hoods, recurrent subluxations extensor tendon left 4th and 5th MCP joints causing secondary swan neck deformities.

In simple terms when I attempted to make a fist the tendons would slip (sublux) off my knuckles causing pain, swelling and a loud click this was now causing deformities in my fingers due to the stress being put on the tendons. Attempts to improve this will splinting had failed so surgery was my next option.

The video below shows the difficulty I had attempting to make a fist... 



Today I am seventeen days post surgery. 
Seventeen days filled with an array of emotions and new leanings perhaps my biggest being able to put my bra on with one hand!!
Seventeen days of time feeling like its going by so slowly to the realisation that I am now able to achieve more than a shower in my days. 
Seventeen days of swallowing pain medication or being told off for trying to be brave and not to take them. 
Seventeen days of anticipation, relief, pain, nervousness, frustration, tears, comfort, laughter, joy and love so much love! 

By the time it came to my surgery I felt physically and mentally ready. The timing was right and thanks to a three week pain rehabilitation inpatient stay my body felt strong enough to handle a surgery. I was confident I was going in prepared. It was time to get this next chapter started and then closed so I could begin to focus on living and not merely surviving. 

The week before surgery I was lying in bed with Dan and jokingly said  "will you still love me with a bung hand?"  his reply was " hunny you do realsie you already have a bung hand?"

20th October 2017 - Surgery day 

Mum and I traveled to Auckland the afternoon before and spent the night with our friends. Originally I wasn't due to be at the hospital until 2pm so this was going to make for one long day but thankfully the surgery timetable had been changed and now I was due in at 11am. I woke up at 7am and washed my morning medication down with a tiny sip of water. 

I then took a nice long shower and made sure to stop and appreciate being able to use two hands as I washed my hair. 'Soon you will have to do that with one hand' 'Soon you are going to have to ask for help to do that'. 

Mum and I drove into the city and found the hospital; Auckland Surgical Center. We were early so mum suggested we should go for a walk and look at some shops to fill in time. We walked into one shop and were greeted by a bubbly shop assistant who asked how our day was going? I plastered on a smile and said 'good thanks'...that wasn't a lie so far my day was going good lets just hope it stayed that way. 

Mum found some clothes she wanted to try on while I couldn't get my mind off the fact that I was having surgery soon. Mum asked if I was getting nervous and I replied I was okay I just couldn't focus on shopping when I was about to have my hand cut into. Before we knew it it was time to head into the hospital. 

Deep breaths as I walked. I was ready! I can do this! The receptionist greeted us with a cheery smile and proceeded to check me in. I was handed a menu and asked to pick what I wanted for dinner...I was in a hospital not a hotel right? That thought was quickly swept away as I was asked to go into the changing room and put on a gown. We were then taken through into the waiting room where I would now sit until it was time for surgery. I look over at Mum and smile and say ' well here we go again!' The two of us are pretty used to waiting rooms by now. 

I was called in to see the nurse where we went over my extensive medical history. Then she checked my blood pressure and heart rate which once she saw the results informed me I would need an ECG because my heart rate was high. No surprises there! I was then given compression stockings to put on and she even proceeded to shave my arm. 

Next it was the Anesthetist turn to be graced by my complex medical needs. Soon any anxieties I had were quickly replaced with relief. I felt in extremely capable and knowledgeable hands. I am reassured that I will be given enough medication to put me to sleep and keep me comfortable but he will not pump me full of medication. Just the right amount! I am also told he will give me a nerve block in my hand to provide post operative pain relief. I raise the issue of me being on long term Prednisone and he informs me they will give me a stress dose to assist my body and also give me IV antibiotics because I am more at risk of developing infections. 

The final person who comes to see me is my Surgeon armed with his black vivid. He proceeds to outline where he intends to make the incisions. "See you in theater very soon" Then he is gone and we are left to wait until it is my turn. 

Surgery on my 4th and 5th fingers on my left hand to re-balance tendons and repair swan neck deformities


At about 1.30pm I was told that it was now my turn. After a big hug from Mum and few more deep breaths I was taken into theater. I remember as soon as I walked in shuddering with how cold the room was. I was taken by the arm by a nurse and told they had a warm blanket ready for me. I laid on the operating table and was covered in a cocoon of warm blankets. Next I had a headband like device placed on my forehead which was going to measure my brain waves throughout surgery. The Anesthetist assures me it won't tell them my bank account number. Then he is by my right arm and inserts a cannula where I will receive my medicine. The last thing I remember is him saying they are going to give me something to relax and with that it was now up to my surgeon to work his magic. 

The thing I was most nervous about in regards to surgery was how I was going to feel and react to the anesthetic when waking up. I have a vivid memory of waking up after my knee surgery and being in the most horrendous pain then the world going black again (thanks morphine). I then spent that night continuously throwing up and here's one for you being unable to pee which resulted in me having to have a catheter. I think we just reached a new level of sharing! 

This time my experience was the complete opposite I am pleased to report! I wake up in the recovery room and the nurse is bringing me a lemonade ice block. No pain, no nausea...did I even have surgery? I look down at my hand and there is no denying the fact I had surgery. My arm is in a bulky cast but thanks to the nerve block I cannot feel any pain. 

From the recovery room I was taken to my room where I would spend the night. The surgeon comes in and tell me that everything went well. His opening sentence was "well Lupus is a shit disease to get" I reply, "you don't have to tell me that!" The operation was a bit more extensive than he thought and he found my tendons in a worse state than he was expecting. However he was able to do everything he wanted. My operation took just over an hour. I thank him and before I know it I hear a familiar voice and am reunited with Mum. Next thing Mum is taking a photo which is being sent to family and friends to let them know I am okay. We speak to Dad on the phone as he is away at a conference and I assure him I really am doing well. I can almost hear him breathe a big sigh of relief.  




The next friendly face to enter my room was my beautiful best friend Josy! This was one of the major perks of having the surgery in Auckland knowing that I would get to see her. She is quick to tell me this is the best she has ever seen me so soon after a surgery. Then we hear one more familiar voice down the hallway and are joined by Laura. It is so nice to be surrounded by so many caring and loving souls especially while being away from home. 

My dinner arrives and without even having to ask Josy is beside me starting to cut it up. I manage to eat a bit of dinner and before long a wave of exhaustion hits me. I reassure Mum that I am okay and for her and Laura to go and get dinner. It has been such a long day for her as well! Josy says she will stay and get me ready for bed. Mum tells me she is so proud of me and that she will see me in the morning. 

Josy has always had this way of knowing exactly what I need even when I don't know myself. The first step was to brush my teeth and wash my face. See I probably would have stopped there and just got back into bed. Josy suggests I get out of the hospital gown and she will help me put my pjs on. Much better! Then finally I sit on my bed and she plaits my hair. Have I said how thankful I am for her?! The nurse comes in to check my blood pressure and heart rate and I am told I need to lie back for a little while...thanks heart rate! Josy covers me in my blankets and I thank her for everything she has done for me. "Liv I wouldn't be anywhere else". 

I snuggle down and close my eyes but I am conscious of the fact that I am going to be woken at 10pm for my dose of IV antibiotics. I put my headphones in and doze in and out until the nurse arrives. After my antibiotics I am asked 'what is your pain score now?' with a puzzled look on my face I say '0'. I was beginning to feel a bit like a fraud. Here I was just had surgery and I had NO pain while the lady in the room next to me struggled to gain any relief. To say I was thankful for no pain was an understatement. I am reminded that the nerve block will wear off but to enjoy it while it lasted. The only pain medication I was taking was Panadol.

Sleep was pretty hard to find that night but I was expecting that. Between bells ringing, a four hourly Panadol schedule, two lots of IV Prednsione and antibiotics and regular temperature, blood pressure and heart rate checks there wasn't much time to sleep. My cast and all the pillows needed to elevate my arm seemed to take up most of the room on my bed so there wasn't much room for me to get comfortable. 

Early the next morning the Anesthetist came in to see how I was doing and I remember telling him I wanted to take him back home with me. I said to him how much easier the recovery so far had been since I had no reaction to the anesthetic. The nerve block also meant I did not require any heavy duty pain medications which helped prevent the drowsiness and nausea. I ask him if the nerve block will wear off slowly or quickly. I am told it varies; some people will get a tingly feeling and the pain will slowly increase or other people it just goes from not being sore to suddenly you feel everything. I nervously laugh and hope I am not that second person. I am told to stay on top of taking my Panadol and not to just wait for it to get extremely sore because then it is harder to gain control back. 

The Surgeon was next to visit who was pleased I was pain free. I told I am to stay in the cast until I see him in twelve days time where he will take the stitches out and I will then go into a splint. Now it is up to my body to see how I recover. He has done the hard work in giving me the best chance of a better functioning hand and now its my bodies turn to start to heal. 

My breakfast is brought in and this is when I learn my first lesson...The health care assistant places my breakfast in front of me and asks if I would like her to butter my toast without even thinking the words 'oh I can do it thank you' come out of my mouth I then glance down at my hand look at her and laugh and change my answer to 'thank you I will need some help'
Yep...asking for and accepting help does not come naturally for me.  

Mum comes in and is happy to see that I am still in no pain. I decide I want to have a shower before we begin the drive home. The nurse comes in and wraps my hand up in a plastic sleeve and I am given clear instructions by Mum to yell out if I need help. My first one handed shower was successful...get changed was a little harder and something I could not quiet do by myself.  

Before I knew it I had been discharged and was sitting in the car about to travel home and it was only 9.30am! I tell myself to enjoy the feeling of my hand not hurting because as the hours ticked away I knew I was getting closer to it wearing off. I just hoped we could get most of the way home. 

We got two hours into our drive when I could feel my hand start to become achy and throbbing. It was time to get some painkillers on board. Codeine did the trick and then I slept a lot of the way home. 

It was so nice to finally snuggle up in my own bed and be back in my home environment. Now the real healing and recovery can begin. I take immense comfort in knowing I am surrounded by the most amazing amount of love, care and support. 

Turns out I can type quiet well with seven fingers but I will end this post here and my next blog post will continue on with my recovery and explain more in depth what the surgeon did to my fingers...I have just realised that might have not even been explained. I found out specifically what the surgeon did once I got sent my discharge summary so I will include all those details next time. 

Finally I want to thank everyone who sent me messages, prayed for me, thought of me and who were there for me. Surgery is a scary process even when you have done it before but having an incredible support team can truly make all the difference. Thank you! Thank you! Thank you!