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. 

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. 

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! 

How are you? Overwhelmed!

I would be the first person to raise my hand and admit that I love a good inspirational quote. My brother has given me a lot of slack over this. His favourite one to quote back me is 'life is not measured by the breaths you take, but by the moments that take your breath away'. We had that quote on our stairwell until he thought it would be funny to change some of the letters..brothers!
Often when I am unwell I am guilty of searching for these type of quotes on Pinterest as a way of bringing myself motivation and comfort. I was on the other night at goodness knows what hour and found these quotes were beginning to irritate and annoy me which was the opposite of what I was trying to achieve.

Here is an insight into my thought process that night:

Pinterest: Life is not about waiting for the storm to pass but learning to dance in the rain
Livvy: 1) I hate the rain it makes my joints hurt; 2) I can't even stand up so how am I meant to dance!

Pinterest: Choose where your energy goes
Livvy: Or get an autoimmune illness and it will decide for you!

Pinterest: What you allow will continue
Livvy: What?! I just have to not 'allow' lupus in my life and I will be cured?

Pinterest: Just breathe
Livvy: I am bloody breathing!!!

Self care activity fail!
Then the realisation hit me...I am officially in a funk!!

I strive to be an optimistic person; to be positive; glass half full kind of girl but lately im going to be honest I have felt overwhelmingly irritable. Lately Dan's favourite saying is to tell me to take my sassy pants off!

Life has been overwhelming....oh so overwhelming! So now I am going to write it all down and hopefully try to get some of these feelings out of my spinning head ...sorry in advance I don't have the energy to take my sassy pants off! This might be a long post.

I was watching YouTube (yes you spend a lot of time on the internet when you are chronically unwell) before I had my car accident and there was clip of a girl crying because her car got written off and I can distinctively remember thinking 'pffffht really...who cries over a car?!' fast forward a few weeks later I had my accident then guess what I was the girl crying over her car being written off! Not cool universe; not cool! Yes folks my beloved and faithful Echo was written off and is now probably been condensed to scrap metal. RIP! Lesson learnt it turns out you do get attached to cars!

Next was a trip to Auckland to see the hand surgeon on the 8th June about my misbehaving tendons. Again I am reminded of the impact that Lupus has had on my poor joints. I am told this is not a common procedure that he would only perform every two years or so and this is coming from a man who solely operates on hands. It seems the only way to be able to gain relief from these subluxing tendons now is going to be through surgery. He told me he wouldn't be able to give me perfect hands which I laughed off and said as long as they work better than they currently do I will be happy. The plan was for me to get a MRI here at home then he was going to review the results and get me back up to Auckland to make a surgical plan.

Since currently my health has been too unstable for me to be able to hold down even a part time job I have made a constant effort in trying to take back control in manageable ways. One way I am able to do this is through volunteering. I was put in touch with an amazing new community charity who were keen to train me up to be able to become a support worker. I eagerly went along for a day of training on the 12th June and left feeling humbled about getting the opportunity to help out. Mentally I felt re-energised and excited; physically I felt absolutely awful! Yep you guessed it that one day of training triggered a nasty flare. The rest of that week was spent recovering. Since then I have also had to reluctantly had to turn down an opportunity to support a guest due to my own poor health. This never gets any easier trust me.

Lets take a minute to add in some happy news...that weekend we celebrated my wonderful Nanna's 80th birthday. Now Nanna knows how to throw a party and I'm talking juke-box, disco ball, dancing till midnight party. Plus she wore a tiara! She really is my Queen! It was also made extra special by having Josy travel down from Auckland as a surprise. We made such special memories that night.

It never ceases to amaze me what adrenaline and a few glasses of bubbly can do to my body! I danced like every bone in my body didn't hurt and for the night it was amazing to just forget. To just be in the moment. Sadly we know what goes up must come down...my sheer determination and drive won that night but now my body took over. Did I regret it? Not in the slightest! Was the next week hard...you betcha it was!

Monday: was a horrendous pain day! Was up in the shower at 5am trying to gain some relief from blasting myself with hot water. Dad had to drive me to an appointment because I physically couldn't and I had to cancel another. The rest of the day was spent in bed or on the couch. I looked back on photos from Saturday night and wondered how I was still the same person.

Tuesday: I spend all day in bed in preparation for Seasons for Growth group. I had missed last weeks one due to being unwell so was not missing another one. Somehow I got there and pushed through it. Thanks again adrenaline! Then at 8pm I get an unexpected phone call from Dan...can you please come and pick me up I don't feel well? Headache, body ache, fever, shivery and a nasty cough. Hello Flu! After getting Dan in the shower and then into bed I did what any person with a compromised immune system would do, lock myself away in the spare room and pray I wouldn't catch it.

Wednesday: Dan is so sick! I don't think he moved from the couch except to change his t-shirt about five times. Of course that means it's a Netflix day and we basically watch the new season of Orange Is the New Black in one day. At 1pm I had my MRI for my hand. Now this was an experience. I have had plenty of MRI's before so knew what was to be expected. This was a new MRI machine that I hadn't been in before as it was done privately and not through the hospital. I had to lie in an awkward 'superman position' with my hand stretched out and placed firmly in a concoction to hold it still. Once they got me as comfortable as possible and Ed Sheeran was playing through my headphones I was put into the machine and this is when something bizarre happened. As I entered I got this overwhelming feeling of vertigo. I felt like I was rolling off the bed! I then began to reason with myself maybe I'm anxious? Maybe my body is just really uncomfortable in this position? Maybe I'm coming down with Dan's flu? During this scan I think I utilized all my mindfulness and deep breathing exercises. Throughout my time in the machine the tech kept coming in and would try and realign my hand. After about 45 minutes she came in pulled me out and said...'I'm sorry but part of the machine isn't working properly and we cant get clear images so we are going to have to order in a new part and you'll have to come back and be re-scanned'. Shit! I just lay in there feeling so miserable for no reason. By this stage I just needed to get out there before I a) passed out or b) threw up! I made it home to the couch and then slept for a few hours and tried my best to be patient, kind and tend to Dan's needs.

Thursday: Still sleeping in my single bed and feeling quiet proud that I have not caught Dan's flu. Thank you flu jab. My day started nice and early with a hospital appointment to see my rheumatology nurse. There was no sugar coating my health this time. We looked over my long list of failed medication and I had the sinking feeling she was preparing the 'I don't know what's next' speech instead she said ' I think we need to get you a QE hospital admission'. QE Health is an amazing pain rehabilitation hospital in Rotorua. When I was 17 I did a three week and then a two week stay there and it changed my life. We decided that I needed this again to get a fresh set of eyes to renew my case and for me to work on rehabilitating this weary and pain riddled body of mine. I can do this!

Friday: Another early start for round two of my MRI scan. I was nervous this time in case I had a similar reaction so I took an anti-nausea tablet in preparation. I mentioned it to the tech and she said that for some people the magnetic field can affect their inner ears and this is especially the case in newer machines. Brilliant Liv you had to be someone who is experiences this! Again as soon as I was pushed into the machine the dizziness began but this time I was prepared so it was more manageable. This time everything worked as it should and they got all the images.

What a week it was! We have learnt that our household does not function so well when Dan gets sick.It was this weird role reversal which was made harder by the fact that I wasn't well myself but I had not caught his bug so I was happy....until Saturday struck. Hello gnarly headache, blocked ears, sore throat, stuffy nose and cough. What a delightful end to a stressful week. Thankfully mine hasn't been as bad as what Dan got and my body has been able to fight back. Perhaps thanks to my flu jab??

The latest update is I have an appointment to see the hand surgeon on 20th July and my rheumatologist has sent an urgent referral to QE hospital. Busy times ahead!!!


Back to that night when I was on Pinterest and I thought I would give it one more try and this quote appeared on my screen....

"Your story isn't calm. 

The road has been chaotic at times, 

filled with detours and rain and loss so sudden, and too soon. 

Sometimes the bliss was so elevated your heart could hardly hold it. 

Sometimes it was maddening to have, and then to lose. 

You learn soon enough that it hardly ever goes as planned--gentle, easy and smooth. 

But that my friend,is what makes you fascinating.

 You have something to tell.
Something you've walked though.

 Something wild

. Something courageous.

 Something true. 

You're made of stories within stories within even more stories. 

Those quiet depths of you."

- Victoria Erickson

Suddenly in the middle of the night engulfed in a body full of pain I reached out and grabbed Dan's hand and whispered the words 'we are going to be okay'.

Mobility Parking...a perk you don't really want!

This is not my first experience and I know it will not be my last.....

Yes I know I am young and to you look perfectly healthy sitting inside my car. I can see it in your eyes you have already judged me before I have even attempted to move.

I bet you didn't know that as I pull into that park I still to this day get nervous butterflies. I question myself should I park further away; cause more pain but avoid people's awkward stares? I question will someone need this park more than me? Am I in enough pain to use it? Do I have the emotional capacity to deal with the stares and side glances? Because let's be honest I know sometimes you don't mean to stare or judge but I know you are. I can feel your eyes on me. What is possibly wrong with that girl?  

You want the truth...parking close is not a perk and it's not something I enjoy. To me it means that today is a day I cannot blend in...that I blatantly cannot walk far and I'm usually already pushing my boundaries by being out. 

So random stranger just for the record I was not 'abusing' the use of my permit like I could tell you initially thought. Just so you know I saw you lingering around your car. I could almost hear your words even before I had a chance to open my car door.  I felt your eyes on me. I felt them disappear off me once you saw my noticeable limp and the effort I had getting out of the car. I know once you could visibly see me struggling to walk you got into your car. It was like I suddenly got the approval once you saw my limp. We got into the lift and Dan states 'did you see that lady staring?'...Yet again I was judged. 

Do you know what made it worse this time...you were parked in the disability car park next to me!! Were you in pain? Had you just had an operation? What struggle did you have to leave the house? Not that any of those questions are my business! Why did you think it was okay to look at me with judging eyes when you were needing the very same park? My permit was visible so surely that should have been enough...but I know it isn't sadly. 

You know you saw me for a tiny snippet of my day. I know I do not have to justify myself but you didn't see me struggle to get out of bed in the morning.

You didn't see me to make the decision to push through this pain and go to the movies. You didn't know that I had to choose between either more pain but the enjoyment of getting out of the house and spending time with Dan or staying at home and missing out on yet another activity. You didn't see the medication I had to take to ensure I could remain as comfortable as possible. You didn't hear me ask Dan if I should use my disability permit today and you didn't feel my stomach drop as you came out and stared.

In New Zealand to get a mobility parking permit you need to fit the following criteria and have it signed off by a doctor:

1. You are unable to walk and always require the use of a wheelchair, or
2. Your ability to walk distances is severely restricted by a medical condition or disability. If for example, you require the use of mobility aids, experience severe pain, or breathlessness, or
3. You have a medical condition or disability that requires you to have physical contact or close supervision to safely get around and cannot be left unattended. For example, if you experience disorientation, confusion, or severe anxiety. Sourced from CCS Disability

     I think generally people have the understanding that in order to use the park you need to be in a wheelchair and are not aware of the other two criteria. I have found even on crutches I have been questioned about my eligibility to park there.   

     Of course I have my own personal rules as well: I will not park in the parks that are bigger as these are for people who need the extra room to get equipment or wheel chairs out. I will always see if there is a close park that is not a mobility park first and use this first. Lastly I will only use the park when I feel I 'really' need it because of my limited mobility. It is never my first option.  

     I think I need to make to following statement very clear; please remember that not all disabilities are visible and that young people are not immune to the effects of ill health. Sadly you don't have to look far to find stories of people with chronic illnesses being questioned or abused for parking in mobility parks. The following story is of a young women with Lupus who parks in a mobility park and comes back to find this letter on her dash board "You should be ashamed!! When you take a handicap spot an actual disabled person suffers. You were not raised as you should have been.". This needs to STOP!!!

I think it's great if you question people parked there without their permit on display but I really think you cross the line if you start questioning someone if they are eligible to park there if they have a clear permit on display. It's not your place to judge! I might look healthy to you but you do not know the pain that I am feeling inside. Also I do not have to disclose my health condition to you so you can determine whether or not I can park there I have already done this with my doctor. The mere effort of getting out of the house is hard enough so please don't make it any harder! 

So instead of those blatant stares can I please just have a smile to celebrate that fact that I made it out of the house!!! 

Unpredictability

'She felt very young; at the same time unspeakably aged'

 - Virginia Woolf

There is a split second as I transition from being sleep to waking up where I can usually tell what my day is going to be like. 

Same days as soon as I open my eyes I am overcome by pain. 

Those are the days I long to slip back to sleep to escape again. 

Other days I wake up and my first thought is 'thank you body'. 

These are the days when I do not have to automatically reach over to my bottle of codeine;
a day where I have a little more room to breathe;
where I may be productive.

Everyday in that split second I am welcomed by pain it just depends to what degree.

You learn to adapt but you never truly get used to it. 

There are days when I wake up and in that split second before I am fully present in my body 

I can forget about the pain.

 Blissfully unaware of what I am going to face. 

It is heavenly and cruel at the same time.

 It's like a tiny glimpse of being in a healthy body then suddenly it is whisked away 

in a matter of second. 

In my dreams I run, I have endless energy, I feel no pain, 

I am free and then I wake up 

and find myself in a cruel nightmare that I cannot wake up from.

If I had to describe my health at the moment I would use the word 'unpredictable'. One day I struggle; the next I have more energy; the next my pain is really severe; the next I start to feel like my old self again and then I am bed ridden again and all that can happen in one day. It's an exhausting place to be mentally to say the least. I don't know when I open my eyes what I am going to face and things can change within a matter of minutes which leaves me feeling really unsettled and anxious.

Three weeks ago I had an AMAZING week for the first time since I got this nasty infection. I was able to go to work three days! I thought finally I might be seeing a light at the end of the tunnel! Everyone noticed a difference in me but I was cautiously optimistic; I didn't want to jinx myself. Bring on Monday and another working week and I wake up to severe pain that made me physically sick and just like that I was brought down back to earth with a thud! I lay in bed begging the morphine to kick in and take away some of my pain. I switched back to survival mode and became quite despondent. Why? Why let me feel better then put me back here so quickly? Then by Friday I was starting to feel a lot better...see what I mean now!

To my amazement last week I was able to work my full 12 hours! Twelve glorious hours of feeling purposeful and fulfilled. For once my body was playing the game. I was so proud of myself because I knew how hard I worked to get there. If you know me by now and the nature of my illness there is always a but...by the weekend it became clear that my body had been pushed to it's limits and was not impressed with me. The weekend was spent sleeping, resting, recovering in an attempt to gain some sort of wellness for Monday. Monday came and I gave myself a little pep talk ' you can do this!' On went my brave faced as I endeavoured to hide my pain and discomfort. I struggled to focus...a mix of overwhelming pain and fogginess from the pain killers clouded my brain. I am there in person but my mind is else where. I am consumed by the battle being fought in my body. I sit there and day dream about what it must be like not be to in pain...I want to scream do you know how lucky you are that you have a body that isn't attacking itself? I ache with jealously as everyone walks around so effortlessly...do they treasure those precious steps? As fate has it as soon as I write that sentence a group of women run past my dining room window...thanks world!

I 'survived' at work until lunchtime and by the time I got into my car I burst into tears; tears of pain, frustration and tears of sadness. Everything just became hard again. Pain gets stronger, I feel weaker! I came home took some pain medication and sank into my bed. The last few days not a lot has changed. My pain is still flaring and my soul is exhausted. I am longing for those good days to come back or at the moment i'll take a little less pain,..pretty please.

I've had a few specialist appointments lately. I saw my Rheumatologist and we've hit a bit of a bump in the road again with treatment plans and what to do. My case is complicated as over the years I have reacted or found no relief from many medications. The hard thing with Lupus is that medications prescribed are used in other conditions such as Rheumatoid Arthritis,Cancer and in organ transplant patients to prevent rejection. So this leaves us in a trial and error situation. It is daunting looking at my long list of failed medications. The only medication that has ever really helped is Prednisone..again which is far from ideal. We discuss the possibility of a medication called Rituxan as a future possibility. It would not be an easy medication to get at this stage but when the time comes we will cross that bridge. We decided that for now to leave this medication as our 'safety net' which for me is reassuring to know we have an option when the time comes. For now I wanted a rest away from these nasty medication and their frightening side effects. I am so tired of putting these toxic drugs in my body when there is no way to guarantee they will help me anyway. We talked about my extreme fatigue and he stated how that is the hardest symptom to treat. There is no medication to magically take away the fatigue. So like many things I just have to ride it out....He did introduce a new medication called Nortriptyline which I take at night to help me sleep and help with my pain. It does seem to be working a treat so I am thankful for that.

Next on the list was an appointment with my Ophthalmologist to check my eyes. I had begin to notice my eyes felt cloudy and reading was becoming more difficult. As Plaquenil has given me early stage retinal toxicity I immediately made an appointment to see him. Of course this has resulted in more tests being ordered so we can hopefully identify the culprit...I am hoping I just need my prescription in my glasses changed and no further damage has occurred.

Finally I had an appointment with the Oral Surgeon to see about getting a new retainer made for my jaw. I am finding due to my high pain levels lately my jaw has decided to pop in and join the pain party. We think majority of the pain is coming from me clenching my jaw as a result of the pain and grinding my teeth at night. Yet another appointment was made to come back in and get my impressions made for my splint.

Then to wrap it all up I had a letter from my GP asking me to go to MedLab to get bloods taken so she can just check my levels again. I texted Dan from MedLab saying 'I feel like looking after my health is a full time job!'. The more I think about it the more it is true. Living with a chronic illness IS a full time job. Except for the very obvious difference that you don't get paid, you don't get time off, there is no holiday leave and you cant just hand in your resignation when you have had enough. Twenty four hours a day, seven days a week, 23 years living with Lupus has been my full time job.

I always want to bring you a cheery, happy blog post as recently they have understandably been difficult reads. I know it breaks my family and friends hearts to read about this pain and a big part of me feels guilty for that. I just feel that there is healing in me being able to write down my experiences. I struggle to talk about this pain to people...my automatic response is usually 'I'm okay'. I can't sugar coat this though the reality is living with this illness is hard, emotional and raw. I've said it before and I feel like I need to say it again. I don't want you to feel sorry for me or pity me. I strive so hard every day not to let Lupus rule my life. Maybe if anything I just want you to really treasure your gifts you have and don't take a single step for granted. I just want to thank you all from the bottom on my heart for all your kind and support comments. These are the little gems that I hold on to when things are tough.

I guess the beauty is that there is always still hope; hope that tomorrow I will wake up and the pain will be less; hope that this flare will burn itself out quickly; and hope that soon things will be looking up again. That's the nature of this illness you never know what is going to happen. I am extremely thankful that I have had some good days though. It is encouraging that my body still does remember how to have them. For once I am going to be greedy and ask for some more!

 I've got a beautiful life that I want to fulfill and live preferably without this pain!